Wang, Angel He
Wang, Angel He
Wang, Angel He
By
Angel He Wang
BScN, 2015
Ryerson University, Toronto, Canada
A thesis
Master of Nursing
in the Program of
Nursing
I hereby declare that I am the sole author of this thesis. This is a true copy of the thesis, including
any required final revisions, as accepted by my examiners.
I authorize Ryerson University to lend this thesis to other institutions or individuals for the
purpose of scholarly research.
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ABSTRACT
By
Angel He Wang
Master of Nursing, 2019
Master of Nursing Degree Program
Daphne Cockwell School of Nursing, Ryerson University, Toronto
To date, there is no research that explores the user experiences of family caregivers of
persons living with dementia on using mobile applications to support caregiving activities. This
is of particular concern given that limited understandings of the user experience in designing
technology have often led to end-users experiencing barriers in technology adoption and use.
Thus, the purpose of this qualitative descriptive study that used photo-elicitation interviewing
was to explore the experiences of family caregivers of persons living with dementia on using
mobile applications in their caregiving roles. The findings revealed how mobile applications
played an important role in the lives of the caregiver, the care recipient, and both together as a
dyad. This research advances our understanding of the impact of mobile application use in
caregiving and provides direction for future research, policy, education, practice and application
development.
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ACKNOWLEDGEMENTS
My thesis journey would have not been possible without the support of many people, to
whom I am deeply grateful for. To my co-supervisors, Dr. Kristine Newman and Dr. Lori
Schindel Martin, thank you for pushing me to expand my way of thinking in ways I never
thought was possible. My sincere gratitude and appreciation for all that you have done –
especially all the knowledge and wisdom you have imparted on me. I would also like to thank
my committee member, Dr. Jennifer Lapum for her continued support and dedication over the
years. Thank you for your kind words, your attention to detail which inspired me to consider the
small, yet significant, aspects of the research process, and most importantly, your encouragement
for me to be creative. A heartfelt thank you to my thesis committee as this whole journey made
My heartfelt gratitude towards all the wonderful faculty at Ryerson University whom I
had the opportunity to have been in their classes or work with: Dr. Suzanne Fredericks, Dr.
Sherry Espin, Dr. Heather Beanlands, Dr. Jasna Schwind (*heart hugs!*), Dr. Elizabeth McCay,
Dr. Cristina Catallo, and Dr. Coralee McLaren. A special thank you to Dr. Oona St-Amant for
introducing me to the world of research as she was the first professor that offered me a research
assistant position. This important opportunity ultimately cultivated my passion for nursing
research. Another very special thank you to Dr. Charlotte Lee for graciously taking me under
your wings and showing me how to be an amazing educator during my MN practicum. It meant
the world to me when you gifted me my first recorder for my thesis research. You have not only
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I would like to express my deepest gratitude to the participants in this study. Thank you
for sharing your time and experiences with me as they have had a lasting impact on me. Thank
you for participating in the study with such passion, courage, and enthusiasm.
A special thank you to all the individuals and organizations who helped me spread the
word about this research. I sincerely appreciate all the support that you have provided.
I would like to acknowledge and thank the Graduate Studies at Ryerson University,
Network of Ontario, and Canadian Gerontological Nursing Association for their financial
Lastly, and most importantly, thank you to my friends and family for their unwavering
support, patience, and love during this whole journey. Thank you for cheering me on from the
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DEDICATION
To all the caregivers: thank you for all that you do.
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TABLE OF CONTENTS
Page
AUTHOR'S DECLARATION ............................................................................................ ii
ABSTRACT ........................................................................................................................ iii
ACKNOWLEDGEMENTS ................................................................................................ iv
DEDICATION .................................................................................................................... vi
LIST OF TABLES ……...................................................................................................... x
LIST OF FIGURES ............................................................................................................. xi
LIST OF PHOTOGRAPHS ................................................................................................ xii
LIST OF ABBREVIATIONS ……………......................................................................... xiii
GLOSSARY OF SIGNIFICANT TERMS ……………..................................................... xiv
LIST OF APPENDICES ..................................................................................................... xv
PROLOGUE: MY EXPERIENCES OF CAREGIVING ............................................. 1
CHAPTER ONE: INTRODUCTION ............................................................................. 8
PART I: BACKGROUND ...................................................................................... 9
The Impact of Dementia on Canadian Society ....................................................... 10
Family Caregiving to a Relative Living with Dementia ......................................... 12
How Mobile Technologies Have Influences Family Caregiving ........................... 14
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Background: Family Caregiving ................................................................. 33
Part I: Experiences of Family Caregivers of Persons Living with
Dementia ….................................................................................................. 37
Part II: Technology and Caregiving ............................................................ 48
Part III: Understanding the User Experience in the Dementia Context ...... 53
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CHAPTER SIX: DISCUSSION, LIMITATIONS, AND IMPLICATIONS ................ 146
PART I: MOBILE APP USER EXPERIENCES OF FAMILY CAREGIVERS ... 148
Adapting Mobile Apps to Meet Individual Needs of the Dyad ............................... 149
Minimizing the Impact of the Condition on the Person and the Family ................. 158
Determining the Effectiveness of Mobile Apps ...................................................... 168
Study Implications ................................................................................................... 176
PART II: PARTICIPANTS’ EXPERIENCE WITH PHOTO-ELICITATION 182
INTERVIEWING (PEI) ..........................................................................................
Implications for Research ........................................................................................ 185
ix
LIST OF TABLES
Page
x
LIST OF FIGURES
Page
Figure 1. Overview of the interview data collection process employed in this study ................. 70
xi
LIST OF PHOTOGRAPHS
Page
Photo 1. “Technology allows me to be still connected to my family and lessen that gap
between here and there” ...................................................................................................... 101
Photo 2. “Staying connected” .............................................................................................. 102
Photo 3. “Social media keeps you connected to other people; they don’t have to walk in
your shoes because they are already walking in ones that are similar to yours” ................ 104
Photo 4. “Using a reminder to keep you in check of what has to be done, not just for you
but for someone else” .......................................................................................................... 107
Photo 5. “I am sitting somewhere else and I can take care of him sitting really far
away” ................................................................................................................................... 109
Photo 6. “I end up spending a lot more time necessary when I could just be at home and
spend more time with my family” ....................................................................................... 113
Photo 7. “That’s how I kept organized – it was the only way I can mash up my personal
life, my work life, and with having to care for grandparents” ............................................. 115
Photo 8. “A mother’s love” ................................................................................................. 117
Photo 9. “For her, everything goes around music” ............................................................. 119
Photo 10. “You can still bring some new experiences for him, for the person, just with
technology” .......................................................................................................................... 121
Photo 11. “I was using mobile technology like Netflix… We wanted him to stay
engaged” .............................................................................................................................. 122
Photo 12. “He wanted to get me something for my birthday; he ordered it on the app
himself; and I was proud of him” ........................................................................................ 124
Photo 13. “We can spend time as a family and enjoy; rather than slaving two days before
the actual event” .................................................................................................................. 125
Photo 14. “She loves to have that kind of togetherness and the memories” ....................... 126
Photo 15. “Integration is really important especially in caregiving so you can stay
connected to what you were doing no matter what device you are using” ......................... 131
Photo 16. “I would wish there could be an app to know when she is getting off the bus so
that we’re sure she is there, and the bus didn’t make our lives harder” .............................. 135
Photo 17. “Pictures represent memories and I blurred it; I just see myself kind of in her
shoes” ................................................................................................................................... 141
xii
LIST OF ABBREVIATIONS
xiii
GLOSSARY OF SIGNIFICANT TERMS
Family Caregiver In the context of this study, a family caregiver was defined as “an
individual who is providing care, without pay or wage, to a family
member in the following four domains: (1) care management; (2)
assistance with instrumental activities of daily living; (3) assistance with
activities of daily living; and/or (4) emotional and social support.”
Depending on life circumstances and the condition of the care recipient,
family caregivers can range from providing one to four of the care
provision categories.
Health-Related mHealth apps is a category of mobile apps that focus on the provision of
Mobile (mHealth) medical and public health services (WHO, 2011).
Apps
Mobile Apps Mobile apps are software programs developed to run on mobile devices,
such as smartphones, tablets, and laptops, which provide specific
services for the user (Merriam-Webster, n.d.).
Usability For the purposes of this study, the definition of usability provided by the
International Organization for Standarization (ISO; 2018) was used:
“the ability to use a product with effectiveness, efficiency, and
satisfaction in a specific context of use.”
User Experience The definition for user experience put forth by International
Organization for Standardization (ISO; 2010) is the most standardized in
the literature and thus, have been adapted for the purposes of this study.
User experience is defined as “a person’s perceptions and responses
that result from the use a product, system or service.”
xiv
LIST OF APPENDICES
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xv
PROLOGUE
MY EXPERIENCES OF CAREGIVING
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“Healing yourself is connected with healing others.”
– Yoko Ono
experiences, my beliefs, and particularly, what was important to me. This quote by Yoko Ono
persistently surfaced in my reflections as it has been my philosophy and way of thinking since I
was young when I first started my caregiving journey. In this prologue, I reflect on my
experiences in caregiving when I took on three identities: family caregiver, formal caregiver,
My first family caregiving experience started when I was a teenager and this role
continues to this day. I have provided care for loved ones who were experiencing mental and
physical conditions, including major depressive and anxiety disorder, diabetes, heart conditions,
dementia and final stages of cancer. While I reserve going in-depth with the details of all my
caregiving experiences out of respect for the privacy of my family members, I do want to share
briefly my story with Lily (a pseudonym). When Lily fell at home and had to be taken to the
emergency department, my family and I were informed of the devastating diagnosis of stage four
cancer. “We will continue to do more tests and make sure we manage her pain appropriately,”
Lily’s oncologist asserted. While not perfect, I was incredibly grateful for the Canadian
healthcare system from diagnosis to palliative care. The oncology care Lily received for months
in the hospital as well as the palliative care she received at home in her final days was filled with
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However, as a family caregiver, I often felt silent, invisible, and unacknowledged as a
caregiver as I was never asked or consulted about the nature and impact of my caregiving role.
This was particularly salient when I was a young caregiver as I received limited professional
assistance and was left to provide loved ones with intimate physical and emotional support that
neither linear nor static, but rather, fluid and free-flowing. There are ups, downs, and everything
in between. The quote by Yoko Ono elucidates the interdependence between the caregiver and
care recipient in a way that strongly resonated with my experiences and my ways of making
meaning in life. As the need for not only compassion for others, but also compassion for self,
became more evident in my caregiving journey, I adopted a philosophy that emphasized the
reciprocity within caregiving: what we want to heal in others, will in the end be a source of
healing within ourselves. This philosophy, which blossomed out of my family caregiving
After working as a Registered Nurse (RN) for over four years, I have encountered a
variety of patients who are unique in their own ways – making our experience together one of a
kind. Although the general understanding is that nurses are givers while patients are the
specialities, four encounters stand out that illuminate that concept of reciprocity in caregiving.
“Will you be in tomorrow?” is a question that I am often asked by patients and one that I
always cherish no matter how many times I hear it. At times, the answer is yes and the patients’
faces light up, and at times, I reluctantly whisper a no and the patients react in disappointment.
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Even though it is subtle and seen as a small gesture, it is what makes my work as a nurse
worthwhile. Yes, the cards, coffee, cookies, and other treats that patients give to the healthcare
team as a token of appreciation is always touching, but this question is what hits me the hardest.
Always. It is a delicate validation that what I am doing matters and is making a small difference
The importance of holistic care was a concept that was heavily emphasized throughout
my nursing education, but the following experience truly made me understand. I had just arrived
on my shift and noticed my patient, who was living with dementia, in two-point soft restraints.
“He was pulling out his intravenous lines and indwelling catheter as well as trying to hit us as we
were trying to clean him, so we received orders from the doctor to restrain him”, the Charge
Nurse explained. Throughout the morning, he remained restless and vigilant. Then, a
conversation I had with my patient’s granddaughter surfaced in my mind. I remember her saying:
“My grandfather really loves classical music, I always play it for him when I visit him in the
nursing home.” I knew that keeping him in restraints could lead to negative consequences and
thought that I would try playing him some classical music from my phone to help manage his
responsive behaviours. Instantly, I noticed a drastic change in behaviour as he began to focus and
bask in the music. Afterwards, I removed the restraints and gave the granddaughter a call to give
her an update on her grandfather’s status. She was ecstatic that he was no longer in restraints and
offered to bring in her iPod which had a playlist of music he likes as well as an audio-book of his
favourite novel to keep by his bedside. A biomedical focus often predominates in acute care, but
in this occurrence, I was reminded of the significance of considering the psychological, social,
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The intimacy of providing care is something I experience regularly as a nurse, but it was
the following occurrence that put a spotlight on this form of intimacy. I was taking care of a
patient who was quadriplegic (paralysis of all four limbs). Just as my evening shift was ending,
he called to notify me that he was incontinent. “I am so sorry, I know you are done your shift.
This is so embarrassing … the whole bed is wet … I hate burdening you guys to help me with
everything”, the patient said somberly. “It is okay! Don’t worry about it. That is what I am here
for. I will be right back with all the bedsheets and a brief, and I will change you”, I said trying to
reassure him. “Wait … no … don’t. Just change my brief. That’s too much work for you. You
should go, it’s late”, my patient exclaimed. As I was changing the bedding and his brief, I could
sense his feelings of embarrassment and helplessness – something this patient population
unfortunately experiences regularly. I continued to reassure him that he is not a burden and tried
to re-frame his way of thinking. As I was leaving, he softly whispered “Sorry that all I can do for
you is say thank you.” I remember trying not to get too emotional in front of him, and said
Behind the label of “drug addict” was an addictions counsellor. As I was getting
morning report, the charge nurse stated: “Patient has been admitted with congestive heart failure
and he is a previous drug addict … he used a variety of illegal substances, you can find it in his
chart.” This was my first time assigned to this patient. Although it was an acute care setting
where majority of the time I am up and running around leaving minimal amount of time to really
sit and talk with patients, that day was different. I had some downtime in the afternoon and I
decided to check in on this patient. He explained to me his frustrations at the cardiologist and the
healthcare team as they continuously focussed on his history of drug addiction during
coordination of care. He stated, that side of him is “long gone” and now, he is an addictions
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counsellor hoping to help others who are going through what he did. He shared his journey of
addiction, loss, recovery, taking control of his life, and finding meaning in being a counsellor. I
asked, “Do the other staff know this?” He chuckled and said, “No, you’re the first one. Everyone
else just stops at the drug addict part of my life and stays there.” Behind the words on the chart is
a real human being with a plethora of experiences, and at times, healthcare providers much too
often stop at one and attach a label on a patient. This was an eye-opening experience. I can tell
from his experiences that he, too, embraced my philosophy of healing yourself is connected with
healing others.
I was diagnosed with a chronic condition when I was a teenager. As a family caregiver,
my mother took many days off work to take me to specialist appointments, to get my bloodwork
taken, to go to the hospital to get diagnostic tests done, and much more. Although she never
complained, I knew the stresses she faced while caring for me were difficult. Taking days off
work and paying for treatment and medication frequently led to financial challenges. The time
required to provide care often left little time for her to rest and care for herself. And the constant
worries my mother had over my condition at times overwhelmed her emotionally. As healthcare
providers focused on my health throughout the years, I realized that my mother’s needs as a
caregiver were rarely acknowledged or recognized. I knew too well that feeling of invisibility
that my mother was also experiencing. Something that I will always remember was when I had
pneumonia and was recovering at home. Pneumonia further complicated my health given my
chronic condition, and I was essentially bed-bound for days due to fatigue, weakness, and pain.
My mother took a sleeping bag and slept next to my bed on the ground during this time, so she
was easily accessible to me whenever I needed assistance – despite her room being a few feet
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away where she could rest more peacefully in bed. Her commitment and love as a caregiver is
something I will always cherish. I always say, she taught me everything I know about taking
Unique Perspective
I am grateful for these experiences as without them, I would not be who and where I am.
I have navigated the Canadian healthcare system as both a patient and a caregiver, and
experienced firsthand the hardships and beauty in receiving and providing best quality care and
treatment. A pervasive theme in my caregiving experience was the notion of feeling invisible.
This is not exclusive to my experiences, but instead, a common experience among family
caregivers (Applebaum, 2015; Ansello & Rosenthal, 2007; Carmeli, 2014). Family caregivers
frequently feel hidden, isolated, and invisible due to minimal recognition in public policies
(Carmeli, 2014; Gray, Robinson, & Seddon, 2008). Thus, my unique perspective of the current
healthcare system as a patient, a family caregiver, and a registered nurse inspired me to explore
how to best utilize the many facets of nursing practice to improve service delivery and quality of
care. Through this study, I hope to use research to inform and improve care for family
caregivers, who are often the “invisible second patient” (Brodaty & Donkin, 2009, p. 217).
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CHAPTER ONE
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“There are only four kinds of people in the world:
(Former First Lady of United States, Champion for Caregiving, and Founder of the Rosalynn
This quote highlights how caregiving is intricately intertwined into our lives. This life
experience of caregiving is particularly prominent for those who have a family member living
with dementia due to the nature of the condition. In this chapter, I provide a two-part background
on the study phenomenon. In Part I, I first, provide an overview of dementia; second, discuss
family caregiving in the context of dementia; and last, describe how mobile technologies have
influenced the family caregiving experience. In Part II, I situate the study by providing the
problem statement, the research purpose and questions, as well as outlining the significance of
the study.
PART I: BACKGROUND
(Alzheimer’s Disease International, 2010; Alzheimer Society of Canada, 2010; Prince et al.,
2013). The inexorably progressive nature of the symptoms has a significant impact on an
individual’s independence, self-care abilities, daily functioning, and general quality of life,
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making dementia a leading contributor to impairment and dependence worldwide (Alzheimer
Society of Canada, 2010; Alzheimer’s Disease International, 2010; Prince et al., 2013). The most
common type of dementia is Alzheimer’s disease, while other underlying pathologies include
disease, Parkinson’s disease, and Huntington’s disease (Alzheimer’s Disease International, 2010;
On May 29, 2017, a global action plan on the public health response to dementia from
2017 to 2025 was endorsed by delegates at the World Health Assembly (World Health
Organization [WHO], 2017). This global action plan’s objective is to improve the lives of
persons living with dementia, their families, and people who provide dementia care as well as to
alleviate the impact associated with disease on communities and countries around the world
(WHO, 2017). The action plan provides a comprehensive blueprint for action, covering areas of:
lowering the risk of dementia; improving diagnosis, addressing treatment and care; promoting
innovation; and increasing support for caregivers of persons living with dementia (WHO, 2017).
WHO asserts that dementia is a public health priority and is committed to mobilizing
In Canada, there are currently 564, 000 individuals living with dementia, and this number
is expected to double in the next 15 years (Alzheimer Society of Canada, 2017b). According to
the Alzheimer Society of Canada (2010; 2017b), dementia is the most significant cause of
impairment among Canadians aged 65 and older with dementia care costs of $10.4 billion each
year. Alzheimer’s Disease International (2016) reports that the costs for persons living with
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dementia in Canada are estimated to be over five times greater than older people living without
dementia. To keep pace with the shifting demographics whereby 1.4 million Canadians are
estimated to be diagnosed with dementia in the next few decades, dementia care costs are
predicted to increase exponentially to $293 billion per year by 2040 if current practices continue
On June 22, 2017, the passing of Bill C-233, “an act respecting a national strategy for
Alzheimer’s disease and other dementias”, by the Canadian government made Canada the 30th
country to launch a national dementia strategy to address the impact of dementia on Canadian
society (Alzheimer Society of Canada, 2017d, para. 1). This means that the Canadian
government is committed to “actions with definitive timelines, targets, reporting structures and
measurable outcomes” (Alzheimer Society of Canada, 2017d, para. 2). Thus, it is expected that
current practices will change to incorporate potential components of dementia strategies such as
training for healthcare professionals, and sharing best practices (Alzheimer Society of Canada,
2017d). A national dementia strategy will ensure all Canadians living with dementia and their
families have access to the same quality of care regardless of their location, thereby preparing
Canada to meet the challenges associated with dementia with a “coordinated, focused approach
to care and research” (Alzheimer Society of Canada, 2017d, para. 8). In fact, in March 2019, the
Government of Canada announced that they will provide $50 million over five years to fund
Canada’s first national dementia strategy which will be used towards targeted campaigns and
activities focusing on risk reduction and prevention, development of treatment guidelines and
best practices, and investigation of the impact of dementia on Canadian communities (Alzheimer
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Family Caregiving to a Relative Living with Dementia
For the last decade, there have been concerted efforts by policymakers to encourage older
adults to age at home, resulting in aging in place initiatives gaining momentum throughout
Canada (Lilly, Robinson, Holtzman, & Bottorff, 2012). Examples of these initiatives include
Hospital-at-Home (Leff, 2009), Home First (Giosa, Stolee, Dupuis, Mock, & Santi, 2014), and
Aging at Home (Giosa et al., 2014). The First Ministers’ 2003 Accord on Health Care Renewal
shifted government funds to support short-term acute home care and end-of-life services through
cutbacks to long-term care investments for individuals living with chronic health conditions,
such as dementia (Lilly et al., 2012). The role of family caregivers has become an increasingly
critical means of meeting the demands of the aging population in Canada in light of this
changing healthcare climate, limited health system resources and a focus on moving care to the
home (Giosa et al., 2014). There has been a steady decline of formal, paid care utilization, and a
growth in relying on family caregiving (Giosa et al., 2014). In 1997, the number of Canadians
providing care to family members with long-term health conditions was estimated to be 2.85
million people whereas most recently, this figure has increased to over 8 million in 2012
(Canadian Caregiver Coalition, 2014; Giosa et al., 2014; Sinha, 2013). The cost of care would
strain the Canadian healthcare system if not for family members contributing more than $25
billion in unpaid labour annually in caring for their older relatives (Hollander, Liu, & Chappell,
2009).
A high proportion of persons living with dementia require some form of care, ranging
from assistance with instrumental activities of daily living to full support with personal care and
around the clock supervision (Alzheimer’s Disease International, 2010). With persons living
with dementia primarily aging in place and residing at home, family members often become the
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main source of support as unpaid, informal caregivers (Brodaty & Donkin, 2009; Lilly et al.,
2012). In Canada, adult children (58%) and spouses (32%) most commonly take on the role of an
unpaid caregiver of persons living with dementia (Canadian Institute for Health Information,
2018). In fact, up to 90% of in-home care is provided by Canadian family caregivers for persons
living with dementia (Tam-Tham et al., 2016). Family caregivers have been described to be
crucial for maintaining persons living with dementia in the community (Brodaty, Green, &
Koschera, 2003). Family caregivers providing care for persons living with dementia have been
reported to make up for 7% of all Canadian caregivers (or approximately 910, 000 individuals),
making dementia the fourth most common condition to require family caregiving in Canada
(Turcotte, 2013). Currently, there are over 400 million hours in informal, unpaid dementia care
The long-term, progressive nature of dementia places substantial strain and burden not
only on healthcare providers, the healthcare system, and society in general, but most importantly,
family caregivers (Alzheimer Society of Canada, 2010). There is a growing recognition that the
aging in place movement has led to inadvertent negative consequences for some family
caregivers of persons living with dementia (Lilly et al., 2012). Research has also shown that the
current Canadian homecare policy environment has not only failed to adequately address the
health and wellness needs of family caregivers, but also placed them in more desperate
circumstances where they are struggling to receive recognition and adequate services as well as
contributions, modifying existing services, and providing new ways of supports to improve
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outcomes for persons living with dementia and their family caregivers (Prorok, Horgan, & Seitz,
2013; Lilly et al., 2012; Ward-Griffin, 2012). Experts have put forth many recommendations to
address the “dementia epidemic” in Canada – one of which is to provide support to family
caregivers (Alzheimer Society of Canada, 2010, p. 8). As family caregivers of persons living
with dementia have become an integral part of our Canadian healthcare system, attending to their
needs has become a key responsibility, one that can improve outcomes for both the individual
living with dementia and their family caregivers. One uncharted area of support is related to the
Healthcare technology has been developed in order to enhance and supplement care
across the health spectrum, encompassing the body, home environment, community, and
caregiving (Center for Technology and Aging, 2014; Gibson, Dickinson, Brittain, & Robinson,
2015). There has been widespread adoption of technological approaches around the world due to
its ability to enhance the quality of care, improve access to healthcare services, and encourage
patient participation in the management of their own health (Milani et al., 2016; Siminerio,
2010).
Canada 150 and committed $305 million over five years from 2014 to 2019 to help Canadians
take full advantage of the opportunities of the digital age by increasing and improving access to
internet and cell phone services (Government of Canada, 2015a; 2015b). This plan was
formulated with the belief that digital and telecommunications technologies would better enable
Canadians in living more productive and heathier lives (Government of Canada 2015b). In
particular, technology in the form of electronic health (eHealth) – “the application of information
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and communications technologies in the health sector” – is viewed as an essential element of
healthcare renewal by the Government of Canada (2010). The Canadian government has been
making investments in promoting the eHealth agenda with the strong belief that adopting
eHealth systems would result in better outcomes for Canadians by improving the accessibility,
quality and efficiency of the healthcare system (Government of Canada, 2010). Globally, as
advancements in technology continue to progress, more and more developments of powerful and
portable computing devices are taking place – warranting major transformations in the field of
healthcare services provided through mobile devices, due to the changing technological
landscape in Canada and worldwide. The WHO (2011) further describes mHealth as “medical
and public health practice supported by mobile devices, such as mobile phones, patient monitor
devices, personal digital assistants (PDAs), and other wireless devices…” (p. 6). The ubiquity
and widespread use of mobile phones has enabled researchers and clinicians to use them as a
platform for the development of tools and techniques to address geographic barriers, shortage of
healthcare providers, high healthcare costs, and most importantly, inequities and disparities in
health service delivery and access (Iribarren, Cato, Falzon, & Stone, 2017). Current evidence
indicates that mHealth can improve patient care by enabling greater communication between
clinicians, and from clinicians to patients; improving patient knowledge and understanding about
their condition; facilitating greater patient engagement and partnership in their care; reducing
healthcare costs; increasing access to health services; and monitoring patients remotely for
disease management or health maintenance (Gleason, 2015; Moore, 2012; Semple & Armstrong,
2017; Steinhubl et al., 2013). mHealth widens the potential market of healthcare services to a
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broad spectrum of end-users, from those who are motivated and healthy to those who have
efficient and economical method to address issues of caring for individuals with chronic
health applications (mHealth apps) (Bhavnani et al., 2016). Currently, mobile apps are becoming
an ideal and predominant platform in mHealth due to their popularity, increased sophistication,
and connectivity (Iribarren et al., 2017). Because mobile apps can support added functionalities
beyond the basic features of mobile phones (such as short message service [SMS], images, and
videos), their potential for real-time data collection, interactivity, graphic feedback, and links to
social functionalities make it the primary category of mHealth technologies used in healthcare
delivery (Iribarren et al., 2017). It is important to note that a distinction between mobile apps and
mHealth apps exist: mobile apps are software programs developed to run on mobile devices that
provide specific services for the user (Merriam-Webster, n.d.), whereas mHealth apps is a
category of mobile apps that focus on the provision of medical and public health services.
In Canada, the use of mobile devices in the form of smartphones and their apps have
become common as their advanced hardware and software capabilities, comparable to those of
desktop computers, enables the device to perform complex functions to meet the user’s needs
(BinDhim et al., 2014; Lieffers, Vance, & Hanning, 2014). In 2016, for the first time, 75% of
Canadians own a smartphone, and over 30% have at least one mobile app they use for health and
wellness (Canada Health Infoway, 2017; Catalyst, 2016). In particular, one out of every two
Canadian adults under 35 years of age have reported using a mobile app to manage their health
or well-being in the previous three months (Paré et al., 2017). Users have expressed that using
16
mobile apps helps them become proactive in their overall wellness and more equipped when
Family caregivers of persons living with dementia are beginning to leverage available
healthcare institutions, charities and non-profit organizations in field of dementia. For instance,
Alzheimer’s Association (2013) provided a list of mobile apps on their website that can help
both persons living with dementia and their family caregivers. Similarly, other organizations
such as Family Caregiver Alliance (2012), DementiaToday (2016) and Young Dementia UK
(n.d.) have also posted comprehensive lists of mobile apps that are useful for family caregivers to
manage caregiving duties for their loved ones. In Toronto, the University Health Network (2017)
also offers a list of free health and wellness mobile apps for patients and their families. Notably,
funded by the Government of Canada’s Social Development Partnership Program, Sinai Health’s
Reitman Centre for Alzheimer’s Support and Training has developed a mobile app called
“Dementia Advisor”. This app is designed to help family caregivers learn how to manage
difficult behaviours and improve communication and problem-solving skills through interactive,
chat-based role playing (Toronto Central Healthline, 2017). Additionally, more mobile apps in
dementia care were found in the literature targeted towards persons living with dementia and
their caregivers (refer to Appendix A for more details). While there are increasingly more
mobile apps designed for this specific population, little is known about the user experiences of
family caregivers integrating mobile apps into their caregiving activities as no research to date
17
PART II: SITUATING THE STUDY
Problem Statement
The number of family caregivers is expected to rise considering the increasing prevalence
growing effort to leverage mobile apps (a new form of technology) to improve the family
caregiving experience in the dementia context. Despite high and increasing developments in
mobile app technologies, end-users continue to experience barriers in technology adoption due to
poor understanding of the user experience when designing and developing technology platforms
(Cimperman, Brencic, & Trkman, 2016). There is a shift toward family-centered care as persons
living with dementia often rely upon or desire the involvement of family caregivers in care
(Kelly & Wolff, 2015). Thus, it has become critical to incorporate family caregiver perspectives
in care delivery as efforts to promulgate engagement in care must also address the needs of
family caregivers (Kelly & Wolff, 2015). Most importantly, family caregivers must be better
living with dementia and their family caregivers (Kelly & Wolff, 2015). Understanding the
process of how and why family caregivers interact with and integrate mobile apps into their
caregiving roles plays a pivotal role in successful mobile app implementation and thus, should be
at the forefront of mobile app development (Cimperman et al., 2016). By exploring user
experiences with current mobile apps, healthcare providers, researchers and app developers can
better design future mobile apps to be more effective and accepted among family caregivers
Nevertheless, researchers have found that family caregivers (who are often the
gatekeepers, or in other words, people who have the ability to allow access, for technology
18
integration) are often missing during the technology design, development and evaluation process
(Gibson et al., 2015; Kinney et al., 2003; Shreve, Baier, Epstein-Lubow, & Gardner, 2016;
Zapata et al., 2015). This is of particular concern given that a lack of a holistic and
comprehensive understanding of the user experience in designing technology has often led to a
disconnect between users’ expectations and experiences in using such technologies and the
services they provide (Cimperman et al., 2016). Little research has been done to draw a complete
understanding of the family caregivers’ user experiences of mobile apps. Specifically, there is no
research to date that explores the perceptions and user experiences of family caregivers of
persons living with dementia on using mobile apps to support their caregiving activities.
The purpose of this study was to explore and describe the user experiences and
perspectives of family caregivers of persons living with dementia on using mobile apps to assist
with caregiving activities. For this study, the focus was on mobile apps, rather than only the
category of mHealth apps. This focus was adopted because mobile apps are all-encompassing
and the purpose of this study was to understand family caregivers’ use of general mobile apps as
a means to navigate the social world, rather than a limiting exploration of mHealth apps as a
means to navigate medical and public health services. Additionally, research has shown that
technology does not necessarily need to be purposely designed for dementia care as many
mainstream technologies can be adapted by persons living with dementia and their family
caregivers to address their changing needs (Meiland et al., 2017). In other words, some
technologies developed not specifically for dementia can lend themselves well to support this
population (Meiland et al., 2017). As such, it was decided to include the use of all mobile apps in
this study in order to provide a more comprehensive understanding of how mobile apps can
19
address various aspects and needs in the lives of persons living with dementia and their family
caregivers.
The main research question is: What are the user experiences of family caregivers using
mobile apps to assist in caregiving for their loved ones living with dementia in the community?
Research sub-questions include: What are family caregivers’ perspectives on the use of mobile
apps to support caregiving activities? What are the influences that impact the use of mobile apps
for family caregivers? How do family caregivers use mobile apps during their caregiving
activities? What are family caregivers’ experiences of using photographs as a conduit for
The findings of this study offer an understanding of the family caregiver’s experiences of
using mobile apps to support caregiving for a loved one living with dementia. This in turn can
inform future mobile app developments tailored to address caregiver needs of family caregivers.
organizations, policymakers, and healthcare providers as they play a crucial role in developing,
facilitating integration, and improving user experiences to maximize use of mobile apps.
apps can be designed and employed to promote more effective caregiving and improved quality
Support and information from health and social care professionals have been
acknowledged as a key driver of technology use in dementia care (Gibson et al., 2015).
However, family caregivers have expressed that they often receive little practical support as well
as ongoing information and advice from health and social care professionals which has been
20
identified as a major barrier to technology use in this particular group (Gibson et al., 2015;
Newton et al., 2016). As a result, family caregivers are left to devise their own ways of
integrating the technologies into caregiving practice (Gibson et al., 2015; Newton et al., 2016).
Thus, by gaining a better understanding of the interplay of caregiving and mobile apps for family
caregivers of persons living with dementia, health and social care professionals can provide
informed support and information to facilitate full integration of mobile apps within the
caregiver’s routines. Successful mobile app implementation has the potential to not only lower
healthcare costs (Iribarren et al., 2017), but most importantly, contribute to better health
outcomes and quality of care for both the individual living with dementia and their family
21
CHAPTER TWO
PHILOSOPHICAL UNDERPINNINGS
22
“We do not see things as they are, we see things as we are”
This Talmudic saying resonates strongly with my philosophical beliefs as I believe we, as
human beings, see the world not as it is but as molded through the eyes of our prejudices,
previous experiences, and preconceived notions. In other words, what we describe of the world
around us is a reflection of ourselves, our perceptions, and our paradigms. As such, mirroring my
philosophical influences, this study was underpinned by constructivism. In this chapter, I discuss
PHILOSOPHICAL UNDERPINNINGS
Philosophical underpinnings act as the foundation of how individuals think and study
social phenomena. Subsequently, these underpinnings shape the methods and procedures for how
researchers assemble and dissect data (Corbin & Strauss, 2008; Creswell, 2013). In other words,
these underpinnings provide the context and angle from which to approach a particular
phenomenon, including the types of research questions to ask and how to gather data (Creswell,
the pursuit of knowledge fall on a continuum – with extremes representing two distinct
paradigms.
At one end lies the positivist paradigm, which embraces the use of a deductive process of
measuring and analyzing phenomena as the way of knowledge acquisition (Streubert &
historically been the dominant way of what counts as knowledge due to the heavy emphasis on
the quantification of observations in science (Guba & Lincoln, 1998). On the other end of the
23
continuum lies the constructivist paradigm, which posits knowledge generation as a
methodologies are built upon (Streubert & Carpenter, 2011). In qualitative research, the aim is to
understand the human experience by exploring the elements surrounding events with self, other,
and the environment. Notably, qualitative researchers recognize the influence of unique
perceptions of individuals, the concept that people are active beings who construct their own
realities, and the notion that actions, reactions, and interactions are dependent on the views of
The philosophical foundation that underscores this qualitative study is naturalistic inquiry
within the constructivism paradigm. As it is understood through the works of Guba and Lincoln
(1998), constructivism considers all knowledge as reliant on human interactions within a social
context and seeks to undertake research in the natural settings of participants (Appleton & King,
2002). Meaning and knowledge in this worldview is constructed, not discovered (Guba &
Lincoln, 1998). More specifically, knowledge is constructed when an individual interacts with
the world, and thus reality becomes a by-product of human perception. Meanings are negotiated
socially and historically as they are formed through interaction with others, historical and
cultural norms that operate in individuals’ lives, and their environment (Creswell, 2013; Guba &
environmental and social influences that impact their experiences, behaviours, and thinking
(Crotty, 1998). Ultimately, this mode of inquiry explores the “labyrinth of human experience as
24
people live and interact within their social worlds” and seeks to understand the diverse
Philosophical Assumptions
Creswell (2013) specified four philosophical assumptions that shape and guide qualitative
research, as well as form the basic belief systems known as paradigms. These assumptions are:
assumptions are what constitutes my philosophical perspective, and informed every step of the
The ontological assumption speaks to the nature of reality and its characteristics
(Creswell, 2013). In qualitative research, the ontological stance is one that embraces the notion
relativism, which assumes that realities are socially and experientially based, as well as in the
form of multiple and apprehendable mental constructions (Guba & Lincoln, 1998, as cited in
Creswell, 2013). This is consistent with my own ontological assumption which is centered on the
present diverse perspectives and qualitative researchers aim to report such multiplicity. In this
study, this can be seen in the use of multiple forms of evidence in themes showcasing words of
knowledge is known (Creswell, 2013). In qualitative research, knowledge is known through the
perceptions (Creswell, 2013). Qualitative researchers aim to become immersed in the data, lessen
the distance between researcher and participants, and study participants in their natural setting.
25
Through the close interaction between researcher and participants, the researcher becomes an
“insider” (Creswell, 2013, p. 37) and an active player in the research process. In congruence, the
knowledge as created in interaction between researcher and participants (Guba & Lincoln, 1998,
as cited in Creswell, 2013). The end result is a partnership between the researcher and
participants in creating knowledge as the researcher co-creates with the participants. In this
study, I aimed to develop close interactions with participants as the participants and I are
interlocked in an interactive process where we influence each other. The use of follow-up
interviews that involved photo-elicitation interviewing also helped to lessen the distance between
the participant and I as this method allowed me to gain a richer understanding of their
experiences.
The axiological assumption pertains to the role of values in research (Creswell, 2013). As
participants have values and are studied in their natural environments without the control or
their gathered data (Creswell, 2013). Qualitative researchers often “position themselves” in the
study by discussing their values and biases, thereby recognizing their role as a research
instrument since their values are intricately woven into the research data, analysis and findings
(Creswell, 2013). I recognize that I cannot evade affecting the phenomenon under investigation
and that I must acknowledge my positioning as only through subjective interpretation can an
understanding of the phenomenon be uncovered. In other words, the study findings were socially
constructed not only by the participants, but also by my role and contribution as a researcher. In
this study, I acted as the primary data-gathering instrument (Lincoln & Guba, 1985) and thus, it
was imperative that my positionality as a researcher was described in depth in the prologue to
26
make my existing beliefs and assumptions overt to myself and the readers (Creswell, 2013;
2013). This approach is also markedly shaped by the researcher’s experiences in data collection
and analysis (Creswell, 2013). The inductive nature allows for assembling data from the ground
up as opposed to data being handed down entirely from a theory or the perspectives of the
solely through interaction between researcher and participant (Guba & Lincoln, 1998). The
varying constructions are “interpreted using conventional hermeneutical techniques, and are
compared and contrasted through dialectical interchange” (Guba & Lincoln, 1998, p. 207, as
cited in Creswell 2013). Thus, flexible emic-focused strategies (i.e. in-depth semi-structured
interviews) were used to allow participants to share their constructions of the phenomenon under
investigation due to the emergent nature of the study. In addition, an inductive and iterative
approach to data analysis was used to promote interpretation of the data from the ground up.
complex interplay that helps to form, develop, and alter a person’s constructions of any
phenomena (Appleton & King, 2002). Guided by constructivism, the purpose of this study was
not to seek broad generalizable “truths” since many realities exist as individuals attribute their
own interpretation and meaning to the phenomenon of interest. Instead, this mode of inquiry
gives me the opportunity to understand the variety of constructions that individuals possess,
aiming to achieve some consensus of meaning (Appleton & King, 2002). Through this study, I
27
strove to develop and present an understanding of the experiences of family caregivers by
28
CHAPTER THREE
29
“What good is the most sophisticated, well-developed technology intervention if the end-user
technology (also known as gerontechnology), poses this question in her 2010 paper to emphasize
the need to understand and include end-users in the design, development, and evaluation process
influenced the approach I took to reviewing the literature as I particularly sought out literature
that explored experiences of family caregivers through qualitative methods. This is not to say
that quantitative studies were not included in the review, but rather, it was important to
understand the current state of knowledge of the chosen phenomenon in the qualitative paradigm.
Given that majority of the research on mobile apps, technology, and user experiences are
predominantly underpinned by the positivist paradigm, this literature review sheds light on the
existing gap in the literature with respect to exploring the user experiences of family caregivers
I focused my review and synthesis of the extant literature on three main areas in order to
gain a comprehensive understanding of the interplay of mobile apps and family caregiving in the
dementia context. Thus, the literature synthesis in this chapter is organized into three sections:
(1) Experiences of family caregivers of persons living with dementia; (2) Technology and
caregiving; and (3) Understanding the user experience in the dementia context. It was important
to first review and synthesize the literature related to experiences of family caregivers unique to
the dementia context in order to gain an understanding of how various forms of technologies,
30
particularly mobile apps, can support and improve their caregiving experiences. Hence, in the
first section, I reviewed recent research to identify salient themes that characterize the experience
of family caregiving in the dementia context. In the second section, I reviewed the literature on
technology in caregiving in general and then focused more closely on mobile apps in particular.
Last, I reviewed and discussed research on the user experiences of family caregivers for
The search strategy and literature review framework as described by Kable, Pich and
Maslin-Prothero (2012) was adapted for the purposes of this study and used to guide the
literature search. The complete adapted version of the framework can be found in Appendix B.
A critical review of the literature was conducted and focused on the main grounding questions:
(1) What is the current state of knowledge on family caregiving for persons living with
dementia?; (2) What is the existing knowledge on technology and caregiving?; and (3) What are
the user experiences of family caregivers using technology and mobile apps?
In concordance with the framework, a systematic search was conducted which initially
included literature from the following databases and search engines: Cumulative Index to
Nursing and Allied Health Literature (CINAHL), Evidence Based Medicine Reviews, Medline,
Nursing and Allied Health Database, PubMed, and Scholars Portal Journals. IEEE Xplore, an
additional database in the field of information systems management was searched afterwards to
gather more information on mHealth, mobile apps and user experience. Grey literature that met
The inclusion and exclusion criteria were informed by the PICO (Population,
31
acronym as defined by the Joanna Briggs Institute (2011) for use in quantitative and qualitative
studies, respectively. The inclusion criteria consisted of: English language, full text, studies
published from 1997 (inclusive) to present, empirical studies from any geographical location,
and articles from peer-reviewed journals. Of note, the literature review was conducted in 2017
and at the time, it was decided to search for articles within the last two decades to account for
any seminal works on caregiving in the dementia context; thus, the inclusion criteria of year
1997 to present. Appendix C provides a more detailed outline of the inclusion and exclusion
criteria employed for the literature review search. Keywords and subject headings used to search
the scholarly databases include family caregiver, carer, informal caregiver, caregiving, dementia,
Alzheimer’s disease, mHealth, technology, mobile health, mHealth apps, smartphone, mobile
applications, user experience, and user perceptions. The Boolean operators, OR and AND, were
used to include alternate, synonymous terms and to join two key terms respectively. The search
strategy involved screening titles and abstracts for relevancy for the intended study. The relevant
articles were reviewed in their entirety along with their respective reference list to capture any
The Google search engine was also used to find grey literature by employing the listed
keywords. The inclusion criteria comprised of: English language, full text, published from 1997
organizations. Given that it is impossible to screen all retrieved results from Google searches, I
relied on the power of relevancy ranking within Google search engines to bring the most relevant
results to the top of the list (Godin, Stapleton, Kirkpatrick, Hanning, & Leatherdale, 2015). I set
the number of pages to be screened at five pages to ensure feasibility and consistency across
32
searches. The first five pages of each search’s hits (representing 50 results) were reviewed, by
The initial search from January 2017 to January 2018 generated 14,041 relevant articles
in the scholarly databases and 200 relevant grey literature documents in the Google search.
Using the same search strategy, another systematic search was conducted in June 2019 to update
the literature review to include any literature that was published from January 2018 to June 2019.
This second search generated 5511 relevant articles in the scholarly databases and 200 relevant
grey literature documents in the Google search. After both searches, 147 final papers (with 5
from grey literature) were selected by evaluating the degree of relevance to the chosen
phenomenon and the quality of the article by using the Critical Appraisal Skills Program (CASP;
2017) checklists. Refer to Appendix D for the PRISMA flow diagram summarizing my search
strategy and Appendix E for a chart outlining all the references selected. Last, the reference list
was checked for accuracy and web links accessed were updated.
Formal caregivers, paid employees or volunteers connected to the social service and/or
healthcare delivery systems, were the main acknowledged human health resource until the 1980s
when the concept of family caregiver emerged to describe individuals who were caring for
family members in their homes (Farran, 2002; Llanque, Savage, Rosenburg, & Caserta, 2016).
Research demonstrated that informal networks –predominantly family members– are the first
resort as caregivers when a person encounters declining health (Chappell & Funk, 2011). It is
worth mentioning that informal caregiver, at times used interchangeably with family caregiver in
the literature, is a more inclusive term referring to help provided by all non-professional
33
providers of care, including family members, friends, and neighbours (Schumacher, Beck, &
Marren, 2006). In contrast, family caregiver refers to care provided within families. Other terms
found in the literature that are associated with family caregiving include carers and family carers.
For instance, Australia and the United Kingdom use the term “carer” to describe care delivered
in a family setting (British Columbia Law Institute, n.d.). However, “family caregiving” remains
the term most commonly used in Canada to capture unpaid care provided by family members at
home (British Columbia Law Institute, n.d.). Additionally, as compared with the alternatives, the
term “family caregiver” is used in this study because what the word “carer” represents has been
described to be too broad as British Columbia Law Institute (n.d.) argues that “we may care for
many people for whom we are not performing any caregiving activities” (p. 21). In other words,
caregiving denotes an action which emphasizes on the actual act of providing care.
Two key reasons that placed family caregiving at the forefront of healthcare are the
increasing numbers of individuals living longer and experiencing chronic conditions for a longer
period of time as well as the changes in the healthcare delivery system (Farran, 2002).
combined with new technologies has both significantly increased the number of individuals
being cared for at home and also transformed the nature of the care provided (Armstrong & Kits,
2001). As care recipients remain at home in increasingly more complex conditions, the home
may assume responsibilities typically ascribed to professional providers (Farran, 2002; Scott,
2001).
