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Goal Setting for Cognitive Rehabilitation in Mild to Moderate Parkinson’s

Disease Dementia and Dementia with Lewy Bodies

Article in Parkinson's Disease · June 2016

DOI: 10.1155/2016/8285041

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Hindawi Publishing Corporation
Parkinson’s Disease
Volume 2016, Article ID 8285041, 8 pages
http://dx.doi.org/10.1155/2016/8285041

Research Article
Goal Setting for Cognitive Rehabilitation in Mild to Moderate
Parkinson’s Disease Dementia and Dementia with Lewy Bodies

Tamlyn J. Watermeyer,1 John V. Hindle,2,3 Julie Roberts,4 Catherine L. Lawrence,1

Anthony Martyr,5,6 Huw Lloyd-Williams,7 Andrew Brand,8 Petra Gutting,9 Zoe Hoare,8
Rhiannon Tudor Edwards,7 and Linda Clare5,6
1
School of Psychology, Bangor University, Bangor LL57 2AS, UK
2
Department of Care for the Elderly, Betsi Cadwaladr University Health Board, Llandudno LL30 1LB, UK
3
The College of Health & Behavioural Sciences, Bangor University, Bangor LL57 2UW, UK
4
Division of Mental Health and Learning Disabilities, Betsi Cadwaladr University Health Board, Ysbyty Gwynedd,
Bangor LL57 2PW, UK
5
Centre for Research in Ageing and Cognitive Health (REACH), School of Psychology, University of Exeter, Exeter EX4 4QG, UK
6
PenCLAHRC, Institute of Health Research, University of Exeter Medical School, Exeter EX1 2LU, UK
7
Centre for Health Economics and Medicines Evaluation (CHEME), Bangor University, Normal Site, Bangor LL57 2PZ, UK
8
The North Wales Organisation for Randomised Trials in Health (NWORTH), Bangor University, Gwynedd, Bangor LL57 2PZ, UK
9
Cefni Hospital, Llangefni, Anglesey LL77 7PP, UK

Correspondence should be addressed to Tamlyn J. Watermeyer; [email protected]

Received 31 March 2016; Accepted 1 June 2016

Academic Editor: Tien K. Khoo

Copyright © 2016 Tamlyn J. Watermeyer et al. This is an open access article distributed under the Creative Commons Attribution
License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly
cited.

Alongside the physical symptoms associated with Parkinson’s disease dementia and dementia with Lewy bodies, health services
must also address the cognitive impairments that accompany these conditions. There is growing interest in the use of
nonpharmacological approaches to managing the consequences of cognitive disorder