The types of caregiving and provision of care are described in various ways. Family
caregivers provide a wide range of care which can be categorized into two broad areas:
34
instrumental care and “invisible” work (Bowers, 1987; Schumacher et al., 2006; Scott, 2001).
caregiving, that is, the hands-on responsibilities (Bowers, 1987). These responsibilities are
comprised of: (1) assisting with activities of daily living such as bathing, eating, and going to the
washroom (Farran, 2002; Schumacher et al., 2006); (2) helping with activities requiring
problem-solving skills, clinical judgment, and technological care such as carrying out treatment
regiments and managing home dialysis (Schumacher et al., 2006, Scott, 2001); and (3)
supporting of activities requiring organizational and communication skills such as navigating the
healthcare and social services systems (Schumacher et al., 2006). Similarly, in terms of what
constitutes as “provision of care” in the family caregiving context, Armstrong and Kits (2001)
described that the care provided by family caregivers can be delineated into four broad,
overlapping categories. These categories include: (1) care management (e.g. identifying and
arranging formal care services, and managing finances); (2) assistance with instrumental
activities of daily living (e.g. cooking, shopping, and household tasks); (3) assistance with
activities of daily living (i.e. direct help with much more personal and medical aspects of care,
such as dressing, bathing, eating, and medication administration); and (4) emotional and social
support. The number of care provision categories that family caregivers undertake is dependent
on life circumstances of the caregiver and the condition of the care recipient.
Bowers (1987) conducted seminal research into the concept of “invisible” work in
caregiving to expand on the range of care provided by family caregivers. Bowers found that in
addition to the traditional forms of caregiving, family caregivers also engage in “invisible” work
which is less recognized and acknowledged. Bowers’ study asserted the existence of four more
35
behaviours or decisions based on the anticipated, possible needs of the care recipient. Second,
preventive caregiving includes activities for the purpose of preventing illness, injury, and
complications through active monitoring and supervising. Third, supervisory caregiving includes
active and direct involvement of the caregiver such as checking up on and arranging care for the
care recipient. Lastly, described as one of the most difficult, yet important, types of care
provided, protective caregiving’s purpose is to protect the care recipient from threats to their
self-image and self-perception as competent and independent. Caregivers also frequently attempt
to protect the care recipient from becoming aware that they are being taken care of.
other forms of caregivers, were chosen as the focus of this study. In the dementia context, it is
emphasized in the literature that much of the caregiving responsibility falls on family caregivers
where the spouse being the most likely, followed by children and siblings (Etters, Goodall, &
Harrison, 2008; Yap, Seow, Henderson, & Goh, 2005). Most persons living with dementia
depend on their family caregivers to maintain in the community (Tam-Tham et al., 2016).
Notably, family caregivers of persons living with dementia provide up to 90% of the care
received in the home in Canada (Tam-Tham et al., 2016). As such, family caregivers play a
unique and instrumental role in the overall management of dementia (Yap et al., 2005). They are
an important source of information for the clinical assessment of the persons living with
dementia as decisions made on how to best provide care for the them is often dependent on the
information provided by the family caregiver (Yap et al., 2005). Importantly, the health
outcomes and well-being of the persons living with dementia and the family caregiver are closely
linked (Yap et al., 2005). Particularly, researchers found that kinship ties are associated with
caregiver outcomes wherein closer kindship ties lead to increased caregiver burden (Etters et al.,
36
2008). Furthermore, the type of management strategies adopted by the family caregiver can
impact the persons living with dementia’s behaviour and well-being (Yap et al., 2005). For these
reasons, researchers assert that there are always two clients in dementia care: the persons living
The characteristics of a degenerative disease such as dementia often change the relational
context between the caregiver and care recipient as caregivers experience a fundamental change
in the loved one they are caring for, including changes in cognitive function and personality
(Shim, Barroso & Davis, 2012). As a result, family caregivers of persons living with dementia
describe a wide spectrum of caregiving experiences which are organized in this section as the
following themes that emerged from the literature review: (1) Challenging aspects of caregiving;
(2) Positive aspects of caregiving; (3) Coping with family caregiving; (4) The influence of type
of kinship on caregiving experiences; (5) Interdependency of the family caregiver and care
It was contended in the literature that while family caregivers of persons living with
dementia possess some of the same characteristics as general family caregivers, there are greater
effects on the former group in a variety of important domains (Ory et al., 1999). Clyburn and
colleagues (2000) identified three dominant factors that contribute to challenging caregiving
experiences unique to dementia: (1) care recipient factors (e.g. physical and cognitive decline,
personality changes, and neuropsychiatric symptoms); (2) caregiver factors (e.g. caregiver’s
personality, cultural beliefs, perceived resources, and coping strategies); and (3) caregiving
37
Persons living with dementia generally require high levels of care associated with long care
hours and physically demanding caregiving (Brodaty & Donkin, 2009). Studies have found that
25% of family caregivers of persons living with dementia provide 40 hours of care or more per
week as opposed to the 16% for other caregivers of non-dementia related conditions (Brodaty &
Donkin, 2009). Similarly, in Canada, the Canadian Institute for Health Information (2018) found
that informal caregivers of persons living with dementia spend an average of 26 hours a week
providing care compared to 17 hours for informal caregivers of older adults living without
dementia. According to Ory and colleagues (1999), not only are caregivers of persons living with
dementia more involved in caregiving with respect to hours of care per week, but also with the
number of activities of daily living and instrumental activities of daily living tasks with which
Given that caregivers of persons living with dementia provide more care and assist with a
greater variety of activities than other caregivers, they are affected more negatively by their
caregiving role when it comes to employment complications, mental and physical health
problems, caregiver strain, family conflict, and decreased time for leisure (Connell, Janevic, &
Gallant, 2001; Ory et al., 1999). In terms of psychological well-being, Schoenmakers and
colleagues (2010) found in their systematic review of 14 articles that the prevalence of
depression in caregivers of persons living with dementia is significantly higher than in socio-
dementia related chronic illnesses or with a psychiatric diagnosis. Data from a more recent,
cross-sectional study conducted by Karg and colleagues (2018) also indicated that informal
caregivers of persons living with dementia experienced greater levels of caregiver burden, poorer
mental health, and lower care-related quality of life when compared to informal caregivers of
38
people with other chronic conditions. Similarly, del-Pino-Casado and colleagues (2019) found in
their systematic review and meta-analysis of 55 studies that caregivers of persons living with
dementia experience greater caregiver burden than those caring for frail older adults or stroke
survivors. Confirming the trend in the literature, the Canadian Institute for Health Information
(2018) reported that informal caregivers of persons living with dementia are more likely to
experience distress than informal caregivers of older adults living without dementia.
Ory and colleagues aptly asserted that the unique experiences of caring for a loved one
with dementia is attributed to the greater caregiver strain as they often have to contend with
behavioural and psychological symptoms of dementia (BPSD) in the care recipient and the
consistent with the findings from the Canadian Study of Health and Aging whereby the care
(Hebert, Dubois, Wolfson, Chambers, & Cohen, 2001). Researchers have found a significantly
higher prevalence of interrupted sleep in caregivers of persons living with dementia when
compared to other caregivers (Capistrant, 2016). This is also supported by numerous studies as
they reported that caregiving in the dementia context is more stressful than caring for an
individual with a physical disability (e.g. Brodaty & Donkin, 2009; Lilly et al., 2012) and
caregivers of persons living with dementia were found to suffer increased levels of emotional
distress associated with higher behavioural symptoms and cognitive impairment (Crespo, Lopez,
Relative to other family caregivers, family caregivers of persons living with dementia are
more vulnerable to social isolation, psychological and physical morbidity, and financial
39
recipients (Brodaty & Donkin, 2009; Lilly et al., 2012). Caregivers of persons living with
dementia often experience feelings of social isolation due to the lack of social contact and
support as they tend to sacrifice their leisure time and pursuits, restrict time with friends and
family, and give up or reduce employment commitments (Brodaty & Donkin, 2009).
Furthermore, in the Canadian context, Alzheimer Society of Canada (2010) argued that the
hidden unpaid costs borne by caregivers are substantial as indirect costs include hours spent
The research linking caregiving in the dementia context to negative health outcomes has
been consistent as strain and burden can manifest as psychological and physical morbidity
(Brodaty & Donkin, 2009; Connell et al., 2001). When compared to other caregivers, caregivers
of persons living with dementia experience significantly higher levels of psychological distress
and stress as well as significantly lower levels of self-efficacy and subjective well-being
(Brodaty & Donkin, 2009). There are also increased risks for depressive symptoms (Connell et
al., 2001), a higher prevalence of clinical depression and anxiety (Connell et al., 2001;
Madaleno, Moriguit, Ferriolli, De Carlo, & Lima, 2019), and increased psychotropic drug use
among caregivers of persons living with dementia (Connell et al., 2001). With respect to physical
morbidity, caregivers of persons living with dementia are at an increased risk of various health
issues such as cardiovascular problems, lower immunity, slower wound healing, decreased
engagement in preventative health behaviours, higher levels of chronic conditions, more doctor
visits and use of prescription medications, and greater likelihood of poor sleep patterns (Brodaty
& Donkin, 2009; Van Mierlo, Meilan, Van der Roest, & Droes, 2011).
40
Positive Aspects of Caregiving
Much of the existing caregiving research documented the negative aspects of caregiving,
but the positive aspects of caregiving have recently received increased attention in the literature
(Hunt, 2003; Lloyd, Patterson & Muers, 2016; Peacock et al., 2010; Schumacher et al., 2006). In
fact, there is emerging evidence suggesting that the adaptation process of caregiving is
characterized by the coexistence of both positive and negative experiences (Andrén & Elmståhl,
2005; Yu, Cheng, & Wang, 2018). Positive conceptualizations of the caregiving experience
include uplifts of caregiving, caregiver satisfaction, caregiver esteem, finding or making meaning
through caregiving, feeling a reciprocal bond, spiritual and personal growth, enjoying
togetherness, and feelings of accomplishments and mastery (Brodaty & Donkin, 2009; Hunt,
2003; Lloyd et al., 2016; Peacock et al., 2010). Notably, researchers suggested that seeking
meaning from the caregiving situation which may bring feelings of helplessness, anxiety, or
isolation is a choice that a caregiver can make (Shim et al., 2012). An increasing number of
studies indicated that finding meaning in caregiving, also known as enrichment, is an effective
method that leads to more positive experiences (Shim et al., 2012). Researchers have also found
that some caregivers find gratification through perceiving their loved one living with dementia as
reciprocating simply by the virtue of their continued existence, which often leads to better health
outcomes for the caregiver (Shim et al., 2012). In the literature review conducted by Yu and
colleagues (2018), four key domains of positive aspects of caregiving were found: (1) a sense of
personal accomplishment and gratification; (2) feelings of mutuality in a dyadic relationships, (3)
an increase in family cohesiveness and functionality; and (4) a sense of personal growth and
purpose in life. Based on what is presented in the literature, perhaps the experiences of family
41
caregiving, whether it is positive or negative, should not be considered at bipolar ends on a
caregivers often rely on a complex and dynamic set of cognitive, affective and behavioural
coping responses to maintain psychological fortitude, regulate their emotions, and solve or
improve the practical problems they face (Gottlieb & Wolfe, 2002). In a review of the qualitative
literature, Lloyd and colleagues (2016) found that experiencing caregiving as positive was
influenced by factors such as acceptance of or coming to terms with the situation, adapting a
positive caregiving attitude, maintaining commitment to their relative, and drawing strength from
various sources and supports. Other studies have shown that caregivers often adopt emotion-
focused coping strategies, such as emotional support, acceptance, humor, positive reframing, and
religious support, which can lead to improved caregiver outcomes (Cooper, Katona, Orrell, &
Livingston, 2008; Gallagher et al., 2011). In contrast, other researchers have found that problem-
focused coping strategies, another form of coping wherein the caregiver acts to change their
relationship to the stressor, was associated with caregiver well-being, positive outcomes, and
lower psychological distress (Di Matteri et al., 2008; Kneebone & Martin, 2003). Caregiver
coping resources identified in the literature include the individual (e.g. finding meaning,
accepting reality), family and friends, and professionals or formal service agencies (Sun, 2014).
Considerable literature addresses how caregiving experiences in the dementia context can
differ based on the type of kinship between the caregiver and care recipient. Majority of research
focused on the differences between spousal and adult child caregivers. Pinquart and Sorensen
42
(2011) suggested that the differences in caregiving experiences can be attributed to the fact that
spouses are more likely to be older, married, living with the care recipient, have less competing
responsibilities, and possess a different emotional relationship with the care recipient when
compared to adult child caregivers. Similarly, Conde-Sala and colleagues (2010a) contended that
spouses often regard caregiving as parcel of the marital commitment and thus, the caregiving
role is assumed more naturally without resulting in strong feelings of burden. Other researchers
also noted that spouses view caregiving as normative and part of their marriage vows (i.e. “in
sickness and in health”) whereas adult child caregivers experience the burden of role reversal and
view caregiving as a significant change to their lives (Chappell, Dujela, & Smith, 2014; Conde-
Sala, Conde-Sala, Garre-Olmo, Turro-Garriga, Vilalta-Franch, & Lopez-Pousa, 2010b; Lee &
Smith, 2012).
Although the caregiver relationship to the care recipient is often reported as amongst the
potential factors impacting the caregiving experience, findings of studies have been inconsistent
and conflicting. In some studies, researchers found that adult child caregivers experienced higher
levels of burden due to having multiple demands and competing responsibilities, such as
maintaining a job and caregiving for children of their own (Ashwill, Mulhall, & Johnson, 2015;
Chappell, Dujela, & Smith, 2014; Conde-Sala, Garre-Olmo, Turro-Garriga, Vilalta-Franch, &
Lopez-Pousa, 2010a; Conde-Sala et al., 2010b; Reed et al., 2014; Springate & Tremont, 2012).
The authors noted that spousal caregivers, in contrast, adapt with the incremental changes in
disease severity and gradually adjust to this way of living. Conde-Sala et al. (2010b) found that
adult child caregivers would experience notable generational differences with regards to the care
recipient and may feel more emotionally distant whereas spousal caregivers would be closer,
both physically and emotionally, to the care recipient. As a result, their study results showed that
43
spousal caregivers had a more positive perception of their quality of life than adult child
caregivers.
In contrast, other researchers reported that spouses experience more burden than adult
child caregivers (Andrén & Elmståhl, 2008; Hong & Kim, 2008; Kim, Chang, Rose, & Kim,
2012; Ott, Sanders, & Kelber, 2007; Rinaldi et al., 2005). According to Ott and colleagues,
spousal caregivers experienced more sadness and longing, worry and isolation, and personal
sacrifice burden than adult child caregivers. Kim and colleagues (2012) explained that higher
levels of burden were not unexpected as the spouse tends to live with the care recipient, provide
more hours of caregiving, and experience greater physical and emotional closeness to the care
recipient. Other researchers suggested that spousal caregivers may have greater perceived burden
of care due to their own declining health and aging as they often suffer age-associated chronic
illnesses which makes providing care more difficult than an adult child (Hong & Kim, 2008;
Rinaldi et al., 2005). Despite the conflicting findings amongst studies, what is consistent
throughout the literature is that caregiving experiences can differ based on the nature of the
kinship. As such, the caregiver’s relationship to the care recipient should be considered when
Family caregiver well-being is a crucial facet of dementia care given that the care of the
individual living with dementia is often dependent on the family member who provides the care.
Researchers have emphasized that the well-being of the family caregiver can directly impact the
health outcomes of the care recipient (Lilly et al., 2012; Lwi et al., 2017; Papastavrou et al.,
2007; Quinn et al., 2019). Family caregivers who report higher levels of positive aspects of
caregiving experience lower levels of depression and anxiety as well as decreased impact of the
44
behaviours of the persons living with dementia on their emotions (Lloyd et al., 2016).
Additionally, those who expressed higher satisfaction with caregiving were also less likely to
institutionalize their loved one living with dementia (Lloyd et al., 2016).
On the contrary, due to the extensive care that caregivers of persons living with dementia
provide, decreased caregiver health and quality of life often translate to poor outcomes for the
family member living with dementia and earlier admission to institutional care (Lilly et al., 2012;
Papastavrou et al., 2007; Vandepitte et al., 2018). Research has shown that high caregiver stress
was associated with lower quality of life reported by persons living with dementia (Quinn et al.,
2019). Lwi and colleagues (2017) also found that caregivers of persons living with dementia
oftentimes experience declines in mental health, a factor that predicted greater care recipient
mortality even when accounting for key risk factors in care recipients (e.g. diagnosis, age, sex,
(2019), the findings indicated that informal caregiver distress is commonly associated with
important care recipient health outcomes, including elder abuse, worsening behavioural and
keeping with the literature, data from the Canadian Study of Health and Aging showed that
severe caregiver burden is significantly associated with institutionalization of the care recipient
(Hebert et al., 2001), a finding that is supported by Alzheimer Society of Canada (2010). As
such, maintaining the caregivers’ health will be crucial to support the needs of this growing
population. Efforts to identify and reduce poor caregiver outcomes have become an important
45
Need for Support
It is suggested in the literature that providing caregivers with adequate supports to meet
their caregiving needs can expand coping skills, decrease caregiver burden and loneliness,
improve attitudes towards the care recipient as well as enhance caregiving competence and
confidence – which ultimately can foster positive caregiving experiences and improve caregiver
outcomes (Stewart et al., 2006; Van Mierlo et al., 2011). According to Novais and colleagues
(2017), through their systematic review of quantitative and qualitative studies, they found that
family caregivers’ need for support can be categorized into five main areas including: (1)
emotional support for the care recipient and the family caregiver; (3) social support, including
institutionalization, financial and legal issues, respite and day care, community services related
to home support; (4) psycho-educational support, such as coping with behavioural and
psychological symptoms of dementia, communication with the care recipient, stimulating and
appropriate activities, and caregiver training; and (5) other support needs, including
Researchers have indicated that programs and interventions tailored to the caregiver
needs and focused on improving the caregiving experiences have resulted in: lower rates of
institutionalization for care recipients (Eloniemi-Sulkava et al., 2001); reduced frequency of and
reactions to behavioural and psychological symptoms of dementia (BPSD) (Chua & Pachana,
2016; Hebert et al., 2003); improved caregiving competence (Chiu, Wessen, & Sadavoy, 2013;
Devor & Renvall, 2008); enhanced stress coping ability (Chiu et al., 2013; Milne, Guess, &
Russ, 2014); decreased caregiver burden (Devor & Renvall, 2008; Hsu et al., 2017; Tremont,
46
Davis, Bishop, & Fortinsky, 2008); increased disease understanding (de Rotrou et al., 2011);
lower psychological morbidity (Hsu et al., 2017); increased awareness of available support
services (Milne et al., 2013); and improved mental well-being (Chiu et al., 2013). In addition,
researchers have found that such interventions can delay institutionalization for up to 1.5 years,
noteworthy when considering the healthcare costs associated with it (Boots, de Vugt, van
persons living with dementia in Canada due to an array of barriers. Other researchers echoed the
same findings where caregivers reported the following as reasons for non-use: inconvenient
hours of operation (Brodaty, Thomson, Thompson, & Fine, 2005), inaccessibility (Ward-Griffin
et al., 2012), financial constraints (Brodaty et al., 2005; Lai & Surood, 2008; Morgan, Semchuk,
Stewart, & D’arcy, 2002; Ward-Griffin et al., 2012), transportation challenges or costs
(Colantonio, Kositsky, Cohen, & Vernich, 2001), lack of respite (Colantonio et al., 2001), time
constraints (Colantonio et al., 2001), and geographic location (Brodaty et al., 2005; Morgan et
al., 2002). Further validating existing research, Lewis and colleagues (2010) highlighted that
caring for a loved one living with dementia constitutes as another barrier as caregivers find it
Because of the various barriers mentioned above, researchers, health and social care
professionals, and healthcare institutions have started to consider other means of providing
supports – such as novel forms of technology – for family caregivers in addition to the traditional
care provision methods (Boots et al., 2014; Colantonio, Cohen, & Pon, 2001; Forbes et al., 2008;
Washington, Meadows, Elliot, & Koopman, 2011). Research suggested that family caregivers
47
are open to receiving caregiving support through technological platforms (Peterson, Hahn, Lee,
Madison, & Atri, 2016). More specifically, technology-based interventions have shown to
increase access for participation as family caregivers can access supports in the privacy of their
own homes without leaving their loved ones alone (Boots et al., 2014). Technology can also
reach those who have challenges accessing traditional services (Boots et al., 2014). The use of
The growth of research and development in the area of innovative uses of technology in
healthcare has illustrated its potential to offer many possibilities to improve health outcomes and
quality of life for persons living with dementia and their families (Buettner, Yu, & Burgener,
2010; Lorenz, Freddolino, Comas-Herrera, Knapp & Damant, 2019; Smith & Mountain, 2012;
Topo, 2009). For instance, Smith and Mountain discussed the prominence of technologies in a
number of life domains for persons living with dementia and their families, including
technologies to (1) assist in diagnosis; (2) improve memory function and cognitive simulation
and rehabilitation; (3) enhance aspects of safety and security; (4) facilitate access to information
and support; and (5) enable activities for daily living. Technology has been identified as a
convenient, accessible, and low-cost alternative for delivering interventions, providing support,
and meeting the caregiving needs of family caregivers of persons living with dementia (Godwin,
Mills, Anderson & Kunik, 2013). These characteristics of technology-based interventions are
particularly valued by family caregivers and significantly influence their decision to use the
To evaluate the impact of various forms of technology on caregiving for persons living
with dementia, several researchers conducted reviews to assess the benefits of a range of
48
technologies on caregiver and care recipient outcomes. After conducting a literature review of
technology for caregiving (e.g. telephone- and internet-based interventions), Topo (2009)
reported positive findings of increased coping skills and social support as well as decreased
caregiver burden and stress. The findings are consistent with what Powell and colleagues (2008)
found in a systematic review a year earlier. Powell et al. also highlighted that technology-based
interventions have effects on improving caregiver stress and depression, thereby showing
with Alzheimer’s disease, Buettner and colleagues (2010) reviewed ten studies using various
forms of technology, including computer touch screens, a combination of a digital clock and
motion sensors, interactive video monitoring systems, and computer games. The review
outcomes included positive effects for functional behaviours, recall of routes in the environment,
recall of appointments, dates, or tasks, cognitive performance, social interaction, and medication
adherence. In addition, positive outcomes for the caregivers were also noted, such as increased
compassion for the care recipient as well as more free time and peace of mind. Buettner and
colleagues asserted that technology-based interventions are an exemplary method to assist family
caregivers, reduce healthcare costs, and minimize the need for professional support as well as
stimulate activity and functions specifically impacted by dementia, thereby improving neuronal
persons living with dementia conducted by Godwin and colleagues (2013) reported that
caregivers responded positively to technology-based programs to address their needs. The studies
49
reviewed showed promising results relating to reductions in burden, improvement in overall
mental health, as well as increased competence and confidence in caregiving skills (Godwin et
al., 2013). Supporting the trend in previous studies, more recent reviews have also found that
technology-based interventions can lead to positive outcomes for the care recipient, including
reducing BPSD (Klimova, Valis & Kuca, 2018), maintaining quality of life (Klimova et al.,
2018), promoting social inclusion and well-being (Maresova et al., 2018), prolonging their
autonomy (Maresova et al., 2018), as well as for the family caregiver, such as mitigating mental
and physical burden (Hopwood et al., 2018; Klimova et al., 2018), and reducing anxiety and
depression (Hopwood et al., 2018; Zhao et al., 2019). Further substantiating these findings,
additional studies have also emphasized that caregivers are receptive to using technology-based
tools to assist with caregiving roles and recognize the potential of caregiving technologies to
improve their own quality of life, increase their feelings of being effective as a caregiver, and
reducing the burdens and stresses of caring for loved ones (e.g. Benefield & Beck, 2007; Lapid
et al., 2015; Lee, 2015; Shreve, Baier, Epstein-Lubow, & Gardner, 2016; Torp, Hanson, Hauge,
There is a common assumption that persons living with dementia are not capable, or will
encounter much difficulty, learning and using new technologies due to its complexity and the
cognitive capabilities needed with technology adoption (Kerkhof et al., 2016; Smith &
Mountain, 2012). However, studies conducted in the last decade showed that persons living with
dementia are capable of learning to use new and everyday technologies, such as digital
organizers and smartphones (Kerkhof et al., 2016; Nygard, 2008). Nygard and Starkhammer
(2007) argued that persons living with dementia at times lack adequate knowledge and
50
understanding, as opposed to being fearful or resistant of, new and advanced technologies and
have demonstrated a positive attitude towards receiving instructions and learning. Similarly, a
phenomenological study conducted by Nygard (2008) exploring how persons living with
dementia experience the meaning of their everyday technology showed that technology was
highly significant for persons living with dementia. Technology brought about practical and
existential meaning for persons living with dementia, as it could assist them in various aspects of
daily life (e.g. enabler of social interaction) as well as support how they perceive and present
Smartphones, tablets, and mobile devices that possess touch screens, provide a good
interface for mHealth purposes as this form of technology is often intuitive, user-friendly, and
“forgiving of mistakes” (Kerkhof et al., 2016; Smith & Mountain, 2012, p. 338). Researchers
have found that these characteristics make mobile devices effective tools for older adults,
especially individuals living with dementia (Kerkhof et al., 2016; Smith & Mountain, 2012).
Several studies have shown that persons living with dementia were able to learn to use
smartphones and tablets as well as its apps; found it user-friendly and valuable; and viewed it as
involvement in society (Bier, Paquette, & Macoir, 2018; Imbeault, Langlois, Bocti, Gagnon, &
Bier, 2018; Kerkhof et al., 2016; Kong, 2015). Researchers and clinicians have developed apps
for persons living with dementia which have shown to be effective in supporting the five areas of
self-management conceptualized by Martin and colleagues (2013): (1) relationship with family,
friends and caregivers; (2) active lifestyle; (3) psychological well-being; (4) techniques to cope
with memory losses; and (5) information about dementia. The ability for persons living with
dementia to use mobile devices independently is important as this can provide meaningful
51
activities for them to do while caregivers do other things, which can potentially reduce caregiver
Studies have found that family caregivers of persons living with dementia were
psychological burden and social isolation inherent to caregiving, increasing access to resources
and supports, and facilitating their ability to ensure the care recipient’s safety and monitor the
progression of their condition (Lee et al., 2017; Shreve et al, 2016). According to Lee and
colleagues (2017), family caregivers of persons living with dementia, particularly in ethnic
minority groups, use smartphones and apps more often than computers. The authors asserted that
smartphone-based interventions could address the needs of family caregivers who cannot attend
researchers have emphasized that mobile apps can alleviate geographic (e.g. in-person support
groups), physical (e.g. transportation and respite care needs), time (e.g. flexible scheduling and
no time needed for travel), or financial (e.g. travel expenses) barriers (Silva, Rodrigues, de la
Torre Díez, López-Coronado, & Saleem, 2015), enabling family caregivers to meet their needs in
order to enhance their caregiving experiences. In fact, 25 studies were found that discussed the
development process of specific mobile apps by researchers to assist persons living with
dementia and their caregivers in domains such as care provision, management, quality of life,
prevention, and awareness. Refer to Appendix A for more information on all the studies,
including a description of the app, the development methods, and significant findings. The
studies reported positive results overall and emphasized the potential for mobile apps in
dementia care. Specifically, results from the studies suggested that persons living with dementia
52
and their caregivers were receptive to the designed mobile apps as well as found them valuable
PART III: Understanding the Mobile App User Experience in the Dementia Context
The definition for user experience put forth by the International Organization for
Standardization (ISO; 2010) 9241-110:2010 (clause 2.15) is the most standardized in the
literature: “a person’s perceptions and responses that result from the use and/or anticipated use of
Park and colleagues (2013) contended that user experience is broadly defined as “all aspects of
the interaction between a user and a product” (p. 187). Khan (2012) asserted that user experience
focuses on a more subjective and holistic view on that interaction. Similarly, Law and colleagues
It is important to understand the end-users and their user experiences in the complete
development process (Davis & Oakley-Girvan, 2017; Nygard & Starkhammer, 2007; Smith &
Mountain, 2012; Tamim & Grant, 2016) as limited knowledge of the end-user can hinder user
engagement and intervention effectiveness (Anderson, Burford, & Emmerton, 2016; Laidlaw et
al., 2017; Tamim & Grant, 2016) and thus, result in technology abandonment rates as high as
75% to 80% among end-users (Liu et al., 2015). Described as gaining an understanding of how
people interact with products and other people, user experience is an exceedingly critical issue as
it can assist health and social care professionals and technology developers to create products
that will improve the lives of those who use the technologies (Forlizzi & Battarbee, 2004).
53
After conducting reviews, many researchers have found that only a few studies have used
a user-centered design in the development of mobile apps (e.g. Bateman et al., 2017;
Rathnayake, Moyle, Jones, & Calleja, 2018). In particular, in a systematic review, Bateman and
colleagues (2017) found that a large number of studies did not incorporate the end-users’ input
during the development of mHealth interventions for persons living with cognitive impairment
(i.e. dementia). They asserted that this can create potential mismatch between the proposed
solution and the end-users’ needs as well as highlighted the need to have a strong understanding
of the end-users’ characteristics, goals, tasks, needs, capabilities and contexts. Thus, the
caregivers, understand the preferences of how caregivers want to interact with the technology,
and learn how it can integrate into caregivers and their care recipient’s lives without presenting
additional burdens related to technology use (Benefield & Beck, 2007). After having extensive
experience in spearheading research projects aimed to design and develop remote monitoring
technologies for older adults and their caregivers, Mahoney (2010) further emphasized the need
for technologies to be tailored to the concerns of end-users in order to promote adoption and buy-
in.
However, only a few studies have explored caregiver needs and preferences with respect
to technology in the field of dementia caregiving. In a 2001 study, Colantonio and colleagues,
through telephone interviews, explored the use and interest in support strategies such as
telephone, newsletters, and computer services, among caregivers of persons living with
dementia. The findings showed substantial interest in the use of the three strategies by
caregivers. While this study provided valuable insight into the end-user needs of caregivers, this
54
study was conducted more than 18 years ago, limiting its ability to reflect the latest trends in
Years later, a study investigating the perceptions of family caregivers of persons living
conducted by Rialle and colleagues in 2008. 270 family caregivers completed the questionnaires,
which reflected that technologies most desired were ones that increased the care recipient’s
safety and caregiver’s social connectedness. However, the setting (greater Paris, France area) and
the time of the study limits its applicability to the current Canadian context despite its provision
of a pioneering insight into the technology needs and preferences of family caregivers of persons
explore the needs and the roles of intelligent assistive technology to support family caregivers of
persons living with dementia during activities of daily living. It is important to note that assistive
technology is the umbrella used to describe “products, equipment, and systems that enhance
learning, working, and daily living for persons with disabilities” (Assistive Technology Industry
Association, n.d., para. 1) while intelligent assistive technologies are assistive technologies that
emerged due to recent advancements in artificial intelligence and have its “own computation
capability and the ability to communicate information through a network” (Ienca et al., 2017, p.
1302). Respondents in the study indicated that they preferred intelligent assistive technologies to
be autonomous, familiar, simple and unobtrusive; thus, shedding light on family caregiver needs
an overall positive attitude and readiness toward using technology in their caregiving roles. The
55
findings provided more information on the spousal caregivers’ conceptions of technology (e.g.
utility perspective on technology) and the conditions for incorporation of technology (e.g.
and colleagues (2015) conducted a qualitative study using semi-structured interviews to explore
the everyday use of assistive technology by persons living with dementia and their families.
Topic areas explored in the interviews include general feelings about the use of technology to
assist persons living with dementia as well as current use or non-use of everyday technology.
The findings indicated that assistive technologies play an important role in supporting families to
continue caring. Persons living with dementia also reported positive feelings towards assistive
technology, especially if it can facilitate autonomy and independence. In the same year, Mao et
al. (2015) investigated caregivers’ perceived usefulness of available assistive technology devices
by administrating a questionnaire that allowed them to rate 82 devices (e.g. voice reminders,
colleagues found that caregivers were generally receptive to the usefulness of the listed devices
and describe accessibility and cost-effectiveness as key factors for influencing their decision to
More recently, in a qualitative study that explored the experiences of using assistive
technology in everyday life among family caregivers of persons living with young-onset
dementia, Holthe and colleagues (2018) found various benefits of the technology for the
caregiver, especially when the technology is simple and easy-to-use, but also some barriers for
successful use. A main finding was that a committed caregiver was integral in giving continual
support and ensuring that the technology functioned as intended for the care recipient. The
findings also underscored the importance of professional advice and support as well as an
56
understanding of the needs, capabilities and preferences of the end-users. In another qualitative
study, Ruggiano and colleagues (2019) employed in-depth interviews to explore how family
caregivers of persons living with dementia use technologies and how technological functions can
best meet their needs in navigating service systems they interact with to engage in caregiving
(e.g. family members and healthcare providers). Participants commented on a variety of ways
they found technology to be helpful for caregiving and provided suggestions for new methods
that technology could be designed to enhance the quality of interactions within the system of
stakeholders who are involved with their relative living with dementia’s care. The findings
highlighted that technologies developed for caregivers need to be effective, easy to use and more
widely disseminated.
Conclusion
Different user groups have diverse user needs, preferences, and experiences; thus, user
requirements vary significantly (Topo, 2009). Additionally, the context in which a mobile app is
used is critical to its perceived usefulness and user experience. Specifically, contextual factors
include the particular activity for which the app is designed, the characteristics of the targeted
users (e.g. family caregivers), when the app is mostly likely to be used (e.g. routinely), and
where the app will be used (Mao et al., 2015). As such, in line with the constructivism paradigm
underpinning this study whereby knowledge is discovered through human interactions within a
social context, a portion of the literature review focused on the various aspects of the family
caregiving experience unique to the dementia context to gain a better understanding on how
mobile apps can support persons living with dementia and their family caregivers. To increase
the acceptability and actual use of mobile apps by family caregivers, it is important to understand
57
not only their user experiences, but also the specific contexts in which they are used in their
caregiving roles.
However, while the studies reviewed provided important insight into the user needs,
persons living with dementia, no studies to date have explored the user experiences of family
caregivers of persons living with dementia on using mobile apps in their caregiving role. Thus,
guided by constructivism, the purpose of this study to explore the user experiences of family
caregivers is rooted in the fact that user experience research takes a holistic view of users’
interaction with technology in social contexts of use, emphasizes the situational and dynamic
aspects of using technology, as well as focuses on the dynamics of experience and how
technology, characteristics of the individual, and context work together in shaping the experience
of use (Bargas-Avila & Hornbæk, 2011). As a result, the research approach assumed in this study
uniquely adds to the current state of knowledge about the interplay of family caregiving and
mobile apps in the dementia context, which can inform future mobile app designs and
developments by researchers, health and social care professionals, healthcare organizations, and
app developers.
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CHAPTER FOUR
59
“I want to understand the world from your point of view.
I want to know what you know in the way you know it.
I want to understand the meaning of your experience, to walk in your shoes, to feel things as you
A major strength of the qualitative approach lies in its ability to explore one’s
interpretations of the world and their experiences, affording readers to grasp the idiosyncrasies of
their experiences. The way Spradley positioned himself as a learner with the participant as the
teacher reflects the stance I took while conducting this study. To understand the qualitative
approach I employed in the study, I have organized this chapter into three sections: (1) Part I:
Research Methodology; (2) Part II: Study Methods; and (3) Part III: Reflexivity and
Trustworthiness.
Qualitative Description
Historical Background
The need to address the limits of traditional science in developing knowledge required for
(Sandelowski, 2000; Thorne, Kirkham & MacDonald-Emes, 1997). Within the quantitative
science domain, the gold standard are experiments intended for prediction and control whereas
non-experimental designs are often seen as “weak” (Sandelowski, 2000). Furthermore, the use of
60
description was often considered to be the “crudest form of inquiry” in quantitative research
(Thorne et al., 1997, p. 170) and the lowest rung of the quantitative methodology hierarchy
(Sandelowski, 2000). Consequently, researchers followed rigid strategies to ensure data could be
quantified and “reduced to mathematical probability logic” in order for descriptive research to be
viewed as better data (Thorne et al., 1997, p. 170). Constrained by the positivist paradigm, the
data produced through this philosophical assumption were considered “decontextualized” and
“devoid of human subjectivity” by qualitative researchers (Thorne et al., 1997, p. 170). As such,
the necessity to answer nursing questions regarding the human experience on health and illness
descriptive research method (Sandelowski, 2000; Thorne et al., 1997). Although the historical
(2000, 2010) put forth seminal works of the methodology and asserted its value to qualitative
research in healthcare.
Theoretical Foundation
Qualitative description draws from the general principles of the naturalistic inquiry,
which acts as the theoretical foundation for the methodology (Sandelowski, 2000; 2010). This
orientation to inquiry asserts the commitment to studying a phenomenon in its natural state and
free of artifice – to the extent that is possible within the context of the research arena
(Sandelowski, 2000). More specifically, naturalistic studies aim to allow the target phenomenon
to present itself as it is without any manipulation or interference with the ordinary unfolding of
events while under study, leading to a “true understanding” (Colorafi & Evans, 2016, p. 18).
Additionally, the tenets of this methodology include the “recognition of varied shared
61
Bolyai, Knafl, & Cohen, 2016, p. 1193). Accordingly, following the tenets of naturalistic
phenomenon using the everyday terms specific to the phenomenon itself (Sandelowski, 2000).
Role of Theory. Often described as the “least theoretical” of the continuum of qualitative
philosophical commitments” (Sandelowski, 2000, p. 337). This does not mean that qualitative
descriptive studies are atheoretical or that theory does not play a significant role, but instead
allows the integration of a guiding theory or framework that is most appropriate to meet the
needs of the researchers’ particular inquiry and chosen phenomenon (Sandelowski, 2000; 2010).
As per this methodology, theory does not have to be fully pre-determined but can emerge and
shift during the research process; thus, allowing for flexibility in commitment to a guiding theory
Methodology Overview
description approaches are often eclectic methodologically and have the cardinal feature of
supporting the use of many different theories, sampling strategies, and data collection techniques
(Colorafi & Evans, 2016; Neergaard, Olesen, Andersen & Sondergaard, 2009; Sandelowski,
2010). The overarching goal of the approach is to describe and enhance understanding of human
experiences and events that are not commonly described or sufficiently understood at a manifest
level (Sandelowski, 2000; 2010; Willis et al., 2016). In particular, Sandelowski (2000)
highlighted that researchers conducting qualitative description studies seek descriptive validity,
62
referred to as “an accurate accounting of events that most people (including researchers and
participants) observing the same event would agree is accurate”, and interpretive validity,
described as “an accurate accounting of the meanings participants attributed to those events that
than interpretive description as described by Thorne and colleagues (1997) since findings stay
closer to the data obtained. However, Sandelowski argued that “all inquiry entails description,
and all description entails interpretation” (p. 335). Sandelowski further asserted that descriptions
are always influenced by the describer’s perceptions, sensitivities and inclinations. While
qualitative description is not free of interpretation, it entails a type of interpretation that is more
low-inference than studies within such traditions such as phenomenology and grounded theory
(Sandelowski, 2000). It is important to note that the difference between low and high inference
approaches is not one of rigour (Colorafi & Evans, 2016), but instead refers to the amount of
Qualitative description encourages researchers to stay close to their data and to the surface of
words and events, as opposed to other qualitative methodologies (Sandelowski, 2000). In other
words, qualitative description studies offer a presentation of the chosen phenomenon in everyday
in other terms” (Sandelowski, 2000, p. 336). Accordingly, the produced findings are closer to the
data as given or “data-near” (Sandelowski, 2010, p. 78), increasing the likelihood of agreement
Qualitative researchers have been reluctant to use qualitative description as their choice
of research approach due to their concern that this method of inquiry will present similar
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limitations to quantitative description and thus sought “epistemological credibility” (Thorne et
al., 1997, p. 170) in four other methodologies: phenomenology, grounded theory, ethnography,
and narrative (Sandelowski, 2000). However, Sandelowski (2000) highlighted that researchers
often resort to “methodological acrobatics” as some studies that researchers labelled as one of the
four methodologies could be often more accurately described as qualitative description studies
further asserted that qualitative description is regarded as one of the most commonly employed
methodologies. This claim is further supported by Polit and Beck (2009; 2014) in their paper
which analyzed more than 1,000 nursing studies published in eight journals between 2005 to
2006. The authors found that more than half of qualitative studies were qualitative description
(52%), while the rest comprised of phenomenology (20%), grounded theory (11%) and
widespread use of qualitative description has been credited to its ability to offer rich descriptions
expressed in the words of the participants as well as to generate a focused summary and
theory) tend to rely on high level interpretation and theory development, moving the data away
from the participant’s direct experiences which are less useful for program development
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of a chosen phenomenon using the participants’ everyday language. In fact, one of the central
tenets of this methodology is the commitment to collecting, analyzing and representing rich
descriptions provided by participants using a process that is theoretically informed, but not
theoretically bound (Sandelowski, 2000). As a result, the analysis process stays close to the data
and the informants’ points of view (Neergard et al., 2009; Sandelowski, 2000). Furthermore,
given that this study is preliminary and exploratory in nature since the phenomenon is not well-
known, having a guiding theoretical framework was deemed inappropriate for the purposes of
this study.
Despite the preliminary nature of this study, it does not mean theory did not play a
significant role in its development. Qualitative description enables the integration of theory that
is most appropriate to meet the needs of the chosen phenomenon (Sandelowski, 2000). The
constructivist paradigm was chosen to guide the research process given that constructivism
equates with theory. Indeed, theory is considered to be the “net that contains the researcher’s
epistemological, ontological and methodological premises” which directs the conducts of the
researcher (Denzin & Lincoln, 2005, p. 13). As such, qualitative description is the method of
choice when little is known about a phenomenon and straightforward language provided by
participants are needed, making data readily understood and findings interpretable to the general
public (Sandelowski, 2000; Sullivan-Bolyai et al., 2005). Qualitative description is also suitable
informants’ perspectives and evaluations are desired since the approach allows for the
presentation of informants’ points of view in their everyday language (Neergaard et al., 2009;
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Another benefit of using qualitative description in my study is that it averts issues
associated with an academic lens which do not culturally align with the individuals experiencing
provides a platform for identifying important and constructive suggestions for intervention and
2005). Since the chosen phenomenon is poorly understood in the literature and qualitative
description can identify critical information for developing new programs and interventions, this
method is well-suited to understanding the experiences of family caregivers who use mobile apps
Sampling
were chosen based on a predetermined set of criteria (Suri, 2011). This sampling method
supports the qualitative description approach as it facilitates the identification of participants who
(Sandelowski, 2000).
Inclusion Criteria
(1) Self identifies as an adult child family caregiver (i.e. child or grandchild) of a
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(2) Owns a mobile device (e.g. smartphones, tablets, PDAs, laptops with app features)
and has prior experience using mobile applications to assist in caregiving for a
(3) 18 to 55 years-old;
The first and third inclusion criteria were informed by the following factors. First, as
indicated in the literature, differences in caregiving experiences exist based on the nature of the
family relationship with the care recipient (i.e. spouses versus adult children) as the two groups
differ in terms of their stage of life and relationship with the care recipient. As such, this would
produce differences in lifestyle, burden, associated feelings and perceptions of the situation,
personal and social relationships, as well as the use of resources among different types of
caregivers (Conde-Sala et al., 2010). This generational factor is important to note as better
understanding of caregiving experiences of adult child caregivers can enable mobile app
interventions to be tailored more effectively towards their needs. Second, with respects to mobile
app usage, statistics from Canada Health Infoway show that majority of people who use mobile
apps for health reasons are under 35 years old (51%) and 35 to 54 years old (33%). Informed by
the literature and in consideration of these two factors, the first and third inclusion criteria were
developed as such.
Sample Size
Constructivism stresses the uniqueness of each individual’s experience and thus argues
that data saturation can never truly be reached (Bradshaw, Atkinson, & Doody, 2017). Instead,
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an adequate sample size is one that can sufficiently answer the research question by recruiting
appropriate sample size, three factors were considered: (1) what is recommended in user
experience research; (2) the study design; and (3) the quality of the data. First, in the technology
domain with respect to user experience, researchers advise a sample size of five (Nielsen &
Landauer, 1993; Nielsen, 2012; Virzi, 1992) to ten (Faulkner, 2003). Second, my study design
called for the use of multiple methods and data collection points that resulted in two interviews
per participant, with a total of ten interviews, conducted. Lastly, the quality of data produced in
the ten interviews with the use of photo-elicitation interviewing resulted in data that are rich and
experiential. Morse (2000) invites researchers to take into account parameters such as the quality
of data and study design when determining sample size. Morse further posits that the more
useable data (as determined by the quality of the data and the number of interviews per
participant) collected from each person, the fewer participants are required. Because of these
factors and after careful discussion with my thesis committee upon reviewing the quality of the
data collected, I decided that the five participants recruited for this study was an adequate sample
size that allowed for in-depth analysis and rich understanding of the end-user experience.
Recruitment
To gain access and recruit participants, gatekeepers (people or entities that can allow
access to resources [Whicher, Miller, Dunham, & Joffe, 2015]) in the community were contacted
to disseminate study posters via email, in-person, and/or social media. They included
organizations providing dementia support (i.e. Alzheimer’s Society of Toronto) and advocacy
(i.e. Thoughts for Dementia Collaborative), outpatient memory clinics (i.e. the Reitman Center at
Mount Sinai Hospital), and online support groups for caregivers (refer to Appendix F for all the
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recruitment documents used in this study). Research has shown that this strategy is particularly
successful because of the close relationships that referral organizations and staff have with
potential participants (Szabo, Whitlatch, Orsulic-Jeras, & Johnson, 2016). Social media
recruitment strategies were also employed, such as posting in Facebook support groups and
recruitment occurred in family caregiver support groups as most organizations, such as local
meetings for recruitment purposes to protect and respect the time of their members. On the
recruitment material, potential participants were asked to contact the researcher via email if
interested in participating in the study. Once a potential participant reached out to the researcher
via email, the researcher either emailed or called and screened the individual for eligibility using
Data Collection
Data collection in qualitative descriptive studies aims to discover “the who, what and
where of events” or experiences (Sandelowski, 2000, p. 339). In this study, I employed the
following data collection methods: (1) demographic form; (2) two one-on-one, semi-structured
interviews with each participant using photo-elicitation interviewing in the second interview; and
(3) field notes. Figure 1 outlines the data collection process that was used in this study.
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Figure 1. Overview of the data collection process employed in this study.
Demographic Form
A demographic form was used to describe the study sample. Data collected on this form
included information such as: age, sex, city of residence, highest level of education, relationship
with their relative living with dementia, and type of mobile device(s) the participant is using
(Appendix I). American Psychological Association’s (2001) Publication Manual (5th edition)
highlights the need to provide specific information about participants’ characteristics, including
their educational level. The inclusion of such information is to reduce the risk of assuming the
stance of “absolutism”, wherein there is an assumption that the phenomenon of interest is the
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same regardless of ethnicity, culture, and educational level (Hammer, 2011). Provision of
Additionally, the use of a demographic form was a method to understand certain aspects
of the participant’s experiences they may find difficult to immediately disclose as researchers
have found that written questionnaires have been associated with low distress (Decker, Naugle,
Carter-Visscher, Bell, & Seifert, 2011). This was important to consider given that at this point in
data collection, the participants and I are still in the beginning stages of building rapport and that
the demographic information provided by participants will inform the interview questions.
Participants were informed of the option of leaving certain areas of the form blank if they were
demographic data was to obtain a description of participants which allows readers and
researchers to explore to whom research findings relate and allows for comparisons to be made
across studies (Hammer, 2011). Furthermore, informed by the demographic data, a more
comprehensive understanding of the user experiences of the study sample can be gained.
Interviews
collection method. Two interviews were conducted with each participant in which the second
interview was informed by photo-elicitation methods. The purpose of the first interview was to
gain a rich description of the participant’s user experiences of using mobile apps during
caregiving activities for their loved one(s) living with dementia. The first interview lasted
approximately 30 to 45 minutes. At the end of the first interview, participant briefing about the
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photography activity and a $10 gift card as a token of gratitude for their participation was
provided. The second interview, which involved photo-elicitation, is detailed in the next section.
An interview guide, with examples of probing questions, was used for each of the
interviews in this study (Appendix J and L). The interview guides were emergent and informed
by previous interviews. Any new questions that arose and were added to the interview guide
were discussed with the thesis committee to ensure that the questions aligned with the Tri-
Council Policy Statement: Ethical Conduct for Research Involving Humans (Government of
Canada, 2014) and related to the research questions. Additionally, preliminary analysis of the
first interview informed the second interview. The second interview also provided the
opportunity to clarify any areas from the first interview with the participant. All interviews were
audio-recorded using a digital voice recorder and later transcribed verbatim by the researcher
Keeping in mind that potential participants are family caregivers who may find it difficult
to leave their homes due to caregiving responsibilities and/or other demands, participants were
given the option of either in-person or telephone interviews. In this population, time and travel
constraints are prominent; thus, offering various options is a strategy to encourage participation
and decrease lower refusal rate in the sampling plan (Tao, McRoy, Kovach, & Wang, 2016;
Whitebird et al., 2011). In the study, all five participants opted to have the interviews on the
phone. In the next section, I detail the photo-elicitation interviewing (PEI) process.
to encourage dialogue (Shell, 2014). This method was first coined by researcher and
photographer, John Collier in 1957 (Harper, 2002). Based on the works of Bateson and Mead
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(1942) who were the first to use pictures as a research tool in their studies during the 1930s and
1940s (Jacknis, 1988, as cited in Shell, 2014), Collier expanded this approach by using
photographs as an aid in the interviewing process. Collier described the role of photographs as a
means to jog memory, stimulate emotions, and facilitate the progression of the interview in a
meaningful way.
Harper (2002) contended that we, as human beings, inherently respond to images and text
in different ways. Harper argued that images evoke deeper elements of human consciousness
than words because the visual processing components of the brain are older than their verbal
processing counterparts. As such, Harper emphasized that PEI does not simply elicit more
information but evokes a different kind of information. Similarly, Genoe and Dupuis (2013)
highlighted that photographs can “capture greater levels of detail about the emotional meaning of
experience than words-only data collection” (p. 4). Hagedorn (1994) further elaborated on the
expression while maintaining concrete and explicit points of reference, encourage participants to
discuss their experience, and elicit a unique return of insights that may otherwise be impossible
between researcher and participant with a dual purpose: (1) for researchers to use as a tool to
expand on questions; and simultaneously, (2) for participants to provide a unique way to
The use of photographic methods is not new in dementia research. Researchers have used
this method in exploring the experiences of spousal caregivers of persons living with dementia
(Aubeeluck & Buchanan, 2006), and persons living with Alzheimer’s disease (Evans, Robertson,
& Candy, 2016; Shell, 2014; Wiersma, 2011), as well as leisure in dementia care (Genoe &
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Dupuis, 2013) and perspectives of persons living with dementia and their caregivers associated
with using in-home monitoring (Epstein, Aligato, Krimmel, & Mihailidis, 2016).
philosophy underpinning this study, and to correspond with the user experience component of
the phenomenon under investigation. The PEI framework as described by Bates and colleagues
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Figure 2. The photo-elicitation interviewing process for this study. Adapted from, “Beyond
McCann, L. K. Kaye, and J. C. Taylor, 2017, Qualitative Research in Psychology, 14(4), 474.
Step 1: Epistemological Decision. Given that PEI is a flexible method in that the
guidance and instructions can fit varying epistemological positions, the researcher must choose
an approach reflective of their epistemological stance (Bates, McCann, Kaye, & Taylor, 2017).
Since this study is underpinned by constructivism, the inductive “auto-driven” approach of PEI
was employed in the second interview wherein the photos taken by the participants guided and
‘drove’ the interview aimed at exploring the meanings behind their photographs (Clark-Ibáñez,
2004; Shell, 2014; Torre & Murphy, 2015). Furthermore, the open format of the auto-driven
approach was adopted, whereby participants were asked to provide any five photos they felt were
relevant to the phenomenon of interest (Bates et al., 2017). This approach was suitable as it
encouraged inclusion and active engagement of the participants as well as provided participants
insight for both researcher and participant” (Shell, 2014, p. 175). This, in turn, can increase
participant-led dialogue and subsequently, rich data; bridge the world of the researcher and the
participants; and facilitate rapport building (Bates et al., 2017; Genoe & Dupuis, 2013).
Step 2: Participant Briefing. Participant briefing was provided at end of the first
interview in which a detailed explanation of the photography portion of the study was provided
and a copy of the information was given to the participant (Appendix K). Participants were
asked to use their own camera-enabled mobile devices for photo-taking. They were asked to take
at least five photographs of activities, feelings, values, and ideas that were considered
meaningful and representative of their caregiving role as well as their experiences of using
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mobile apps in caregiving. Torre and Murphy (2015) contended that this approach reduces
logistical issues that often arise in research involving PEI, such as unfamiliarity with other
photo-taking devices. During this stage, ethical considerations were also discussed with the
participant.
Ethical Considerations Associated with PEI. Ethical concerns associated with PEI
include photo ownership, privacy, and consent. There was a conscientious effort in constructing
an ethical research design that took consideration of these concerns. First, how the photographs
are going to be used were explained to the participants. It was decided that shared ownership of
the photographs taken by participants was appropriate given the participatory nature of the
method (as seen in PEI studies conducted by Murray & Nash, 2017). In terms of privacy,
participants were informed that they could take pictures of people, but no defining features as it
may invade the privacy of individuals who had not been consented to be part of the study
(Aubeeluck & Buchanan, 2006) such as a photograph of the participant’s hand linked with
another person’s hand. Participants were also advised that the content of photographs should not
depict anything illegal or be deemed sensitive in nature (Bates et al., 2017). Participants were
told that the selected photos should not contain information that is violating any confidentiality
clauses for any individual or organizations such as patient information or industry data (Bates et
al., 2017). They were reminded that any photographs that violate an individual or organization’s
privacy will not be used in the study (Torre & Murphy, 2015). Consent for the use of the
photographs in the interviews and the use in any dissemination activities (e.g. conference
presentations, publications, etc) were obtained separately in written format (Appendix H) (Bates
et al., 2017).
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Step 3: Photo Collection. A two-week period for the participants to collect, compile, and
send their photographs to my email were allotted after the first interview.
Step 4: Interviews. Two telephone interviews were conducted for each participant and
the procedures for the second interview involving PEI are outlined below:
Second Interview: Using PEI. In the second interview, the photographs served as the
basis of the discussion from which I was able to extrapolate a deeper understanding and
description of the participant’s experiences, and later confirm through discourse (Shell, 2014).
Within the interview, photos were used as a stimulus to elicit richer accounts of the participant’s
user experiences with mobile apps in caregiving (refer to Appendix L for the interview guide).
The second interview lasted approximately 30 to 60 minutes. Once the interview was completed,
the participant was given a $10 gift certificate as a token of gratitude for participating in the
study.
Step 5: Analysis. In the context of this study, the photographs were a conduit and
catalyst for discussion at the second interview. The photographs were not coded or analyzed in
this study as the associated dialogue served as the data set (Bates et al., 2017; Harper, 2002).
Step 6: Dissemination. Participants’ consent was sought after for their photographs to be
journal articles and other dissemination methods. Given the purposes of this study, dissemination
of the photographs in this manner can act as an effective method to bring about meaningful
education and change (Dupuis et al., 2016) regarding the role of mobile apps in caregiving.
Visual arts in the form of photography can provoke sensory experiences which can enable
individuals to feel and see aspects of the human condition; thus, illustrating dimensions of the
human experience (Lapum et al., 2016). Research has also overwhelmingly indicated that visual
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arts strategies can effectively create interest in and action around substantive areas that require
change by directing critical dialogue towards social and dementia issues – something that is
communication (Boydell et al., 2012). Thus, photographs can highlight the complexity and
producing and communicating research findings and best practice in healthcare (Boydell et al.,
2012). Most importantly, photographs can make knowledge more accessible to diverse
stakeholders and multiple audiences (Boydell et al., 2012; Dupuis et al., 2016), which is
Field Notes
Field notes were made during the interviewing process to enable the recording of various
factors that can inform participant meaning (i.e. non-verbal behaviours such as tone of voice),
promote reflexivity, and enhance “transparency of analytic insights and speculations” (Milne &
Oberle, 2005; Phillippi & Lauderdale, 2018; Willis et al., 2016, p. 1196). The field notes helped
recreate the ambience of the interview by noting the non-textual aspects of the interview. I also
documented the initial perceptions and insights of each interview as well as my reflections after
the interview. Given that I am an instrument within the study, shaping the findings, reflection
after each interview encouraged me to assess my performance, biases, and feelings (Phillippi &
Lauderdale, 2018). Tuckett (2005) elaborated that keeping field notes contributes to the
credibility of a study as these memos are “analytical in themselves” and contain “immediate and
later perceptions and thoughts about the research process” (p. 32). As such, field notes are
described as another data source that can contribute to credibility in the context of data
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Data Analysis: Thematic Analysis
Data collected from the demographic forms were analyzed using descriptive statistical
analysis and qualitative thematic analysis were used to analyze the interviews. The qualitative
congruence to this approach, qualitative thematic analysis as described by Braun and Clarke
(2006) was chosen. Thematic analysis is described as “a method for identifying, analysing and
reporting patterns (themes) within data” (Braun & Clarke, 2006, p. 79). Thematic analysis
supports qualitative description as it is a dynamic, iterative and recursive method of analysis that
promotes researchers to immerse themselves in the data and provides a detailed and nuanced
account of the data (Braun & Clarke, 2006; Vaismoradi, Turunen, & Bondas, 2013). Thematic
analysis also describes the data by adopting a low level of interpretation (Vaismoradi et al.,
2013), making it congruent with the purposes of the qualitative descriptive methodology
(Sandelowski, 2000). Data collection and analysis were conducted concurrently to add to the
depth and quality of data analysis (Vaismoradi et al., 2013). The analysis also did not occur in a
linear fashion, but instead, in a recursive manner with frequent reviews (Braun & Clarke, 2006;
Braun and Clarke’s (2006) thematic analysis method is an interpretive process that
The aim of this phase is to become familiar with the depth and breadth of the content
through immersion in the data. To achieve this, I actively engaged with the data by transcribing
all interviews verbatim and reading the transcripts multiple times in an active way wherein I
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searched for meanings and patterns. Throughout this process, I also made notes of my initial
In this phase, I read the transcripts word by word to derive codes by first highlighting
exact words from the transcript that appear to capture key thoughts or concepts. I systematically
worked through the transcripts by giving full and equal attention to each line. A variety of
methods through Microsoft Word were used to illuminate data segments or codes into
meaningful groups, such as multi-coloured digital text highlighting and comment boxes. I coded
as many patterns as possible to ensure every meaningful segment of data is identified. I coded
extracts of data to ensure that the context is included. I also approached the text by making notes
of my first impressions, thoughts, and initial analysis using comment boxes on the side of the
Once all the transcripts were initially coded and collated, I began to sort the different
codes into potential themes. To accomplish this, I collated all the codes into a separate Microsoft
Word document in a table format to organize similar codes together. Throughout this process, I
analyzed the codes and how relevant coded data extracts may combine to form a broader,
overarching theme. Visual representations were used to help sort the different codes into themes
by using tables and diagrams. A preliminary thematic map was developed after analyzing the
connection and relationship between codes, between themes, and between different levels of
themes. In this phase, a collection of main themes and subthemes was created. A section titled
“miscellaneous” was used to house codes that do not seem to fit into the main themes.
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Phase 4: Reviewing Themes
The main themes and subthemes created in the previous phase were reviewed, revised
and refined in this phase. In order to do so, internal homogeneity and external heterogeneity were
used to evaluate main themes and subthemes. This was done by ensuring the data within themes
should cohere together meaningfully, while clear and identifiable distinctions between themes
also exist. Afterwards, necessary changes to the thematic map and organization were made to
ensure data within themes are consistent and form a coherent pattern while themes are distinct
from each other. To enhance trustworthiness, the codes, subthemes, and themes were reflected
on and discussed with the thesis committee throughout the analysis process, resulting in
consolidation of the findings. In any instances of incongruence, further analysis was conducted
to evaluate whether the theme is not appropriate or the data extracts within the theme do not fit.
After analysis, I either reworked the theme, created a new appropriate theme, moved the data
extracts that do not currently work into another main theme, or removed it from analysis.
Segments of data were rearranged within themes until they are contained within a relevant
theme. Lastly, the appropriateness and validity of individual themes were considered in relation
to the complete data set to see whether the thematic map accurately reflects what is portrayed in
the whole data set. The data set was reviewed in its entirety to ensure if the main themes and
In this phase, the main themes and subthemes were defined and further refined as I
considered the essence of what each theme is about and organized data extracts into a coherent
and internally consistent narrative. During refinement, I kept in mind any possible overlap
between themes and how each theme related to other themes. Themes were checked if they are
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internally coherent, consistent and distinctive. I also considered how each theme connects to the
data as a whole and how it fits into the broader overall ‘story’ of the complete data set. Once
clear definitions for each theme were generated, each main theme and subtheme was given a
“concise, punchy” name to immediately give the reader a sense of what the theme reflects (Braun
In this final phase, vivid, compelling extract examples were selected to provide sufficient
evidence of the themes within the data and to capture the essence of the story the data tells. An
analytic narrative was written to illustrate the story the data tells in relation to the research
Ethical Considerations
The following three principles provided the organizing framework regarding ethical
considerations for this study: (1) beneficence, referring to the notion that participants must not be
harmed; (2) autonomy, pertaining to the fact that informed consent must be obtained and
participation must be voluntary; and (3) justice, regarding the need for researchers to uphold
participant confidentiality and anonymity as well as to treat participants with dignity and respect
(Streubert & Carpenter, 2013). To ensure informed consent, participants were given adequate
information regarding the study and the researcher’s role as well as told that their participation is
completely voluntary, and they are free to withdraw at any time without penalty (Streubert &
Carpenter, 2013). Participants were provided the consent form at least a week before the
scheduled interview through email. They had the opportunity to review and ask any questions
relating to the consent form. On the scheduled day of the interview, I reviewed the consent form
with the participants again and answered any additional questions. They were reminded that
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participation is completely voluntary and that they could leave the study at any time without
consequences. Written consent for the interview, audio-recording, and the use of photographs
taken by participants in dissemination materials, were obtained before conducting the interview
through email. Participants also received a copy of the consent form. Process informed consent
was employed, where at varying points in the research process, participants’ consent to
participate was re-evaluated (Streubert & Carpenter, 2013). No participants withdrew consent in
the study. However, it was explained to participants that in the case should a participant
withdraw consent, they would not be participating in subsequent study activities; and they may
also request to have previously obtained information removed prior to when data analysis will
take place.
Participants were instructed that they do not have to provide a response for any questions
they do not feel comfortable answering. Strategies used in this study to ensure participant
confidentiality and anonymity included storing all data in a secure locked location, removing
identifier components, and assigning participants a study ID number (Sanjari et al., 2014).
Recordings of the interviews were destroyed right after transcription. All electronic data were
stored using password-protection and encryption. In addition to myself, only members of the
thesis committee had access to study data. Ethics approval was obtained from Ryerson
University’s Research Ethics Board prior to the commencement of the study. All data will be
destroyed one year after the publication of my thesis in case any audits arise after publication.
Reflexivity requires researchers to make their position explicit by being conscious of the
biases, values, and experiences that they bring to the study and by describing their existing
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beliefs and assumptions early in the research process as a means to make one’s positioning overt
to self and readers (Creswell, 2013; Creswell & Miller, 2000). Since researchers are described as
the primary data-gathering instruments in qualitative research (Lincoln & Guba, 1985), Primeau
(2003) asserted that “reflexivity enhances the quality of research through its ability to extend our
understanding of how our positions and interest as researchers affect all stages of the research
process” (p. 10). In other words, this allows readers to understand the positions of the researcher
(Creswell & Miller, 2000). This form of reflexivity was incorporated into the prologue in a
narrative account.
Field notes, which consisted of reflective memos and a research diary, were also kept to
foster reflexivity in this study. The research diary promoted ongoing self-critique and a “self-
critical account of the research process” (Rolfe, 2006; Tobin & Begley, 2004, p. 392). In the
the data as well as my relationship to the research topic and the participants (Jootun, McGhee, &
Marland, 2009). The interviews were recorded and transcribed by myself in order to gain
awareness of the subtle ways in which I may have been influencing the data collection (Jootun et
al., 2009).
Building on the seminal works of Guba and Lincoln (1981), Sandelowski’s (1986, 1993)
framework for establishing rigour was chosen to guide this study to maintain congruency to the
acknowledge that additional perspectives and frameworks exist for establishing rigour in
qualitative research, the decision to use the framework described by Sandelowski (2000) was a
result of a thoughtful process. First, consultation was sought from two Master of Nursing
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graduates from Ryerson University who used the same methodology and rigour framework for
their thesis work. They explained that maintaining congruency throughout their study was
important. Second, the paradigm assumptions underlying the research should govern the choice
of rigour procedures (Creswell & Miller, 2000). Thus, certain typologies of rigour were deemed
inappropriate not only for the methodology employed, but also the paradigm underpinning the
study given the framework’s philosophical and theoretical assumptions. Last, I also took in
study and the fact that she is a researcher in the nursing context. Because of those three main
reasons, I felt that using her framework for establishing rigour was appropriate and well-suited.
my philosophical perspectives which are discussed further throughout the next section.
Credibility
the truth value of the research is found in discovery of human experiences as they are lived and
(Sandelowski, 1986, p. 30). As such, five strategies were used to foster credibility which reflects
my epistemological assumptions wherein I aim to become immersed in the data, lessen the
distance between researcher and participants, and study participants in their natural setting. First,
(Sandelowski, 1986). Second, I ensured participant-driven data by probing for depth during
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interviews to promote richness (Milne & Oberle, 2005). Third, I obtained validation from the
participants themselves (Sandelowski, 1986) by probing to clarify what participants said during
the interviews; summarizing the major points at the end; as well as giving participants the
opportunity to reflect on the discussion while still in the context of the interview and afterwards
in the follow-up, second interview to indicate if they agree with the summary provided (Milne &
Oberle, 2005). Fourth, throughout the research process, I shared my way of thinking, ideas, and
interpretations with my thesis committee for their feedback and questioning. I presented and
justified my analysis and continuously illustrated how the study findings were grounded in the
data. Last, I triangulated across data sources and data collection methods (i.e. interviews,
photographs and field notes) to evaluate the congruence of findings among them (Sandelowski,
1986).
Fittingness
Fittingness is achieved when the findings fit into contexts externally from the study and
are meaningful to another group (Sandelowski, 1986). Additionally, fittingness also refers to
findings fitting the data from which they are derived and grounded in the experiences of
participants studied (Sandelowski, 1986). Fittingness was attained in this study by using the
following three methods: (1) using purposive sampling to ensure participant representativeness
of the phenomenon; (2) iteratively checking for representativeness of data in the data analysis
process (e.g. representativeness in the themes and examples used to reduce and present the data);
and (3) richly describing the data, the typical and atypical elements, and the contexts in which
the phenomenon was experienced by participants (Sandelowski, 1986). Overall, fittingness was
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Auditability
Auditability is established when the “decision trail” used by the researcher is made
transparent so others could follow and understand the decision-making process (Sandelowski,
1986, p. 33). In this study, a clear decision trail from its beginning to its end is available for
external perusal by richly describing, explaining, and justifying each component of the research
process in detail (Sandelowski, 1986). For example, in terms of data analysis, data display charts
indicating coding procedures and the process of grouping data into themes is available. An audit
trail of decisions and personal reflections were also preserved in memos through the course of
the study in the form of field notes and the research diary (Willis et al., 2016).
Confirmability
auditability as well as by valuing subjectivity and seeking for truth by interacting with, rather
than disengaging from, the phenomenon being investigated (Sandelowski, 1986). Additional
strategies that were used to ensure confirmability include a description of the demographics of
the participants as well as findings representing the data gathered, as evidenced by the inclusion
of direct quotes from participants (Bradshaw et al., 2017). Most importantly, to reflect my
axiological assumptions of positioning myself in the study, confirmability was addressed through
awareness and reporting of personal assumptions and potential bias in the prologue (Colorafi &
Evans, 2016). My biases, assumptions, and positioning were considered throughout the research
process; particularly as I reflect on my analytic and interpretive insights when collecting and
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CHAPTER FIVE
STUDY FINDINGS
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“In photography there are no shadows that cannot be illuminated.”
– August Sander
INTRODUCTION
In this chapter, I begin with a general overview of the participants in the study. This is
followed by a detailed description of the study findings in two sections. In the first section, the
findings addressing the main research question and the following sub-questions are presented:
(1) What are the user experiences of family caregivers using mobile apps to assist in caregiving
for their loved ones living with dementia in the community? (main research question); (2) What
are family caregivers’ perspectives on the use of mobile apps to support caregiving activities?;
(3) What are the influences that impact the use of mobile apps for family caregivers?; (4) How
do family caregivers use mobile apps during their caregiving activities? In the second section,
the findings addressing the following research sub-question pertaining to the study methods are
discussed: What are family caregivers’ experiences of using photographs as a conduit for
Throughout the presentation of the main themes and their affiliated subthemes, specific
participant quotes and participant-captured photographs have been selected to exemplify and to
describe each theme and subtheme. In order to provide a balanced representation of the
participants, the selected quotes and photographs fairly represent the experiences of each
participant. Of note, each photograph captured by the participant is named after a poignant or
meaningful segment of the discourse that they attributed to the photograph. This was done to
further highlight the participant’s experiences in their own words, and to stay closer to the data;
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THE PARTICIPANTS
All five participants identified as female and between the ages of 18 to 35 years old. They
identified themselves as a family adult child caregiver to either a parent or grandparent living
with dementia. As per the specified inclusion criteria, all the participants identified as living in
Ontario and having used mobile apps in their caregiving role within the last 12 months. To
safeguard the identities of the participants, pseudonyms were assigned to each participant. The
process of selecting the pseudonyms was a deliberate process as I chose names that reflect the
Participant One was named Abigail which is derived from a Hebrew name meaning “my
father is joy” (Behind the Names, 2018). I chose this name because she has a father living with
Young Onset Dementia; and from her stories, the strength of their relationship with each other
shined through. In particular, the story of how her father learned to use a mobile app to order a
cake for her birthday spoke volumes of their bond with each other. Abigail recently graduated
from university and is currently working full-time. She lives in the same household as her father
and her mother. She acts as the primary caregiver for her father along with her mother. Her
siblings currently reside outside of the country. She uses the following platforms to access
I chose to give the name Cassandra for Participant Two because it is derived from a
Greek name meaning “to excel or to shine” (Behind the Names, 2017a). What had the biggest
impact on me during our discussions together was Cassandra’s reflection upon how she felt that
she lacked the skills and knowledge for care provision when she compared herself to her aunt,
who is a Registered Nurse. Despite feeling this way, she stated that she could still excel and
shine as a caregiver if she did the best that she could within her abilities. Cassandra has a
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paternal grandmother living with dementia who lives with her aunt, the primary caregiver.
Cassandra is currently enrolled full-time in university. She visits her grandmother regularly,
usually on the weekends. The platforms that she uses to access mobile apps are her iPhone and
Participant Three was given the name Sierra which is the Spanish word for “mountain
range” (Behind the Names, 2019a). For the study, Sierra took a photograph of trees, leaves and
branches that looked like somewhere obscure to symbolize the feelings of confusion, chaos and
isolation associated with being a long-distance caregiver. Of note, Sierra was distinct from other
participants as she was the only one who resided in another city from the care recipient during
the time of the study. For me, that photograph not only vividly illustrated her feelings, but also
helped me to better understand her experiences. As such, congruent to her metaphor using
nature, I chose a name that represented those feelings of distance and remoteness in the form of a
mountain. Sierra has a mother living with Young Onset Dementia who requires considerable
assistance with her activities of daily living due to the stage of her condition. Her mother lives
with her father and siblings in the same household. They have access to homecare where
personal support workers visit them twice a day to help with care. Sierra is currently enrolled
full-time in university. Given that her university is in a different city from home, she lives on
campus and visits her mother regularly, usually during weekends. She accesses her iPhone and
Nadia was the name I chose for Participant Four due to its meaning of “hope” in many
Slavic languages (Behind the Names, 2019b). The importance of hope was a salient element of
Nadia’s story of caregiving for her maternal grandmother living with dementia. Majority of her
mobile apps use in her caregiving role was to bond with her grandmother through music played
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on those apps. What stood out to me the most was Nadia’s story of how music helped her
grandmother when she was hospitalized and critically ill; thus, Nadia described music as being
her grandmother’s hope. Nadia’s grandmother lives alone in her own apartment. Her
grandmother also possesses her own business and has been described by Nadia as relatively
independent with her activities of daily living. According to Nadia, her mother acts as the
primary caregiver for her grandmother. She recently graduated from university and is currently
working full-time in the healthcare field. She accesses mobile apps on her iPhone, iPad and
laptop.
Lastly, I chose to give Participant Five the name Sophia as it means “wisdom” in Greek
(Behind the Name, 2017b). Through our discussions, I came to learn that Sophia had a wealth of
experience and knowledge regarding caregiving as she has been a caregiver for all of her
grandparents for many years. As the oldest participant and the one who has been a family
caregiver the longest, I felt the name Sophia, referring to wisdom, was the most fitting. Sophia
has a maternal grandfather living with dementia who lived with her grandmother in the same
household. She graduated from university a couple of years ago and is also currently working
full-time in the healthcare field. Her android phone, android tablet, laptop and smartwatch are the
participants reported in the demographic form as well as my interactions with them during the
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Table 1. Demographic data results
Given that a generation is a group of individuals who are in the same age range and have
experienced similar events, their similar experiences often influence their views of the world
(Statistics Canada, 2012). Hence, in order to better understand the context of the participants’
experiences with technology overall, this section explicates the characteristics of the generations
in which the participants grew up in. In this study, all the participants were between the ages of
18 to 35 years old. Thus, they belonged to either Generation Y/Millennials (born between 1977
and 1995; 24 to 42 years of age) or Generation Z/Centennials (born 1996 and later; 23 years old
and younger) (Karr, 2017). These generations are characterized by rapid technological changes
wherein they grew up in a technology-filled and online-driven society (Karr, 2017; Statistics
Canada, 2012). In Abacus Data’s 2018 Canadian Millennials Report, survey results showed that
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people in the Millennial generation’s coming of age experience was influenced heavily by
technology (Kishchuk, 2018). For instance, the average age millennials began using a computer
was at 12 years-old and began adopting laptops and smartphones as early as 13 years-old
(Kishchuk, 2018). Compared to other generations, such as Baby Boomers (born 1946 to 1964)
and Generation X (born 1965 to 1976), participants in this study who are part of either the
Millennials or Centennials generation are more likely to own and use mobile devices and
In this section, the findings presented address the main research question as well as the
research sub-questions related to user experiences of mobile apps. First, the overarching theme
that arose from the data, Connecting to support through mobile apps in my, your, and our lives,
is described in detail. Afterwards, the three main themes and their affiliated subthemes
considered central to the user experiences of family caregivers are discussed. These three main
themes are (1) Adapting mobile apps to meet individual needs of the dyad; (2) Minimizing the
impact of the condition on the person and the family; and (3) Determining the effectiveness of
mobile apps. The following figure is a visual presentation of the three main themes and their
affiliated subthemes, which represents the participants’ experience with using mobile apps in
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Figure 3. Visual presentation of the study findings.
Connecting to Support Through Mobile Apps in My, Your, and Our Lives
Adapting mobile apps to meet Minimizing the impact of the Determining the
individual needs of the dyad condition on the person and the effectiveness of mobile apps
family
Connecting with Identifying useful functions
Promoting the care
others of mobile apps
recipient's personhood
Assisting with care Envisioning the potential of
Maintaining family
activities mobile apps
routines and traditions
Organizing
everyday living
Overarching Theme:
Connecting to Support Through Mobile Apps in My, Your, and Our Lives.
While each participant’s app use depended upon individual reasons and individual
contexts, all participants turned to mobile apps for support on the various challenges they faced
in their caregiving role, as well as in their day-to-day life. Accordingly, this theme is identified
as the predominant, overarching theme and is evident across all of the three major themes. The
overarching theme describes how mobile apps play an important role in the lives of the
caregiver, the care recipient, and both of them together as a dyad. In other words, the role of
mobile apps can shift from meeting the individual needs of the caregiver, to the care recipient, or
to them as a dyad. The theme also emphasizes how the impact of mobile apps for both the
caregiver and care recipient are inextricably linked as the use of apps by family caregivers can
indirectly benefit the lives of the relatives living with dementia, and vice versa.
The use of the word “connect” in this theme is purposeful to highlight the user
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relationships and technology which both played an important role for participants. In terms of
relationships, mobile apps supported participants to connect – to link, to feel an affinity, to join
together – with their care recipient in various ways to promote personhood, to facilitate displays
of love and affection, and to strengthen their relationship with the care recipient. At the same
time, in the technology domain, “connect” or “a connection” refers to the successful completion
of necessary arrangements so that two or more entities (either programs, systems, or people) can
communicate or transfer information at a distance to meet a certain goal or task (Rouse, 2005).
At the root of both uses of the word is the fundamental concept of coming together and forming a
relationship which is of particular significance to the participants when describing their user
experiences with mobile apps. In addition, the word connect is denoted with a suffix of -ing to
demonstrate that it is a present participle which means it is currently happening. This is done to
reflect how participants are still actively using mobile apps in their caregiving roles and that it is
an ongoing act. As such, the other main themes and its subthemes also begin with a present
Main Theme #1: Adapting Mobile Apps to Meet Individual Needs of the Dyad
Caregivers often adapt available mobile apps to meet the needs of both themselves and
the care recipient as many apps are not specifically developed for caregiving purposes. Of note,
available mobile apps are mostly for commercial use – designed and developed without
caregiver involvement. Consequently, the mobile apps participants use are ones that they have
adapted to address their caregiving needs, as saliently illustrated by Sierra: “I feel like if you're a
caregiver, you are used to adapting to everything, right?” Accounts of mobile app use
predominantly focused on the benefits they brought to not only the participants and their
caregiving roles, but also to the care recipient as reflected in three subthemes. In the first
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subtheme, Connecting with others, participants described the various ways they used mobile
apps to communicate and connect with family members, friends, and other caregivers around the
world. Through effective communication enabled by the use of mobile apps, participants were
able to coordinate care among family members and assist with care activities more efficiently. In
the second subtheme, Assisting with care activities, participants shared how they used mobile
apps to help with certain care activities that they perform regularly as a caregiver. In the last
subtheme, Organizing everyday living, participants discussed using mobile apps to help not only
organize their caregiving activities, but also other facets of their everyday life beyond caregiving
their caregiving experiences. As such, having various mobile apps that enabled participants to
connect with others in varying ways was perceived as essential to them as a caregiver.
Specifically, through mobile apps, participants were able to garner social support from family
members, friends and other caregivers in a convenient and accessible manner. In doing so,
mobile apps were able to fulfill their caregiving need of building a connection with other people,
Family members were not only viewed as an integral part of the caregiving team, but also
seen as a critical source of social support for participants. For this reason, all participants were
keen to use communication apps, such as FaceTimeTM, WhatsAppTM, and WeChatTM, to keep in
contact and to coordinate care among family members. Particularly, participants emphasized the
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importance of effective communication among family members when it comes to caregiving. For
instance, Sophia noted, “We have to call each other and communicate with each other”.
Therefore, the availability of communication apps to help participants keep in contact with
family members and the care recipient was especially valuable when they are apart from them
and/or caregiving from a long distance. Abigail noted the use of WhatsAppTM and Facebook
MessengerTM to communicate with her sisters who reside outside of the country: “It helps very
much, especially with my sisters because I talk to them almost every day and I give them updates
about my dad too on a weekly basis… WhatsApp, Facebook Messenger, these two are used very
often.” For Cassandra, she would assist her grandmother in using FaceTimeTM to connect with
other relatives: “She uses FaceTime - well, I help her use FaceTime whenever she wants talk to
my dad, or other family members.” Similarly, Sophia would use WeChatTM, a Chinese
communication app, to not only let her, but also her grandfather living with dementia connect
with other relatives across the world: “Sometimes we do WeChat with my aunt in China. We
would call her and stuff like that. We would WeChat. Also have a cousin in New Zealand and we
would WeChat with him too so that he would see the grandparents and stuff.” Additionally, as a
caregiver who is away from home for university, Sierra described using an app that allowed for
long-distance phone calls through her smartphone using her landline phone. This helped reduce
the financial burdens associated with making long-distance calls through a smartphone:
The easiest thing I can think right now is text messaging to keep in contact with my
family especially like I am caregiving away from home as well. And just checking in and
being able to talk to them is really important. I also have this app that that allows me to
make long-distance phone calls but using like our landline phone instead of my cell
phone since it will be a larger charge… Since we already have a landline with long
distance minutes versus on my phone, I don't have that on my plan so that's really helpful
because it's easy for me to follow, to talk to my dad or my sister.
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Participants also evaluated that the forms of communication apps they used (e.g.
FaceTimeTM) allowed for conversations that are rich in social cues as it enabled participants to
see the care recipient’s face and vice versa. Communication apps offered many of the
cues. Ultimately, these apps promoted the ability to have face-to-face social contact in a virtual
manner not afforded through an audio-only phone call. Participants felt that this was important
when connecting with their loved ones living with dementia as it enabled them to see social cues
as well as non-verbal behaviours and facial expressions. For instance, Nadia appreciated the
ability to have a virtual face-to-face conversation with her grandmother through the use of
When my brother and I were in university. We definitely would use it because I would
FaceTime my parents all the time and everything. So yeah sometimes she would be in the
background. And she would be so excited, like she couldn't believe that she could see my
face and talking to me. Because she is not quite used to that. She forgets that you could
do that. So everytime I would FaceTime her again, she would get really excited… Yeah, I
think it helps. It helps me, you feel like you're actually in the room with the person that
I'm not just listening to their voice, I can see their facial expressions or their little
mannerisms that you might miss when you are just on the phone with someone so yeah, I
think it's a lot nicer, it connects you both a little better.
Sierra described similar sentiments of the significance of being able to give and receive visual
cues, as she asserted the value of using FaceTimeTM to connect with her mother living with
dementia:
And I obviously use FaceTime to talk to my siblings. We used a lot too in the beginning
to talk to my mom since she would ask them for me. She was able to see my face and talk
to me which would help because sometimes she would be confused about where I was so
that is a big one.
Not only did the use of communication apps provide reassurance and comfort to the care
recipient, but there was also a reciprocal component. Participants were also reassured when they
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were able to see for themselves that their family member living with dementia was safe,
supported, and taken care of. This was especially prominent when participants were caregiving
from a long distance and did not live in the same household as the care recipient. For instance,
Sierra explained that using communication apps like FaceTimeTM gave her a sense of
connectedness and closeness to her mother and the opportunity to see how she is doing in a
convenient manner:
I know that I have said that a million times already but being away from home is difficult
so that form of technology really helps stay connected and know what’s going on at
home. It makes it more convenient to kind of check in because I could also do a video
call or something like that. So I can actually see what’s going on and see my mom and
see how she is and talk to her in a more personal way instead of just over the phone
because she like doesn’t understand the phone that well.
Moreover, Sierra further stated that a lack of communication throughout the family was
described to be a substantial issue, as it can cause confusion, chaos and stress. By overcoming
certain barriers to communication through the use of mobile apps, Sierra felt that it minimized
any miscommunication and reduced the feeling of being distant from the care recipient and her
family. The significance of connecting to her mother and her family through mobile apps was
encapsulated by the following photograph and the additional comments shared by Sierra:
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Photo 1. “Technology allows me to be still connected to my family and lessen that gap between
here and there” – Taken by Sierra.
Kind of to portray like caregiving from afar because it is like you don't really know
what's going on. It's like everything is kind of chaotic in the picture like the leaves are
everywhere and stuff. But also, it also feels like a whole like other world away. And then,
what I was also thinking is like the way that like technology allows me to feel, to be still
connected to my family and like kind of lessen that gap between like here and there. But
the photo was mostly to portray like how different of a place that it feels sometimes - the
disconnect between communication sometimes, like my family, like being able to
connect with them which is very hard because they are very busy caregiving and like
work and everything that it's sometimes hard to maintain communication. So sometimes,
I feel like I don't know what is going on when I am home, like when I am in [city], I don't
really know what is going on at home. I have to wait until I come back to kind of be
caught up on how my mom is doing and stuff like that… Like FaceTime, it kind of helps
with that like disconnect and feeling like a whole different world because you can
actually like see the person so like having that, it's almost like a face to face conversation
and I feel like sometimes, it's like more pressing - then like a phone call if you can see
them. It kind of helps to lessen that and it is also because it is like face to face, you can
see people's like reaction and everything. And it can help with that miscommunication
which can lead to like chaos and everything.
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Communication and social media apps also enabled the care recipient to stay connected
with others. Relational interactions were identified by participants to be crucial toward helping
their loved one living with dementia feel a sense of connectedness to others and the world. For
instance, Nadia described using these apps to prevent social isolation for her grandmother as her
condition limited her ability to connect with others in person. Therefore, Nadia’s family would
not only use FaceTimeTM to connect with each other, but also the FacebookTM app to let Nadia’s
grandmother connect with their family friends who lived far away. Nadia’s family achieved this
by helping her grandmother view photos of family friends as she is unable to travel that far to
visit in person. Nadia presented the following photograph of her iPad to emphasize how it is used
The iPad is usually what my mom would use with her to FaceTime my brother and I at
school or to listen to music every time she is over. We would use that because it's a
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bigger screen than our phones. So we can show her what's on there. We'll show her
pictures and things from past vacations that we've been on and graduation photos, stuff
like that. So we use that with her a lot… Sometimes, my mom will go on the Facebook
app and show her pictures. So just context, background: we have a cottage up on
[location name] and it's an island and they have a bunch of friends that are up there and
my mom and my grandma has known them forever like their kids grew up together kind
of thing. So my mom will show from Facebook pictures of them from the island. So like
that they can connect sort of because my grandma won't see them, she doesn't like to
come up to the cottage too much because it's far away. It's not that comfortable to be
away from home and whatnot. So my mom will show her pictures of friends and people
that she hasn't seen for a while. Yeah, that's good, staying connected.
In addition to keeping connected with family members and the care recipient, one
participant was also keen to use social media apps as a way to connect with peers and other
caregivers. Sierra stated that she would share her experiences as a caregiver on social media apps
in the form of pictures and videos to promote dialogue among peers and to help them better
understand what her experiences are as a caregiver of a person living with dementia:
I use like social media: Facebook, Twitter, mostly Instagram to share pictures and it's
like, not something that my peers can relate to but when I share a picture of my mom and
have a little caption - it's easier for them to understand I find. It's a better way to have that
conversation because I'm the one that is opening up and starting like the dialogue there so
that's been really helpful, a way for me to connect with my peers.
In this context, the use of social media apps worked as a way of finding individuals in similar
circumstances. Sierra further explained the value in having a support system consisted of people
who understand what she is going through: “…connecting with other people and how having that
kind of support system is important and there are people that understand, you don't have like to
explain everything to.” This in turn helped her gain social support from other caregivers globally
given that social media platforms enabled her to connect with others all over the world.
Essentially, social media apps were described by Sierra as a feasible means of creating virtual
access to reach out to other caregivers. To expand on this experience of connecting with other
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caregivers through mobile apps, Sierra captured the following photograph to symbolize feeling
connected to others:
Photo 3. “Social media keeps you connected to other people; they don’t have to walk in
your shoes because they are already walking in ones that are similar to yours” – Taken by Sierra.
What I was kind of going for was like how social media keeps you connected to other
people, other caregivers that you may not know or that you would have never met in real
life and get you connected to those people. And I knew that I wanted to have something
to symbolize the connectedness… they don't really have to walk in your shoes because
they are already walking in ones that are similar to yours. And so, they can easily
understand your experiences through their own experiences and you know, not everyone
is going to be the same, but they can give suggestions as to what they did, and what
worked for them and then you can kind of cater that for yourself. And so, that photo is
kind of to show connecting with other people but that who knows what it is like.
Overall, participants used mobile apps to help with communicating and engaging with
others as a way to foster social support from family, friends, and other individuals fulfilling the
role of a family caregiver. Given that family members are described to be a significant source of
social support, participants used mobile apps to enable them and their families to overcome
practical barriers to communicating with each other. The photographs participants took conveyed
the use of mobile apps in connecting with others and their social significance in how they
enabled caregivers and the wider family to be involved in coordinating care. Accordingly, it is
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important to note that as a result of this sense of connectedness within the family due to effective
communication is the ability for family members to plan appropriately when it comes to care
provision for their loved one living with dementia. With the next subtheme, I discuss how
participants used mobile apps to help with care activities in their caregiver role.
Participants described turning to mobile apps to assist with various care activities.
Specifically, they used mobile apps to address two main areas of care provision: (1) activities of
daily living [ADLs], defined as self-care tasks such as feeding and eating, resting, and toileting;
and (2) instrumental activities of daily living [IADLs], defined as more complex skills needed to
medications and appointments with healthcare providers (Kim, Liu, Nakaoka, Jang & Browne,
2018). Three key types of apps were used by participants to address those two areas of care
provision including: reminder apps to help with both ADLs and IADLs; grocery- and food-
delivery apps to ensure grocery shopping and nutritional needs were met; and ride-sharing and
Reminder Apps. Most participants expressed that using reminder apps or the reminder
feature of apps helped them with both ADLs and IADLs for the care recipient, including
providers, and ensuring personal care needs (i.e. eating, resting, and toileting) were met.
identified to be enhanced through the systematic use of reminder apps. For example, Cassandra
described the use of reminder apps to help with managing medications for her grandmother: “So
when she takes medication, she has little reminders on her iPad of what kind of medications she
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has to take and when.” Likewise, Sierra also reported her family using a reminder app on their
iPad for medication administration: “My dad has an iPad and he just leaves it in the house so
usually we hear it go off and it has a medication reminder for my mom.” Sierra further
simple thing but it can help people so much, you know?” For Abigail, she began using the
reminder feature of the Google CalendarTM app to ensure the safety of her father. As his memory
worsened, he began to lose track of whether he took his medications or not. Thus, she decided to
use reminders to ensure he got the correct dose of medication at the right time:
Because he would forget and then that’s when I just start to [use reminder apps]. Because
that would just make life easier because I wouldn’t know if he actually ate it or not
because he wasn’t in front of me the whole time. So I told him that it would be better if I
just hand it to him myself.
Participants also highlighted the importance of reminders to keep them on track as well in case
If she doesn’t have her reminder app, I think I would forget too… I feel like that she is
taking a lot of medications that it is kind of important to remind her and remind me so
that she doesn’t miss anything.
strengthened by use of apps with the reminder feature. For instance, when asked how she
organizes her grandfather’s appointments, Sophia stated: “Oh yeah, Google Calendar!” Abigail
also shared how she would use the Google CalendarTM app to keep track of her father’s doctor
I would say, I probably use apps up to three times a week and Google Calendar – two
times a week because I just keep checking it and updating it. So let me give you an
example, two days ago, a doctor called, he had an appointment scheduled for October
17th and that’s pretty far from now. And I will forget if I hadn’t written it down so I
usually put the doctor on speaker and say, “Hey can you just wait? Let me just put it on
my calendar.” Then it’s already there so I know that no matter what, that’s not getting
touched. And I will put the appointments in immediately.
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Lastly, assisting with personal care needs and self-care tasks, such as taking a nap, eating
and going to the bathroom, was another area of care provision that participants used reminder
apps for. For instance, Cassandra used reminders for not only medications, but also to remind her
grandmother when she should take a nap: “I would say that the ones we have been using, it
works well for her, especially the reminder apps like when she should take her medicine or when
she is suppose to take her nap. I think that works really well.” Similarly, for Sierra, she also uses
reminders for ADLs, such as eating and going to the washroom, for her mother who can no
longer communicate her needs verbally due to the stage of her dementia. When sharing her
photograph of a reminder notification on her phone, Sierra discussed in detail how she uses the
reminder app in her caregiving role within the context of performing ADLs:
Photo 4. “Using a reminder to keep you in check of what has to be done, not just for you but for
someone else” – Taken by Sierra.
So this, it's kind of to show how technology, how you can easily have reminders that help
you remember things because I feel like it's always easier for me to remember taking my
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own medications than remembering giving my mom her medications. And so it's
something that you may not think about sometimes - like having those reminders for
another person is really helpful… Using a reminder to keep you in check of what has to
be done, not just for you but for someone else because I think that it is harder to
remember what someone else needs when they can't tell you. So another thing that I
guess would help portray that even more - it's sometimes I don't realize “oh I need to take
my mom to the bathroom” because she hasn't gone and it's noon or something and she
hasn't gone since the morning but I would never think that she needs to go to the
bathroom unless she told me and she can't really tell me anymore. Or same with like I
don't realize that maybe she is hungry since she hasn't eaten since breakfast and it's
almost lunchtime but it's hard for me to remember that she could be hungry because I am
not hungry, and she can't tell me that.
Grocery-Delivery and Food-Ordering Apps. Nutritional needs were met through the
use of grocery-delivery and food-ordering mobile apps by participants. Participants discussed the
use of grocery-delivery apps, such as InstaCartTM, and food-ordering apps, such as Uber EatsTM,
to order meals for the care recipient. Cooking is a challenge and a safety concern for their
relative living with dementia and thus, participants often opted to order take-out meals when they
are unable to cook for them or are not under the same roof. For example, Sophia reported using
Uber EatsTM a couple of times for her grandfather: “I was going to say, I ordered Uber Eats a
couple of times – I did sushi and Thai food.” On the other hand, Abigail described using grocery-
I use the Instacart app every week! Apps that I use every week, on a regular basis, would
be Instacart, Uber Eats, SkipTheDishes, and I recently started using something called
DoorDash because it is just so easy to get things to my house if I am somewhere else and
I want to make sure he is okay.
When presenting the following photograph, Abigail further elaborated on her use of the
KijijiTM and TD Canada BankTM app on her phone to order cultural food for her father that he
particularly liked. By using the apps, it allowed her to tailor food to his specific personal
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Photo 5. “I am sitting somewhere else and I can take care of him sitting really far away” – Taken
by Abigail.
[Food] is probably the number one important thing in our family so I ordered it sitting
from my friend’s house… I was pretty happy, you know, I am sitting somewhere else and
I can take care of him sitting really far away even… I used Kijiji because this is not even
store-bought, well it is bought, but I don’t know if you can tell, it’s actually home cooked
food… So I know my dad is very picky when it comes to outside food so I contacted five
or six ladies and I kind of have their numbers on my phone but I found her through Kijiji.
She doesn’t live too far, she lives 15 minutes away and she’s also from where I am so she
told me that you know, whenever you need it, you call me and I e-transfer her, oh that’s
another mobile app I use!! So I e-transferred her 70 dollars and she’ll deliver this food, so
I guess I use TD and Kijiji for that.
provision with the use of transportation-related apps. For example, Abigail’s father can no longer
drive due to his condition which made it difficult for him to travel to places. However, when
Abigail wanted to celebrate her father’s birthday by taking him to a restaurant, she opted to use a
ride-sharing app called UberTM to make it possible for both of them to do so: “I used Uber to get
there and tried to get him a treat.” On the other hand, Sophia used car-riding and car-renting apps
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to take her grandfather to medical appointments. Sophia recognized the challenges associated
with taking her grandfather to medical appointments and sought out help from mobile apps such
as UberTM and Car2GoTM. She explained that Car2GoTM would provide cars that were more
comfortable and easier for her grandfather to get in and out of:
I would use Car2Go a lot. And because the car was a smart car, it was a smaller, shorter
car. It was a little bit easier for them to get in and out of than a minivan which was what
we had. We have a minivan and my grandfather had a hard time climbing up into the
minivan. So it was easier for him to sit down into a smaller, shorter car. And so Car2Go
was, it was a lifesaver for me too, to take them to appointments… I don't use Uber very
much but maybe once or twice.
Additionally, this method saved her money which she valued as caregiving can lead to many
expenses:
It would be cheaper to take a Car2Go because I didn't have to pay for parking. So I would
get a Car2Go sometime to take them to their appointments… I got to find a way to save
money… because I have to do it not just for my grandfather but my other two
grandmothers. It adds up.
Most participants were keen on using various types of mobile apps to respond to the two
main areas of care provision. In contrast, Nadia did not describe using mobile apps for
caregiving in the areas of ADLs and IADLs as the current condition of her grandmother did not
require her to do so. Nadia explained that not only is her grandmother relatively independent
with her ADLs and IADLs, but her family members work with her at her business, so they are
She’s pretty independent. Basically, she goes to work every single day. She owns a
building down on [street name]. And my family and her, they own a small business
there… I just haven’t been in that situation where we felt like we needed to use anything
like that [mobile apps] especially since that a lot of our family members are always
around.
However, Nadia stated that she would turn to mobile technology if her grandmother’s condition
worsened and if her and her family required more assistance with her care: “I'm definitely for
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technology. For sure. I think it's helpful. I think it is kind of where the world is going - that's the
To summarize, in the role of a family caregiver, participants sought out mobile apps to
help with care activities, ranging from assisting with personal care needs to addressing
transportation needs. While the use of mobile apps is prominent when participants take on the
role of a caregiver, they also described using mobile apps when addressing their other roles and
responsibilities beyond caregiving which is discussed further in the next subtheme. Participants
noted that by keeping other aspects of their lives organized, such as personal, school and work,
While all participants have the same amount of time in a day, how one spends and
interprets this time differed and depended on numerous factors such as personal, school, and
work demands. Participants recognized that time is finite and limited, and thus, required effective
organization of all aspects of their everyday living. This was especially pertinent as in addition to
managing school, work, and/or personal commitments, participants also had the role of a
caregiver. Essentially, participants felt that balancing their multiple demands required effective
organization and time management. As such, participants used mobile apps to not only organize
the activities associated with being a caregiver, but also tasks pertaining to being in school,
working full-time, and/or managing their personal lives. In this subtheme, participants discussed
how they used mobile apps for areas beyond their caregiving responsibilities and how by doing
so, they were able to be more prepared to take on the caregiver role.
Participants appreciated how mobile apps enabled them to complete tasks on the go due
to its convenience and accessibility given that it can be accessed whenever and wherever on their
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mobile devices. By being able to complete such tasks in this manner helped them manage their
multiple demands more efficiently. For example, Sierra expressed difficulty in managing the
Having a place, where little things that pop into your head, things that you need to do or
things for life and everything that like you have to go buy this or little notes and stuff. I
think feel like those easily get lost because there is always something you have to do like
someone is always asking "do this" or like "can you grab this for mom" like "can you go
get her clothes", "can you get her a sweater", "can you feed her". There is always
something happening, you are always getting so much information from everyone else
that sometimes your own things slip through.
Sierra further elaborated how mobile apps helped her organize the responsibilities associated
with her everyday living as well as her role as a caregiver: “And also helping taking care of
myself… that balance between what I need to do and what I need to do for my mom… And
organizing my life as well.” Sierra provided an example as to how mobile apps assisted her in
organizing her daily life by describing how she could work on tasks using the Notes app on her
Being able to save time as well so like when I am out, when I am taking the bus home, I
don't always want to pull out my whole laptop if I think of something that I need to do or
something. So just being able to write it on my phone and have it like sync to it a note on
my computer as well so that when I get home and I pull out my computer, I see like oh
yeah, I have to do this and get this ready or something. I guess it also goes with not losing
your thought and being able to put it in and stuff when you’re on the go.
In the same vein, Abigail also described the benefits of her using the commute time from work to
home to complete tasks on the go via mobile apps: “I get a lot of things done on the TTC because
that’s 3 hours a day”. Abigail further explained how mobile apps helped her manage the multiple
It made me feel useful too I guess in a way because it’s like, you know, I have a really
busy schedule so for me to be a caregiver at the same time, it’s not easy. So the fact that I
can be useful sitting at work, being outside constantly, I am a very, very busy person
these days like I am gone from like 6am to 6pm and then I come home and sometimes I
am gone again usually so the fact that I could do things made me feel definitely very
useful.
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As a result, mobile apps helped participants save considerable amounts of time by
allowing them to complete tasks in a timely and convenient method. For instance, Abigail stated
that the time saved was especially valuable as this meant additional time can be allocated to
providing care and spending quality time with her father. In particular, she indicated that despite
the additional costs associated with ordering groceries via an app, the substantial time saved was
worth it as it could be spent providing care and spending quality time with father and family:
It makes a big difference… And with the app, it would take me five minutes on the app,
and I would have that hour and 30 minutes that I wasted on actually doing the grocery on
taking care of him or spending time with him just because that is something that seniors
usually like so in that way, it really helps. That app, like, is my life-saver. The InstaCart
one… Yes, there is a fee. There is usually like a $3.99 delivery fee and you pay service
tax on top, and I usually always tip the person. So for me, total, it cost like per week,
maximum, it’s usually $15. I think it’s really worth it.
Abigail presented a photograph of a grocery store and explained in additional detail on how a
Photo 6. “I end up spending a lot more time necessary when I could just be at home and spend
more time with my family” – Taken by Abigail.
I just kind of took that because I went on my way to work to FreshCo because I realized
that I had to pick a couple things up, two or three. I said you know what, I am not going
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to pay $15 to deliver two or three items. I went in there and I was instantly regretting it
because I ended up wasting so much time and it reminded me kind of how important
online delivery is for me because I became so used to getting groceries delivered that
actually doing them was so hard. It may have been two or three items but I still spent 40
minutes in there so I was like you know what I am not doing this again… I always go for
one thing and I end up spending a lot more time necessary when I could just be at home
and probably spend more time with my family that way.
Participants also shared that organization-related apps, such as Google CalendarTM and
reminders, not only helped with care provision for the care recipient, but also with organizing
their other responsibilities. Accordingly, Abigail highlighted how she balances various tasks in
her daily life through reminders: “The best way I try to balance things is reminders, I think I
would be completely lost without them. I have reminders for everything.” Further, Sophia also
emphasized on the need to use mobile apps to stay organized with her daily activities: “I had to
stay organized somehow and that was one way to do it: Google Calendar… Apps help me stay
organized, stay connected.” This was especially important given that they are often juggling the
role of being a caregiver as well as other responsibilities, such as school, personal lives and work
commitments. Not only do these apps help organize the care activities required for the care
recipient, but also the responsibilities that the caregiver may have in their other roles. For Sophia,
she presented a photograph of her Google CalendarTM app on her smartphone and her smartwatch
to highlight the importance of having apps help her organize all of her daily activities,
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Photo 7. “That’s how I kept organized – it was the only way I can mash up my personal life, my
work life, and with having to care for grandparents” – Taken by Sophia.
On the topic of speaking of apps and technology and shows, I chose to show my calendar,
my list of activities that I have listed and it never ends. Time never ends. There's always
an endless amount of things to do and you can see the different colours. Each colour
represents a different type of activity. And they're just all squished in one after the other.
And they all represent something that I had to do. And that's how I kept organized - it
was the only way I can mash up my personal life, my work life, with having to care for…
I have more than one grandparent. I wasn't just caring for my grandfather. I was caring
for my two grandmothers too. So with three grandparents and their schedule and their
appointments plus my own personal appointments plus my other like things that come
with life… Because like let's all be honest here like how would you have managed it
without technology. Take technology out of the equation, I would be carrying an agenda
around trying to and match some schedules onto a page of paper and if things change, I
would have to remember to erase it and move it. And it would be a mess. And that piece
of paper, that agenda is not going to beep at me and remind me.
Overall, most participants embraced having mobile apps in their life as a way to stay
organized in all the facets of their lives. Particularly, organization-related apps enabled them to
efficiently manage other aspects of their lives beyond their caregiving role. In addition, various
apps that participants used allowed them to complete tasks and activities in any setting,
especially while they are on the go (e.g. during commute times). This in turn resulted in
substantial time saved for the participants which they valued as managing the many roles they
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hold (i.e. caregiver, student, full-time employee) required considerable amounts of time.
Although the use of apps in this context speaks to participants’ need for organization in other
aspects of their lives beyond caregiving, participants also recognized that the various roles they
hold are inextricably intertwined. If they have one aspect of their lives well organized, it can
influence their caregiving role. Ultimately, by effectively organizing the multiple demands that
participants have, they can allocate more time and resources towards their caregiver role.
Main Theme #2: Minimizing the Impact of the Condition on the Person and the Family
Participants described how dementia caused a disruption and change in the lives of their
loved ones living with dementia as well as their family as a whole. Thus, in the face of their
loved one’s condition, participants spoke about the significance of upholding their loved one’s
sense of personhood by focusing on their identity, needs, and values. Additionally, they also felt
that routines, traditions, and meaningful engagement were ways of maintaining stability and
continuity – which was of fundamental value for the participants. By using mobile apps,
participants found creative ways to address the inevitable disruptions and changes in their lives.
Accordingly, this major theme consists of two subthemes. In the first subtheme, Promoting the
care recipient’s personhood, participants described ways in which successful uptake and use of
mobile apps can support their relative living with dementia to maintain their sense of
personhood, to cope more independently, and to increase individual autonomy. In the second
subtheme, Maintaining family routines and traditions, participants discussed how mobile apps
also helped maintain family routines and traditions by helping the family address the barriers that
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Subtheme #1: Promoting the Care Recipient’s Personhood
Participants spoke to seeing the person, not just the condition. Instead of persons living
with dementia being defined by their condition, they are people and the condition is only one
aspect of their lives (Kitwood, 1997). Participants recognized the need to celebrate who the
person was, and who the person is now. Participants addressed the need to maintain personhood
against a background of losses and restrictions that their loved one experiences, such as cognitive
and physical challenges. For example, Nadia asserted the need to view persons living with
Like of course it's important to be there as her caregiver but at the same time, I don't want
her to lose the sense of her like her independence and her individuality… She's a mother.
She is a grandmother. She's all these things. She owns a company. Yeah. There's lots to
her for sure.
Similarly, Cassandra presented a photograph of her aunt to further illustrate this point and stated:
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That is actually a picture of my aunt and I wanted to interpret in a way where that was my
grandma long, long, long time ago. So it depicts a really strong woman who loves her
children very much like she birthed three children and now she has so many grandkids,
right? When I look at that picture, I just think of a mother’s love and that’s like how I
would describe it. And so yeah, how I said, she… like back then, she really cared about
her children and she was always taking care of them and it’s kind of just like saying how
now we are taking care of her too.
Participants believed that an important way for their loved ones living with dementia to
preserve their sense of personhood was through maintaining meaningful relationships and
activities. With an understanding of the importance of tailoring their care around their loved
one’s needs, preferences, values, beliefs, life history and other aspects that are important to them,
participants were keen to turn to mobile apps to support their care. Participants were particularly
interested in mobile apps that could sustain habits as well as support the care recipient to cope
participants commented that their relatives were still able to maintain previous hobbies, interests,
and activities through creative means in the form of an app. For instance, Cassandra’s
grandmother uses colouring and puzzle apps to stay engaged and to help with her anxiety:
And for the colouring and puzzles, I think it kind of helps her calm down, kind of help
her with I guess her anxiety kind of because she tends to get very irritated and I find that
when she’s using those apps, she is really calm and really quiet.
Cassandra’s grandmother also used to enjoy gardening and can no longer do so due to her
condition. However, the dyad was able to leverage a gardening app where she can continue to
garden and plant – virtually: “There is also this one app where it is like a gardening app and she
can plant, like she plants like virtual plants… And so, like she will plant them virtually and it
makes her really happy.” The use of an app not only helped Cassandra’s grandmother manage
her anxiety, but it also gave her a strong sense of mastery and self-efficacy which the participant
felt was beneficial when promoting her independence and sense of personhood:
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I think the most helpful one would be the puzzles but obviously, not too complicated
puzzles. Say like a picture of a flower. Yeah so, I think that would like really help.
Because it kind of, you know how the puzzles are not together yet but she kind of put the
pieces together. It kind of gives her a really, I don’t really know that word; it’s like a
feeling of… [accomplishment]. It’s like when she sees the final picture, it’s like “oh my
gosh, yeah, I did that!” And it kind of helps the brain I guess.
Moreover, for Nadia, she illustrated the passion that her grandmother has for music
through a picture of a guitar and vividly described an event that happened when her grandmother
So the guitar, so music as I said, actually for her, everything goes around music pretty
much… When she was in ICU, my one uncle… he came to the hospital and he did kind
of like a song for her and my other uncle participated in it too. And I honestly don’t know
if it was just luck of the draw or whatever but having people in there singing, that’s when
she started improving. She was ventilated and they thought that she was definitely not
going to make it through. And she was out the next day to the cardiac unit so I don’t
know what it was but I think something about it kind of gives her hope: the music.
Thus, recognizing the key role that music plays in her grandmother’s life, Nadia went on to
explain that she would use the YouTubeTM app to play songs that her grandmother would enjoy
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whenever she would visit her throughout the last five years. By engaging and connecting through
music via the YouTubeTM app, Nadia and her grandmother were able to further build a stronger
I think it really brings her back to a place where she is focused and interested and happy.
I think it brings her a lot of enjoyment to look at pictures and listen to music… I think it
definitely, definitely brings up her mood, makes her happier. In terms of how it affects
our relationship, I think it's really, really nice to get to bond through those little acts
because she's just so happy when she's using them.
From their narratives, it was evident that participants understood the importance of not
only caring for the physical aspects of their relative, but also to cultivate their sense of
personhood and enjoyment. Even when severe cognitive and physical decline was apparent,
participants tried to respond to their relative’s needs and preferences using mobile apps so they
can continue to engage in activities which were still meaningful to them. For instance, Sierra
described that while the stage of her mother’s condition limited activities that she could
participate in, she would still turn to her mobile devices, such as her smartphone or laptop, to
watch videos or view photos with her mother in an effort to engage her in meaningful activity:
“Sometimes, I would just pull it [phone or laptop] out to show her the video or a photo, or pull
Similarly, in the face of her grandfather’s significance decline, Sophia discussed that the
need to maintain a sense of enjoyment and engagement in her grandfather became increasingly
important:
He is still living in his own way. He is just not physically able to and it doesn’t mean that
he can’t live… There are other ways to care for somebody and it isn't always making sure
that they have eaten for the day and that they are washed and ready for bed and
comfortable. There are the mental aspects that you have to take care of too - even though
they're not mentally there.
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As exemplified in the following statements, when her grandfather was hospitalized, Sophia
described in detail how she used the YouTubeTM and NetflixTM app on her tablet to play videos
that he enjoyed. Made possible by mobile apps, she was able to cater to his preferences and
provide entertainment in a personalized way. Sophia presented two photographs to signify the
importance of promoting her grandfather’s sense of personhood by tailoring her care around his
preferences and by providing meaningful activities for him during his hospitalization:
Photo 10. “You can still bring some new experiences for him, for the person, just with
technology” – Taken by Sophia.
That's my laptop tablet. And I was playing a video for him… It's a picture of him
watching YouTube. And he's watching that World War documentary that I told you
about. He loves watching War documentaries and watching about the Nazis and the Japan
war stuff… You can still bring some new experiences for him, for the person, just with
technology… I wanted to show that this was possible because I had a) the Internet; b) a
portable device that I can show him these things on. And see that the information was
actually out there to bring to him to see that… He still couldn't walk, he couldn't run
around and it's not like he can climb Mount Everest. But at that time, the least I could
have done was give him something that he personally enjoyed and that he personally
loved… It was very personalized.
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Photo 11. “I was using mobile technology like Netflix… We wanted him to stay
engaged” – Taken by Sophia.
I wanted to show that I was using mobile technology like Netflix. I was able to put it up
on a screen to show different videos or shows like make it visible for him… We wanted
him to stay engaged. We didn't want his last moments of life to be slumped over in a bed
and staring at four walls until his mind went completely nuts. I think for any living
person whether or not it was 100 percent alert and oriented versus confused and forgetful,
for any person who is still able to hear, see, talk, feel, touch, you shouldn't have to sit
there and do nothing. Do you understand? Like if you still can live, you should live in
whatever way you can live. If it's whether through other people's experiences which is
through a screen or pictures maybe you can't physically do it yourself but you can still
live it.
It is through the involvement in familiar and meaningful activities that the family
member living with dementia is able to gain pleasure and inclusion as well as maintain a sense of
continuity and identity, which are critical for establishing personhood (Kitwood, 1997). As such,
participants played a key role in promoting their loved one’s involvement in meaningful
activities through the use of mobile apps as a way to sustain their personhood and well-being. In
this subtheme, the significance of meaningful activity is discussed on an individual level, but the
study data lent support to the notion that activity can also matter deeply at a family level which is
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Subtheme #2: Maintaining Family Routines and Traditions
While familiar and meaningful activity for the family member living with dementia is
important on an individual level, participants noted that activities in the form of family routines
and traditions were also valuable to the family as a whole. When a member of the family is
living with dementia, family routines and traditions can be disrupted as well. By continuing to
engage in long-established, shared family routines and traditions, it can promote a sense of
stability and continuity in the lives of the participants and their families. Knowing this,
participants described their ability to be resourceful and seek out mobile apps that can help them
overcome a specific barrier when maintaining family routines and traditions. It was in this
One salient example was when after teaching him how to use mobile apps, Abigail’s
father was able to order a birthday cake for her to celebrate her birthday through the use of an
app called Uber EatsTM. When sharing a photograph of the birthday cake, she described how
without the app, it would have been challenging, or even impossible, for her father to get her a
cake for her birthday since he no longer can drive due to his condition. This family was able to
uphold the tradition of celebrating birthdays with cake as the use of the mobile app empowered
the father to give his daughter a special gift for her birthday. This event further demonstrates that
not only are the caregivers using mobile apps to express love and appreciation towards their
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Photo 12. “He wanted to get me something for my birthday; he ordered it on the app himself; and
I was proud of him” – Taken by Abigail.
He kind of really wanted to get me something for my birthday but he couldn’t because
right now, because of his Alzheimer’s, his license has been temporarily revoked … So
what he did was, which was so sweet, he went on Uber Eats and he ordered a cake from
there… I was proud of him. He actually did that for me. He was like you know what? I
can’t do anything myself safely. So that’s why I took that picture. I was just like shocked
that he actually went and did that… I use it for food but I realized that you can even order
cakes. You can practically order anything now.
Abigail also went on to describe how she used another food-ordering app called
SkipTheDishesTM to reduce the burden of preparing for Eid celebrations, a family cultural
tradition that occurs every year. She ordered catering from the app for up to 45 guests, so they
can still celebrate with friends and family in a big gathering despite the challenges of caregiving
and her father’s condition. By using the app, Abigail articulated that it would result in “spending
time as a family and enjoy, rather than slaving two days before the actual event”. As illustrated
by Abigail in the following photograph and ensuing dialogue, the use of mobile apps opened up
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possibilities to maintain family celebrations in a way that would not have been possible and too
Photo 13. “We can spend time as a family and enjoy; rather than slaving two days before the
actual event” – Taken by Abigail.
We are Muslim so Eid passed this week so we had a party of I think 45 guests and I got
the catering done from SkipTheDishes. So all of this is food related so I realized it may
be a little bit repetitive. But I used a different app… I used a different app this time so
even I was surprised that I can get catering done so through an app. Before, I used to
think that I would have to place an order weeks ahead or something. I ordered it two days
before and I actually called them to make sure because I was like I don’t know, do they
really do catering through an app? But they do!
For Sierra’s family, they have a routine of taking photos and videos of everyday life and
of significant events using the camera app on their smartphones. She went on to describe the
importance of documenting her mother through pictures and videos in particular. By doing so, it
gave her the opportunity to capture various moments in her life to reflect and reminisce on:
I’d say probably the camera and the photos app I look at and I document times with my
mom… Like to use the camera app on my phone to take pictures and especially taking
videos of like my mom. It is really helpful for me because it’s something for me to look
back on. I get to see what happened before and see the progression of everything.
Sierra further expressed how apps helped her family uphold this family routine by allowing them
to share photos and videos with each other conveniently: “A lot of times my sister would be like
pull out her phone and take a picture and I would like oh send that to me!”
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Similarly, Nadia and her family also have a longstanding tradition to consistently
document family events and other memories through pictures and videos. This was particularly
important for the participant’s grandmother as this tradition has been an integral part of their
family life for many years. Capturing pictures and videos, now through a mobile app, remained
an important activity that allowed the family to be involved in a familiar routine, thus providing
a sense of continuity. Nadia shared a photograph of her previous digital camera to exemplify the
Photo 14. “She loves to have that kind of togetherness and the memories” – Taken by Nadia.
So the video camera, you don't see those too, too often. We don't necessarily use that as
much but what I do remember is that my dad and my grandpa so my grandma's husband,
he's passed away, but when he was alive, he used to take videos of everything with his
video camera. My dad and him as well. So that's what kind of reminded me of it because
my grandma always would like "oh take a video of this, take a video of that. We have to
have this." So she loves to have that kind of togetherness and the memories. So again, the
videos that we showed her from when we were children or when her kids were young.
And she gets so happy and sometimes she can't believe it. She has old pictures hanging
up in her front foyer of her house. So she really likes that. She has a stack of old photos
just hidden away in boxes in the back of her house. So for her I think like video cameras
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and cameras and memories like that, that's what is most important to her… Now it's
switched to our phones for the video camera… it's definitely easier to use a phone now.
Continuity within the family context through involvement in shared family activities was
described to be deeply important to participants. Although the condition of the care recipient
may result in many changes to their lives, participants were able to navigate those changes by
accessing mobile apps to help maintain family routines and traditions. By using the mobile apps,
they built a connection to the usual family life they had led with their family members, and as
was whether or not the app was effective in helping them address an unmet need. Accounts from
participants suggest that during their process of determining the effectiveness of mobile apps,
they explored what works, what doesn’t and what’s to come – and the following two subthemes
reflect the results of that exploration. In the first subtheme, Identifying useful functions of mobile
apps, participants described characteristics and functions of mobile apps they found useful and
how they promoted continued use. On the other hand, in the second subtheme, Envisioning the
potential of mobile apps, participants illustrated areas that mobile apps could improve on as well
as the potential of mobile apps in addressing some of their challenging caregiving needs.
Participants discussed reasons why they would use a certain mobile app in their
caregiving role. In doing so, they outlined several key characteristics and functions that mobile
apps must possess in order to be perceived as useful and to be continually used in their
caregiving role. The main areas of mobile apps participants identified as useful to them as
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caregivers are grouped into three general categories: Simplicity, Easy Navigation, and
Simplicity. All participants valued simple, practical and easy to use functionalities in
mobile apps. Specifically, they appreciated when an app has a simple interface (how the mobile
app looks) where it is more intuitive to understand how to use the app. In their descriptions, a
simple interface included aesthetics that are appropriately styled and attractive yet not
overwhelming as well as a format that is simply laid out. For an app to be perceived as “simple”,
it must include a minimalistic design where there is reduced clutter, the content is kept to a
minimum of what is relevant by presenting the user with only what they need, and the use of
simple language is supplemented with visuals. The app should not be text-heavy and should have
minimal jargon and technical terms. For instance, Sierra illustrated that simplicity and
minimalistic design are qualities she valued in the mobile apps she uses regularly: “More simple
and also like minimalistic-like interface as well. I only see what I need to see.” In accordance to
Sierra, Nadia also stated the main reasons she uses the mobile apps that she does is because of
their easy to use and low effort functionalities and as such, she would recommend those apps to
others to use: “It's definitely really easy to use. Yeah so that's a plus for sure. I would
recommend it to others - Definitely! I think it's a go to app for a lot of people. Right? YouTube,
through apps easily, such that they are obtaining maximum useful outcomes from an app with the
minimal amount of input necessary. Participants stated that finding key features and the
navigation of the various aspects of the app needed to be easy and straightforward. For
participants, this is often achieved by offering clarity in instructions, meeting the user’s goal with
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as few steps as possible, having navigation of the app be logical, inituitive and self-explanatory,
as well as presenting content in a natural and consistent manner that suit the purpose of the app.
For example, Abigail illustrated the ease behind navigating her reminder app: “The reminder
app, obviously, that’s there and the accessibility, just about opening it very easily.” Similarly,
both Nadia and Sophia discussed how easy it is to navigate and achieve their goals through the
apps they use. They alluded to the inituitive manner of their apps in which navigation is easy and
straightforward. Nadia stated, “YouTube is just easy because you can basically search anything,
and you'll get a result and then FaceTime also quite simple because it is just like an outgoing
phone call basically except with the visual piece.” Likewise, Sophia spoke of similar sentiments
about YouTubeTM and NetflixTM: “It's easy, straightforward…And the amount of content that we
described a colouring app that her grandmother uses and explained why this app was perceived
as more useful than other similar apps they tried. Cassandra emphasized the need for apps to be
simple and straightforward with minimal text in order for her grandmother to use:
For the colouring one, when you open the app, it doesn’t give you any instructions. It’s
just the paint brush is there and the colours are there and she can just click on the colour
and put it on the picture so it’s not really “oh you have to do this and then at this time”.
Because the [App name] one, it was like timed and it was giving a lot of instructions as to
how you should do it and when you should do it. So with the colouring one, you could
just do, it’s really easy.
It is evident that for participants, if an app was perceived as too complex, the possibility of
mastery of the app reduces and as such, successful uptake and use diminishes rapidly. This was
especially pertinent when the app was intended for the care recipient to use.
Interactivity and Integration. Certain mobile apps allow the option for interactivity
whereby users can enable the sharing of information to others. For Abigail, this feature of a
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calendar app she uses was a function she found useful as a caregiver given that it allowed her to
share her calendar with her family members in order to update them about her father’s activities
and to coordinate care. Abigail further elaborated that this opportunity to share information was
especially valuable when the family members reside in far away area:
A feature that I do like to use is the fact that I can share things and invite people through
the Calendar. There are times where I might actually have to show my sister something,
like I share the event, the calendar, everything with her even though she doesn’t live here.
So that’s really amazing that she doesn’t have to live here; she can live far away and still
see everything. I like the sharing aspect.
Given that mobile apps have the ability to be integrated and available on different mobile
devices, including laptops, phones, and tablets, users could easily access the app through any
device. For Sierra, she stressed that this capability of apps where one could access the same app
and features through various devices was important due to the convenience and accessibility that
it provides. As a result, she can choose to complete tasks on mobile apps through whichever
device that is suitable at the time (e.g. smartphone on the bus versus laptop when at home):
Like not losing anything, continue working on it… So I think a lot of it is not forgetting
things and having multiple ways to remind me and being able to like to sync calendars
and stuff like that between my devices is really important and then I think it saves time as
well because you can work on something on the go on your phone and then later, pick it
up on your laptop when you're like at home or stationed somewhere.
To expand on her experiences, Sierra captured the following picture to symbolize the impact of
this mobile app function on her as a family caregiver considering the “busy and chaotic” nature
of caregiving:
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Photo 15. “Integration is really important especially in caregiving so you can stay connected to
what you were doing no matter what device you are using” – Taken by Sierra
This one was more about the integration and how for me, that's really important
especially like caregiving - if I can start a task on my phone when I am like on the bus
home and then finish it on my computer once I actually get home because like saving
myself time is really important. So if I think of something that I need to put in my
calendar, it's nice to be like able to put it in my phone when I am out and then have it
sync to like my computer right away. And so that photo was a lot about integration and
not just between my like Apple products but also like having mobile apps that you could
like also access through like websites as well so you can like stay connected to what you
were doing no matter what device that you are using… I think that's really important
because everything is so busy and chaotic like as it is and as soon as I get home, there is
always something I need to do right then for my mom or for my family.
Participants revealed that simple, practical apps with immediate benefits, are most likely
to be implemented by them in their caregiving role. They also felt that clear, intuitive navigation
was important, with the ability to easily find data and achieve desired outcomes within the app.
In terms of simplicity and easy navigation, participants emphasized that these two characteristics
are required in order for their loved ones to use the mobile app. If the app is too complex, then
the care recipient is unable to use it independently, leading to discontinued use. Lastly,
participants discussed the importance of interactivity and integration as these features allowed
them to share relevant information with other family members as well as access to the same app
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on various mobile devices. For them as family caregivers, these two functions of mobile apps
provided two main benefits: (1) ability to provide updates and coordinate care with family
members in a convenient manner; and (2) ability to complete tasks on an app using whichever
mobile device suitable for the context and setting. While participants discussed the useful
functions of apps that promoted continued use, they also described areas in which apps can
improve on and the potential of apps in addressing some of their caregiving needs. This is further
Participants discussed a wide range of possibilities for mobile apps in the context of
addressing the many, yet diverse, challenges they face regularly as caregivers. Given that each
participant has different caregiving experiences, the ideas they provided varied according to their
perceived needs. Participants mainly focused on two areas, the functionality of the app and the
purpose of the app, when describing what type of apps would be beneficial for family caregivers.
In regard to the functionality of the app, Abigail and Sophia both provided some insight.
Abigail suggested developing apps that could act as a “one-stop-shop” where an app could have
multiple functions for increased convenience and to decrease the clutter when one has too many
The one thing I would do better is kind of integrate a bunch of things to one app. For
example, I have three different apps doing three different things. So like an app where I
can not be too stressful, maybe like do groceries and then book appointments and speak
with doctors, like something with an integrated network. Or something like that. That
would be helpful.
This way, an app can address the many and complex caregiving needs of family caregivers
within a single app, rather than relying on a number of apps with singular features and functions.
Sophia commented that language barrier prevented the use of mobile apps for her grandfather
and therefore, she suggested the development of apps with the option of having other languages:
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“You can say language barrier because my grandparents can't use it.” Sophia highlighted the
need for mobile apps to cater to individuals with varying culturally backgrounds who speak
different languages.
Upon reflection of the caregiving needs that they face, many participants described how
mobile apps could be designed with the purpose of addressing one of those needs. For Sierra, she
offered three ideas she hopes that can be materialized into an app. These ideas cultivated as a
result of the many challenges she faced as a family caregiver to her mother who is at a later stage
of dementia. First, since Sierra’s mother receives homecare, she proposed the design of an app
that would allow family caregivers to communicate with healthcare providers more efficiently.
She explained that this would facilitate the involvement of the family into the coordination of
I think the biggest thing might be especially because we have all these PSWs that come
in, especially when there are people that haven’t been here before. Like someone went on
vacation, like a regular person that has been here before, and a new person is coming in. I
wish there was a platform where we could put in the tasks they would be doing or where
they could find things in our house so you don’t have to kind of hovering around and
making sure they are doing things right or in the right order in the same routine as the
usual people. And having that as a space where they can check in and also add in things
and then we can add in certain stuff and that could be helpful for them as well. I think
what’s missing is that communication between this is how we do it in our family and this
is how they do it with their other clients.
Second, another suggestion provided by Sierra is an app that organized the care
recipient’s activities of daily living. In this case, similar to what Abigail suggested, Sierra wanted
an app that is multifunctional where it can possess many functions related to managing aspects of
everyday activities, such as tracking food and fluid intake and monitoring toileting. Given that
her mother is in the later stages of dementia where she is no longer able to communicate her
needs verbally, Sierra asserted the benefits of having a mobile app assist her in managing her
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So even putting in a reminder like oh a 10:30am snack reminder and then that would
really help to remind me of what I have to do for her when she can't. Like that might be
something that she needs but she can't tell me. Having structure and routine is also
important too. And that can be easily made through reminders and stuff like that too. You
would have to put in a lot of like information but say, you know the rough estimate of
how much liquids they're drinking in a day or how much they should drink in a day or
how many meals they would like to eat in a day, and you put that information in and so it
all reminds you if you haven't input it recently. Oh like they need to drink more water or
they're drinking a lot of water today, maybe they should go to the bathroom and things
like that - it's like the app can kind of keep track of information and put reminders out,
maybe not on set schedule all the time, but as needed.
Lastly, Sierra described that her mother would go to a day program on weekdays with the
Unfortunately, because of the uncertainty of when her mother would arrive after she is done at
the day program, this often meant her and her family had to make sacrifices in order to wait at
the house for her mother’s arrival on a regular basis. She stated that she would value an app
where she can track the times of the bus and when it will arrive at home, similar to an app
We have that [the TTC app] in [city] and it was when I was taking the photo, it is such a
simple thing but it is like we don't have that and it would be so easy to create and yet,
without it, it causes a lot of problems and increased stress and everything.
Sierra took the following photograph to symbolize this experience and to further emphasize the
potential of mobile apps to address this particular challenge which causes a lot of stress for her
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Photo 16. “I would wish there could be an app to know when she is getting off the bus so that
we’re sure she is there, and the bus didn’t make our lives harder” – Taken by Sierra
So this one is kind of about what like I wish there was… when my mom gets off the bus,
we don't really know exactly what time she is coming and that can cause a lot of
problems with my family because it is hard to plan around that. Like make sure my dad is
going to get home from work or if my sister has to get home earlier or things like that.
Especially when we have a family dinner on Fridays at my grandparents' house so we
have to eat quickly and rush back even though she might not be there until an hour later.
So sometimes we are rushing when there is no need to be so this photo was kind of like to
represent like her sitting alone because like I guess they would just leave her… Because I
sometimes feel like she is alone and she can't, if we are not there, then what is she going
to do? Like I said, with the technology piece tying in, it was what I would wish there
could be an app to know when she is getting off the bus so that we're sure she is there and
the bus didn't make our lives harder… Or we are like constantly waiting for her looking
outside and they're not like coming by... Usually like picking her up to go in the morning,
they're always like on time. Sometimes, they're a little bit early but it doesn't matter as
much but they're never late. But coming home, she could be dropped off like anywhere
from like five to seven.
This idea by Sierra underscored the notion that family caregivers are not seeking cutting-edge
apps but instead, already available solutions might be just as important in addressing their
caregiving challenges.
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Commonalities were found among a couple of participants where they stated safety-
related concerns as an area of caregiving in which they hope mobile apps can support.
Specifically, Nadia described concerns regarding forgetting to turn off appliances and falls at
home which she hoped mobile apps could provide assistance with:
I think the thing that I would be most worried about would be her leaving the oven or the
stove on. Yeah, that's what concerns me. Or if there is a fall, or if she falls or something
which doesn't happen often but yeah. And then no one being there to help her out. I think
those would be what I would be most concerned about.
Sophia had similar concerns and explained that she would like a mobile app that could provide
support during incidences where her grandparents had a fall or another form of emergency: “Fall
or emergencies because there were two incidences where they had an emergency and they didn't
know how to call the police”. She further elaborated that a mobile app that can help her track her
And I know that there's something like that already starting to come out. You can track them. It
In conclusion, participants discussed their vision of how mobile apps could potentially
address some of their current caregiving needs. They provided some suggestions to improve the
functions of apps to make them more effective and useful, such as having multiple language
options and being multifunctional. They also offered some ideas of specific caregiving needs an
app could address, including communication with healthcare providers and management of
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PART II: PARTICIPANTS’ EXPERIENCES WITH PHOTO-ELICITATION
INTERVIEWING (PEI)
In this section, the findings address one of the research sub-questions which pertained to
the study methods of using PEI as a data collection method: What are family caregivers’
Particularly, this section focuses on the participants’ experiences of engaging in PEI. All
photographs, and discussed them actively. All participants took five photographs, with two
participants choosing to submit more than five. In all, a total of 28 photographs were submitted.
All participants comfortably discussed each photograph, except in one instance when one
participant who submitted more than five photographs decided to withdraw one photograph.
Based on their descriptions of the experience of engaging in the photography activity and the use
of photographs in the second interview, the main theme, Promoted reflection and richer
dialogue, was identified. This main theme describes how the opportunity to take photographs
over a period of time enabled participants to fully explore and reflect upon their experiences.
For all of the participants, taking the photographs provided a greater sense of perspective
of their experiences. Participants embraced the photography activity and found it to be beneficial
as the reflection they experienced cultivated more awareness towards their caregiving role, their
relationship with the care recipient, and their use of mobile apps for support. The photographs
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enabled the participants to describe their experiences and the meanings they ascribed to them in
reflection of their caregiving experiences which they often do not get the chance to do. For
instance, Abigail appreciated the opportunity afforded through the photography activity to reflect
on her role as a caregiver as well as the impact of mobile apps on her caregiving experiences:
I was doing all these things that were in the pictures on a weekly basis anyways but I
never actually got time to reflect on what I was doing until I took the pictures. I was like
oh! I didn’t even realize this was what I do every week. It gave me a chance to kind of
reflect and give me an opportunity to see what I am actually doing… It kind of made me
fully reflect.
It was evident that the photography activity allowed participants to elaborate on different
aspects of their caregiving experiences that perhaps would have not been raised in a verbal-only
interview alone. For example, as illustrated in the following exchange, Sophia recognized that
the follow-up interview, which allowed for photograph-oriented discussion, encouraged richer
dialogue – a result she did not anticipate. Sophia remarked, “I think we have gone into it a lot
deeper than I thought I would.” She elaborated that “some of the questions really made me touch
base on it. Like anything in life, right? If it’s not questioned, we really don’t think about it. …
In the follow-up interview, participants discussed what was in the photograph and where,
when and why they took the pictures, allowing them to reflect on a deeper level on the symbolic
significance of the photographs. For Sierra, she stated that by having the opportunity to discuss
her feelings and emotions in the photo-elicitation interview, it allowed her to explore her
I think like for me, I like to talk through problems and I think when you're like reflecting
on something within yourself, you don't always get the opportunity to talk about how you
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feel because like it's yourself. Like you're just talking with yourself so you're reflecting
within yourself. And you don't get to. But for me, talking out loud helps me work through
problems and I think that's why I was able to learn a lot more and explain myself like my
vague idea more concise and clearly and get my point across easier when I was talking
and I felt like I was able to share more of like how I felt like in words.
Participants also gained a richer insight into their emotions and feelings associated with
reflect more deeply about their experiences as opposed to reflecting as part of a one-off
interview. For instance, the photography activity enabled Cassandra to explore and reflect upon
her experiences as a family caregiver as opposed to a professional caregiver like her aunt who is
a Registered Nurse. Cassandra took a photograph of a page in a book (this photograph is not
shown due to copyright infringement concerns) depicting a highlighted quote by Rath (n.d.):
“You cannot be anything you want to be – but you can be a lot more of who you already are”.
She explained how even though she is not a “professional”, she recognizes that she can still be a
I literally just turned to one page, like a random page, and that was the quote that like
came up. That was the first thing that I read because it was highlighted. And I thought it
kind of related to my situation, right? So I just thought that yeah I’m not really a
natural… professional caregiver and I’m not like the one that’s always taking care of her
and everything. And I can’t be there but I am also like I am okay with it. Because I know
that deep down, I can just be like there for her and just care for her.
For Sierra, by taking photographs to explain her experiences, she felt that she was able to
see things she had always known in a new way. She further described how the photography
activity encouraged her to see and reflect upon her experiences in a different light with regards to
elaborated on the impact of being a caregiver on various aspects of her life, such as relationships
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I think just being able to like to reflect on my experience like in a different way... like
seeing how things around me influence like caregiving for my mom like how little things.
So like when I was away from my mom, I took some photos too like when I wasn't with
her because I was trying to portray like the "being away from home" and stuff. That kind
of like aspect of like caregiving from afar. And I think like it was beneficial to reflect on
how it affects me when I am not at home too. So I think, that's something I don't often
think about.
Furthermore, the use of photographs supported participants to talk about difficult areas of
their caregiving experiences. In particular, Sophia opened up about her struggles with receiving
peace of mind when her and her family made the decision to place her grandfather in palliative
care when his health was declining: “I reflected on peace of mind like I wanted to feel that he
was okay with what we did for him.” She further explained how the photography activity
promoted her to reflect in more depth on this challenging aspect of her caregiving experience and
in doing so, she recognized that her and her family did what was best for her grandfather: “When
I look at the photos and I look at the activity, I think what was available at that time. What we
could have done for him to improve his quality. We did. I felt like we did it to our best.”
In addition, the photography activity also helped participants realize and reflect upon
their experiences with the changes that have occurred as a result of dementia. For example,
Cassandra explained the feelings and emotions associated with navigating those changes as she
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Photo 17. “Pictures represent memories and I blurred it; I just see myself kind of in her shoes” –
Taken by Cassandra
It’s basically just pictures of a bunch of Polaroids and a few of my pictures really
represents things that have happened in your life. So like memories and everything. And I
blurred it, like I edited it, because it kind of symbolizes that she knows that she has
children, she knows that she has grandkids and everything and family. And you know
how pictures represent like memories right?... She doesn’t really remember much of it.
So let’s say she looks at a photograph of something in her past, she will remember it…
but like very vaguely. Like she’ll forget… Well, when I look like at it, I just like see
myself kind of in her shoes but not to, like be extreme, right? Because I don’t really know
what happens with her, but I see that when I take care of her, she really does get
frustrated and just like not her usual self.
Participants recognized that although grief and loss is a natural part of navigating such a
change, there is also an opportunity to acknowledge the celebration of who the person was, and
who the person is now. For instance, Cassandra described the photography activity as a “time of
reflection” about the impact of dementia on her grandmother and their relationship as well as to
When I was little, I remember she would take me to school, get me dressed, and
everything. And seeing how much that changed, it really affects me but you know, it’s
life, it happens. So we kind of just have to accept it and just like work with it… It makes
me so much more thankful that she is still here with us and like she still remembers us. I
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mean one day, I know she will forget but just right now, we just like want to cherish her
and everything.
In the same vein, Nadia also described how the photography activity promoted not only her
reflection of, but also her appreciation of who her grandmother was, and who she is now:
It kind of makes you think. This whole activity is just you know I kind of remember her
for how she was a few years ago or it was kind of, it was a gradual but kind of a quick
decline… taking the pictures let's say five years ago, they might be completely different
than what I'm taking now so that was kind of something where I mean I maybe felt a little
saddened about but that's not, not too much. I mean I love who she is now and I loved
who she was back then… I think it was nice to kind of look at her in different lights like
this. I think it's nice to think about her like through this lens, through photography and
everything like that.
With regards to user experiences with mobile apps, the photography activity and the
follow-up discussion offered the opportunity for more in-depth exploration which appeared to
give participants a new sense of appreciation of the impact mobile apps have in their caregiving
role and its future use. For instance, Abigail asserted that she will now be more cognizant of her
use of mobile apps and try to further leverage them in her caregiving role:
I am going to be thinking more about what I actually use on a day to day basis. It’s kind
of like created awareness so that way, before I would just do things and not think about it.
But now, I am going to put more attention about what I am doing. I am actually,
probably, going start to use apps more if anything and research different apps. Because I
haven’t, because I know the app store is very large so I am sure I can find one or two that
are even more helpful.
Similarly, Nadia felt that the follow-up discussion encouraged her to reflect deeper on her mobile
app use to assist with her caregiving activities and on how she could explore that aspect of her
It definitely got me to reflect on things and look at different options with mobile apps and
technology that I just didn't even think about. I kind of just assumed it would be us with
her, taking care of her and whatever. But there's also handy aids that are out there that
you don't even know about. So that's definitely changed it. I didn't even think of it to be
honest before we had these conversations.
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It was noted that the follow-up interview, somewhat expectantly, highlighted the aspects
of their caregiving experiences and their use of mobile apps that were often overlooked. For
instance, after reviewing the first transcript and gaining a better understanding of my discussion
with Abigail, I began the follow-up interview inquiring about the social supports she has in her
life as this was not discussed in detail in the first interview. As evidenced by the following
dialogue, this discussion led Abigail to recognize an aspect of her caregiving experience that
went unnoticed: using mobile apps to communicate and connect with family members to garner
social support.
Interviewer: Okay, so you said you use Whatsapp to connect with your friends and
family, would you say that using these apps, or other social network platforms such as
Facebook, Twitter, Whatsapp, it helps you socialize with others without having to
sacrifice caregiving in person?
Abigail: Oh yes, for sure! It helps very much. Especially with my sisters because I talk to
them almost every day and I give them updates about my dad too on a weekly basis.
Interviewer: Is Whatsapp your go-to or do you use any other apps to…
Abigail: Whatsapp, Facebook messenger, these two are used very often.
Interviewer: Okay, so what I am hearing you say is these apps that we didn’t talk about
before…
Abigail: Oh my god, I didn’t even think those apps for caregiving, yeah.
Interviewer: Yeah, I was reflecting about our previous discussion and you were talking
about having difficulty to grocery shop and time away from your father and I made this
link.
Abigail: I didn’t tie that to dementia but I just realized that it could totally be important to
that.
Further on in the interview when discussing a photograph she took, the same form of revelation
occurred once again when Abigail recognized how the photograph helped her to acknowledge
her use of banking apps to assist in caregiving activities which she never considered: “I am
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actually surprised right now at myself that I didn’t even realize that I am using, that even the TD
Bank app can tie into this.” Sierra expressed similar sentiments as she recognized, through the
sharing of photographs and dialogue, the apps that she used to address her caregiving needs that
went unnoticed: “I only just realized this as I am talking to you and thinking about it… I have
Overall, by participating in the photography activity, participants noticed that they were
able to express feelings and experiences in a different yet deeper manner which required further
thought and reflection on their part. The photographs also helped build rapport and trust between
the researcher and participants by stimulating more in-depth discussions. In particular, there were
many occasions where seemingly mundane images, such as trees in a backyard and take-out
food, revealed complex narratives relating to the use of mobile apps in caregiving. The
interaction between the photographs and the associated conversations was important in
understanding what the participants wanted to express. As such, PEI facilitated richer dialogue to
better understand the participant’s message about their experiences. The use of photographs also
prompted participants to talk about difficult or abstract concepts as well as gave them the
opportunity to consider what they wanted to talk about at the interview. As a result, the
provided more meaningful accounts – which ultimately enhanced the richness of the narratives.
Conclusion
In this chapter, I have presented the findings of the study in which three main themes and
the affiliated subthemes were identified that represented family caregivers’ user experiences with
using mobile apps in their caregiving role. Of note, I have compiled a complete list of the mobile
apps and their descriptions that participants mentioned in the study in Appendix M. I have also
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presented the findings on how the use of PEI led to more comprehensive data through the
promotion of reflection among participants and richer dialogue during the follow-up interviews.
The overall findings provide a larger framework on how mobile apps should be conceptualized
so that it is relevant to the complex nature of caregiving in the dementia context. In the next
chapter, I present a discussion of the findings in relation to the current literature, the study
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CHAPTER SIX
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“When creating content, be empathetic above all else. Try to live the lives of your audience.”
– Rand Fishkin
(American Author)
INTRODUCTION
In this chapter, I present a discussion of the research findings and how these situate
within the current literature and theoretical understandings of the family caregiver experience in
the dementia context. In the first section, I address the main research question and the research
sub-questions relating to user experiences of family caregivers that guided this study: What are
the user experiences of family caregivers using mobile apps to assist in caregiving for their loved
ones living with dementia in the community? (main research question); What are family
caregivers’ perspectives on the use of mobile apps to support caregiving activities?; What are
the influences that impact the use of mobile apps for family caregivers?; How do family
caregivers use mobile apps during their caregiving activities? In addition, I also comment on
how the findings contribute to existing literature, and how the novel findings from this study can
inform how family caregivers use mobile apps in their caregiving role. In the second section, I
interviewing (PEI): What are family caregivers’ experiences of using photographs as a conduit
for explicating their user experiences? In this section, I explicate the impact of including
the end of each section, I outline the implications of the study findings. Lastly, at the end of this
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PART I: MOBILE APP USER EXPERIENCES OF FAMILY CAREGIVERS
Exemplifying the overarching theme, Connecting to support through mobile apps in my,
your, and our lives, the findings reflected how and why participants used mobile apps to support
the various challenges they faced in their caregiving role. The findings further revealed that the
role of mobile apps often shifted from meeting the individual needs of the caregiver, to the care
recipient, or to them as a dyad. Thus, highlighting how the impact of mobile apps for participants
In this section, I present a discussion of the three main themes and their affiliated
subthemes: (1) Adapting mobile apps to meet individual needs of the dyad; (2) Minimizing the
impact of the condition on the person and the family; and (3) Determining the effectiveness of
mobile apps. Under the first theme, the discussion revolves around family caregivers’
experiences of adapting available mobile apps to meet the individual needs of the care recipient
as well as themselves in three main areas: connecting with others, assisting with care activities,
and organizing everyday living. The concept of biographical disruption is explored under the
second theme to better understand how and why participants are using mobile apps to minimize
the impact of the condition on the care recipient as well as their families as a whole. Lastly, for
the third theme, the discussion focuses on the areas that promoted uptake and presented as
barriers towards continued use of mobile apps as well as how the findings are positioned within
Ultimately, the discussion illustrates the complex, multifaceted and nuanced caregiving
perspectives, the influences that impact their use of mobile apps, and how and why mobile apps
are used as a form of support in participants’ caregiving roles. In this section, I conclude with the
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implications of these findings in relation to education, practice, future app development, policy,
and research.
In this study, social support has been described as a central component of the lives of
participants and their family members living with dementia. Participants used various social
media and communication apps to communicate and connect with family, friends, and other
caregivers. This finding is expected given that increased social support has been found to reduce
social isolation and depression (Hensel, Parker-Oliver, & Demiris, 2007; Mickus & Luz, 2002),
have a positive impact on health and life satisfaction (Hensel et al., 2007; Mickus & Luz, 2002),
as well as increase the capacity for resilience-building for family caregivers of persons living
with dementia (Parkinson, Carr, Rushmer, Abley, 2016). Moreover, the importance of family
caregivers having the ability to connect with family, friends, and other caregivers in an
accessible manner through mobile apps are also demonstrated in other studies involving family
caregivers. For instance, in a study exploring the user experiences of family caregivers of
children with acute lymphoblastic leukemia who used a mobile app designed by researchers in
China, Wang and colleagues (2016) found that participants valued the function of the app where
they were able to connect and share with other caregivers. By doing so, the participants
described being able to find social support and gain confidence in caring for their children. The
participants also suggested adding communication tools such as QQ and WeChat, the most
popular social networking platforms in China, to extend their access of social support to family
and friends. Similarly, people living with Cystic Fibrosis (CF) in a mixed-methods study
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conducted by Hilliard and colleagues (2014) also contended that social networking apps can
increase social support opportunities for families and friends of people living with CF.
care and receive support as well as communicating with the care recipient as a crucial element of
their caregiving experiences. Family contact provided an important source of social support for
participants and their loved ones living with dementia. In response, participants in this study
described how mobile apps facilitated communication and contact in cases where distance is
traditionally a barrier to face-to-face interaction. They also emphasized the benefits of these apps
as they allowed for the ability to give and receive visual cues not afforded through an audio-only
telephone call. For participants, the video component of the communication enhanced the quality
of the social interaction and increased the perception of social presence. Indeed, researchers have
found that technology that enables both visual and verbal communication to be more beneficial
when compared to telephones (Hensel et al., 2007). Mobile apps, such as FaceTimeTM, can not
only accommodate for spoken words but also visual nonverbal cues such as facial expressions,
gestures, and posture. Physical appearance cues, such as clothing and hairstyle, as well as one’s
surrounding environment can also be communicated (Hensel et al., 2007). As a result, a greater
sense of social presence is achieved. These findings have significant parallels with Short and
colleagues’ (1976 as cited in Hensel et al., 2007) Social Presence Theory which posits that
influencing the interaction between individuals. They found that video with audio
communication has a higher degree of social presence than audio-only communication due to its
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In the context of caregiving, the visual component allowed participants to better evaluate
how the care recipient was doing and vice versa. They felt as though it was almost like being in
the same room as the care recipient. The video component enabled participants to feel a part of
the other person’s environment and to experience the setting in ways that would not be possible
in an audio-only communication method. This is line with previous research which has
demonstrated communicating using technology using video and audio communication, such as
videophones, was valuable for care recipients and their family caregivers as they enhanced the
quality of the social interaction (e.g. Mickus & Luz, 2002; Tsai & Tasi, 2010). In a study
conducted by Sävenstedt and colleagues (2003) which explored the use of videophones by
residents living with dementia in a nursing home, findings showed that the interaction achieved
by the videophones increased the attention and focus of residents as well as gave family
caregivers a greater sense of involvement. Moreover, in a case study Hensel and colleagues
(2007) conducted involving a nursing home resident and a family caregiver, the videophone
technology was found to enhance social presence as the participants expressed that the
experience was almost like being in the same room. Additionally, the participants highlighted the
benefit in using the videophone for assessing how the other was doing. These experiences
support findings by Demiris and colleagues (2008) as participants appreciated being able to see
their family members’ facial expressions, to have sense of closeness, and to obtain the
opportunity to assess the care recipient’s condition. Overall, participants found this form of
positively in reducing their feelings of isolation and loneliness (Demiris et al., 2008).
The study findings suggest that, with the added visual component, there are additional
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enhanced perceptions of social presence. This in turn helped participants maintain meaningful
relationships with other family members and the care recipient. Of note, research has shown that
the quality of family relationships and social support can impact the family caregivers’ desire to
institutionalize the care recipient (Spitznagel, Tremont, Davis, & Foster, 2006). Perhaps given
that the current study revealed that communication apps can have many benefits that ultimately
enhance the quality of family relationships and promote social support among family members,
further exploration is required to examine if the use of communication apps can influence the
outcomes of the care recipient (e.g. a family caregiver’s decision to institutionalize). It is also
important to recognize that in contrast to other studies, participants in this study used mobile
apps that were free of cost and easily accessible to them through their mobile device. On the
other hand, videophones – although described as low-cost – are more costly than mobile apps
(e.g. can cost up to $150 according to Demiris et al., 2008). As such, mobile apps have an
additional benefit of being more affordable than other alternatives which can be valuable for
family caregivers.
Furthermore, it was found in this study that mobile apps helped participants facilitate
their loved ones’ engagement in social activities despite changing functional abilities and thus,
preventing feelings of loneliness and social isolation. Researchers have indicated that persons
living with dementia tend to be isolated with few opportunities to communicate and to form
connections with others (Yasuda, Kuwahara, Kuwahara, Morimoto, & Tetsutani, 2013). Hence,
feeling connected to family, friends and the wider community is significantly valuable for this
population (Han, Radel, McDowd, & Sabata, 2016; Roland & Chappell, 2015). Given the many
benefits, social activities have been found to be strongly linked to well-being among persons
living with dementia as well as their family caregivers, suggesting the need for greater
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accessibility to social opportunities (Giebel & Sutcliffe, 2018; Giebel, Challis, & Montaldi,
2016). Thus, providing opportunities to communicate with family and friends via mobile apps is
one of the most important interventions for persons living with dementia (Kerkhof, Bergsma,
Graff, & Droes, 2017). Aligned with this, participants described using social media and
communication apps to help the care recipient stay connected with others, particularly with
family members and friends. These experiences are similar to those who participated in Asghar
and colleagues’ (2018) study on exploring the experiences of persons living with dementia who
use different assistive technologies for performing their daily activities. The participants believed
that assistive communication apps were crucial as it decreased their loneliness and resulted in
more socialization and interaction with family and friends. Notably, in another study conducted
by Kerkhof and colleagues (2017), participants, which comprised of persons living with
dementia and their informal caregivers, particularly valued apps that could stimulate social
contact and communication between them and their caregivers. These apps were reported as
helpful in giving persons living with dementia access to the world and thus, provided them a
sense of social inclusion. Interestingly, the authors emphasized that apps such as SkypeTM,
FaceTimeTM and WhatsAppTM – apps that participants in the present study described using – are
desirable for persons living with dementia and their caregivers given that it supports them in
being socially active. Overall, the findings discussed in this subtheme add to a growing body of
research that demonstrates the benefits of mobile apps in supporting persons living with
dementia and their family caregivers in garnering social support from family, friends, and other
caregivers.
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Assisting with Care Activities
In this study, participants indicated that the changing functional and cognitive capacity of
the family member living with dementia had an impact on their daily activities. Thus,
participants began taking on more responsibility for daily activities, and their loved ones relied
increasingly on their help. Given the increase in responsibilities, participants turned to mobile
apps to assist with their caregiving role. The findings shed light on how participants used mobile
apps to assist with ADLs and IADLs of their loved ones through three types of apps: (1)
reminder apps to help with managing medication administrations, making and keeping
appointments with healthcare professionals, and meeting personal care needs; (2) grocery- and
food-delivery apps to meet grocery shopping and nutritional needs; and lastly, (3) ride-sharing
and car-renting apps to address transportation needs. Of particular interest and relevance is the
finding that the use of mobile apps mainly focused on initiating the act of performing ADLs and
addressing IADLs. For example, reminder apps were the only form of apps that helped
participants with ADLs by having the mobile app prompt them when these tasks needed to be
completed so it will not be forgotten. This was especially important when their loved ones are at
a stage of dementia where they have difficulty in verbally communicating their self-care needs.
In this context, mobile apps were used to prompt and help participants initiate the care activity.
This is supported by previous research that indicated deficits in the initiation of activities can be
relatively easily addressed with the use of technology, in providing reminders and thus effective
triggers (Arntzen, Holthe, & Jentoft, 2016; Giebel & Sutcliffe, 2018).
addressing care activities related to IADLs. The focus on IADLs as opposed to ADLs may be
due to the complexity of the former. Researchers explained that completion of IADLs often
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require a complex set of behaviours and cognitive functions such as organizational ability, future
planning and prioritizing, and tend to decline in the early stages of dementia (Giebel, Sutcliffe, &
Challis, 2015; Giebel, Challis, & Montaldi, 2015; Ha & Kim, 2014). Thus, assistance from
family caregivers in this area of daily activities are prevalent and particularly appropriate for
mobile apps as evidenced by the findings of the current study. The specific areas of IADLs that
participants used mobile apps for assistance were found in the literature to be prominent tasks
that persons living with dementia face difficulties with. In a study by Pérès and colleagues
(2008), using transport and adherence to medications were significantly impaired in persons
living with dementia. In an ecological study involving direct observation, Bier and colleagues
(2013) found grocery shopping and meal preparation to be more impaired when compared other
activities. Notably, the findings of the current study correspond to results of earlier studies
wherein persons living with dementia and their family caregivers reported the following areas in
which assistance for the care recipient was most frequently required: grocery shopping, food
preparation, medication management, and transportation (Asghar et al., 2018; Giebel, Sutcliffe,
& Challis, 2017; Miranda-Castillo, Woods, & Orrell, 2013; Van der Roest et al., 2009).
Importantly, the findings unveiled that mobile apps can effectively assist family
caregivers with IADLs such as ordering culturally-appropriate meals. A salient example is how
Abigail used mobile apps to order culturally appropriate meals for her father when she was
unable to cook for him. This was important as her father was described to be a “picky-eater”.
Researchers have indicated that improving food intake among persons living with dementia is
imperative as they are likely to have poor nutritional states and thus, they should be offered food
that caters to their culture and preferences (Hanssen & Kuven, 2016; Kelly, 2016; Prizer &
Zimmerman, 2018). Given this emphasis, food-ordering apps assisted Abigail in meeting her
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father’s nutritional needs. Another prevalent example is the use of reminders to assist with
medication management, which was common in the current study. In a qualitative study
conducted by El-Saif and colleagues (2018), they also found that the use of reminder apps were
relatives living with dementia. Family caregivers in another qualitative study by Ruggiano and
colleagues (2019) also reported using mobile apps to manage appointments and medications for
their loved ones living with dementia. As such, there is growing evidence, consistent with the
current study, that family caregivers are presently use mobile apps to assist in care activities.
has shown that poorer IADL and ADL performance are significantly associated with reduced
well-being and quality of life in persons living with dementia and their caregivers as well as
heightened levels of caregiver stress and burden (Giebel et al., 2014; Giebel, Challis, &
Montaldi, 2016; Giebel & Sutcliffe, 2018). In fact, researchers suggested that the use of
technology in assisting with ADLs and IADLs could reduce the responsibilities and burden
placed on the caregiver (Giebel & Stucliffe, 2018; Klimova et al., 2018). As described by the
participants in this study, by using appropriate mobile apps, they can offer the necessary support
they require to effectively provide assistance in their loved ones’ daily activities. Consequently,
reinforced by the literature, supporting care recipients in their daily activities can result in
positive outcomes for both the person living with dementia and their family caregivers.
caregiver role. Mirroring the findings of this study, research has indicated that adult child
caregivers are typically at a stage in their lives where they often struggle to divide their time and
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resources between caregiving for their parents or grandparents and their other roles and
responsibilities, including being a spouse, parent, employee and student (Bastawarous, Gignac,
Kapral, & Cameron, 2015; Cohen, Cook, Kelley, Sando, & Bell, 2015; Wang, Shyu, Chen, &
Yang, 2011). In fact, the needs of adult child caregivers who may simultaneously balance work,
child caregiving, and school obligations are distinct from those of spousal and other types of
informal caregivers (Cohen et al., 2015). Unsurprisingly, many adult child caregivers experience
challenges in reconciling the multiple roles they hold, and this often results in them sacrificing
their leisure time, keeping a tight schedule, and reducing work hours or withdrawing from the
labour market overall in order to maintain their caregiving role (Wang et al., 2011).
The manner in which participants in this study described their understandings of their
experiences with holding multiple roles is similar to the tenets of the depletion/role strain
perspective. It is contended in the depletion/role strain perspective that individuals have a finite
amount of time and resources that can be allocated across roles (Bainbridge, Cregan, & Kulik,
2006; Rozario, Morrow-Howell, & Hinterlong, 2004). This view underscores the notion that
these fixed resources force trade-offs whereby a commitment to one role will reduce the
resources that could be allocated to another (Bainbridge et al., 2006; Rozario et al., 2004). In this
lens, an individual can experience stress created by the conflicting demands for limited
resources, which impacts the functioning in each role (Bainbridge et al., 2006). This principle
resonated with participants as they described the fact that they have a fixed amount of time and
energy. They also recognized that the multiple roles they held are inextricably intertwined and
thus, if one role is not well organized and managed, the impact can spill-over into the other roles.
As such, participants described how they turned to mobile apps for assistance in organizing the
tasks and responsibilities associated with their multiple roles. In doing so, mobile apps enabled
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participants to exhaust less of their time and resources into their other roles by helping them
organize their daily activities as well as by offering them the ability to complete tasks on the go
(i.e. during commutes). As a result, this left them with more time and energy which can then be
Summary
Ultimately, the findings in this theme highlight an important message, which is threefold,
about the experiences of family caregivers who adapt mobile apps to meet the needs of the dyad.
First, given the potential for social isolation associated with caregiving and dementia described
by participants, it is unsurprising that app-based socialization and connection with other people,
including family, friends and other caregivers, was a major focus for all participants. Second, the
use of mobile apps greatly supported participants in assisting with their loved ones’ ADLs and
IADLs, which they described as helpful in reducing the burden placed on them. Lastly, unique to
the adult child caregiver population are the multiplicity and combination of the roles they
occupy. This finding, in conjunction with past literature, indicates that adult child caregivers may
require support with managing the multiple demands (Bastawarous et al., 2015). Bearing this in
mind, participants in this study found mobile apps as an effective method to support the
caregivers.
Minimizing the Impact of the Condition on the Person and the Family
In this main theme, participants in the study described how they used mobile apps to
respond to the inevitable disruptions and changes that came into their lives as a result of
dementia. Dementia can cause disruption and change in not only the individual’s life, but also
the lives of their family members (Hasselkus & Murray, 2007). For the individual, dementia can
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impact their ability to continue involvement in familiar and meaningful activities. This form of
“biographical disruption” which illustrates how one’s sense of self and social world is affected
by chronic illness. Bury (1982) postulated that chronic illness can cause people to experience a
discrete rupture in their ability to enact familiar routines and activities as “the structures of
everyday life and the forms on knowledge which underpin them are disrupted” (p. 169). In the
first subtheme, participants highlighted the disruptions caused by the condition on their family
importance of meaningful activities in order to retain one’s personhood, participants in the study
used mobile apps to promote their loved one’s engagement in previous interests, hobbies, and
activities. The concept of personhood is explored under this subtheme with specific focus on the
intersection of the findings with the writings of Kitwood (1997) and other research pertaining to
meaningful activities.
This study moved beyond exploring disruptions at an individual level as the findings also
showed that while the condition is not their own, its presence can cause disruption in the lives of
the family as a whole and force major changes in the routines and traditions that constituted as
family life. These experiences support an earlier finding by Zimmermann (2013) where the
author found that adult child caregivers for persons living with dementia also experience a
disruption in their lives as they witness the progression of the condition on their loved ones.
Participants in the current study underwent what Phinney and colleagues (2013) referred to as a
“collective biographical disruption” which is built on the work of Bury (1982) to further
explicate how biography can be impacted on a family level as the focus of biographical
disruption is largely on the individual and not on the family as a whole. In the second subtheme,
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participants discussed how they strove to minimize the collective biographical disruptions by
using mobile apps to help maintain shared family routines and traditions.
An enlightening finding from this study was that participants asserted the importance of
seeing their relatives living with dementia first and foremost as people. Participants recognized
that their loved ones are experiencing biographical disruption caused by dementia which can
affect their sense of identity and how they see themselves (Bury, 1982). Despite the context of
this study and participant groups being very different, a close comparison with the biographical
disruption described by Bury can still be drawn. For instance, Bury identified the need to try and
maintain normal activities as a key feature of biographical disruption but this normality was
altered for his participants given that activities had to be restricted in the face of limited ability
due to chronic illness. In the same way, in the face of declining cognitive and physical abilities
of the care recipients, participants in this study spoke candidly of how they addressed those
biographical disruptions by celebrating who the care recipients were, and who they are now.
Additionally, they understood the need to maintain a sense of identity and normality for their
loved ones and felt that this can be best achieved through engagement in meaningful activities
that are based on their loved one’s needs, preferences, values, beliefs and life history. Closely
aligned with Bury’s work, Atchley (2000, as cited in Menne, Kinney, & Morhardt, 2002) further
continuity theory. Atchley argued that “people will attempt to preserve and maintain the
longstanding social patterns of living and coping that they identify as being uniquely their own”
(p. 143). In other words, people will strive to continue to engage in activities in which they view
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are a part of their identity, which is consistent with the study findings as illustrated through the
The notion of meaningful activities as central to one’s well-being in persons living with
dementia is well-documented in dementia research. Activity theory has long posited that older
adults who remain engaged in activities, particularly meaningful activities, experience improved
psychological and physical well-being than their counterparts who are less involved (Masbach,
Mace, Clark, & Firth, 2017; Roland & Chappell, 2015). In fact, there is a substantial body of
evidence linking involvement in meaningful activities and positive health outcomes for both
persons living with dementia and their family caregivers (see, for example, Genoe & Dupuis,
2014; Phinney, Dalke, & Purves, 2007; Roland & Chappell, 2015). What encompasses activity is
involvement (Vernooij-Dassen, 2007). In contrast, what makes it become meaningful is when the
activity promotes a sense of pleasure, connection, belonging, and identity (Masbach et al., 2017;
Vernooij-Dassen, 2007). It is important to note that persons living with dementia can also, and
often do, find meaning in activities previously considered as ordinary (Genoe & Dupuis, 2014).
However, escalating cognitive and physical impairments experienced by the person living with
dementia can restrict their engagement in meaningful activities (Roland & Chappell, 2015;
Vernooij-Dassen, 2007). Several studies have found that community-dwelling persons living
with dementia and their informal caregivers reported having a lack of meaningful activities for
persons living with dementia to participate in as a prominent unmet need (Black et al., 2013;
Miranda-Castillo, Woods, & Orrell, 2013; Van der Roest et al., 2009).
In this study, the participants reconciled the changes associated with dementia, drew upon
the support of mobile apps, and subsequently felt more in control of their situations. Participants
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recognized the importance of offering activities through mobile apps that reflected the care
recipient’s past experiences, interests, hobbies, and remaining capabilities. In doing so, they
provided a sense of continuity with their previous lifestyle and long-held beliefs for their loved
ones by allowing them to feel that they can still do things that matter most to them; as a result,
care recipients were able to sustain their sense of self (Han et al., 2016; Phinney et al., 2007).
Specifically, participants promoted the involvement in meaningful activities for care recipients
by using mobile apps that allowed care recipients access to previous interests and hobbies, such
apps), and being creative (colouring and puzzle apps). These findings mirror the results from a
study by Kerkhof and colleagues (2017) wherein participants who are persons living with
dementia and informal caregivers indicated that they preferred using apps that matched their
personal interests and hobbies, such as creative activities (e.g. knitting and drawing), being in
nature (e.g. sitting in the garden), listening to music, and watching TV. It is apparent that there is
emerging evidence suggesting that both persons living with dementia and their caregivers are not
only receptive, but actively engaging in the use of apps for completing meaningful activities.
Participants specifically chose to use mobile apps as a strategy to create opportunities for
the person to be involved in meaningful activities as it made the activities easier for them to
complete. This was particularly evident when Cassandra chose a colouring and gardening app for
her grandmother that she described was easy to use and follow. By doing so, her grandmother
was able to continue to enjoy the meaningful activities that she used to, such as colouring and
gardening. Phinney (2006) describes this strategy for supporting involvement in meaningful
environment that affords involvement by making the activities easier. Family caregivers
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implement this strategy in order to support their remaining abilities (Phinney, Dahlke, & Purves,
2013) and to encourage the loved one to continue to enact what is most important for their sense
of personhood (Phinney, 2006). In addition, participants in the current study sought help from
mobile apps and adjusted the activity in order for their loved ones to continue to enact the
activity. Although the nature of the activities was different (for example, in the case of
meaning and value were retained. The act of seeking help and altering the activity is also
described in a study by Genoe and Dupuis (2014) wherein persons living with dementia sought
help from family, friends, and formal service providers as well as altered their activities to match
their new capacities in order to prolong engagement in meaningful activities. Other strategies
reported in the literature include reminders, instructions, and accompanying the person living
with dementia to ensure success in the activity (Phinney, 2006). The type of strategies in which
family caregivers would enact to promote successful involvement in meaningful activities using
The findings further revealed that family caregivers have specific knowledge of their
relative living with dementia that can enable them to consider their previous interests, hobbies,
values and beliefs when promoting engagement in meaningful activities for the care recipient.
Participants were instrumental in supporting activity engagement and as the findings suggest,
activity can also be especially meaningful when it is shared between the care recipient and their
family caregiver. In the instance where Nadia described enjoying music through YouTubeTM
with her grandmother together, it demonstrates how an activity can become even more
meaningful through togetherness. Nadia indicated that by engaging in this form of activity
together that they both felt meaningful had a positive impact on their relationship, supporting the
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argument that meaningful activity enacted by the family caregiver and care recipient can
contribute to higher levels of relationship satisfaction and happiness (Genoe & Dupuis, 2014;
Roland & Chappell, 2015). In addition, the findings indicated that participation in meaningful
activities can also positively influence one’s sense of self-worth. For instance, by using mobile
apps to colour or to complete puzzles, Cassandra stated that it gave her grandmother a sense of
confidence and self-worth, and particularly, the opportunity to feel good about herself. Overall,
by successfully involving their loved ones in meaningful activities, participants identified many
positive outcomes, such as a strengthened bond with each other, increased feelings of self-worth,
independence, and pleasure, as well as enhanced sense of continuity, stability and identity.
(1997) description of personhood. Central to personhood is the recognition that the person living
with dementia has a self with a range of psychosocial needs including comfort, attachment,
crucial to personhood because individuals need to be more than simply occupied but engaged in
past and current interests and sources of fulfillment and pleasure (Fazio, Pace, Flinner, &
Kallmyer, 2018). Acknowledging personhood involves recognizing the needs, desires, emotions,
personality, and life story of the individual (Palmer, 2013), and this was particularly salient
throughout the narratives presented by the participants. In fact, promoting their loved one’s sense
of personhood was the predominant story line among participants in this study when discussing
the use of mobile apps for continued engagement of their relative in meaningful activities. A
sense of continuity is critical in establishing personhood (Perry & O’Connor, 2002) and as such,
participants identified retained abilities of their loved ones and implemented situations that
encouraged them to do as much as they could do. This was demonstrated by their use of mobile
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apps that required minimal effort on the part of the care recipient in order to become involved in
a meaningful activity. People define themselves “in relation to their long-standing patterns of
doing” (Phinney, Dahlke, & Purves, 2013, p. 364) and by engaging in meaningful activities,
participants believed that their relative was able to retain a sense of their personal identity as
“identities are closely tied to what we do” (Christiansen, 1999, p. 549 as cited in Phinney et al.,
2007). Consistent with other studies (e.g., Chung, Ellis-Hill, & Coleman, 2017; Hasselkus &
Murray, 2007; Phinney et al., 2013), participants used mobile apps as a form of support and
assistance in engaging their loved ones in meaningful activities which addressed many of their
relative’s psychosocial needs, such as comfort, pleasure, inclusion, occupation and identity – and
by addressing those needs, it ultimately promoted a sense of personhood for the care recipient.
The ability of the person to maintain personhood is not just reliant on their own
cognition, but those around the individual also have a duty to support their personhood
(Kitwood, 1997). Indeed, it is thought that personhood is bestowed by others “in the context of
relationship and social being” (Kitwood, 1997, p. 8). Participants in this study illustrated how,
regardless of their loved ones’ level of dependency or cognitive impairment, they ensured that
their relative remained actively involved in meaningful activities by reconciling the reality of
their condition and the consequent changes. Participants believed that actively engaging in
meaningful activities that preserved feelings of identity and pleasure was important to promoting
their loved ones’ sense of personhood and quality of life. By doing so, it ultimately contributed
to feelings of a meaningful and normal life (Genoe & Dupuis, 2014). The findings of the current
study provide further support for the notion that involvement in meaningful activities can
promote the personhood of the person living with dementia, and that family caregivers play an
important role in helping maintain this kind of involvement. More importantly, the findings also
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expand on this existing work by describing how family caregivers do this with the help of mobile
apps.
Davies and Gregory (2007) contended that research tends to view the persons living with
dementia and the family as “individuals living in parallel life spaces” (p. 481) rather than
considering the unified history and context of the familial relationship. Phinney and colleagues
(2013) also argued that much of the findings from research have not been situated in a family
context. In fact, few authors have considered the concept of biographical disruption in a family
context. Exceptions include some studies that have specifically explored the biographical
disruption experienced by family caregivers (Aasbø, Solbrække, Kristvik, & Werner, 2016;
Hasselkus & Murray, 2007; Hudson et al., 2016; Phinney et al., 2013). What is unique about the
present study in contrast to the work conducted by other researchers on biographical disruption is
the exploration of the family caregivers’ experiences of navigating those disruptions that occur at
Specifically, in the face of disruptions that are caused by dementia on the family unit,
participants illustrated how they strove to maintain long-standing family routines and traditions
by using mobile apps to facilitate, for example, the continuity of celebrating Eid and birthdays as
well as capturing memories through photographs. The mobile apps they used helped them
maintain their shared narrative as a family, as well as the routines, traditions, and practices that
constituted as who they are as a family. Using the family systems perspective to further
understand this experience on a family level, it is evident that families can experience collective
biographical disruption as the routines and traditions that constituted as family life can begin to
become difficult to uphold as a result of dementia (Phinney et al., 2013). Thus, families will try
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to overcome the disruption by doing what they can to maintain those routines and traditions to
sustain a sense of shared family identity (Phinney et al., 2013). The promotion of continuity and
normality by family caregivers through continued involvement in family routines and traditions
as seen in this study is also a salient aspect in several studies involving family caregivers. For
instance, Phinney and colleagues found in their study with persons living with dementia and their
family caregivers that family identity can be sustained through activity whereby participants
would continue to enact on important family habits and practices in order to maintain a shared
sense of who they were as a family. Similarly, other studies involving spousal caregivers and
their care recipients found that they believed it was important to continue to engage in previous
interests and rituals which had always characterized them as a couple in order to sustain their
relationship (Aasbø et al., 2016; Hellström, Nolan, & Lundh, 2007). In another study that
consisted of not only spousal caregivers but also adult child caregivers conducted by Hasselkus
and Murray (2007), the findings also exemplified how participants were trying to navigate the
Summary
In conclusion, the findings in this theme suggest that disruptions can occur on an
individual and family level as a result of dementia. The study first drew from Bury’s work on
biographical disruption to understand the experiences of living with dementia and the associated
disruptions for the individual, but then expanded to Phinney’s research on collective biographical
disruption to further explore disruptions that occur within families. Most salient in the
participants’ stories was how they addressed those disruptions through continued involvement
not only in meaningful activities for the care recipient, but also in shared routines and traditions
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for the family as a whole. Participants also stressed how mobile apps helped harmonize the
previous identity with the new identity that emerged from the biographical disruption process on
an individual and family level. For participants, this meant that they were able to maintain a
sense of personhood for the care recipient, as well as a sense of normality and stability for their
family. Considering the findings, it is worth noting that developers should consider the
enhancement of personhood and the continuity of family practices during app design.
Additionally, health and social care professionals could also assist family caregivers by
providing activity strategies and support resources, such as mobile apps, for continued
engagement of their relative in meaningful activities. This study adds to the current state of
knowledge on the experiences of living with dementia and the resultant disruptions it has on the
care recipient and the family, as well as how family caregivers can leverage mobile apps to
manage those disruptions. The findings further contribute to the theoretical understanding that
mitigating biographical disruptions on an individual and family level can be achieved through
the use of technology, such as mobile apps, which facilitates a return to one’s previous identity
In this study, participants outlined several characteristics and functions of mobile apps
that they identified as useful in addressing the practical, emotional and relational challenges in
their caregiving role, including simplicity, easy navigation, and interactivity and integration.
Additionally, when it came to what functions best facilitated continued use of mobile apps for
their loved ones living with dementia, participants also emphasized simplicity and easy
navigation. This finding is congruent with Rosenberg and colleagues’ (2012) study which
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contended that technology needed to be simple to use if a person living with dementia were to be
able to use it. They elaborated that this meant a lack of demands on the user and minimal chain
Of particular note is that many of the characteristics and functions voiced by this study’s
participants echoed the preferences of participants of other research that investigated user
experiences with mobile apps. Perhaps most universal is the desire for simplicity and easy
navigation wherein the app is easy to use and required low effort. For example, after examining
the usability of existing mobile apps for diabetes, depression, and caregiving through interviews
and direct observation, Sarkar and colleagues (2016) also recommended design features of apps
to enhance usability of an app similar to those echoed by the study participants. Some design
features include the “use of simple language supplemented by graphics through out; reducing the
number of screens for completion of each task; and reducing manual data entry as much as
possible” (p. 1424). Additionally, Peng and colleagues (2016) conducted a qualitative study to
explore the user perceptions of mHealth apps and found that ease of use and simplicity are top
desired features among participants that encouraged continued use of mHealth apps. Goodwin
and colleagues (2016) also found that their participants who are patients with mental health
conditions discussed the significance of apps being accessible, self-explanatory and simply laid
out. Other studies (e.g. Dennison, Morrison, Conway, & Yardley, 2013; Hilliard et al., 2014;
Middelweerd et al., 2015) echoed similar sentiments as their participants asserted the importance
of apps to be simple and require low effort. It is important to point out that the participants in
these studies are predominantly general users of mobile apps as well as patients with chronic and
non-chronic conditions, not always family caregivers. As such, the literature suggests that these
desired qualities are nearly universal and should be applicable to most mobile app designs.
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A paucity of literature exists in terms of the interactivity and integration component of
mobile apps. The desire for interactivity was a commonality found in a study by Peng and
colleagues (2016) where their participants expressed interest in the social networking features
and the sharing feature of apps as sharing information with family and friends increased
informational and emotional social support from them. Moreover, a finding from the current
study that is distinct from the literature is the area of integration when understanding factors that
influence the usefulness of a mobile app. In the context of this study, integration meant the
ability for a mobile app to be integrated and available in all forms of mobile devices, such as
smartphones, tablets, and laptops. This integration was described to be particularly important as
it meant that participants could use a specific app on whichever device that is suitable at the time
and it also provided the opportunity for participants to use an app in different settings. For
example, being able to use an app to complete tasks on a smartphone while commuting on the
bus and then using the same app afterwards on a laptop once the individual has arrived home. Of
note, these findings serve to complement and supplement the research of others as the literature
provides additional characteristics not mentioned in this study, such as appropriate text sizes, a
help button that is accessible and clear, and the use of warm colours (Kerkhof et al., 2017, p. 20-
21).
The participants’ experiences with identifying useful functions of mobile apps reflect
what embodies the concept of usability. Usability has been well-documented in the literature as
one of the main factors that can determine the success of mobile apps (Zapata, Fernandez-
Aleman, Idri, & Toval, 2015). According to the International Organization for Standardization
(ISO; 2018), usability is understood to be the ability to use a product with effectiveness,
efficiency, and satisfaction in a specific context of use. Effectiveness describes the completeness
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with which users achieve specified goals, efficiency refers to the resources (e.g. time, effort,
costs) used in relation to the results achieved, and lastly, satisfaction pertains to the extent to
which the user is satisfied as a result from actual use meeting the user’s needs and expectations
(ISO, 2018). In the context of this study, participants discussed factors of efficiency (e.g.
simplicity and easy navigation wherein they ultimately wanted apps that required minimal
resources) that promoted the effectiveness (as evidenced by participants achieving their goals
when using apps to assist with caregiving) and the satisfaction (as demonstrated by participants
stating that the apps met their needs which led to app adoption and continued use) towards the
apps they use. With this understanding in mind, the findings further support existing evidence
that usability is important to consider when designing and developing apps for this population.
Overall, the findings and previous research (e.g. Zapata et al., 2015) suggest that increased
usability of an app can lead to higher levels of adoption and continued use.
Moreover, after further examination, it is evident that the categories of useful functions
identified by participants closely resemble constructs within prominent theories and models, such
as the Technology Acceptance Model (TAM) (Davis, 1989) and the Unified Theory of
Acceptance and Use of Technology (UTAUT) (Venkatesh et al., 2003), that predict technology
acceptance. For instance, simplicity and easy navigation are related to the perceived ease of use
(degree to which people believe that using a particular system would be free of effort) and the
effort expectancy (degree of ease associated with the use of the system) construct in TAM and
UTAUT respectively, which are used to predict one’s intentions to use a piece of technology in
these theories. While these theories and frameworks can be useful to uncover and examine user
experiences and technology acceptance, it may not be possible to examine the areas unique to
mobile apps and the experiences of this population through this lens. Consistent with other
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studies, my study findings suggest that there are other factors that are overlooked in these
theories related to aging, including specific biophysical (e.g. cognitive and physical decline) and
psychosocial (e.g. loneliness) characteristics (Chen & Chan, 2011; Peek et al., 2014), as well as
related to living with dementia, such as particular issues experienced by this population (e.g.
social isolation, desire for meaningful activities, maintaining longstanding practices, need for
safety) (Thordardottir, Fange, Lethin, Gatta, & Chiatti, 2019). These theories also offer an
explanation of areas that impact acceptance of multiple types of technology rather than factors
that are more technology specific, such as those unique to mobile apps. For instance, participants
spoke about benefits, such as interactivity and integration, which are functions of mobile apps
that are distinct from other forms of technology. Moreover, these theories have disregarded the
fact that technology acceptance can fluctuate over time as they primarily focussed on the pre-
implementation stage (when a piece of technology has not been used) instead of the post-
implementation stage (when users have used and experienced a technology) (Peek et al., 2014),
which is the case in this study. In fact, research has found that perceived ease of use can differ
Sponselee, 2012, as cited in Peek et al., 2014). Additionally, Peek and colleagues (2014) also
found that different types of implementation factors for older adults, such as fear of
stigmatization and desire for aging in place, exist which are not considered by prominent
technology acceptance theories. Thus, more investigation towards technology acceptance in the
form of mobile apps specifically by persons living with dementia and their family caregivers are
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Envisioning the Potential of Mobile apps
Gaps in available mobile apps were identified by participants as they discussed the
potential of apps to better support them as family caregivers. In fact, in a study that
systematically identified and appraised current apps targeting and available for caregivers of
persons living with dementia, Brown and colleagues (2019) found that most apps available have
limited features and do not provide the multiple features required to meet the complex needs of
caregivers. Supporting those findings, participants in this study indicated two kinds of gaps that
currently exist: (1) areas of app functionality; and (2) caregiving needs that apps are addressing.
Specific areas of app functionality that can be improved, such as having multiple
language options and multiple functions within a single app, identified by participants finds
support in findings from other research. Similarly, in a study by Kerkhof and colleagues (2017)
that involved persons living with dementia and their family caregivers, findings indicated the
need for the language used in apps to be adjustable in the user’s own language. Brown and
colleague (2019) found that few apps targeting caregivers were available in languages other than
in English. This gap is particularly problematic in a country like Canada as nearly 6.6 million, or
20%, of Canadians reported speaking a language other than English or French at home (Statistics
Canada, 2018).
Participants also wanted apps that are multifunctional, such that the app integrates
multiple functions within a single, cohesive program. They explained that this form of a “one-
stop-shop” in a mobile app would reduce the need to navigate several apps to achieve various
goals as they can accomplish it within one app. This was consistent with other studies whereby
participants expressed preference towards having a multifunctional app (e.g. Hilliard et al.,
2014). In particular, Zelinski and colleagues (2017) found, through their search of all apps
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focused on caregivers of older adults in Google Play and iTunes, that apps mainly addressed
specific categories of support, such as information and resources, family communication, and/or
caregiver-recipient interactions. They noted that most apps were not comprehensive in nature as
only a few had features that addressed more than three categories. As such, the authors
recommended that mobile apps provide multiple beneficial support functions to address
caregiver’s needs in a comprehensive manner. Brown and colleagues (2019) further supported
this recommendation as they argued that the more functions an app has, the more likely a
caregiver can address their various, complex, and changing caregiving needs within a single app,
needs that can be materialized into an app. The finding of having an app that enables
communication and sharing of information with healthcare providers in this study is consistent
with study findings in people living with HIV (Ramanathan, Swendeman, Comulada, Estrin, &
Rotheram-Borus, 2013) and eating disorders (Juarascio, Goldstein, Manasse, Forman, & Butryn,
2015). The findings of the current study, along with other research, highlight the desire of
patients and caregivers to have greater access to their healthcare team. However, Brown and
colleagues (2019) found that none of the available apps they reviewed connect caregivers with
the care recipient living with dementia’s healthcare providers. It is important to note that mobile
apps have the ability to collect and organize information and promote true family-centered care
family caregivers (Brown et al., 2019). As such, developing apps to facilitate communication
between family caregivers and healthcare providers can address an unmet need in this
population.
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A common and priority need that was envisioned were for mobile apps to address safety-
related issues with the care recipient, such as falls, emergencies, wayfinding, and forgetting to
turn off appliances. These issues are prominent among persons living with dementia as they are
exposed to higher risk of incidents (e.g. falls, wayfinding) due to gait and balance problems as
well as cognitive impairments (Gagnon-Roy et al., 2017). In a study examining the unmet needs
in community-dwelling persons living with dementia and their caregivers, Black and colleagues
(2013) found that the most common unmet need reported was in the domain of safety, such as
fall risk management, home safety evaluation and wander risk management. For family
caregivers, managing these issues and balancing risk reduction with encouraging an active
lifestyle with their relative living with dementia often presents to be a major challenge and thus,
they have been especially receptive to using technology for assistance in this area (Gagnon-Roy
et al., 2017). The findings of this study highlight the pressing need of developing apps to address
these areas of concern. Supporting this aim, many researchers have started to develop and test
Holliday, 2017) and to help older adults self-assess and monitor their individual fall risk (Rasche
et al., 2017). By supporting persons living with dementia and their family caregivers in these
safety-related needs, it can reduce the risk of incidents which can ultimately improve outcomes
Summary
recognition of the benefits of the mobile app and this was influenced by the characteristics and
functions of the apps, including simplicity, easy navigation, and interactivity and integration.
Participants also described aspects of apps that required improvement and areas of concerns that
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they wanted mobile apps to address. These findings provide a further understanding of the
requirements necessary to meet the needs and preferences of this population. In fact, the findings
of this study highlight the need for mobile apps to possess characteristics and functionalities
matching the end-users’ preferences in order to promote sustained engagement and continued use
Study Implications
The increasing use of mobile apps is facilitating patient- and family-centered care as well
as patient engagement in health promotion and maintenance activities (Billings, 2015). Indeed, it
is estimated that more than 100,000 health-related apps exist, while more are under development
(Xu & Liu, 2015). The emergence of mobile apps in healthcare will require health and social
care professionals to acquire additional skills and competencies, including knowing how to use
the technology as well as how to evaluate the quality and appropriateness of a particular app. In
fact, the College of Nurses of Ontario (2014a; 2014b) indicated in the entry-to-practice
competencies of both Registered Nurses and Registered Practical Nurses that nurses need to
technology in promoting and providing safe nursing care. Similarly, the Canadian Gerontological
Nursing Association (2010) noted in the gerontological nursing competencies and standards of
practice that gerontological nurses should promote and maintain optimal function, independence
and safety among older adults through the use of appropriate technology and assistive devices.
Thus, educators have a significant role in updating curricula and programs to equip students in
training to be health and social care professionals with those skills and competencies (Billings,
2015). The National League for Nursing (NLN; 2015) recommended that educators integrate the
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use of mobile technology into learning experiences and clinical experiences. Furthermore, they
asserted that faculty must align curricula with current technological advances and incorporate
competencies in informatics and technology through the program of learning (NLN, 2015). It is
imperative to consider these recommendations in order to prepare students for the technological
world of health care, especially considering the growing use of mobile apps.
The present findings have implications for practice regarding dementia care and family
caregiving. Participants in this study were most likely to have received information about various
kinds of mobile apps from doing searches on their own or less frequently, from family and
friends. This is in line with other research where family caregivers of persons living with
dementia reported that rely on their own personal knowledge rather than health and social care
professionals when it comes to using technology in caregiving (Gibson et al., 2015; Newton et
al., 2016). They stressed that minimal information and support from health and social care
professionals about how to access pieces of technology and how it can be used to assist in their
caregiving role is provided to them (Gibson et al., 2015; Newton et al., 2016). Thus, health and
social care professionals who frequently meet with persons living with dementia and their family
members should have up-to-date knowledge of available and credible mobile apps for use in
dementia care and caregiving. They should also be aware of the capabilities and limitations of
the apps and provide appropriate support and education. Persons living with dementia and their
family caregivers should be offered possible mobile app resources throughout the progression of
the condition as their needs may change or expand. This can be accomplished through regular
information and training for health and social care professionals, and including information
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Implications for Future App Development
The study findings underscore the need for developers and researchers to involve end-
users (e.g. persons living with dementia and their family caregivers) throughout the app
development process. The value of incorporating end-user perspectives during the early stages of
design and development of new mobile apps is well supported by a growing body of research
(Hirchey et al., 2018; Meiland et al., 2017; Reynoldson et al., 2014). Researchers argue that the
potential of mobile app interventions can not be materialized unless the design and development
take in account of the users’ experiences (Hilliard et al., 2014; Reynoldson et al., 2014). The
findings unveiled the complex and nuanced caregiving experiences of family caregivers and
thus, it is essential to holistically examine the context in which family caregivers and their care
The findings also suggest that the usefulness of an app often changes based on the family
caregivers’ needs or the condition of the care recipient. Hence, designers will need to consider
and adapt the mobile app to the changing needs of its end-users in order for it to continue to be
perceived as useful over a long period. In other words, it is important to evaluate whether an app
can continue to provide support throughout each stage of the care recipient’s condition as needs
may evolve as the condition progresses and/or as changes arise in the life of the family caregiver.
Overall, aligning with the current literature, the study findings suggest that the functionalities
and features of apps should match the individual needs, wishes and abilities of persons living
An increasingly number of care recipients and their family caregivers are using mobile
apps in their lives. However, participants in this study identified areas of caregiving needs that
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they wish mobile apps could address, which is presently not available. Thus, government bodies
and health care organizations should consider providing more funding towards projects aimed at
developing apps for this population and their needs. It is important to note that some
organizations, although scarce, have already funded and developed mobile apps for persons
living with dementia and their family caregivers with promising outcomes. They include the
Dementia Advisor app funded in part by the Government of Canada’s Social Development
Partnership Program as well as the Dementia Talk app funded in part by the Centre for Aging
and Brain Health Innovation at Baycrest and the Government of Canada’s New Horizons for
Seniors Program – which were both developed by Sinai Health System and the Reitman Centre
in Toronto, Canada. However, both apps are only addressing one important caregiving need as
they were designed to support caregivers in tracking and responding to changing behaviours and
functions of persons living with dementia. As shown in the findings, family caregivers
experience a variety of complex challenges and needs in their caregiving role and thus, more
apps need to be developed to address those needs. Lastly, legislators should also consider
creating policies that will support research and development towards technological solutions that
The demographic profile of the participants in this study warrant additional studies to
explore the experiences of different groups of family caregivers. For instance, all the participants
in the study were female and between the ages of 18 and 35 years old and thus, future studies
should explore the experiences of family caregivers who are male as well as family caregivers
who are younger than 18 years old and above 35 years old. This is important to consider as
researchers have found that the family caregiving experiences for male caregivers differ from
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those of female caregivers (Mc Donnell & Ryan, 2011). Researchers have also found that when
compared to their younger counterparts, people older than 30 years old have different knowledge
and attitudes towards the use of mobile apps (Rahman et al., 2017). Additionally, given that none
of the participants were living in a rural setting, further research can explore experiences of
technology use that could exist between rural and non-rural populations (Ruggiano, Brown, Li,
& Scaccianoce, 2018). Studies could also examine the experiences of using mobile apps among
other types of caregivers to assist with care, such as spouses and friends.
Moreover, since this study only focused on the experiences of adult child family
caregivers, further research should explore the experiences of the care recipient using mobile
apps. The findings indicated that persons living with dementia, with the support of the family
caregivers, are using mobile apps in their daily lives. To develop technologies that are useful and
valuable for persons living with dementia, a thorough understanding of the different types and
stages of dementia and its associated experiences are required as persons living with dementia
should not be treated as a homogenous group given that experiences will be different for people
with various stages or types of dementia (Meiland et al., 2017; Suijkerbuijk et al., 2019). Thus,
future studies should involve persons living with dementia to explore their experiences of living
with dementia, their needs, and their perspectives as researchers have found that persons living
with dementia can express their needs and preferences consistently, even in an advanced stage of
dementia (Meiland et al., 2017; Span et al., 2013). Researchers have also indicated that their
participation in research have improved the usefulness and acceptability of the various
technological devices developed (Span, Hettinga, Vernooij-Dassen, Eefsting, & Smits, 2013).
Persons living with dementia’s extensive insight into their dynamic needs, wishes and abilities
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can also inform health and social care professionals on what types of mobile apps are
meaningful, appropriate and suitable for this population during care provision. Ultimately, in line
with person-centered care, future studies should provide persons living with dementia their
desired level of involvement in the development of mobile apps as well as design research
methods that are inclusive and accessible for this population. To facilitate involvement from this
interviews, observations, focus groups, workshops, and questionnaires (Suijkerbuijk et al., 2019;
This study also revealed several new findings that offer direction for future research in
this area. For example, investigating the impact of apps in facilitating meaningful activities on
the care recipient’s well-being. Additionally, research evaluating features and functions of
mobile apps that promote usability and continued use among this population would be beneficial
when designing future apps targeted specifically for persons living with dementia. Longitudinal
studies can also be implemented to examine the use, benefits, and barriers of mobile apps over
time. These studies can provide information on when is the most appropriate time to introduce
mobile apps and for what areas as well as what type of apps are most helpful during the various
stages of dementia. Future studies can also involve both the family caregiver and care recipient
as a dyad in order to further explore the dynamics of dyadic interaction and their effects on both
parties when mobile apps are used in caregiving. Overall, additional research is necessary to
assess the impact of app use on the outcomes for the care recipient and their family caregivers.
There is also a dearth of research on health and social care professionals’ perceptions of
apps (Peng et al., 2016). This is problematic as persons living with dementia and their family
caregivers require reliable, accurate and up-to-date information in order to access mobile apps
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for assistance and they often rely on health and social care professionals for guidance (Gibson et
al., 2016). As such, future research regarding their awareness about and experience with mobile
apps is warranted.
INTERVIEWING (PEI)
The use of photographs in studies is prevalent in the literature, and in the field of
dementia research (e.g. Evans, Robertson, & Candy, 2016; Genoe & Dupuis, 2013; Wiersma,
2011). Yet, very little of the previous research have specifically explored the experiences of
using photographs in interviews from the perspective of participants (see, for instance,
Edmondson, Brennan & House, 2018; Warner, Johnson, & Andrews, 2016). Unlike a majority of
studies, the study findings focused on the participants’ own perspectives, rather than those of the
Participants found that the photography activity was flexible enough to fit within their
everyday schedule and was suitable for the range of differing abilities they possessed. For
example, Cassandra opted to use a professional camera and computer software to edit her
photographs, while others took the photographs through their smartphones. All participants were
able to produce five photographs that they were willing to share and discuss. While at first,
participants were concerned about the difficulty of transforming abstract ideas into photographs,
the overall consensus was that it was an enjoyable and worthwhile activity. Using a visual
methodology that focused on mobile apps and how they are used in their caregiving role,
by using the autodriving approach whereby the photographs were taken by participants,
participants in this study were able to choose the information they wanted to share and how they
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wanted to represent their experiences (Shell, 2014). Importantly, this process enabled
participants to control the process of image production, dissemination, and narration (Asiedu,
As with other research (Shell, 2014), the findings unveiled that the photographs and the
ensuing dialogue provided participants the opportunity to fully explore and reflect more in-depth
on their experiences. Fascinatingly, the photographs and the subsequent dialogue also
encouraged participants to talk about things they viewed as normal parts of everyday life which
often goes unnoticed (Marsh, Shawe, Robinson, & Leamon, 2016). This was particularly salient
when participants, through our discussion together, came to realize aspects of their caregiving
experiences and their use of mobile apps that were overlooked. Additionally, the reflexive effect
of using photographs in interviews also led to the discussion of thoughts and feelings that have
laid dormant (Marsh et al., 2016). Using photographs to represent caregiving experiences
required effort, abstract thinking, and reflexivity from participants (Edmondson et al., 2018).
Taking photographs gave participants a new perspective of their experiences and also a greater
appreciation for the role of mobile apps in their caregiving role. Some of photographs portrayed
a variety of uses of mobile apps and conveyed a sense of the participant’s innovative, organized
and well-thought-out strategies that constituted their caregiving practices. Overall, participants
felt that the photographs encouraged them to talk about aspects of their experiences that may not
The photographs also promoted richer dialogue and introduced new dimensions of the
participants’ experiences that I, as the researcher, had not considered. Furthermore, the
photographs helped build rapport between the participant and myself by bridging the distance
between the researcher and participant. This can be seen in the depth and extent of the topics that
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were discussed in the second interview which was facilitated by the use of photographs. The
example, grief and loss is an accepted impact of dementia (Lindauer & Harvath, 2014) but seeing
an image of blurred Polaroids and hearing Cassandra describe how this represents her reflection
of the effect of dementia on her grandmother gave a much more vivid understanding of its
impact. Arguably, the photographs provided insight into difficult, emotional or otherwise
sensitive issues and experiences (Clark & Morriss, 2017). Such issues, including grief and loss,
decline in health of a loved one, and management of changes in life associated with dementia as
discussed by many of the participants, can be difficult to articulate and through the use of
photography, participants felt it made describing challenging topics easier. In cases such as these,
Clark and Morriss (2017) explained that photographs are beneficial because they can be viewed
as a neutral or displaced element around which to express and advance discussion. In other
words, they act “as a kind of ‘third object’ around which participants and researchers can focus”
(Clark & Morriss, 2017, p. 36), making sensitive topics less difficult to discuss and articulate.
The experiences of the participants who engaged in the use of photographs in the follow-
up interview align with findings from other studies that have explored participants’ experiences
with PEI (e.g. Edmondson et al., 2018; Warner et al., 2016). Also consistent with other studies, I
for generating rich data. Using participant-produced photographs in PEI enabled participants to
have control over image creation and meaning-making. As a result, this yielded a more in-depth
discussion of participants’ experiences and elicited longer and more comprehensive follow-up
interviews. Including photographs facilitated richer dialogue and offered greater insight than
could be accomplished through verbal-only interviews when I compared the depth of the
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discussion in the first interview versus the second in this study. Meo (2010) also argued that
compared to verbal-only interviews, interviews that involved photographs allowed for the
emergence of unexpected topics, enabled making sense of some data which otherwise would
have been challenging to interpret, and elicited longer and more enjoyable discussions.
Ultimately, given that the photographs are generated by the participants themselves, the process
led to a more comprehensive exploration and discussion of the experiences that are most salient
to participants. As a result, the photographs and subsequent dialogues offered a glimpse to the
realities of the lives of participants that was not previously explored (Wong, George, Godfrey,
While a wealth of literature attests to the benefits of PEI, researchers need to carefully
evaluate whether this technique would help them gain a deeper exploration of the phenomenon
under study. They will also need to assess the feasibility of carrying out PEI given that the time
and effort involved is more demanding than traditional, verbal-only interviews (Meo, 2010). As
demonstrated in Chapter 4, researchers will have to manage the different types of ethical,
methodological and practical challenges that can emerge before, during and after photo-
elicitation interviews (Meo, 2010). Nevertheless, drawing on my own positive experiences, PEI
can ultimately lead to a richer understanding of the phenomenon under study. Past research
endeavours have also demonstrated that including photographs in the research process as suitable
for use with many different populations, ranging from children (Torre & Murphy, 2015) to
persons living with dementia (Genoe & Dupuis, 2013), and different lived experiences, such as
living with depression (Sandhu, Ives, Birchwood, & Upthegrove, 2013) and cancer (Wong et al.,
2019). Riley and Manias (2004) emphasized that the use of photography needs to be promoted in
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nursing as a method that can enrich traditional forms of data collection. Moreover, Balmer and
colleagues (2015) highlighted that nurse researchers are able to access patients’ social
environments and lived experiences in a way that may be richer than interviewing alone. They
also contended that this will result in a greater understanding of the impact of illness. By
presenting the study data in the form of photographs, the authors further elaborated that it can
and lay groups, and has the potential to reach a far greater and more diverse audience. Based on
my experiences and those of other researchers, PEI has the potential to not only empower
participants to become more engaged in the research process, but also enable researchers to
To the best of my knowledge, this is the first study that explored the experiences of
family caregivers of persons living with dementia who use mobile apps in their caregiving role.
Thus, the findings contribute to a growing body of evidence about the potential benefits of
mobile apps for family caregivers as well as the importance of considering the needs of the
persons living with dementia and their family caregivers during all stages of mobile app
development. Furthermore, in this study, the use of photograph added a supplementary layer of
explanation to participants’ narratives and experiences. In doing so, this enabled me to have a
experiences. Sandhu and colleagues (2013) emphasized that PEI has a unique focus on involving
and engaging participants in the process of data collection (taking photographs) and initial
analysis (explaining what the photographs mean during the interview) which adds to the
credibility of the data. The authors argued that it allows for participant’s own views about the
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meaning and importance of various aspects of the data to be highlighted. As such, in this study, I
was able to collect ample data using multiple methods and data collection points which
Several limitations to this study should be considered. Participants were all female and
between the age of 18 to 35 years old which does not fully represent the population of adult child
family caregivers of persons living with dementia. Confirming the trends in literature, there is a
paucity of studies pertaining to male caregiving in the dementia context (Mc Donnell & Ryan,
2011); perhaps due to barriers to participation in research that exist for men or gendered burden
of care as family caregivers are more likely to be women in Canada (Turcotte, 2013). Moreover,
adult child family caregivers not within the ages of 18 to 35 years old did not participate in this
study and thus, the experiences and perspectives of this particular group of family caregivers
who belong to different generations than the participants in this study are missing from the
findings.
Given the purpose of this study, only family caregivers were recruited rather than both
the care recipient and the family caregiver together as a dyad. As such, the findings may be
limited in providing a comprehensive understanding of the shared changes and experiences that
occur as dementia progresses in the dyad, including their relationship, reciprocal interaction, and
level of interdependence (Moon & Adams, 2012). Persons living with dementia also did not
participate in this study and while family caregivers can provide important insight into the care
recipient’s experiences, it cannot act as a substitution as the care recipient may have different
In addition, the study was conducted in Ontario with the majority of participants from
Toronto, thus the contexts of their caregiving experiences may not be the same as those from
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other geographical regions. Lastly, although participants were offered the option to have the
interviews in-person, all of them opted to have telephone interviews. With telephone interviews,
I might have missed important visual cues and nonverbal gestures. This was an unavoidable
limitation given that it was the participants’ decision. Considering that all of the participants
were either working or in school full-time in addition to caregiving, it could be plausible that
participants felt telephone interviews were more convenient to fit into their busy schedules.
Alternatively, researchers have argued that participants may have felt more comfortable and
Conclusion
What are the user experiences of family caregivers using mobile apps to assist in caregiving for
Pursuing this line of inquiry, I gained a richer understanding of the myriad and complex
everyday challenges that family caregivers face and the impact mobile apps have on their
caregiving role. I began this thesis research with my own story as it related to my experiences as
a care recipient, family caregiver, and formal healthcare provider. I explicated how this
experience informed the direction of my thesis. As I began my thesis journey, through reviewing
the literature, I came to understand that no research has explored the experiences of family
caregivers of persons living with dementia in the context of mobile apps and how as a result,
With the exploratory approach used in this study, user experiences of family caregivers of
persons living with dementia were discovered which aptly illustrated the multidimensional
nature of family caregiving. This study adds to our growing understanding of the complexity of
family caregiving to persons living with dementia and how mobile apps can address the diverse
188
needs and issues that the care recipient and their family caregivers may face on a regular basis.
Additionally, this study demonstrated how technology can mitigate disruptions associated with
dementia on the individual and the family as a whole through the novel use of mobile apps.
These findings illuminated that apps not only helped with care provision, but also allowed for
richer interpersonal connections to form as it enabled for relationships to flourish and in some
cases, served as a platform for reciprocal caring. The findings also broadened the concept of self
extension (Belk, 1988) as it revealed that mobile apps can serve as an extension of the caring
self. Through this study, the narratives of the participants highlighted the need to understand
their experiences as their preferences, perspectives, and most importantly, their creative solutions
to everyday challenges with which they are intimately familiar with are imperative to future
mobile app developments. As a result, this study builds on existing models of person-centered
care to recognize the significance of technologies for family caregivers in supporting the social
world of care recipients. This study further expands our understanding that person-centred care
can extend to include tailored use of technology such as mobile apps. Such understanding, while
preliminary, provides some beginning direction in this regard for those who are involved in
dementia care, including family caregivers, persons living with dementia, and health and social
care professionals. While this study has focused on family caregivers of persons living with
dementia residing at home, findings can potentially inform practice in both community and
189
EPILOGUE
FINAL THOUGHTS
190
As I reflected upon the experiences in my thesis journey, I realized that the narratives of
participants which showcased their resilience and fortitude during some of the most difficult and
challenging times will have a lasting impact in my life. Thus, I wanted to end my thesis simply
“A bridge can still be built, while the bitter waters are flowing beneath.”
– Anthony Liccione
191
APPENDIX A
Mobile Apps in the Dementia Context
# Authors Name of App Description of Targeted Design/Methods Domain Significant Findings
& Year App Group of App
1 Abu- A Mobile To remind Individuals Designed by authors based Manage- Has potential to assist
Dalbouh Reminder individuals who are who are on the literature. ment individuals who are
et al., App for elderly and living elderly and elderly and living with
Care
2015 Elderly and with Alzheimer’s living with Alzheimer’s disease live
provision
Alzheimer’s disease the dates Alzheimer’s independently and
patients and dose of their disease Quality improve their quality of
(prototype) medications, food of life life.
times, and
important events.
2 Acharya Dementia To provide Persons Not mentioned. Manage- In the preliminary stages.
et al., HelpDesk practical support living with ment
2017 for family dementia
Care
caregivers of a and their Authors hope to involve
provision
loved one with family healthcare professionals in
dementia, including caregivers Quality future stages.
GPS navigation, of life
fall detection, mind
games, and a
doctor registry.
3 Bhatta- Living and To provide an Persons Developed with a wide Manage- Preliminary evaluation
charyya et Dying Well accessible living with range of healthcare ment from caregivers indicate
al., 2017 educational dementia professionals and that the app can enhance
resource to educationalists in family preparedness of
192
# Authors Name of App Description of Targeted Design/Methods Domain Significant Findings
& Year App Group of App
with promote and their collaboration with the Care informal/family caregivers
Dementia understanding of caregivers Alzheimer’s Society, the provision as well as can be for
dementia, its Gold Standards Framework formal healthcare
Quality
impact on those and the End of Life providers in care home
of life
affected, and the Partnership (EOLP). settings.
key issues in end of
life care.
4 Brown et CareHeroes To support Family Informed by the Family- Manage- Caregivers used and
al., 2016 individuals caring caregivers, Centered Theory. ment valued the capacity to
for loved ones with case assess and document care
Employed a user-centered Care
Alzheimer’s managers, recipient behaviour
design and involved end- provision
disease or other and primary disturbances and mood on
users in the content
forms of dementia. care Quality a regular basis through an
development.
providers of life app. The resulting
information are helpful to
healthcare providers
working with caregivers to
manage care recipient
behaviours and caregiver
distress.
5 Burns et BPSD Guide To support Formal Content incorporates Manage- Clinicians reported that the
al., 2017 clinicians by caregivers evidence-based outcomes ment app was useful in
providing ready from an extensive literature supporting them to care for
Care
access to concise, review and consultation persons living with
provision
evidence-based with experienced clinicians dementia presenting with
information across Australia. Quality BPSD by providing them
relevant to the ten of life
193
# Authors Name of App Description of Targeted Design/Methods Domain Significant Findings
& Year App Group of App
most commonly ready access to evidence-
presenting based information.
behavioural and
psychological
symptoms of
dementia (BPSD).
6 Cook & Serious To increase General Employed a user-centric Aware- Shown to increase
Twidle, Games awareness of Public design and lean user ness knowledge of symptoms
2016 symptoms of experience methodology to and behaviours relating to
dementia – develop the prototypes. Alzheimer’s disease
specifically among users during
Evaluation of the app was
Alzheimer’s evaluation.
undertaken with three stages
Disease.
and 15 end-users.
7 Davis et Story-Call To deliver Informal Grounded in the Resiliency Manage- Family caregivers who
al., 2014 personalized story- caregivers Model of Family Stress, ment evaluated the app felt that
telling support, Adjustment and Adaptation. continuing to use it would
Care
dementia care enable them to handle
Developed by a team of provision
information, and stress and family
experts in mobile
community Quality relationships more
technology and dementia
resources to of life effectively, as well as find
care (e.g. nurse, software
caregivers of community healthcare
specialist, gerontologist,
community- resources more easily.
linguist).
dwelling persons
living with
dementia.
194
# Authors Name of App Description of Targeted Design/Methods Domain Significant Findings
& Year App Group of App
8 Docking The Pain To help formal Formal Developed in collaboration Manage- The results showed that
et al., Assessment caregivers (health caregivers with the Computing and ment the app was a potentially
2018 App professionals) Mathematical Sciences useful tool in the
Care
assess pain in department at the University prehospital setting.
provision
patients living with of Greenwich.
“By providing access to a
advanced dementia.
Designed based on the tool specifically developed
Abbey Pain Scale. to help identify/assess pain
in a user-friendly format,
Conducted usability testing
paramedics are likely to
with paramedic students and
a Delphi panel of qualified have increased knowledge
paramedics. Usability and confidence in
testing focus groups were assessing pain in patients
conducted. with dementia” (p. 1121).
9 Filoteo et ReminX To provide a Informal Developed by Dthera Quality Persons living with
al., 2018 platform for users caregivers Sciences and based on the of life dementia reported
to upload pictures concept of reminiscence significantly less anxiety,
and narrations to therapy. depression, and overall
create slideshow emotional distress after
stories depicting Involved 14 persons living having viewed their story
with mild to moderate
important moments via the app.
dementia and their
in the person living
caregivers in the evaluation Caregivers also reported
with dementia’s of the app using various that the care recipient
life. questionnaires. appeared less emotionally
distressed.
195
# Authors Name of App Description of Targeted Design/Methods Domain Significant Findings
& Year App Group of App
10 Halbach mYouTime To provide help on Informal The learning units were Manage- The authors reported a
et al., demand and covers caregivers developed by the academic ment high degree of user
2018 topics on medical community at satisfaction and a high
Diakonhjemmet and Care
and psychological rating of experienced
Western Norway University provision
issues; usefulness of the app
communication, of Applied Sciences. Quality among users.
legal and financial The authors also surveyed of life
issues; and available literature and
practical advice for research as well as
everyday complemented findings with
challenges. data from focus group
interviews with informal
caregivers.
11 Imbeault AP@LZ To support the day- Persons Created by the authors, Manage- Participants, who were
et al., to-day activities of living with which is made up of a ment persons living with
2018 persons living with Alzheimer’s multidisciplinary team. Alzheimer’s disease whose
Care
Alzheimer’s disease profiles differed notably
Five persons living with provision
disease. (age, cognitive and social
Alzheimer’s disease were
Quality characteristics), found the
recruited to test the app.
of life app beneficial. All of the
participants were able to
learn how to operate
AP@LZ’s functions and to
use them in their activities
of daily living.
196
# Authors Name of App Description of Targeted Design/Methods Domain Significant Findings
& Year App Group of App
12 Kerkhof FindMyApps To help users find Persons The development was Manage- The development team
et al., apps for self- living with inspired by user experience ment gained an understanding of
2019 management and mild design and Agile issues regarding usefulness
Quality
meaningful dementia methodology. and issues to increase user-
of life
activities that suit friendliness through the
Developed using a “user-
individual needs, user-participatory design.
participatory design” that
wishes, and The authors “succeeded in
involved users (persons
abilities of people making a workable tool
living with dementia and
living with with an unambiguous
informal caregivers) and
dementia. routing for finding apps,
experts (designers,
which requires minimal
developers and researchers)
effort from the target
closely collaborating.
group to master” (p. 13).
13 Krauskopf Dementi- To offer support Family Created by Baylor Scott & Manage- Information provided is
& Golden, Assist App strategies for caregivers White Health, the largest ment practical.
2016 caregivers to assist not-for-profit Texan
Care Guides the caregiver to
them in dealing healthcare system.
provision manage difficult
with difficult
Launched in March 2015. behaviours of care
behaviours of Quality
recipients with a positive
persons living with Incorporates the Positive of life
demeanour.
dementia. Physical Approach.
Described as user-friendly
Contain the most
and easy to navigate.
common
behavioural
expressions by the
persons living with
dementia, possible
197
# Authors Name of App Description of Targeted Design/Methods Domain Significant Findings
& Year App Group of App
causes, and
suggested actions
to take for the
behavioural
expression.
14 Meiland COGKNO-W To support persons Persons A user participatory method Manage- Evaluation results showed
et al., Day living with mild living with was implemented, which ment that participants found
2012 Navigator dementia in their mild consisted of three one-year CDN as user-friendly and
Care
(CDN) daily lives in terms dementia cycles with field tests in useful.
provision
of memory, social Amsterdam, Belfast, and
contacts, daily Lulea. Quality
activities, and of life
Persons living with
safety.
dementia and their
caregivers participated in
interviews, observations,
questionnaires, logging, and
diaries to collect data on
usability.
15 Moreira et STAIz To provide Persons Throughout the Manage- Despite the app being in
al., 2013 healthcare living with development phase, ment the initial phases, the
providers with dementia usability tests were results are promising in
Care
relevant and their performed with caregivers that it can support the
provision
information about caregivers in order to evaluate the diagnosis, tracking and
persons living with app’s usability. rehabilitation of persons
dementia’s living with dementia as
progress. well as provide
198
# Authors Name of App Description of Targeted Design/Methods Domain Significant Findings
& Year App Group of App
To empower improvements in cognitive
persons living with rehabilitation.
dementia with a
way to perform
cognitive
rehabilitation
exercises.
16 Peisachov SafeHome To train users to Informal Designed using best- Manage- Participants’ report of the
-ich et al., identify common caregivers practice guidelines to ensure ment app was overwhelmingly
2018 safety hazards in the app content was of high positive.
Care
the home through clinical quality. A content
provision Majority (71%) of
gaming. expert, in collaboration with
responses indicated the
a design team, informed the
The game presents experience with the app as
process and the design
users with a “wonderful” and “almost
choices. The team drew on
furnished digital wonderful”.
gaming-design theory and
kitchen containing
used interactive 3D game Majority (71%) of
potential hazards
technology. responses indicated that
and users must
the end-user experience
identify hazards. An empirical usability
was “satisfying” or “near
They are guided approach was employed.
satisfying”.
through this game Heuristic evaluation was
with a mascot who conducted by content
provides experts. Usability testing
encouragement and with caregivers was
explanations for implemented where they
correct and completed a questionnaire
and participated in focus
199
# Authors Name of App Description of Targeted Design/Methods Domain Significant Findings
& Year App Group of App
incorrect groups after using the app
selections. for 30 minutes.
17 Pitts et al., An adapted To support Formal Design informed by an Manage- Use of the app both
2015 version of the reflective learning caregivers existing model of computer- ment motivated and increased
Yammer app to deliver more support reflective learning different styles of care note
Care
person-centred and instantiated with recording.
provision
care. findings from a pre-design
Little reflective learning
study in one residential Quality
was identified or reported.
home. of life
18 Sasaki, No name A mobile app in the General Design informed by the Prevent- The designed app is
2016 mentioned: A early stages of Public literature. ion expected to provide
smart-phone development that preventive care for the
app provides provides preventive elderly.
preventive care and
care for the information about
elderly with early signs of
dementia dementia.
19 Savita et MyDem To help users in Persons Three major stages were Manage- All of the participants
al., 2018 recognizing living with conducted: (1) data ment agreed that they could
frequently dementia collection where interviews easily identify the intended
encountered and their with persons living with object with the help of
objects through caregivers. dementia and their MyDem.
image processing caregivers took place; (2)
and to encourage prototype development; and
users in (3) validation.
200
# Authors Name of App Description of Targeted Design/Methods Domain Significant Findings
& Year App Group of App
remembering their User testing was Being able to identify their
past through past implemented with four daily used items without
memory narration persons living with depending on their
of old photos. dementia in Alzheimer caregiver made the
Center Perak in Malaysia. participants feel that the
app satisfied their needs.
20 Sindi et CAIDE Based on the General Authors collaborated with Prevent- First app of its kind to
al., 2015 Dementia CAIDE Dementia public Merz Pharmaceuticals ion predict the risk for
Risk Score Risk Score. GmbH (Germany). dementia through an
App important evidence-based
An evidence-based
Diagnose tool.
tool that allows
users to detect their Encourages users to
individual risk, actively decrease their
provides guidance modifiable risk factors and
for risk postpone cognitive
modification, and impairment and dementia.
suggests consulting
a healthcare
practitioner if
required to discuss
appropriate
lifestyle
interventions to
reduce risk factors.
21 Solanas et m-Carer Privately monitors Persons Not mentioned. Manage- A non-invasive tool aimed
al., 2013 the location of living with ment at assisting caregivers to
persons living with dementia supervise the regular
201
# Authors Name of App Description of Targeted Design/Methods Domain Significant Findings
& Year App Group of App
dementia and and their Care activities of persons living
allows their safe caregivers provision with dementia whilst
recovery if “they respecting their
Quality
get lost or fundamental right to
of life
disoriented” (p. privacy.
20).
22 Sposaro et iWander Designed to Persons Designed by the authors Manage- More use of this app will
al., 2010 alleviate stress, living with using the Bayesian network ment increase its accuracy.
financial burden, dementia techniques, which is a
Care Has a significant potential
and offer easier and their model for determining the
provision for caregivers to cost-
remote monitoring caregivers probability that an event
effectively monitor
for caregivers of occurs given other relevant Quality
persons living with
persons living with variables. of life
dementia.
dementia by
notifying the
caregiver of
wandering
behaviour.
Has Global
Positioning System
(GPS) and
communication
capabilities that
help navigate
persons living with
dementia to a safe
location, notify
202
# Authors Name of App Description of Targeted Design/Methods Domain Significant Findings
& Year App Group of App
caregivers, and
provide the current
location of persons
living with
dementia and call
911.
23 Varshney AlzhaTV To allow family Informal Design informed by Manage- Preliminary responses of
et al., members and caregivers literature. ment care recipients have been
2016 friends to stay extremely positive and
Care
connected with family members are also
provision
their loved ones very satisfied.
living with Quality
Patients are showing some
dementia residing of life
improvements in their
at a nursing home
symptoms as well as a
through making
reduction of as-needed
and uploading
medication use.
videos which are
instantly displayed
on the care
recipient’s
television.
24 Zachos et The Carer To support Formal Design informed by Manage- Evaluation of the app in
al., 2013 App caregivers to caregivers observations of care work, ment the residential home
generate new ideas interviews with caregivers, indicated that caregivers
Care
to reduce and pilot-testing in a were able to use the app to
provision
challenging residential home in England. deliver novel care as well
behaviours. as generate, reflect on, and
203
# Authors Name of App Description of Targeted Design/Methods Domain Significant Findings
& Year App Group of App
Quality improve ideas to reduce
of life challenging behaviours in
residents.
25 Zorluoglu Mobile A medium to General Design informed by 33 Diagnose The app could differentiate
et al., Screening conduct neuro- public questions from 14 neuro- people with healthy
2015 Test psychological tests psychological tests of 8 cognitive abilities from
for early detection different cognitive functions individuals who were
of dementia. (arithmetic, orientation, diagnosed with dementia
abstraction, attention, with statistical
memory, language, visual, significance.
and executive functions).
204
APPENDIX B
8. Provide a statement specifying the number of retrieved articles at the end of the search.
Adapted from Kable, A. K., Pich, J., & Maslin-Prothero, S. E. (2012). A structured approach to
documenting a search strategy for publication: A 12 step guideline for authors. Nurse Education
Today, 32(8), 878-886.
205
APPENDIX C
Table of Inclusion and Exclusion Criteria Used for Literature Review Search
206
daughter-in-law, cousin, caregivers, healthcare
etc. professionals.
Population 2: Any type of dementia that Dementia is a
is the primary and sole secondary or joint issue
People living with
issue under investigation. under investigation.
dementia
Intervention: Any mobile app designed Any mobile app not
for dementia care, designed for dementia
The use of a mobile
particularly for family care.
app
caregivers of persons
living with dementia.
Comparator:
Non-use of a mobile
app or not applicable
Outcome(s) of Studies that evaluated the Studies that did not
Interest: impact of the designed evaluate the impact of
mobile app on improving the designed mobile
Improved caregiver
caregiver outcomes and/or app on improving
outcomes and/or
meeting their caregiving caregiver outcomes
meeting the needs of
needs. and/or meeting their
the caregiver
caregiving needs.
Article English language, full Non-English language,
Characteristics text, studies published no full text, studies
from 1997 (inclusive) to published before 1997.
present, empirical studies
from any geographical
location, and peer-
reviewed.
Grey English language, full Non-English language,
Literature text, literature published no full text, studies
Characteristics from 1997 (inclusive) to published before 1997.
present, any geographical
location, and published by
reputable government,
healthcare, or non-profit
organizations.
207
APPENDIX D
Adapted from: Moher, D., Liberati, A., Tetzlaff, J., Altman, D. G., & The PRISMA Group.
(2009). Preferred Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA
Statement. PLOS Medicine, 6(6), e1000097. doi:10.1371/journal.pmed1000097
208
APPENDIX E
Literature Review References
Article Author(s) Year Title
Number
Family Caregiving
1. Armstrong, P., & Kits, O. 2001 One hundred years of caregiving.
2. Bowers, B. J. 1987 Intergenerational caregiving: Adult
caregivers and their aging parents.
3. British Columbia Law n.d. Chapter 2 – Family caregiving in BC.
Institute
4. Chappell, N. L., & Funk, L. 2011 Social support, caregiving, and aging.
M.
5. Etters, L., Goodall, D., & 2008 Caregiver burden among dementia patient
Harrison, B. E. caregivers: A review of the literature.
209
Experiences of Family Caregivers of Persons Living with Dementia
12. Alzheimer Society of 2010 Rising Tide: The impact of dementia on
Canada Canadian society.
13. Andrén, S., & Elmståhl, S. 2005 Family caregivers’ subjective experiences
of satisfaction in dementia care: Aspects of
burden, subjective health and sense of
coherence.
14. Ashwill, R., Mulhall, S., 2015 Caregiving experience for people with
Johnson, D. K., & Galvin, J. Lewy Body Dementia: Spouse versus adult
E. child.
15. Brodaty, H., & Donkin, M. 2009 Family caregivers of people with dementia.
16. Brodaty, H., Thomson, C., 2005 Why caregivers of people with dementia
Thompson, C., & Fine, M. and memory loss don’t use services.
17. Canadian Institute for 2018 Almost half of unpaid caregivers of seniors
Health Information with dementia experience distress: New
report paints national picture of dementia
and its impact on health systems and
Canadians.
18. Capistrant, B. D. 2016 Caregiving for older adults and the
caregivers’ health: An epidemiologic
review.
19. Chappell, N. L., Dujela, C., 2014 Spouse and adult child differences in
& Smith, A. caregiving burden.
20. Chiu, M., Wesson, V., 2013 Improving caregiving competence, stress
Sadavoy, J. coping, and mental well-being in informal
dementia carers.
21. Chua, J., & Pachana, N. A. 2016 Use of a psychoeducational skill training
DVD program to reduce stress in Chinese
Australian and Singaporean dementia
caregivers: A pilot study.
22. Clyburn, L. D., Stones, M. 2000 Predicting caregiver burden and depression
J., Hadjistavropoulos, T., & in Alzheimer's disease.
Tuokko, H.
23. Colantonio, A., Kositsky, A. 2001 What support do caregivers of elderly
J., Cohen, C., & Vernich, L. want? Results from the Canadian Study of
Health and Aging.
24. Conde-Sala, J. L., Garre- 2010a Differential features of burden between
Olmo, J., Turró-Garriga, O., spouse and adult-child caregivers of
210
Vilalta-Franch, J., & López- patients with Alzheimer's disease: An
Pousa, S. exploratory comparative design.
25. Conde-Sala, J. L., Garre- 2010b Quality of life of patients with Alzheimer’s
Olmo, J., Turró-Garriga, O., disease: Differential perceptions between
Vilalta-Franch, J., & López- spouse and adult child caregivers.
Pousa, S.
26. Connell, C. M., Janevic, M. 2001 The costs of caring: Impact of dementia
R., & Gallant, M. P. on family caregivers.
27. Cooper, C., Katona, C., 2008 Coping strategies, anxiety and depression
Orrell, M., & Livingston, G. in caregivers of people with Alzheimer’s
disease.
28. Crespo, M., López, J., & 2005 Depression and anxiety in primary
Zarit, S. H. caregivers: A comparative study of
caregivers of demented and nondemented
older persons.
29. de Rotrou, J., Cantegreil, I., 2011 Do patients diagnosed with Alzheimer’s
Faucounau, V., Wenisch, E., disease benefit from a psycho-educational
Chausson, C., Jegou, D., programme for family caregivers? A
Grabar, S., & Rigaud, A. S. randomised controlled study.
30. del-Pino-Casado, R., 2019 The association between subjective
Cardosa, M. R., López- caregiver burden and depressive symptoms
Martínez, C., & Orgeta, V. in carers of older relatives: A systematic
review and meta-analysis.
31. Devor, M., & Renvall, M. 2008 An educational intervention to support
caregivers of elders with dementia.
32. Di Mattei, V.E., Prunas, A., 2008 The burden of distress in caregivers of
Novella, L., Marcone, A., elderly demented patients and its
Cappa, S. F., & Sarno, L. relationship with coping strategies.
211
35. Gallagher, D., Mhaolain, A. 2011 Self-efficacy for managing dementia may
N., Crosby, L., Ryan, D., protect against burden and depression in
Lacey, L., Coen, R. F., Alzheimer’s
Walsh, C., Coakley, D., caregivers.
Walsh, J. B., Cunningham,
C., & Lawlor, B. A.
36. Gottlieb, B. H., & Wolfe, J. 2002 Coping with family caregiving to persons
with dementia: A critical review.
37. Hebert, R., Dubois, M. F., 2001 Factors associated with long-term
Wolfson, C., Chambers, L., institutionalization of older people with
& Cohen, C. dementia: Data from the Canadian Study
of Health and Aging.
38. Hong, G. R. S., & Kim, H. 2008 Family caregiver burden by relationship to
care recipient with dementia in Korea.
39. Hsu, C. C., Wang, Y. M., 2017 Sustained benefit of a psycho-educational
Huang, C. R., Sun, F. J., training program for dementia caregivers
Lin, J. P., Yip, P. K., & Liu, in Taiwan.
S. I.
40. Hunt, C. K. 2003 Concepts in caregiver research.
41. Karg, N., Graessel, E., 2018 Dementia as a predictor of care-related
Randzio, O., & Pendergrass, quality of life in informal caregivers: A
A. cross-sectional study to investigate
differences in health-related outcomes
between dementia and non-dementia
caregivers.
42. Kim, H., Chang, M., Rose, 2012 Predictors of caregiver burden in
K., & Kim, S. caregivers of individuals with dementia.
43. Kneebone, I. I., & Martin, 2003 Coping and caregivers of people with
P. R. dementia.
44. Lai, D. W. L., & Surood, S. 2008 Service barriers of Chinese family
caregivers in Canada.
45. Lee, Y., & Smith, L. 2012 Qualitative research on Korean American
dementia caregivers' perception of
caregiving: Heterogeneity between spouse
caregivers and child caregivers.
46. Lewis, M. L., Hobday, J. V., 2010 Internet-based program for dementia
& Hepburn, K. W. caregivers.
212
47. Lilly, M. B., Robinson, C. 2012 Can we move beyond burden and burnout
A., Holtzman, S., & to support the health and wellness of
Bottorff, J. family caregivers to persons with
dementia? Evidence from British
Columbia, Canada.
48. Lloyd, J., Patterson, T., & 2016 The positive aspects of caregiving in
Muers, J. dementia: A critical review of the
qualitative literature.
49. Lwi, S. J., Ford, B. Q., 2017 Poor caregiver mental health predicts
Casey, J. J., Miller, B. L., & mortality of patients with
Levenson, R. W. neurodegenerative disease.
50. Madaleno, T. R., Moriguti, 2019 Mood, lifestyle and cardiovascular risk
J. C., Ferriolli, E., De Carlo, factors among older caregivers of patients
M. M. R., & Lima, N. K. with Alzheimer’s disease dementia: A
case-control study.
51. Mavounza, C., Ouellet, M. 2018 Caregivers’ emotional distress due to
C., & Hudon, C. neuropsychiatric symptoms of persons
with amnestic mild cognitive impairment
or Alzheimer’s disease.
52. Milne, A., Guess, R., & 2014 Pyscho-educational support for relatives of
Russ, A. people with a recent diagnosis of mild to
moderate dementia: An evaluation of a
‘Course for Carers’.
53. Morgan, D. G., Semchuk, 2002 Rural families caring for a relative with
K. M., Stewart, N. J., & dementia: Barriers to use of formal
D’arcy, C. services.
54. Novais, T., Dauphinot, V., 2017 How to explore the needs of informal
Krolak-Salmon, P., & caregivers of individuals with cognitive
Mouchoux, C. impairment in Alzheimer’s disease or
related diseases? A systematic review of
quantitative and qualitative studies.
55. Ory, M., Hoffman, P., Yee, 1999 Prevalence and impact of caregiving: A
J., Tennstedt, S., & Schulz, detailed comparison between dementia and
R. nondementia caregivers.
56. Ott, C. H., Sanders, S., & 2007 Grief and personal growth experience of
Kelber, S. T. spouses and adult-child caregivers of
individuals with Alzheimer's disease and
related dementias.
213
57. Papastavrou, E., 2007 Caring for a relative with dementia: Family
Kalokerinou, A., caregiver burden.
Papacostas, S. S., Tsangari,
H., & Sourtzi, P.
58. Peacock, S., Forbes, D., 2010 The positive aspects of the caregiving
Markle-Reid, M., Hawranik, journey with dementia: Using a strengths-
P., Morgan, D., Jansen, L., based perspective to reveal opportunities.
Leipert, B. D.,
& Henderson, S. R.
59. Pinquart, M., & Sörensen, 2011 Spouses, adult children, and children-in-
S. law as caregivers of older adults: A meta-
analytic comparison.
60. Quinn, C., Nelis, S. M., 2019 Caregiver influences on ‘living well’ for
Martyr, A., Morris, R. G., people with dementia: Findings from the
Victor, C., & Clare, L. IDEAL study.
61. Reed, C., Belger, M., 2014 Caregiver burden in Alzheimer's disease:
Dell'Agnello, G., Wimo, A., differential associations in adult-child and
Argimon, J. M., Bruno, G., spousal caregivers in the GERAS
Dodel, R., Haro, J. M., observational study.
Jones, R. W. & Vellas, B.
62. Rinaldi, P., Spazzafumo, L., 2005 Predictors of high level of burden and
Mastriforti, R., Mattioli, P., distress in caregivers of demented patients:
Marvardi, M., Polidori, M. Results of an Italian multicenter study.
C., Abate G, Bartorelli, L.,
Bonaiuto, S., Capurso, A.,
Cucinotta, D., Gallucci, M.,
Giordano, M., Martorelli,
M., Masaraki, G., Nieddu,
A., Pettenati, C., Putzu, P.,
Tammaro, V.A,, Tomassini,
P.F., Vergani, C., Senin, U.,
& Capurso, A.
63. Schoenmakers, B., Buntinx, 2010 Factors determining the impact of care-
F., & Delepeleire, J. giving on caregivers of elderly patients
with dementia. A systematic literature
review.
64. Shim, B., Barroso, J., & 2012 A comparative qualitative analysis of
Davis, L. L. stories of spousal caregivers of people with
dementia: Negative, ambivalent, and
positive experiences.
214
65. Springate, B. A., & 2012 Dimensions of caregiver burden in
Tremont, G. dementia: Impact of demographic, mood,
and care recipient variables.
66. Stall, N. M., Kim, S. J., 2019 Association of informal caregiver distress
Hardacre, K. A., Shah, P. S., with health outcomes of community‐
Straus, S. E., Bronskill, S. dwelling dementia care recipients: A
E., Lix, L. M., Bell, C. M., systematic review.
& Rochon, P. A.
67. Stewart, M., Barnfather, A., 2006 Accessible support for family caregivers of
Neufeld, A., Warren, S., seniors with chronic conditions: From
Letourneau, N., & Liu, L. isolation to inclusion.
68. Sun, F. 2014 Caregiving stress and coping: A
thematic analysis of Chinese family
caregivers of persons with dementia.
69. Tremont, G., Davis, J. D., 2008 Telephone-delivered psychosocial
Bishop, D. S., & Fortinsky, intervention reduces burden in dementia
R. H. caregivers.
70. Vandepitte, S., Putman, K., 2018 Factors associated with the caregivers’
Van Den Noortgate, N., desire to institutionalize persons with
Verhaeghe, S., Mormont, dementia: A cross-sectional study.
E., Van Wilder, L., De
Smedt., D., & Annemans, L.
71. Van Mierlo, L. D., Meiland, 2011 Personalised caregiver support:
F. J. M., Van der Roest, H. Effectiveness of psychosocial interventions
G., & Droes, R. M. in subgroups of caregivers of people with
dementia.
72. Ward-Griffin, C., Hall, J., 2012 Dementia home care resources: How are
DeForge, R., St-Amant, O., we managing?
McWilliam, C., Oudshoorn,
A., Forbes, D., & Klosek,
M.
73. Yu, S. F. D., Cheng, S. T., 2018 Unravelling positive aspects of caregiving
& Wang, J. in dementia: An integrative review of
research literature.
Technology and Caregiving
74. Benefield, L. E., & Beck, C. 2007 Reducing the distance in distance-
caregiving by technology innovation.
75. Bier, N., Paquette, G., & 2018 Smartphone for smart living: Using new
Macoir, J.
215
technologies to cope with everyday
limitations in semantic dementia.
76. Boots, L. M., de Vugt, M. 2014 A systematic review of Internet-based
E., van Knippenberg, R. J., supportive interventions for caregivers of
Kempen, G. I. J. M., & patients with dementia.
Verhey, F. R. J.
77. Buettner, L. L., Yu, F., & 2010 Evidence supporting technology-based
Burgener, S. C. interventions for people with early-stage
Alzheimer’s Disease.
78. Godwin, K. M., Mills, W. 2013 Technology-driven interventions for
L., Anderson, J. A., & caregivers of persons with dementia: A
Kunik, M. E. systematic review.
216
86. Lee, J. A., Nguyen, H., 2017 Usages of computers and smartphones to
Park, J., Tran, L., Nguyen, develop dementia care education program
T., & Huynh, Y. for Asian American family caregivers.
87. Lorenz, K., Freddolino, P. 2019 Technology-based tools and services for
P., Comas-Herrera, A., people with dementia and carers: Mapping
Knapp, M., & Damant, J. technology onto the dementia care
pathway.
88. Mao, H. F., Chang, L. H., 2015 Indicators of perceived useful dementia
Yao, G., Chen, W. Y., & care assistive technology: Caregivers'
Huang, W. N. W. perspectives.
89. Maresova, P., Tomsone, S., 2018 Technological solutions of older people
Lameski, P., Madureira, J., with Alzheimer’s disease: Review.
Mendes, A., Zdravevski, E.,
Chorbev, I., Trajkovik, V.,
Ellen, M., & Rodil, K.
90. Martin, F., Turner, A., 2013 Conceptualisation of self-management
Wallace, L. M., & intervention for people with early stage
Bradbury, N. dementia.
217
97. Smith, S. K., & Mountain, 2012 New forms of information and
G. A. communication technology (ICT) and the
potential to facilitate social and leisure
activity for people living with dementia.
98. Topo, P. 2009 Technology studies to meet the needs of
people with dementia and their caregivers.
99. Torp, S., Hanson, E., 2008 A pilot study how information and
Hauge, S., Ulstein, I., & communication technology may contribute
Magnusson, L. to health promotion among elderly spousal
carers in Norway.
100. Tyack, C., & Camic, P. M. 2017 Touchscreen interventions and the well-
being of people with dementia and
caregivers: A systematic review.
101. Washington, K. T., 2011 Information needs of informal caregivers
Meadows, S. E., Elliot, S. of older adults with chronic health
G., & Koopman, R. J. conditions.
102. Zhao, Y., Feng, H., Hu, M., 2019 Web-based interventions to improve
Hu, H., Li, H., Ning, H., mental health in home caregivers of people
Chen, H., Liao, L., & Peng, with dementia: Meta-analysis.
L.
Mobile Apps
103. Abu-Dalbouh, H., Al- 2015 A mobile reminder system for elderly and
Habeeb, A., Al-Kholifi, A., Alzheimer's patients.
Al-Motiry, I., & Al-
Buhairy, M.
104. Acharya, M. H., Gokani, T. 2017 Android application for dementia patient.
B., Chauhan, K. N., &
Pandya, B. P.
105. Bhattacharyya, S., Benbow, 2017 Mobile app: Living and dying well with
S. M., & Collins, E. dementia.
106. Brown, E. L., Ruggiano, N., 2016 CareHeroes web and Android™ apps for
Roberts, L., Hristidis, V., dementia caregivers: A feasibility study.
Whiteman, K. L., Castro, J.,
& Page, T. F.
107. Burns, K., Jayasinha, R., & 2017 Evaluation of an electronic App developed
Brodaty, H. to assist clinicians in the management of
behavioral and psychological symptoms of
dementia (BPSD).
218
108. Cook, B., & Twidle, P. 2016 Increasing awareness of Alzheimer’s
Disease through a mobile game.
109. Davis, B., Nies, M., Shehab, 2014 Developing a pilot e-mobile app for
M., & Shenk, D. dementia caregiver support: Lessons
learned.
110. Docking, R. E., Lane, M., & 2017 Usability testing of the iPhone app to
Schofield, P. A. improve pain assessment for older adults
with cognitive impairment (prehospital
setting): A qualitative study.
111. Filoteo, J. V., Cox, E. M., 2018 Evaluation of ReminX as a behavioral
Split, M., Gross, M., Culjat, intervention for mild to moderate
M., & Keene, D. dementia.
112. Halbach, T., Solheim, I., 2018 A mobile application for supporting
Ytrehus, S., & Schulz, T. dementia relatives: A case study.
113. Imbeault, H., Gagnon, L., 2018 Impact of AP@LZ in the daily life
Pigot, H., Giroux, S., of three persons with Alzheimer’s disease:
Marcotte, N., Cribier- Long-term use and further exploration of
Delande, P., Duval, J., its effectiveness.
Bocti, C., Lacombe, G.,
Fulop, T., & Bier, N.
114. Kerkhof, Y., Pelgrum- 2019 User-participatory development of
Keurhorst, M., FindMyApps; A tool to help people with
Mangiaracina, F., Bergsma, mild dementia find supportive apps for
A., Vrauwdeunt, G., Graff, self-management and meaningful
M., & Dröes, R. M. activities.
115. Krauskopf, P. B., & Golden, 2016 AIDSInfo HIV/AIDS Guidelines App and
A. DementiAssist App.
219
118. Peisachovich, E., Jokel, R., 2018 SafeHome app: Design and usability for a
Appel, L., Da Silva, C., digital application to promote physical
Sinclair, D., & Soroor, W. safety to persons living with dementia.
119. Pitts, K., Pudney, K., 2015 Using mobile devices and apps to support
Zachos, K., Maiden, N., reflective learning about older people with
Krogstie, B., Jones, S., dementia.
Rose, M., MacManus, J.,
& Turner, I.
120. Sasaki, H. 2016 A smartphone app provides preventive
care for the elderly with dementia.
121. Savita, K. S., Marrima, J. J. 2018 Help me! MyDem application for early
D. A., Muniandy, M., stage dementia patients.
Abidin, A. I. Z., & Taib, S.
M.
122. Sindi, S., Calov, E., 2015 The CAIDE Dementia Risk Score App:
Fokkens, J., Ngandu, T., The development of an evidence-based
Soininen, H., Tuomilehto, mobile application to predict the risk of
J., & Kivipelto, M. dementia.
123. Solanas, A., Martinez- 2013 m-Carer: Privacy-aware monitoring for
Balleste, A., Perez- people with mild cognitive impairment and
Martinez, P. A., de la Pena, dementia.
A. F., & Ramos, J.
124. Sposaro, F., Danielson, J., 2010 iWander: An Android application for
& Tyson, G. dementia patients.
125. Varshney, S., Varshney, J., 2016 AlzhaTV: A smart phone app for
Varshney, U., & Varshney, managing depression, anxiety, and
S. agitation in nursing home dementia
patients.
126. Zachos, K., Maiden, N., 2013 A software app to support creativity in
Pitts, K., Jones, S., Turner, dementia care.
I., Rose, M., Pudney, K., &
MacManus, J.
127. Zorluoglu, G., Kamasak, M. 2015 A mobile application for cognitive
E., Tavacioglu, L., & screening of dementia.
Ozanar, P. O.
User Experience
128. Anderson, K., Burford, O., 2016 Mobile health apps to facilitate self-care: A
& Emmerton, L. qualitative study of user experiences.
220
129. Bateman, D. R., Srinivas, 2017 Categorizing health outcomes and efficacy
B., Emmett, T. W., of mHealth apps for persons with cognitive
Schleyer, T. K., Holden, R. impairment: A systematic review.
J., Hendrie, H. C., &
Callahan, C. M.
130. Colantonio, Cohen, & Pon 2001 Assessing support needs of caregivers of
persons with dementia: Who wants what?
131. Czarnuch, S., & Mihailidis, 2011 The design of intelligent in-home assistive
A. technologies: Assessing the needs of older
adults with dementia and their caregivers.
132. Davis, S. W., & Oakley- 2017 Achieving value in mobile health
Girvan, I. applications for cancer survivors.
221
140. Liu, L., Miguel Cruz, A., 2015 What factors determine therapists’
Rios Rincon, A., Buttar, V., acceptance of new technologies for
Ranson, Q., & Goertzen, D. rehabilitation–a study using the Unified
Theory of Acceptance and Use of
Technology (UTAUT).
141. Mahoney, D. F. 2010 An evidence-based adoption of technology
model for remote monitoring of elders’
daily activities.
142. Park, J., Han, S. H., Kim, H. 2013 Modeling user experience: A case study on
K., Oh, S., & Moon, H. a mobile device.
143. Rathnayake, S., Moyle, W., 2018 mHealth applications as an educational and
Jones, C., & Calleja, P. supportive resource for family carers of
people with dementia: An integrative
review.
144. Rialle, V., Ollivet, C., 2008 What do family caregivers of Alzheimer’s
Guigui, C., & Hervé, C. disease patients desire in smart home
technologies?
145. Rosenberg, L., Kottorp, A., 2012 Readiness for technology use with people
& Nygård, L. with dementia: The perspectives of
significant others.
146. Ruggiano, N., Brown, E. L., 2019 The potential of information technology to
Shaw, S., Geldmacher, D., navigate caregiving systems: Perspectives
Clarke, P., Hristidis, V., & from dementia caregivers.
Bertram, J.
147. Tamim, S. R., & Grant, M. 2016 Exploring how health professionals create
M. eHealth and mHealth education
interventions.
222
APPENDIX F: RECRUITMENT DOCUMENTS
Recruitment Email
Dear [Insert name/organization],
My name is Angel Wang and I am a Master of Nursing student at Ryerson University in the
thesis stream. As part of the program requirements, I am conducting a research study about
family caregivers’ experiences of using mobile applications (apps on their cell phones) in their
caregiving role of a relative living with dementia.
Would you consider assisting me to recruit participants for this study? Note: the study has
received approval from the Research Ethics Board at Ryerson University and is being conducted
under the supervision of Dr. Kristine Newman and Dr. Lori Schindel Martin.
The study will involve interviewing five to ten family caregivers who care for a relative living
with dementia and use mobile apps in caregiving activities. My review of the literature showed
that mobile technologies, particularly mobile apps, are a cost-effective and accessible method to
assist family caregivers and improve their well-being. The findings of this study will offer an
understanding of family caregivers’ experiences of using mobile apps to support caregiving for a
loved one living with dementia. This in turn can inform future mobile app developments to
address caregiver needs of family caregivers and promote more effective caregiving and
improved quality of life for care recipients and their family caregivers.
Attached in this email are the email message and recruitment poster that you can forward to
members of your organization or who you think would be interested in participating. Should you
encounter any inquiries about the study from interested participants, please direct these
individuals to contact me directly via email at [email protected]. Feel free to contact me if
you have any further questions about the study.
Thank you very in much in advance for your time and assistance. It is much appreciated.
Kind regards,
Angel Wang, RN, BScN, MN Student
Daphne Cockwell School of Nursing, Ryerson University
Principal Investigator
223
Email Recruitment Message
Participation is voluntary and is open to anyone who meets the following criteria:
▪ 18 to 55 years-old;
▪ Able to understand and provide consent in English;
▪ Self-identifies as an adult child family caregiver (i.e. child or grandchild) of a relative
living with dementia;
▪ Own a mobile device (e.g. smartphone, tablet); and
▪ Have prior experience using mobile apps to assist in caregiving for a relative living
with dementia within the last 12 months (e.g. medication reminders, “brain-training”
games, calendars, social network platform).
THANK YOU
To thank you for your participation in the study, you will be offered a $20 gift card.
If you would like more information or are interested in participating, please contact me at
[email protected] and I will be happy to answer any questions you have about the study.
This study has been approved by the Ryerson University Research Ethics Board.
Sincerely,
Angel Wang, RN, BScN, MN Student
Ryerson University
Principal Investigator
224
Recruitment Poster
225
Recruitment Posts on Social Media
Tweet on Twitter
Hi [Insert name/organization], my name is Angel Wang & I'm a graduate student at Ryerson
University recruiting participants for my research about mobile apps & #dementia. Would you
share/re-tweet the study’s poster to your members or whoever you think would be interested?
Thank you in advance!
Facebook message
Hi [Insert name/organization],
My name is Angel Wang and I am a Master of Nursing student at Ryerson University in the
thesis stream. As part of the program requirements, I am conducting a research study about
family caregivers’ experiences of using mobile applications (apps on their cell phones) in their
caregiving role of a relative living with dementia.
Would you consider assisting me to recruit participants for this study? Note: the study has
received approval from the Research Ethics Board at Ryerson University and is being conducted
under the supervision of Dr. Kristine Newman and Dr. Lori Schindel Martin.
The study will involve interviewing five to ten family caregivers who care for a relative living
with dementia and use mobile apps in caregiving activities. My review of the literature showed
that mobile technologies, particularly mobile apps, are a cost-effective and accessible method to
assist family caregivers and improve their well-being. The findings of this study will offer an
understanding of family caregivers’ experiences of using mobile apps to support caregiving for a
loved one living with dementia. This in turn can inform future mobile app developments to
address caregiver needs of family caregivers and promote more effective caregiving and
improved quality of life for care recipients and their family caregivers.
Attached in this message is the recruitment poster that you can post on your Facebook
page/group to share to members of your organization. Should you encounter any inquiries about
the study from interested participants, please direct these individuals to contact me directly via
email at [email protected]. Feel free to contact me if you have any further questions about the
study.
Thank you very much in advance for your time and assistance. It is much appreciated.
Kind regards,
Angel Wang, RN, MN Student
Ryerson University
Principal Investigator
226
Facebook posts in Facebook dementia interest groups
Participation is voluntary and is open to anyone who meet the following criteria:
▪ 18 to 55 years-old;
▪ Able to understand and provide consent in English;
▪ Self-identifies as an adult child family caregiver (i.e. child or grandchild) of a relative
living with dementia;
▪ Own a mobile device (e.g. smartphone, tablet); and
▪ Have prior experience using mobile apps to assist in caregiving for a relative living
with dementia within the last 12 months (e.g. medication reminders, “brain-training”
games, calendars, social network platform).
THANK YOU
To thank you for your participation in the study, you will be offered a $20 gift card.
If you would like more information or are interested in participating, please contact me at
[email protected] and I will be happy to answer any questions you have about the study.
This study has been approved by the Ryerson University Research Ethics Board.
Sincerely,
Angel Wang, RN, BScN, MN Student
Ryerson University
Principal Investigator
227
APPENDIX G
Telephone Screening Script
Hello, my name is Angel Wang, and I am a Ryerson University graduate student. I am
conducting this study as part of my Master of Nursing degree requirements. Thank you for your
interest in participating in my study. Is this a good time for us to speak about the possibility of
you participating in this study? (If yes, continue to 1)
1. Great. If you change your mind and want to stop the conversation or reschedule, that is
not a problem.
Are you in a location that affords you some privacy?
If not: Would you like to call me back when you are? We can arrange another
time to speak together.
If yes: I’d like to take a little time to briefly explain the study to you, confirm that
you are an eligible participant, and explain the next steps if you are eligible. Is
that okay for you? (If yes, continue to 2)
2. The purpose of this study is to explore the user experiences of family caregivers of a
relative living with dementia who uses mobile applications (apps) in their caregiving role.
The findings of this study can inform future mobile app developments to address
caregiver needs of family caregivers and promote more effective caregiving and
improved quality of life for care recipients and their family caregivers. I hope to
interview 5 to 10 individuals. Participation in this study involves three components: (1)
completing a short demographic form; (2) participating in two in-person interviews; and
(3) taking photographs with your mobile device.
I will now confirm your eligibility for the study. To do this, I will have to ask you a
couple of questions:
▪ Are you between the ages of 18 to 55 years-old?
▪ Do you self-identify as an adult child family caregiver (i.e. child or grandchild) of
a relative living with dementia?
▪ Do you own a mobile device, such as a smartphone or tablet?
▪ Do you have any prior experience using mobile apps to assist in caregiving for a
relative living with dementia within the last 12 months (e.g. medication
reminders, “brain-training” games, calendars, social network platform)?
If the criteria are met: You meet all the eligibility criteria. Are you still interested in
participating in this study?
If yes, continue to 3.
If not: Thank you so much for expressing an interested in participating and taking
the time to speak with me. All the best. Good-bye.
If the criteria are not met: Unfortunately, you are not able to participate in this study
because you did meet [specific criteria]. Thank you so much for expressing an interested
in participating and taking the time to speak with me. All the best. Good-bye.
3. Because you are interested in participating in this study, would you like to schedule a
time for the first interview?
228
If yes, schedule a time and location for the first interview.
4. Before the interview, I will send you the Consent Agreement via email which you can
review. Is that okay? What is an email address that I can reach you at? After you have
read the Consent Agreement, feel free to email me should you have any additional
questions. I will have two copies of the Consent Agreement ready at the beginning of the
interview which you can sign. One copy will be given to you for your own records. I
want to remind you that you can stop participating in the study anytime without any
consequences. Do you have any other questions? Thank you again for taking the time to
speak with me today. I will email the Consent Agreement to you now. We will be in
touch! Good-bye.
229
APPENDIX H
Ryerson University
Consent Agreement
You are being invited to participate in a research study that is being conducted as part of the
requirements for the completion of a Master in Nursing degree at Daphne Cockwell School of
Nursing, Ryerson University.
Please read this consent form so that you understand what your participation will involve.
Before you consent to participate, please ask any questions to be sure you understand what your
participation will involve.
TITLE: Using mobile apps in caregiving: The user experiences of family caregivers of persons
living with dementia
INVESTIGATORS:
Principal Investigator: Angel Wang, RN, MN Student, Daphne Cockwell School of Nursing,
Faculty of Community Services, Ryerson University, Toronto, Ontario.
Thesis Supervisors:
Dr. Kristine Newman, RN, CRN(C), PhD, Thesis Co-Supervisor, Daphne Cockwell School of
Nursing, Faculty of Community Services, Ryerson University, Toronto, Ontario.
Dr. Lori Schindel Martin, RN, PhD, Thesis Co-Supervisor, Daphne Cockwell School of Nursing,
Faculty of Community Services, Ryerson University, Toronto, Ontario.
If you have any questions or concerns about the research, please feel free to contact Angel Wang
at [email protected]
230
b) Able to understand and provide consent in English;
c) Self-identifies as an adult child family caregiver (i.e. child or grandchild) of a relative
living with dementia;
d) Own a mobile device (e.g. smartphone, tablet); and
e) Have prior experience using mobile apps to assist in caregiving for a relative living with
dementia within the last 12 months.
231
3. Photography Activity: Take at least 5 photographs using your mobile device of images
that reflect your thoughts and feelings with respect to using health-related mobile apps to
support caregiving activities. The photographs can be images of inanimate objects,
nature, animals, foods, etc. However, photographs are to exclude people, including you,
and organizations. These photographs are to be sent to the principal investigator through
email at least 3 days before the scheduled follow-up interview. The content of these
photographs, and your experience of taking the photographs, will then be discussed
during the second interview. They will also be used in conjunction with all of your
interview data to help depict your experiences in both written language and visual
representation.
4. Consent: Be asked to provide consent to the following: (a) both interviews; (b) to being
audio-recorded during the two interviews; (c) to use the photographs taken by you in
dissemination activities (e.g. final thesis report, publications, conference presentations).
You will not receive a copy of the research results; however, dissemination strategies will be
implemented upon the completion of the study to ensure the general public, including you, will
have access to the published study data (e.g. from websites of organizations, conferences, journal
articles).
POTENTIAL BENEFITS: It cannot be guaranteed that your participation in the study will
yield any direct benefits for you. Through participation, you may develop a greater
understanding of your own experiences of using mobile applications to support caregiving
activities. Further, this research can add value to the broader dialogue on family caregiving for a
relative living with dementia and the potential for mobile applications to support caregiving.
Findings from this research could impact public policy and draw attention to the conditions of
family caregivers who care for persons living with dementia and may need technological
strategies to support them in providing care. As Canada’s aging population grows and continues
to have complex healthcare needs, there is much potential that this research can help identify
technological solutions that are inclusive and accessible and ultimately, improve outcomes for
care recipients and their family caregivers.
232
CONFIDENTIALITY: We will respect your privacy. All information obtained during this
study is strictly confidential and no information that reveals your identity will be released or
published without consent unless required by law. This legal obligation includes circumstances
such as suspected child or elder abuse, or expression of suicidal ideation where researchers are
obliged to report to the appropriate authorities.
Interviews will first be audio recorded before being transcribed. The written interview transcript
will be the focus of analysis. Once the audio file of your interview has been transferred from the
recording device to a password-protected computer, your interview recording will be removed
from the recording device. The audio recording device will be kept in a locked container. You
will be identified only by a study number. All research data will be stored in a secure, locked
location. Only members of the research team will have access to the data. This consent form and
the identifying data that it contains as well as any other identifying information will be stored in
a secure, locked cabinet that is separate from the study data. Following completion of the
research study the data will be kept as long as required (7 years) then destroyed as required by
Ryerson University’s policy.
All data, including visual and interview information, that will be provided by you will be used to
fulfill the purpose of this study, as well as for related presentations and potential publications.
Your name or any other identifying information will not be included on the interview transcripts.
Some of your comments from the interviews may be used as word-for-word quotations to present
the results of the study, but you will not be directly identified as the author of those quotations.
The photographs that you provide will be used in their original form for the study and in the final
research report, but your identity as the photographer will remain confidential. If you express
preference not to have your photographs used in the final research report (or select only a few
out of the set), this will be respected.
You may withdraw your permission to use your personal information at any time by letting the
study team know, and the study team will then no longer collect or share your personal
information in connection with the study. However, if you withdraw your permission, you also
withdraw from the study. If you withdraw from the study, you have the option to withdraw all
study data by informing the contact person listed prior to data analysis, otherwise the study team
will continue to use your study data that was recorded before you withdrew.
When the results of the study are published or presented, your name will not be used and no
information that could identify you will be released. No identifying information will be shared
when the data is disseminated.
While every effort will be made to protect the privacy of your information, absolute
confidentiality cannot be guaranteed. This does not limit the duty of the researchers and others to
protect your privacy.
233
INCENTIVES FOR PARTICIPATION: To thank you for your participation in the study, you
will receive a $10 gift card at the end of each interview. If at any time during the interview
process you decide to withdraw from the study, you will still receive this incentive for your time.
QUESTIONS ABOUT THE STUDY: If you have any questions about the research now, please
ask. If you have questions later about the research, you may contact:
Angel Wang, RN, MN Student
[email protected]
or
This study has been reviewed by the Ryerson University Research Ethics Board. If you have
questions regarding your rights as a participant in this study, please contact:
Research Ethics Board
c/o Office of the Vice President, Research and Innovation
Ryerson University
350 Victoria Street
Toronto, ON M5B 2K3
416-979-5042
[email protected]
234
Using mobile apps in caregiving: The user experiences of family caregivers of persons
living with dementia
CONFIRMATION OF AGREEMENT:
Your signature below indicates that you have read the information in this agreement and have
had a chance to ask any questions you have about the study. Your signature also indicates that
you agree to participate in the study and have been told that you can change your mind and
withdraw your consent to participate at any time. You have been given a copy of this agreement.
You have been told that by signing this consent agreement you are not giving up any of your
legal rights.
____________________________________
Name of Participant (please print)
_____________________________________ __________________
Signature of Participant Date
AUDIO-RECORDING:
I agree to be audio-recorded for the purposes of this study. I understand how these recordings
will be stored and destroyed.
_____________________________________ __________________
Signature of Participant Date
235
Using mobile apps in caregiving: The user experiences of family caregivers of persons
living with dementia
PHOTOGRAPHY ACTIVITY:
I understand and agree that the photographs I take as part of the visual data collection step of the
study will be used for presentation and dissemination purposes, and that my authorship will not
be associated with these images. I understand that the photos I will be taking as part of this study
will not depict people (with defining features) or organizations. I understand how these
photographs will be stored and used.
_____________________________________ __________________
Signature of Participant Date
236
APPENDIX I
1. Age:
18 to 21 years-old 22 to 25 years-old
26 to 29 years-old 30 to 35 years-old
36 to 39 years old 40 to 45 years old
46 to 49 years old 50 to 55 years old
2. Gender:
Female Male
Another option
______________________
Other: _______________________
Other: _______________________
237
APPENDIX J
First Interview – Interview Guide
Dear Participant,
My name is Angel Wang and I am a Master of Nursing student at Ryerson University. I
am doing this study as part of the requirement to complete my program with the university.
Thank you for agreeing to participate in this research study. I appreciate you taking the time to
share your experiences with me.
The inspiration for this study came out of my own experience of being a family caregiver.
After reviewing the literature, I noticed that there are limited studies incorporating the
perspectives of family caregivers when developing and evaluating technological innovations to
support care recipients and their family caregivers. In particular, there is currently no research on
the perspectives and user experiences of family caregivers of individuals living with dementia on
using mobile apps to assist in caregiving activities. As a result, I decided to develop a research
study that will use the qualitative description approach to address the main research question:
What are the user experiences of family caregivers using mobile apps to assist in caregiving for
their loved ones living with dementia in the community?
It is anticipated that the results of the study will help better understand the perspectives
and user experiences of family caregivers of individuals living with dementia on using mHealth
apps to assist in caregiving activities. As such, the results may be used to inform future
development and evaluations of mobile apps for family caregivers in the dementia context.
You are free to state at any time if you feel uncomfortable with a question or want to stop
the interview. I will be taking brief notes during the interview. The interview should take
approximately 45 to 60 minutes. The interview will be audio-recorded, do you consent to be
audio-recorded? If yes: Do you have any questions before we begin with the interview?
Open-ended questions:
1. Tell me about the caregiving activities that you perform?
2. What mobile app(s) do you currently use or have used to help you with those caregiving
activities?
▪ Do you still use that/those app(s)? How long have you used (did you use) this app
for? How often do/did you use it?
▪ If discontinued: Why did you stop using the app(s)?
3. How do/did the mobile app(s) support you in caregiving for a loved one living with
dementia?
▪ How do you use it to do so?
4. What prompted you to use a health-related mobile app?
▪ How did you ‘discover’ the app(s)?
o Prompts: friend and family recommendation, healthcare professional
recommendation, self-search
5. What do/did you like about this app?
▪ Does/did the app fulfil your needs? Why or why not?
▪ Is/was your app worth recommending to others?
6. How easy is/was using your app?
238
▪ What makes/made the app information clear and understandable?
▪ Are/were there any parts of the app you don’t use? Why?
▪ What app features do/did you find unintuitive?
▪ Who do/would/did you turn to for help using the app (prompts: family, friends, or
online forum)?
7. What are some concerns you have related to using a health-related mobile app?
▪ Prompt: invasion of privacy, too complicated, can’t find a relevant one?
▪ If you could redesign the app, what would you do?
8. What types of health-related mobile apps do you feel were/can be most helpful in your
caregiving experience?
Probing questions:
▪ Could you please expand on/explain/tell me more about…?
▪ Can you elaborate on….? Can you tell me more about…?
▪ Can you explain what you meant when you said, “…”?
▪ I am not quite sure I understood… Could you tell more about that some more?
▪ I am not certain what you mean by… Could you give me some examples?
▪ This is what I thought I heard… Did I understand you correctly?
▪ So what you are saying is….?
▪ What are some of your reasons for thinking/feeling this way?
▪ Could you tell me more about your thinking on that?
▪ Can you give me an example?
▪ Would you explain that further?
▪ You mentioned… Could you tell me more about that?
▪ It sounds like you are saying, “…” Is that a correct?
Closing remarks:
▪ Before we close, is there anything you would like to add that was not discussed in the
interview?
▪ Do you have any questions for me before we finish?
▪ Is it okay if we discuss the next steps of the study?
o If yes: I will now explain the photography portion of the study.
o Refer to Appendix K or the Photography Activity Handout.
▪ Is it okay if we schedule the next interview?
o If yes: Schedule time, date, and location of the next interview.
As a token of my gratitude for your participation in this study, please accept this $10 gift card.
Thank you for your time!
239
APPENDIX K
Photography Activity – Information Handout
Dear Participant,
During our first interview, I had an opportunity to engage in a conversation with you to
gain a deeper understanding of your experiences of using mobile apps to assist in caregiving for
a loved one living with dementia. The information you shared with me in the first interview will
make up for one component of the data used for the study.
The other component of the data that will be used for the study is photographs taken by
participants. I am offering you an opportunity to engage in an artistic and creative way of
expressing your experiences of using mobile apps to assist in caregiving activities through the
medium of photography. You can use your phone to take photographs of objects, such as stills of
nature, inanimate objects (i.e. clothing), pets/animals, or foods meant to be representative of your
experiences. You can also take pictures of people, but no defining features to respect their
privacy such as your hand holding another person’s hand. These photographs should reflect the
feelings, values and ideas of your experiences of using mobile apps to assist in caregiving.
You can take as many photographs as you wish, but please only send the top five
photographs that you feel reflect your experiences, feelings, values and ideas the best to my
email ([email protected]) at least 3 days before our second, follow-up interview. The five
photographs you send will be used along with the verbal accounts you have shared to enhance
and provide further insight into the meaning of your experiences. The photographs will be used
in their original form as part of the final research report, and may also be used for publication or
presentation purposes. You have the decision on whether to give me permission to use these
photographs for the purposes of the report, publication and/or other dissemination activities. If
you wish for the photographs to not be included in the final research report, publications and/or
other dissemination, your decision will be respected, and your photographs will not be used.
Please be advised that the content of photographs should not depict anything illegal or be
deemed sensitive in nature. Please refrain from including an individual, especially yourself, or
any organizations in any of the taken photographs. Any photographs that depict people or is
violating an individual or organization’s privacy will not be included in the study to ensure
confidentiality and anonymity.
Approximately two weeks after the initial interview, we will schedule a brief follow-up
interview where we will explore the content and the meaning of the photographs. If you have any
questions about this photography activity, please do not hesitate to ask me at any time during the
study.
Thank you,
Angel Wang, RN, BScN, MN Student
Email: [email protected]
240
APPENDIX L
Second Interview: Interview Guide
Dear Participant,
Thank you for meeting with me for our second, follow-up interview. I really appreciate
your time. During our first interview, we discussed your experiences of using mobile apps to
assist in caregiving activities. Today, I would like to focus on two things. First, I would like both
of us to reflect on our initial discussion and to address any questions/clarifications we might have
about the dialogue we shared. Second, we will review, reflect, and discuss the photographs that
you have taken as a metaphorical representation of your experiences of using mobile apps to
assist in caregiving activities.
I would like to remind you that the consent form you previously signed indicated that you
can the interview at any point, and have the right not to answer any questions that might make
you feel uncomfortable. I will be taking brief notes during the interview. The interview should
take approximately 30 to 45 minutes. The interview will be audio-recorded, do you consent to be
audio-recorded? If yes: Do you have any questions before we begin with the interview?
Open-ended questions:
1. Now that you have had some time to reflect on our initial discussion, are there any other
comments that you would like to share with me today that you did not have an
opportunity to bring up in our last meeting?
2. Tell me about your experience in taking photographs about your experiences of using
mobile apps to assist in caregiving activities.
For each of the five pictures:
3. Can you tell me about this photograph? What is the meaning behind this photograph for
you?
▪ What does this represent? What is the message you are trying to convey through
this photograph?
▪ Why did you take this photograph?
4. What does this photograph mean to your caregiving experiences using mobile apps?
5. Can you tell me about what is in this photograph?
6. Where was the photograph taken?
7. Is there anything that you would want to add or change about this photograph so that it
better represents your experiences of using mobile apps to assist in caregiving activities?
8. Out of the photographs that you have taken, which one, in your opinion, most closely
reflects your experience of using mobile apps in caregiving activities? Please explain.
About the photography activity: Let’s talk a little bit more about the photography activity
itself.
241
9. What were some of your thoughts and feelings as you engaged in this photography
activity?
10. How did you feel completing this activity?
11. Did you encounter any challenges with this activity? If yes, please elaborate.
12. Did you gain any benefits from this activity? If yes, please elaborate.
Probing questions:
▪ Could you please expand on/explain/tell me more about…?
▪ Can you elaborate on….? Can you tell me more about…?
▪ Can you explain what you meant when you said, “…”?
▪ I am not quite sure I understood… Could you tell more about that some more?
▪ I am not certain what you mean by… Could you give me some examples?
▪ This is what I thought I heard… Did I understand you correctly?
▪ So what you are saying is….?
▪ What are some of your reasons for thinking/feeling this way?
▪ Could you tell me more about your thinking on that?
▪ Can you give me an example?
▪ Would you explain that further?
▪ You mentioned… Could you tell me more about that?
▪ It sounds like you are saying, “…” Is that a correct?
Closing remarks:
As our time together is coming to a close, is there anything else that you would like to share with
me about your experiences of using mobile apps to support your caregiving activities? Do you
have any questions for me at time?
If you do have any additional questions after today, feel free to email me at [email protected].
As a token of my gratitude for your participation in this study, please accept this $10 gift card.
Thank you for your time and participation!
242
APPENDIX M
List of Mobile Apps Used by Participants
Name of App Description of App
Social Media/Communication Apps
FacebookTM A social media app that allows registered users to create profiles, upload
photos and videos, and send messages and connect with friends, family and
colleagues (Facebook, 2019a).
Facebook A messaging app connected to Facebook that enables chat, voice and video
MessengerTM communications between Facebook users (Facebook, 2019b).
FaceTimeTM An Apple app that allows users to engage in video and audio calls (Apple,
2019a).
InstagramTM A photo-sharing app and social network platform that allows users to edit
and upload photos and short videos (Google Play, 2019a).
TwitterTM A social networking microblogging platform that allows registered users to
create short posts, upload photos and videos, and send messages to other
users (Google Play, 2019b).
WeChatTM A Chinese multi-purpose messaging, social media and mobile payment app
(Google Play, 2019c).
WhatsAppTM An instant messaging app that allows users to exchange text, image, video
and audio messages as well as make video and audio calls (WhatsApp,
2019).
Productivity/Organization Apps
Reminder An app that allows users to set notifications for themselves which have
multiple versions on various operating systems, such as Google’s Android
and Apple’s iOS.
Google A time-management and scheduling calendar service developed by Google
CalendarTM that allows users to create and edit events as well as to enable reminders for
events (Google Play, 2019d).
Notes A note-taking app developed by Apple that allows users to create notes,
scan and sign documents, create checklists, add attachments, insert photos
and videos, as well as sketch (Apple, 2019b). Note: there are similar apps
for Android users.
Food-Related Apps
243
DoorDashTM An app that allows users to order food delivery from local restaurants on
demand across cities in the United States of America and Canada (Google
Play, 2019e).
InstaCartTM An app that offers same-day grocery delivery and pick up service in the
United States of America and Canada (Google Play, 2019f).
SkipTheDishesTM An app that allows users to order food delivery from local restaurants on
demand (Google Play, 2019g).
Uber EatsTM An app that allows users to order food delivery from local restaurants on
demand (Google Play, 2019h).
Transportation Apps
UberTM A ride-sharing app that allows users to request a ride from Uber drivers to
go to their chosen location (Google Play, 2019i).
LyftTM A ride-sharing app that allows users to request a ride from Lyft drivers to
go to their chosen location (Google Play, 2019j).
Entertainment Apps
Colouring apps A category of apps that allow users to paint mandalas, patterns, animals,
florals, and thematic images.
Gardening apps A category of apps that allow users to garden virtually, such as plant seeds
and care for the plants.
NetflixTM A subscription-based streaming service app that offers users online
streaming of a library of films and television programs (Google Play,
2019k).
Puzzle apps A category of apps that enables users to complete various puzzles.
YouTubeTM A video-sharing app that allows users to upload, view, rate and share
videos (Google Play, 2019l).
Miscellaneous
Banking apps A category of apps that allow users to complete banking activities and
transactions, such as checking their balances, depositing a cheque, and
paying bills, with their chosen bank.
Camera/Photo A category of apps that enables users to capture and store pictures and
album apps videos.
KijijiTM A classified advertising service that allows users to post and search local
advertisements (Google Play, 2019m).
244
REFERENCES
Aasbø, G., Solbrække, K. N., Kristvik, E., & Werner, A. (2016). Between disruption and
continuity: Challenges in maintaining the ‘biographical we’ when caring for a partner
with a severe, chronic illness. Sociology of Health & Illness, 38(5), 782-796.
Abu-Dalbouh, H., Al-Habeeb, A., Al-Kholifi, A., Al-Motiry, I., & Al-Buhairy, M. (2015). A
mobile reminder system for elderly and Alzheimer's patients. International Journal of
Acharya, M. H., Gokani, T. B., Chauhan, K. N., & Pandya, B. P. (2016, August 26-27). Android
10.1109/INVENTIVE.2016.7823231
Alzheimer’s Association. (2013). Alzheimer’s caregiving – there’s an app for that! Retrieved
from http://www.alzheimersblog.org/2013/08/19/alzheimers-caregiving-theres-app-that/
Alzheimer’s Disease International (ADI). (2016). World Alzheimer Report 2016: Improving
healthcare for people living with dementia. London, UK: Alzheimer’s Disease
International
Alzheimer’s Disease International (ADI). (2010). World Alzheimer Report 2010: The Global
Alzheimer Society of Canada. (2010). Rising Tide: The impact of dementia on Canadian
Alzheimer Society of Canada. (2017a, November 8). A new way of looking at the impact of
way-of-looking-at-dementia
245
Alzheimer Society of Canada. (2017b, January 18). Dementia numbers in Canada. Retrieved
from http://www.alzheimer.ca/en/About-dementia/What-is-dementia/Dementia-numbers
Alzheimer Society of Canada. (2017c, April 7). What is dementia? Retrieved from
http://www.alzheimer.ca/en/About-dementia/What-is-dementia
Alzheimer Society of Canada (2017d, June 22). Your guide to Canada’s national dementia
dementia-strategy-guide#what-is-a-national-dementia-strategy
Alzheimer Society of Canada. (2019, March 20). Alzheimer Society welcomes $50 million
https://www.newswire.ca/news-releases/alzheimer-society-welcomes-50-million-
funding-for-national-dementia-strategy-802554998.html
Anderson, K., Burford, O., & Emmerton, L. (2016). Mobile health apps to facilitate self-care: A
10.1371/journal.pone.0156164
Andrén, S., & Elmståhl, S. (2005). Family caregivers’ subjective experiences of satisfaction in
Andrén, S., & Elmståhl, S. (2008). The relationship between caregiver burden, caregivers’
perceived health and their sense of coherence in caring for elders with dementia. Journal
Ansello, E. F., & Rosenthal, C. J. (2007). Hidden costs and invisible contributions in family
246
caregiving: An introduction. Canadian Journal on Aging, 26(1), 1-6.
Apple. (2019a, February 19). Use FaceTime with your iPhone, iPad, or iPod touch. Retrieved
from https://support.apple.com/en-ca/HT204380
Apple. (2019b, April 22). Use Notes on your iPhone, iPad, and iPod touch. Retrieved from
https://support.apple.com/en-ca/HT205773
Appleton, J. V., & King, L. (2002). Journeying from the philosophical contemplation of
Armstrong, P., & Kits, O. (2001). One hundred years of caregiving. Retrieved from
http://www.womenandhealthcarereform.ca/publications/care-giving-100yrs.pdf
Arntzen, C., Holthe, T., & Jentoft, R. (2016). Tracing the successful incorporation of assistive
technology into everyday life for younger people with dementia and family
Asghar, I., Cang, S., & Yu, H. (2018). Usability evaluation of assistive technologies through
Ashwill, R., Mulhall, S., Johnson, D. K., & Galvin, J. E. (2015). Caregiving experience for
people with Lewy Body Dementia: Spouse versus adult child. Alzheimer's & Dementia:
Asiedu, G. B., Carroll, K., Griffin, J. M., Hurt, R. T., & Mundi, M. (2018). Home enteral
247
nutrition: Use of photo‐elicitation to capture patient and caregiver experiences. Health
Assistive Technology Industry Association (ATIA). (n.d.). What is AT? Retrieved from
https://www.atia.org/at-resources/what-is-at/
Atchley, R.C. (2000). Social forces and aging: An introduction to social gerontology (9th
Aubeeluck, A., & Buchanan, H. (2006). Capturing the Huntington's disease spousal carer
Bainbridge, H. T., Cregan, C., & Kulik, C. T. (2006). The effect of multiple roles on caregiver
Balmer, C., Griffiths, F., & Dunn, J. (2015). A review of the issues and challenges involved in
Bargas-Avila, J. A., & Hornbæk, K. (2011, May 7-11). Old wine in new bottles or novel
10.1145/1978942.1979336
Barnett, A. E. (2015). Adult child caregiver health trajectories and the impact of multiple roles
Bastawrous, M., Gignac, M. A., Kapral, M. K., & Cameron, J. I. (2015). Factors that contribute
to adult children caregivers' well‐being: A scoping review. Health & Social Care in the
248
Bates, E. A., McCann, J. J., Kaye, L. K., & Taylor, J. C. (2017). “Beyond words”: A researcher’s
Bateman, D. R., Srinivas, B., Emmett, T. W., Schleyer, T. K., Holden, R. J., Hendrie, H. C., &
Callahan, C. M. (2017). Categorizing health outcomes and efficacy of mHealth apps for
www.behindthename.com/name/cassandra
Belk, R. W. (1988). Possessions and the extended self. Journal of Consumer Research, 15(2),
139-168.
Benefield, L. E., & Beck, C. (2007). Reducing the distance in distance-caregiving by technology
Bengtsson, M. (2016). How to plan and perform a qualitative study using content
Bhattacharyya, S., Benbow, S. M., & Collins, E. (2017). Mobile app: Living and dying well with
Bhattarai, P., Newton-John, T. R. O., & Phillips, J. L. (2017). Quality and usability of arthritic
249
pain self-management apps for older adults: A systematic review. Pain Medicine, 19(3),
471-484.
Bhavnani, S. P., Narula, J., & Sengupta, P. P. (2016). Mobile technology and the digitization of
Bier, N., Bottari, C., Hudon, C., Joubert, S., Paquette, G., & Macoir, J. (2013). The impact of
Bier, N., Paquette, G., & Macoir, J. (2018). Smartphone for smart living: Using new
Billings, D. M. (2015). There’s an “app” for that: Tips for preparing nurses for roles in mobile
BinDhim, N. F., Shaman, A. M., Trevena, L., Basyouni, M. H., Pont, L. G., & Alhawassi, T. M.
and feasibility. Journal of the American Medical Informatics Association, 22, 29-34. doi:
10.1136/amiajnl-2014-002840
Birkhoff, S. D., & Smeltzer, S. C. (2017). Perceptions of smartphone user‐centered mobile health
tracking apps across various chronic illness populations: An integrative review. Journal
Black, B. S., Johnston, D., Rabins, P. V., Morrison, A., Lyketsos, C., & Samus, Q. M. (2013).
caregivers: Findings from the maximizing independence at home study. Journal of the
250
Boots, L. M., de Vugt, M. E., van Knippenberg, R. J., Kempen, G. I. J. M., & Verhey, F. R. J.
doi:10.1002/gps.4016
Bowers, B. J. (1987). Intergenerational caregiving: Adult caregivers and their aging parents.
Boydell, K. M., Gladstone, B. M., Volpe, T., Allemang, B., & Stasiulis, E. (2012). The
Bradshaw, C., Atkinson, S., & Doody, O. (2017). Employing a qualitative description approach
10.1177/2333393617742282
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in
Psychology, 3, 77–101.
British Columbia Law Institute (BCLI). (n.d.). Chapter 2 – Family caregiving in BC. Retrieved
from https://www.bcli.org/sites/default/files/Family%20Caregiving%
20-%20Chapter%202.pdf
Brodaty, H., & Donkin, M. (2009). Family caregivers of people with dementia. Dialogues in
Brodaty, H., Green, A., & Koschera, A. (2003). Meta-analysis of psychosocial interventions for
caregivers of people with dementia. Journal of American Geriatrics Society, 51, 657-664.
Brodaty, H., Thomson, C., Thompson, C., & Fine, M. (2005). Why caregivers of people with
251
dementia and memory loss don’t use services. International Journal of Geriatric
Brown, E. L., Ruggiano, N., Roberts, L., Hristidis, V., Whiteman, K. L., Castro, J., & Page, T. F.
(2016). CareHeroes web and Android™ apps for dementia caregivers: A feasibility
Brown, E. L., Ruggiano, N., Li, J., Clarke, P. J., Kay, E. S., & Hristidis, V. (2019). Smartphone-
based health technologies for dementia care: Opportunities, challenges, and current
Buettner, L. L., Yu, F., & Burgener, S. C. (2010). Evidence supporting technology-based
Burns, K., Jayasinha, R., & Brodaty, H. (2017). Evaluation of an electronic app developed to
Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4(2),
167-182.
Canada Health Infoway. (2017). One third of Canadians use mobile apps to track health: Study.
eLetter&utm_campaign=c0c5fc161-Longwoods+eLetter+September+19%2C+2017&
utm_medium=email&utm_term=0_0f88455429-c0c5fc1616-48440873
Canadian Caregiver Coalition (CCC). (2014). A Canadian caregiver strategy: Are we making
Canadian-Family-Caregiver-2013_WEB-PAGES-2.pdf
252
Canadian Gerontological Nursing Association (CGNA). (2010). Gerontological nursing
https://cgna.net/uploads/CGNAStandardsOfPractice_English.pdf
Canadian Institute for Health Institute (CIHI) (2018, June 26). Almost half of unpaid caregivers
of seniors with dementia experience distress: New report paints national picture of
dementia and its impact on health systems and Canadians. Retrieved from
https://www.cihi.ca/en/almost-half-of-unpaid-caregivers-of-seniors-with-dementia-
experience-distress
Capistrant, B. D. (2016). Caregiving for older adults and the caregivers’ health: An
016-0064-x
Carmeli, E. (2014). The invisibles: Unpaid caregivers of the elderly. Frontiers in Public
Catalyst. (2016). Smartphone behaviour in Canada and the implications for marketers in 2016.
Center for Technology and Aging (CTA). (2014). The new era of connected aging: A framework
for understanding technologies that support older adults in aging in place. Retrieved
from http://www.techandaging.org/ConnectedAgingFramework.pdf
Chafe, R. (2017). The value of qualitative description in health services and policy research.
Chappell, N. L., Dujela, C., & Smith, A. (2014). Spouse and adult child differences in caregiving
Chappell, N. L., & Funk, L. M. (2011). Social support, caregiving, and aging. Canadian Journal
253
on Aging, 30(3), 355-370. doi:10.1017/S0714980811000316
Chen, K., & Chan, A. H. (2011). A review of technology acceptance by older adults.
Chiu, M., Wesson, V., Sadavoy, J. (2013). Improving caregiving competence, stress coping, and
mental well-being in informal dementia carers. World Journal of Psychiatry, 3(3), 65-73.
doi: 10.5498/wjp.v3.i3.65
Chua, J., & Pachana, N. A. (2016). Use of a psychoeducational skill training DVD program to
Chung, P. Y. F., Ellis-Hill, C., & Coleman, P. (2017). Supporting activity engagement by family
Cimperman, M., Brenčič, M. M., & Trkman, P. (2016). Analyzing older users’ home telehealth
Clark, A., & Morriss, L. (2017). The use of visual methodologies in social work research over
the last decade: A narrative review and some questions for the future. Qualitative Social
Clark-Ibáñez, M. (2004). Framing the social world with photo-elicitation interviews. American
254
Clyburn, L. D., Stones, M. J., Hadjistavropoulos, T., & Tuokko, H. (2000). Predicting caregiver
Cohen, S. A., Cook, S., Kelley, L., Sando, T., & Bell, A. E. (2015). Psychosocial factors of
caregiver burden in child caregivers: Results from the new national study of
Colantonio, A., Cohen, C., & Pon, M. (2001). Assessing support needs of caregivers of persons
with dementia: Who wants what? Community Mental Health Journal, 37(3), 231-243.
Colantonio, A., Kositsky, A. J., Cohen, C., & Vernich, L. (2001). What support do caregivers of
elderly want? Results from the Canadian Study of Health and Aging. Canadian Journal
https://www.cno.org/globalassets/docs/reg/41037_entrytopracitic_final.pdf
http://www.cno.org/globalassets/docs/reg/41042_entrypracrpn.pdf
Colorafi, K. J., & Evans, B. (2016). Qualitative descriptive methods in health science research.
10.1177/1937586715614171
Conde-Sala, J. L., Garre-Olmo, J., Turró-Garriga, O., Vilalta-Franch, J., & López-Pousa, S.
255
Conde-Sala, J. L., Garre-Olmo, J., Turró-Garriga, O., Vilalta-Franch, J., & López-Pousa, S.
between spouse and adult child caregivers. Dementia and Geriatric Cognitive
Connell, C. M., Janevic, M. R., & Gallant, M. P. (2001). The costs of caring: Impact of dementia
Cook, B., & Twidle, P. (2016, October 26-27). Increasing awareness of Alzheimer’s Disease
10.1109/iTAG.2016.16
Cooper, C., Katona, C., Orrell, M., & Livingston, G. (2008). Coping strategies, anxiety and
Crespo, M., López, J., & Zarit, S. H. (2005). Depression and anxiety in primary caregivers: A
10.1002/gps.1321
Creswell, J. W. (2013). Qualitative inquiry and research design: Choosing among five
Creswell, J. W., & Miller, D. L. (2000). Determining validity in qualitative inquiry. Theory into
Critical Appraisal Skills Programme (CASP). (2017). CASP Checklists. Retrieved from
http://www.casp-uk.net/casp-tools-checklists
256
Crotty, M. (1998). The foundation of social research: Meaning and perspective in the research
Czarnuch, S., & Mihailidis, A. (2011). The design of intelligent in-home assistive technologies:
Assessing the needs of older adults with dementia and their caregivers. Gerontechnology,
10(3), 169-182.
Davies, J., & Gregory, D. (2007). Entering the dialogue: Marriage biographies and dementia
Davis, B., Nies, M., Shehab, M., & Shenk, D. (2014). Developing a pilot e-mobile app for
Davis, F. D. (1989). Perceived usefulness, perceived ease of use, and user acceptance of
Davis, S. W., & Oakley-Girvan, I. (2017). Achieving value in mobile health applications for
0608-1
de Rotrou, J., Cantegreil, I., Faucounau, V., Wenisch, E., Chausson, C., Jegou, D., Grabar, S., &
Decker, S. E., Naugle, A. E., Carter-Visscher, R., Bell, K., & Seifert, A. (2011). Ethical issues in
del-Pino-Casado, R., Cardosa, M. R., López-Martínez, C., & Orgeta, V. (2019). The association
257
between subjective caregiver burden and depressive symptoms in carers of older
http://www.dementiatoday.com/apps-to-help-caregivers-stay-organized/
Dennison, L., Morrison, L., Conway, G., & Yardley, L. (2013). Opportunities and challenges for
Denzin, N. K., & Lincoln, Y. S. (2005). The Sage handbook of qualitative research (3rd ed.).
Devor, M., & Renvall, M. (2008). An educational intervention to support caregivers of elders
with dementia. American Journal of Alzheimer’s Disease & Other Dementias, 23(3),
Di Mattei, V.E., Prunas, A., Novella, L., Marcone, A., Cappa, S. F., & Sarno, L. (2008). The
burden of distress in caregivers of elderly demented patients and its relationship with
Docking, R. E., Lane, M., & Schofield, P. A. (2017). Usability testing of the iPhone app to
improve pain assessment for older adults with cognitive impairment (prehospital setting):
Dupuis, S. L., Mitchell, G. J., Jonas-Simpson, C. M., Whyte, C. P., Gillies, J. L., & Carson, J. D.
Edmondson, A. J., Brennan, C., & House, A. O. (2018). Using photo-elicitation to understand
reasons for repeated self-harm: A qualitative study. BMC Psychiatry, 18(1), 98.
258
Eloniemi-Sulkava, U., Notkola, I. L., Hentinen, M., Kivela, S. L., Sivenius, J., & Sulkava, R.
El-Saifi, N., Moyle, W., & Jones, C. (2018). Family caregivers’ perspectives on medication
adherence challenges in older people with dementia: A qualitative study. Aging & Mental
Health, 1-7.
Epstein, I., Aligato, A., Krimmel, T., & Mihailidis, A. (2016). Older adults' and caregivers'
20160308-02
Etters, L., Goodall, D., & Harrison, B. E. (2008). Caregiver burden among dementia patient
Evans, D., Robertson, J., & Candy, A. (2016). Use of photovoice with people with younger onset
https://www.messenger.com/features
Family Caregiver Alliance. (2012). Digital technology for the family caregiver. Retrieved from
https://www.caregiver.org/digital-technology-family-caregiver
Faulkner, L. (2003). Beyond the five-user assumption: Benefits of increased sample sizes in
259
usability testing. Behaviour Research Methods, Instruments, and Computers, 35(3), 379-
383.
Fazio, S., Pace, D., Flinner, J., & Kallmyer, B. (2018). The fundamentals of person-centered care
Filoteo, J. V., Cox, E. M., Split, M., Gross, M., Culjat, M., & Keene, D. (2018, July 17-21).
presented at the 2018 40th Annual International Conference of the IEEE Engineering in
Forbes, D. A., Markle-Reid, M., Hawranik, P., Peacock, S., Kingston, D., Morgan, D.,
Henderson, S., Leipert, B., & Jansen, S. L. (2008). Availability and acceptability of
persons with dementia. Home Health Care Services Quarterly, 27(2), 75-99. doi:
10.1080/01621420802022548
Forlizzi, J., & Battarbee, K. (2004, August 1-4). Understanding experience in interactive
Fusch, P. I., & Ness, L. R. (2015). Are we there yet? Data saturation in qualitative research. The
Gagnon-Roy, M., Bourget, A., Stocco, S., Courchesne, A. C. L., Kuhne, N., & Provencher, V.
7105190020p10.
Gallagher, D., Mhaolain, A. N., Crosby, L., Ryan, D., Lacey, L., Coen, R. F., Walsh, C.,
260
Coakley, D., Walsh, J. B., Cunningham, C., & Lawlor, B. A. (2011). Self-efficacy for
Genoe, R., & Dupuis, S. (2013). Picturing leisure: Using photovoice to understand the
Genoe, M. R., & Dupuis, S. L. (2014). The role of leisure within the dementia context.
Gibson, G., Dickinson, C., Brittain, K., & Robinson, L. (2015). The everyday use of assistive
technology by people with dementia and their family carers: A qualitative study. BMC
Giebel, C. M., Challis, D., & Montaldi, D. (2015). Understanding the cognitive underpinnings of
functional impairments in early dementia: A review. Aging & Mental Health, 19(10),
859-875.
Giebel, C. M., Challis, D. J., & Montaldi, D. (2016). A revised interview for deterioration in
daily living activities in dementia reveals the relationship between social activities and
Giebel, C. M., & Sutcliffe, C. (2018). Initiating activities of daily living contributes to well‐being
Giebel, C. M., Sutcliffe, C., & Challis, D. (2017). Hierarchical decline of the initiative and
Giebel, C. M., Sutcliffe, C., Stolt, M., Karlsson, S., Renom-Guiteras, A., Soto, M., Verbeek, H,
261
Zabalegui, A., & Challis, D. (2014). Deterioration of basic activities of daily living and
their impact on quality of life across different cognitive stages of dementia: A European
Giosa, J. L., Stolee, P., Dupuis, S. L., Mock, S. E., & Santi, S. (2014). An examination of family
caregiver experiences during care transitions of older adults. Canadian Journal on Aging,
Gleason, A. W. (2015). mHealth – opportunities for transforming global health care and barriers
10.1080/15424065.2015.1035565
Godin, K., Stapleton, J., Kirkpatrick, S. I., Hanning, R. M., & Leatherdale, S. T. (2015).
Applying systematic review search methods to the grey literature: A case study
Godwin, K. M., Mills, W. L., Anderson, J. A., & Kunik, M. E. (2013). Technology-driven
10.1177/1533317513481091
Goodwin, J., Cummins, J., Behan, L., & O’Brien, S. M. (2016). Development of a mental health
https://play.google.com/store/apps/details?id=com.instagram.android
262
https://play.google.com/store/apps/details?id=com.twitter.android
https://play.google.com/store/apps/details?id=com.tencent.mm
https://play.google.com/store/apps/details?id=com.google.android.calendar
https://play.google.com/store/apps/details?id=com.dd.doordash
https://play.google.com/store/apps/details?id=com.instacart.client
https://play.google.com/store/apps/details?id=com.ncconsulting.skipthedishes_android
Google Play. (2019h). Uber Eats: Local food delivery. Retrieved from
https://play.google.com/store/apps/details?id=com.ubercab.eats
https://play.google.com/store/apps/details?id=com.ubercab
https://play.google.com/store/apps/details?id=me.lyft.android
https://play.google.com/store/apps/details?id=com.netflix.mediaclient
https://play.google.com/store/apps/details?id=com.google.android.youtube
Google Play. (2019m). Kijiji: Buy, sell and save on local deals. Retrieved from
https://play.google.com/store/apps/details?id=com.ebay.kijiji.ca
263
Gottlieb, B. H., & Wolfe, J. (2002). Coping with family caregiving to persons with dementia: A
https://www.canada.ca/en/health-canada/services/health-care-system/ehealth.html
Government of Canada. (2014). Tri-council policy statement: Ethical conduct for research
2014/TCPS_2_FINAL_Web.pdf
from http://www.crtc.gc.ca/eng/publications/reports/policymonitoring/2015/cmr2.htm
http://www.ic.gc.ca/eic/site/028.nsf/eng/home
Graneheim, U. H., & Lundman, B. (2004). Qualitative content analysis in nursing research:
Gray, B., Robinson, C., & Seddon, D. (2008). Invisible children: Young carers of parents with
Guba, E. G., & Lincoln, Y. S. (1981). Effective evaluation. San Francisco, CA: Joey-Bass.
Guba, E. G., & Lincoln, Y. S. (1985). Naturalistic Inquiry. Thousand Oaks, CA: Sage.
264
Denzin & Y. S. Lincoln (Eds.), The landscape of qualitative research: Theories and
Halbach, T., Solheim, I., Ytrehus, S., & Schulz, T. (2018). A mobile application for supporting
dementia relatives: A case study. Studies in Health Technology and Informatics, 256,
839-846.
Han, A., Radel, J., McDowd, J. M., & Sabata, D. (2016). Perspectives of people with dementia
Hanssen, I., & Kuven, B. M. (2016). Moments of joy and delight: The meaning of traditional
Harper, D. (2002). Talking about pictures: A case for photo elicitation. Visual Studies, 17, 13–
26.
Hasselkus, B. R., & Murray, B. J. (2007). Everyday occupation, well-being, and identity: The
Health Central Healthline. (2017). New dementia app for family caregivers. Retrieved from
https://www.torontocentralhealthline.ca/displayArticle.aspx?id=31774
Hebert, R., Dubois, M. F., Wolfson, C., Chambers, L., & Cohen, C. (2001). Factors associated
265
with long-term institutionalization of older people with dementia: Data from the
Hebert, R., Levesque, L., Vezina, J., Lavoie, J. P., Ducharme, F., Gendron, C., Preville, M.,
Voyer, L., & Dubois, M. F. (2003). Efficacy of a psychoeducative group program for
Hellström, I., Nolan, M., & Lundh, U. (2007). Sustaining ‘couplehood': Spouses' strategies for
Hensel, B. K., Parker-Oliver, D., & Demiris, G. (2007). Videophone communication between
residents and family: A case study. Journal of the American Medical Directors
Hilliard, M. E., Hahn, A., Ridge, A. K., Eakin, M. N., & Riekert, K. A. (2014). User preferences
and design recommendations for an mHealth app to promote cystic fibrosis self-
Hirschey, J., Bane, S., Mansour, M., Sperber, J., Agboola, S., Kvedar, J., & Jethwani, K. (2018).
Evaluating the usability and usefulness of a mobile app for atrial fibrillation using
qualitative methods: Exploratory pilot study. JMIR Human Factors, 5(1), e13.
Hollander, M. J., Liu, G., & Chappell, N. L. (2009). Who cares and how much? The imputed
unpaid caregivers providing care to the elderly. Healthcare Quarterly, 12(2), 42-49.
doi:10.12927/hcq.2009.20660
Holthe, T., Jentoft, R., Arntzen, C., & Thorsen, K. (2018). Benefits and burdens: Family
266
caregivers’ experiences of assistive technology (AT) in everyday life with persons with
Hong, G. R. S., & Kim, H. (2008). Family caregiver burden by relationship to care recipient with
Hopwood, J., Walker, N., McDonagh, L., Rait, G., Walters, K., Iliffe, S., Ross, J., & Davies, N.
Hsu, C. C., Wang, Y. M., Huang, C. R., Sun, F. J., Lin, J. P., Yip, P. K., & Liu, S. I. (2017).
http://dx.doi.org/10.1016/j.ijge.2016.05.004
Hudson, N., Culley, L., Law, C., Mitchell, H., Denny, E., & Raine‐Fenning, N. (2016). ‘We
appraisals and revisions among couples living with endometriosis. Sociology of Health &
Hunt, C. K. (2003). Concepts in caregiver research. Journal of Nursing Scholarship, 35(1), 27-
32.
Ienca, M., Fabrice, J., Elger, B., Caon, M., Pappagallo, A. S., Kressig, R. W., & Wangmo, T.
(2017). Intelligent assistive technology for Alzheimer’s disease and other dementias: A
Imbeault, H., Gagnon, L., Pigot, H., Giroux, S., Marcotte, N., Cribier-Delande, P., Duval, J.,
Bocti, C., Lacombe, G., Fulop, T., & Bier, N. (2018). Impact of AP@LZ in the daily life
267
of three persons with Alzheimer’s disease: Long-term use and further exploration of its
https://doi.org/10.1080/09602011.2016.1172491
Imbeault, H., Langlois, F., Bocti, C., Gagnon, L., & Bier, N. (2018). Can people with
Iribarren, S. J., Cato, K., Falzon, L., & Stone, P. W. (2017). What is the economic evidence for
Joanna Briggs Institute. (2011). Reviewers’ manual: 2011 edition. University of Adelaide, AUS:
Joddrell, P., & Astell, A. J. (2017). Acto Dementia: Implementing accessibility options for
dementia in existing touchscreen apps. Alzheimer's & Dementia: The Journal of the
Jootun, D., McGhee, G., & Marland, G. R. (2009). Reflexivity: Promoting rigour in qualitative
Juarascio, A. S., Goldstein, S. P., Manasse, S. M., Forman, E. M., & Butryn, M. L. (2015).
268
Perceptions of the feasibility and acceptability of a smartphone application for the
treatment of binge eating disorders: Qualitative feedback from a user population and
Kable, A. K., Pich, J., & Maslin-Prothero, S. E. (2012). A structured approach to documenting a
search strategy for publication: A 12 step guideline for authors. Nurse Education
Karg, N., Graessel, E., Randzio, O., & Pendergrass, A. (2018). Dementia as a predictor of care-
Karr, D. (2017, September 13). How each generation has adapted to and utilizes technology.
Keller, H. H. (2016). Improving food intake in persons living with dementia. Annals of the New
Kelly, K., & Wolff, J. (2015). Family caregiving is finally gaining public and policy
Kerkhof, Y. J. F., Bergsma, A., Graff, M. J. L., & Dröes, R. M. (2017). Selecting apps for people
with mild dementia: Identifying user requirements for apps enabling meaningful activities
Engineering, 4, 1-21.
Kerkhof, Y. J. F., Graff, M. J. L., Bergsma, A., de Vocht, H. H. M., & Droes, R. (2016). Better
centered program to support people with mild dementia and their carers through use of
269
hand-held touch screen devices. International Psychogeriatrics, 28(11), 1917-1929. doi:
0.1017/S1041610216001071
Kerkhof, Y., Pelgrum-Keurhorst, M., Mangiaracina, F., Bergsma, A., Vrauwdeunt, G., Graff, M.,
people with mild dementia find supportive apps for self-management and meaningful
Khan, K. (2012, September). User experience in mobile phones by using semantic differential
Kim, B. J., Liu, L., Nakaoka, S., Jang, S., & Browne, C. (2018). Depression among older
Japanese Americans: The impact of functional (ADL & IADL) and cognitive
Kim, H., Chang, M., Rose, K., & Kim, S. (2012). Predictors of caregiver burden in caregivers of
Kim, H., Sefcik, J. S., & Bradway, C. (2016). Characteristics of qualitative descriptive studies: A
Kishchuk, O. (2018, December 31). Millennials and technology: Their digital nativity. Retrieved
from https://abacusdata.ca/millennials-and-technology-their-digital-nativity/
Kitwood, T (1997). Dementia reconsidered: The person comes first. Philadelphia: Open
University Press.
Klimova, B. (2017). Mobile phone apps in the management and assessment of mild cognitive
270
Klimova, B., Valis, M., & Kuca, K. (2018). Exploring assistive technology as a potential
Kneebone, I. I., & Martin, P. R. (2003). Coping and caregivers of people with dementia. British
Kong, A. P. (2015). Conducting cognitive exercises for early dementia with the use of apps on
10.1177/1525740114544026
Krauskopf, P. B., & Golden, A. (2016). AIDSInfo HIV/AIDS Guidelines App and
Lai, D. W. L., & Surood, S. (2008). Service barriers of Chinese family caregivers in Canada.
doi:10.1080/01634370802039650
Laidlaw, R., Dixon, D., Morse, T., Beattie, T. K., Kumwenda, S., & Mpemberera, G. (2017).
Using participatory methods to design an mHealth intervention for a low income country,
a case study in Chikwawa, Malawi. BMC Medical Informatics and Decision Making, 17,
Lapid, M. I., Atherton, P. J., Clark, M. M., Kung, S., Sloan, J. A., & Rummans, T. A. (2015).
Lapum, J. L., Liu, L., Church, K., Hume, S., Harding, B., Wang, S., Nguyen, M., Cohen, G., &
271
Law, E. L. C., Roto, V., Hassenzahl, M., Vermeeren, A. P., & Kort, J. (2009, April 4-9).
doi: 10.1145/1518701.1518813
Lee, E. (2015). Do technology-based support groups reduce care burden among dementia
10.1080/15433714.2014.930362
Lee, J. A., Nguyen, H., Park, J., Tran, L., Nguyen, T., & Huynh, Y. (2017). Usages of computers
and smartphones to develop dementia care education program for Asian American family
Lee, Y., & Smith, L. (2012). Qualitative research on Korean American dementia caregivers'
Leff, B. (2009). Defining and disseminating the hospital-at-home model. Canadian Medical
Leng, F. Y., Yeo, D., George, S., & Barr, C. (2014). Comparison of iPad applications with
Lewis, M. L., Hobday, J. V., & Hepburn, K. W. (2010). Internet-based program for dementia
caregivers. American Journal of Alzheimer’s Disease & Other Dementias, 25(8), 674-
679.
Lieffers, J. R. L., Vance, V. A., & Hanning, R. M. (2014). Use of mobile device applications in
272
Canadian dietetic practice. Canadian Journal of Dietetic Practice and Research, 75(1),
Lilly, M. B., Robinson, C. A., Holtzman, S., & Bottorff, J. (2012). Can we move beyond burden
and burnout to support the health and wellness of family caregivers to persons with
dementia? Evidence from British Columbia, Canada. Health and Social Care in the
Lim, F. S., Wallace, T., Luszcz, M. A., & Reynolds, K. J. (2013). Usability of tablet computers
Lincoln, Y. S., & Guba, E. G. (1986). But is it rigorous? Trustworthiness and authenticity in
Lindauer, A., & Harvath, T. A. (2014). Pre‐death grief in the context of dementia caregiving: A
Liu, L., Miguel Cruz, A., Rios Rincon, A., Buttar, V., Ranson, Q., & Goertzen, D. (2015). What
using the Unified Theory of Acceptance and Use of Technology (UTAUT). Disability
Llanque, S., Savage, L., Rosenburg, N., & Caserta, M. (2016). Concept analysis: Alzheimer’s
Lloyd, J., Patterson, T., & Muers, J. (2016). The positive aspects of caregiving in dementia: A
Lorenz, K., Freddolino, P. P., Comas-Herrera, A., Knapp, M., & Damant, J. (2019). Technology-
based tools and services for people with dementia and carers: Mapping technology onto
273
Lwi, S. J., Ford, B. Q., Casey, J. J., Miller, B. L., & Levenson, R. W. (2017). Poor caregiver
10.1073/pnas.1701597114
Madaleno, T. R., Moriguti, J. C., Ferriolli, E., De Carlo, M. M. R., & Lima, N. K. (2019). Mood,
lifestyle and cardiovascular risk factors among older caregivers of patients with
Research, 1-6.
9073-0
Mansbach, W. E., Mace, R. A., Clark, K. M., & Firth, I. M. (2017). Meaningful activity for long-
term care residents with dementia: A comparison of activities and raters. The
Mao, H. F., Chang, L. H., Yao, G., Chen, W. Y., & Huang, W. N. W. (2015). Indicators of
Maresova, P., Tomsone, S., Lameski, P., Madureira, J., Mendes, A., Zdravevski, E., Chorbev, I.,
Trajkovik, V., Ellen, M., & Rodil, K. (2018). Technological solutions of older people
with Alzheimer’s disease: Review. Current Alzheimer Research, 15, 975-983. doi:
10.2174/1567205015666180427124547
Marsh, W., Shawe, J., Robinson, A., & Leamon, J. (2016). Moving pictures: The inclusion of
274
photo-elicitation into a narrative study of mothers' and midwives' experiences of babies
Martin, F., Turner, A., Wallace, L. M., & Bradbury, N. (2013). Conceptualisation of self-
management intervention for people with early stage dementia. European Journal of
Mason, M. (2010). Sample size and saturation in PhD studies using qualitative interviews.
Mavounza, C., Ouellet, M. C., & Hudon, C. (2018). Caregivers’ emotional distress due to
Mc Donnell, E., & Ryan, A. (2013). Male caregiving in dementia: A review and commentary.
Meiland, F. J., Bouman, A. I., Sävenstedt, S., Bentvelzen, S., Davies, R. J., Mulvenna, M. D.,
Nugent, C. D., Moelaert, F., Hettinga, M. E., Bengtsson, J. E., & Dröes, R. M. (2012).
Usability of a new electronic assistive device for community-dwelling persons with mild
Meiland, F., Innes, A., Mountain, G., Robinson, L., van der Roest, H., García-Casal, J. A., Gove,
D., Thyrian, J. R., Evans, S., Droes, R., Kelly, F., Kurz, A., Casey, D., Szczesniak, D.,
Dening, T., Craven, M. P., Span, M., Felzmann, H., Tsolaki, M., & Franco-Martin, M.
deployment, and ethics. JMIR Rehabilitation and Assistive Technologies, 4(1), e1.
Menne, H. L., Kinney, J. M., & Morhardt, D. J. (2002). ‘Trying to continue to do as much as
275
they can do’ Theoretical insights regarding continuity and meaning making in the face of
Meo, A. I. (2010). Picturing students' habitus: The advantages and limitations of photo-
among institutionalized elders through technology. Aging & Mental Health, 6(4), 387-
396.
Middelweerd, A., van der Laan, D. M., van Stralen, M. M., Mollee, J. S., Stuij, M., te Velde, S.
J., & Brug, J. (2015). What features do Dutch university students prefer in a smartphone
Milani, R. V., Bober, R. M., & Lavie, C. J. (2016). The role of technology in chronic disease
http://dx.doi.org/10.1016/j.pcad.2016.01.001
Milne, A., Guess, R., & Russ, A. (2014). Pyscho-educational support for relatives of people with
Milne, J., & Oberle, K. (2005). Enhancing rigor in qualitative description: A case study. Journal
Miranda-Castillo, C., Woods, B., & Orrell, M. (2013). The needs of people with dementia living
276
Moher, D., Liberati, A., Tetzlaff, J., Altman, D. G., & The PRISMA Group. (2009). Preferred
Reporting Items for Systematic Reviews and Meta-Analyses: The PRISMA Statement.
Moon, H., & Adams, K. B. (2013). The effectiveness of dyadic interventions for people with
Moore, J. (2012). The benefits of mobile apps for patients and providers. British Journal of
Moreira, H., Oliveira, R., & Flores, N. (2013, October 9-12). STAlz: Remotely supporting the
diagnosis, tracking and rehabilitation of patients with Alzheimer's. Paper presented at the
Morgan, D. G., Semchuk, K. M., Stewart, N. J., & D’arcy, C. (2002). Rural families caring for a
relative with dementia: Barriers to use of formal services. Social Science &
Morse, J. M. (2000). Determining sample size. Qualitative Health Research, 10(1), 3-5.
Murray, L., & Nash, M. (2017). The challenges of participant photography: A critical reflection
on methodology and ethics in two cultural contexts. Qualitative Health Research, 27(6),
National League for Nursing (NLN). (2015). A vision for the changing faculty role: Preparing
http://www.nln.org/docs/default-source/about/nln-vision-series-%28position-
statements%29/nlnvision_8.pdf?sfvrsn=4
Neergaard, M. A., Olesen, F., Andersen, R. S., & Sondergaard, J. (2009). Qualitative
277
description–the poor cousin of health research? BMC Medical Research
Newton, L., Dickinson, C., Gibson, G., Brittain, K., & Robinson, L. (2016). Exploring the views
of GPs, people with dementia and their carers on assistive technology: A qualitative
Nielsen, J. (2012, June 4). How many test users in a usability study? Retrieved
from http://www.nngroup.com.
Nielsen, J. & Landauer, T.K. (1993, April 24-29). A mathematical model of the finding of
Netherlands.
Novais, T., Dauphinot, V., Krolak-Salmon, P., & Mouchoux, C. (2017). How to explore the
Novick, G. (2008). Is there a bias against telephone interviews in qualitative research? Research
Nygard, L. (2008). The meaning of everyday technology as experienced by people with dementia
Nygard, L., & Starkhammar, S. (2007). The use of everyday technology by people with dementia
living alone: Mapping out the difficulties. Aging & Mental Health, 11(2), 144-155. doi:
10.1080/13607860600844168
Ory, M., Hoffman, P., Yee, J., Tennstedt, S., & Schulz, R. (1999). Prevalence and impact of
278
caregiving: A detailed comparison between dementia and nondementia caregivers. The
Ott, C. H., Sanders, S., & Kelber, S. T. (2007). Grief and personal growth experience of spouses
Papastavrou, E., Kalokerinou, A., Papacostas, S. S., Tsangari, H., & Sourtzi, P. (2007). Caring
for a relative with dementia: Family caregiver burden. Journal of Advanced Nursing,
Paré, G., Bourget, C., Aguirre, M., Beaudoin, J., Boutin, S., Vachon, K., Leaver, C., Frazer, C.,
Ducharme, G., & Lavoie, A. (2017). Diffusion of smart devices for health in Canada.
Park, J., Han, S. H., Kim, H. K., Oh, S., & Moon, H. (2013). Modeling user experience: A case
Parkinson, M., Carr, S. M., Rushmer, R., & Abley, C. (2016). Investigating what works to
support family carers of people with dementia: A rapid realist review. Journal of Public
Peacock, S., Forbes, D., Markle-Reid, M., Hawranik, P., Morgan, D., Jansen, L., Leipert, B. D.,
& Henderson, S. R. (2010). The positive aspects of the caregiving journey with dementia:
279
Peek, S. T., Wouters, E. J., van Hoof, J., Luijkx, K. G., Boeije, H. R., & Vrijhoef, H. J. (2014).
Peisachovich, E., Jokel, R., Appel, L., Da Silva, C., Sinclair, D., & Soroor, W. (2018, July 23-
25). SafeHome app: Design and usability for a digital application to promote physical
safety to persons living with dementia. Paper presented at the 2018 9th International
10.1109/IISA.2018.8633634
Penfold, J. (2014). Improving pain assessment in patients with dementia: Julie Penfold describes
a high-tech tool for community nurses to use when working with confused older
Peng, W., Kanthawala, S., Yuan, S., & Hussain, S. A. (2016). A qualitative study of user
perceptions of mobile health apps. BMC Public Health, 16(1), 1158. doi:
10.1186/s12889-016-3808-0
Pérès, K., Helmer, C., Amieva, H., Orgogozo, J. M., Rouch, I., Dartigues, J. F., & Barberger‐
37-44.
Perry, J., & O'Connor, D. (2002). Preserving personhood: (Re)membering the spouse with
Peterson, K., Hahn, H., Lee, A. J., Madison, C. A., & Atri, A. (2016). In the information age, do
280
dementia caregivers get the information they need? Semi-structured interviews to
Phillippi, J., & Lauderdale, J. (2017). A guide to field notes for qualitative research: Context and
Phinney, A., Chaudhury, H., & O’Connor, D. L. (2007). Doing as much as I can do: The
meaning of activity for people with dementia. Aging and Mental Health, 11(4), 384-393.
Phinney, A., Dahlke, S., & Purves, B. (2013). Shifting patterns of everyday activity in early
dementia: Experiences of men and their families. Journal of Family Nursing, 19(3), 348-
374.
Pinquart, M., & Sörensen, S. (2011). Spouses, adult children, and children-in-law as caregivers
Pitts, K., Pudney, K., Zachos, K., Maiden, N., Krogstie, B., Jones, S., Rose, M., MacManus, J.,
& Turner, I. (2015). Using mobile devices and apps to support reflective learning about
older people with dementia. Behaviour & Information Technology, 34(6), 613-631.
Powell, J., Chiu, T., & Eysenbach, G. (2008). A systematic review of networked technologies
supporting carers of people with dementia. Journal of Telemedicine and Telecare, 14,
Prince, M., Bryce, R., Albanese, E., Wimo, A., Ribeiro, W., & Ferri, C. P. (2013). The global
281
prevalence of dementia: A systematic review and metaanalysis. Alzheimer’s & Dementia:
Prizer, L. P., & Zimmerman, S. (2018). Progressive support for activities of daily living for
Prorok, J. C., Horgan, S., & Seitz, D. (2013). Health care experiences of people with dementia
Polit, D. F., & Beck, C. T. (2009). International differences in nursing research, 2005–2006.
Polit, D. F., & Beck, C. T. (2014). Supplement for Chapter 14: Qualitative descriptive studies. In
Essentials of nursing research: Appraising evidence for nursing practice (8th ed.).
Philadelphia, PA: Wolters Kluwer Health; Lippincott Willians & Wilkins. Retrieved from
http://downloads.lww.com/wolterskluwer_vitalstream_com/sample-
content/9781451176797_Polit/samples/CS_Chapter_14.pdf
Parry, R. A. (2004). The complete idiot’s guide to the Talmud. Indianapolis, USA: Penguin
Quinn, C., Nelis, S. M., Martyr, A., Morris, R. G., Victor, C., & Clare, L. (2019). Caregiver
influences on ‘living well’ for people with dementia: Findings from the IDEAL
Ramanathan, N., Swendeman, D., Comulada, W. S., Estrin, D., & Rotheram-Borus, M. J. (2013).
Identifying preferences for mobile health applications for self-monitoring and self-
282
Rasche, P., Mertens, A., Bröhl, C., Theis, S., Seinsch, T., Wille, M., Pape, H., & Knobe, M.
(2017). The “Aachen fall prevention App”–a smartphone application app for the self-
assessment of elderly patients at risk for ground level falls. Patient Safety in
Rath, T. (n.d.). You can’t be anything you want to be… Retrieved from
http://www.tomrath.org/can-anything-want-myth/
Rathnayake, S., Moyle, W., Jones, C., & Calleja, P. (2018). mHealth applications as an
educational and supportive resource for family carers of people with dementia: An
Reed, C., Belger, M., Dell'Agnello, G., Wimo, A., Argimon, J. M., Bruno, G., Dodel, R., Haro, J.
Reynoldson, C., Stones, C., Allsop, M., Gardner, P., Bennett, M. I., Closs, S. J., Jones, R., &
Knapp, P. (2014). Assessing the quality and usability of smartphone apps for pain self-
Rialle, V., Ollivet, C., Guigui, C., & Hervé, C. (2008). What do family caregivers of Alzheimer’s
Riley, R. G., & Manias, E. (2004). The uses of photography in clinical nursing practice and
Rinaldi, P., Spazzafumo, L., Mastriforti, R., Mattioli, P., Marvardi, M., Polidori, M. C., Abate G,
283
Bartorelli, L., Bonaiuto, S., Capurso, A., Cucinotta, D., Gallucci, M., Giordano, M.,
Martorelli, M., Masaraki, G., Nieddu, A., Pettenati, C., Putzu, P., Tammaro, V.A,,
Tomassini, P.F., Vergani, C., Senin, U., & Capurso, A. (2005). Predictors of high level of
Roland, K. P., & Chappell, N. L. (2015). Meaningful activity for persons with dementia: Family
Rolfe, G. (2006). Validity, trustworthiness and rigour: Quality and the idea of qualitative
2648.2006.03727.x
Rosenberg, L., Kottorp, A., & Nygård, L. (2012). Readiness for technology use with people with
510-530.
https://searchnetworking.techtarget.com/definition/connection
Rozario, P. A., Morrow-Howell, N., & Hinterlong, J. E. (2004). Role enhancement or role strain:
Ruggiano, N., Brown, E. L., Li, J., & Scaccianoce, M. (2018). Rural dementia caregivers and
Ruggiano, N., Brown, E. L., Shaw, S., Geldmacher, D., Clarke, P., Hristidis, V., & Bertram, J.
284
(2019). The potential of information technology to navigate caregiving systems:
432-450.
Sandelowski, M. (1993). Rigor or rigor mortis: The problem of rigor in qualitative research
Sandelowski, M. (1995). Sample size in qualitative research. Research in Nursing & Health,
NUR9>3.0.CO;2-G
Sandhu, A., Ives, J., Birchwood, M., & Upthegrove, R. (2013). The subjective experience and
Sanjari, M., Bahramnezhad, F., Fomani, F. K., Shoghi, M., & Cheraghi, M. A. (2014). Ethical
Sarkar, U., Gourley, G. I., Lyles, C. R., Tieu, L., Clarity, C., Newmark, L., Singh, K., & Bates,
285
Sasaki, H. (2016, May 16-20). A smartphone app provides preventive care for the elderly with
dementia. Paper presented at the 2016 IEEE 32nd International Conference on Data
Sävenstedt, S., Brulin, C., & Sandman, P. O. (2003). Family members' narrated experiences of
Savita, K. S., Marrima, J. J. D. A., Muniandy, M., Abidin, A. I. Z., & Taib, S. M. (2018,
November 21-22). Help me! MyDem application for early stage dementia patients. Paper
Schumacher, K., Beck, C. A., & Marren, J. M. (2006). Family caregivers: Caring for older
adults, working with their families. The American Journal of Nursing, 106(8), 40-49.
Schoenmakers, B., Buntinx, F., & Delepeleire, J. (2010). Factors determining the impact of care-
Semple, J. L., & Armstrong, K. A. (2017). Mobile applications for postoperative monitoring
10.1503/cmaj.160195
Reports/SOCI_COM_ExecutiveSummary_dementia_2016-11-14_E_Final.pdf
286
Shell, L. (2014). Photo-elicitation with autodriving in research with individuals with mild to
Shim, B., Barroso, J., & Davis, L. L. (2012). A comparative qualitative analysis of stories of
Short, J., Williams, E., & Christie, B. (1976). The social psychology of telecommunications.
Shreve, J., Baier, R., Epstein-Lubow, G., & Gardner, R. L. (2016). Dementia caregivers’
Silva, B. M., Rodrigues, J. J., de la Torre Díez, I., López-Coronado, M., & Saleem, K. (2015).
265-272.
Siminerio, L. M. (2010). The role of technology and the chronic care model. Journal of Diabetes
Sindi, S., Calov, E., Fokkens, J., Ngandu, T., Soininen, H., Tuomilehto, J., & Kivipelto, M.
(2015). The CAIDE Dementia Risk Score App: The development of an evidence-based
mobile application to predict the risk of dementia. Alzheimer's & Dementia: Diagnosis,
Smith, S. K., & Mountain, G. A. (2012). New forms of information and communication
technology (ICT) and the potential to facilitate social and leisure activity for people
287
Solanas, A., Martinez-Balleste, A., Perez-Martinez, P. A., de la Pena, A. F., & Ramos, J. (2013).
m-Carer: Privacy-aware monitoring for people with mild cognitive impairment and
Span, M., Hettinga, M., Vernooij-Dassen, M., Eefsting, J., & Smits, C. (2013). Involving people
Spitznagel, M. B., Tremont, G., Davis, J. D., & Foster, S. M. (2006). Psychosocial predictors of
Sposaro, F., Danielson, J., & Tyson, G. (2010, August). iWander: An Android application for
dementia patients. Paper presented at the 2010 Annual International Conference of the
10.1109/IEMBS.2010.5627669
Spradley, J. P. (1979). The ethonographic interview. New York, USA: Holt, Rinehart and
Winston.
Springate, B. A., & Tremont, G. (2014). Dimensions of caregiver burden in dementia: Impact of
demographic, mood, and care recipient variables. The American Journal of Geriatric
Stall, N. M., Kim, S. J., Hardacre, K. A., Shah, P. S., Straus, S. E., Bronskill, S. E., Lix, L. M.,
Bell, C. M., & Rochon, P. A. (2019). Association of informal caregiver distress with
288
https://www12.statcan.gc.ca/census-recensement/2011/as-sa/98-311-x/98-311-
x2011003_2-eng.cfm
Statistics Canada. (2018, July 3). Linguistic characteristics of Canadians. Retrieved from
https://www12.statcan.gc.ca/census-recensement/2011/as-sa/98-314-x/98-314-x2011001-
eng.cfm
Steinhubl, S. R., Muse, E. D., & Topol, E. J. (2013). Can mobile health technologies transform
health care? Journal of the American Medical Association, 310(22), 23-24. doi:
10.1001/jama.2013.281078
Stewart, M., Barnfather, A., Neufeld, A., Warren, S., Letourneau, N., & Liu, L. (2006).
Accessible support for family caregivers of seniors with chronic conditions: From
Streubert, H. J., & Carpenter, D. R. (2013). Qualitative research in nursing: Advancing the
Suijkerbuijk, S., Nap, H. H., Cornelisse, L., IJsselsteijn, W. A., de Kort, Y. A., & Minkman, M.
Sullivan-Bolyai, S., Bova, C., & Harper, D. (2005). Developing and refining interventions in
persons with health disparities: The use of qualitative description. Nursing Outlook,
Sun, F. (2014). Caregiving stress and coping: A thematic analysis of Chinese family caregivers
289
Szabo, S. M., Whitlatch, C. J., Orsulic-Jeras, S., & Johnson, J. D. (2016). Recruitment challenges
Tam-Tham, H., Nettel-Aguirre, A., Silvius, J., Dalziel, W., Garcia, L., Molnar, F., & Drummond,
Tamim, S. R., & Grant, M. M. (2016). Exploring how health professionals create eHealth and
Tao, H., McRoy, S., Kovach, C. R., & Wang, L. (2016). Performance and usability of tablet
Thordardottir, B., Malmgren Fänge, A., Lethin, C., Rodriguez Gatta, D., & Chiatti, C. (2019).
Acceptance and use of innovative assistive technologies among people with cognitive
Tobin, G. A., & Begley, C. M. (2004). Methodological rigour within a qualitative framework.
Topo, P. (2009). Technology studies to meet the needs of people with dementia and their
290
caregivers. Journal of Applied Gerontology, 28(1), 5-37. doi:
10.1177/0733464808324019
Torp, S., Hanson, E., Hauge, S., Ulstein, I., & Magnusson, L. (2008). A pilot study how
elderly spousal carers in Norway. Health and Social Care in the Community, 16(1), 75-
Torre, D. & Murphy, J. (2015) A different lens: Changing perspectives using photo-
http://dx.doi.org/10.14507/epaa.v23.2051
Tremont, G., Davis, J. D., Bishop, D. S., & Fortinsky, R. H. (2008). Telephone-delivered
520.
Tsai, H. H., & Tsai, Y. F. (2010). Older nursing home residents’ experiences with
Tuckett, A. G. (2005). Part II. Rigour in qualitative research: complexities and solutions. Nurse
Turcotte, M. (2013). Family caregiving: What are the consequences? Retrieved from
https://www.statcan.gc.ca/pub/75-006-x/2013001/article/11858-eng.htm
Tyack, C., & Camic, P. M. (2017). Touchscreen interventions and the well-being of people with
10.1017/S1041610217000667
University Health Network (UHN). (2017). Health & wellness mobile apps. Retrieved from
291
http://www.uhn.ca/PatientsFamilies/Health_Information/Patient_Family_Education/Libra
ries/Documents/Libraries_Mobile_Health_List.pdf
Vaismoradi, M., Turunen, H., & Bondas, T. (2013). Content analysis and thematic analysis:
Implications for conducting a qualitative descriptive study. Nursing and Health Sciences,
Vandepitte, S., Putman, K., Van Den Noortgate, N., Verhaeghe, S., Mormont, E., Van Wilder,
L., De Smedt., D., & Annemans, L. (2018). Factors associated with the caregivers’ desire
Van der Roest, H. G., Meiland, F. J., Comijs, H. C., Derksen, E., Jansen, A. P., Van Hout, H. P.,
Jonker, C., & Dröes, R. M. (2009). What do community-dwelling people with dementia
need? A survey of those who are known to care and welfare services. International
Van Mierlo, L. D., Meiland, F. J. M., Van der Roest, H. G., & Droes, R. M. (2011). Personalised
of people with dementia. International Journal of Geriatric Psychiatry, 27, 1-14. doi:
10.1002/gps.2694
Varshney, S., Varshney, J., Varshney, U., & Varshney, S. (2016). AlzhaTV: A smart phone app
for managing depression, anxiety, and agitation in nursing home dementia patients. The
Venkatesh, V., Morris, M. G., Davis, G. B., & Davis, F. D. (2003). User acceptance of
Vernooij-Dassen, M. J. F. J. (2007). Meaningful activities for people with dementia. Aging &
292
Mental Health, 11(4), 359-360.
Virzi, R.A. (1992). Redefining the test phase of usability evaluation: How many subjects is
Wang, J., Yao, N., Shen, M., Zhang, X., Wang, Y., Liu, Y., Geng, Z., & Yuan, C. (2016).
Wang, Y. N., Shyu, Y. I. L., Chen, M. C., & Yang, P. S. (2011). Reconciling work and family
caregiving among adult‐child family caregivers of older people with dementia: Effects on
role strain and depressive symptoms. Journal of Advanced Nursing, 67(4), 829-840.
Ward, G., Walker-Clarke, A., & Holliday, N. (2017). Evaluation of a web-based app to assist
Ward-Griffin, C. (2012). Supportive care to family caregivers is not supportive enough: Moving
Ward-Griffin, C., Hall, J., DeForge, R., St-Amant, O., McWilliam, C., Oudshoorn, A., Forbes,
D., & Klosek, M. (2012). Dementia home care resources: How are we
Warner, E., Johnson, L., & Andrews, F. (2016). Exploring the suburban ideal: Residents’
Washington, K. T., Meadows, S. E., Elliot, S. G., & Koopman, R. J. (2011). Information needs
293
of informal caregivers of older adults with chronic health conditions. Patient Education
Whicher, D. M., Miller, J. E., Dunham, K. M., & Joffe, S. (2015). Gatekeepers for pragmatic
Whitebird, R. R., Kreitzer, M. J., Lewis, B. A., Hanson, L. R., Crain, L., Enstad, C. J., & Mehta,
10.1016/j.cct.2011.05.002
Wiersma, E. C. (2011). Using photovoice with people with early-stage Alzheimer’s disease: A
Willis, D. G., Sullivan-Bolyai, S., Knafl, K., & Zichi-Cohen, M. (2016). Distinguishing features
10.1177/0193945916645499
Wong, S. S., George, T. J., Godfrey, M., Le, J., & Pereira, D. B. (2019). Using photography to
explore psychological distress in patients with pancreatic cancer and their caregivers: A
World Health Organization (WHO). (2011). mHealth: New horizons for health through mobile
World Health Organization (WHO). (2017, May 29). World Health Assembly endorses global
http://www.who.int/mental_health/neurology/dementia/en/
294
Xu, W., & Liu, Y. (2015). mHealthApps: A repository and database of mobile health apps. JMIR
Yap, L. K. P., Seow, C. C. D., Henderson, L. M., & Goh, Y. N. J. (2005). Family caregivers and
10.1017/S0959259806001900
Yasuda, K., Kuwahara, N., Kuwabara, K., Morimoto, K., & Tetsutani, N. (2013). Daily
https://www.youngdementiauk.org/helpful-technology
Yu, S. F. D., Cheng, S. T., & Wang, J. (2018). Unravelling positive aspects of caregiving in
Zachos, K., Maiden, N., Pitts, K., Jones, S., Turner, I., Rose, M., Pudney, K., & MacManus, J.
(2013, June 17-20). A software app to support creativity in dementia care. Paper
presented at the 9th ACM Conference on Creativity & Cognition, Australia. doi:
10.1145/2466627.2466637
Zapata, B. C., Fernandez-Aleman, J. L., Idri, A., & Toval, A. (2015). Empirical students on
Zelinski, E. M., Zak, D. K., & Grossman, M. (2017). Mobile apps for caregivers generally
address some but not all forms of evidence-based support. Alzheimer's & Dementia: The
295
Zhao, Y., Feng, H., Hu, M., Hu, H., Li, H., Ning, H., Chen, H., Liao, L., & Peng, L. (2019).
10.2196/13415
Zorluoglu, G., Kamasak, M. E., Tavacioglu, L., & Ozanar, P. O. (2015). A mobile application
296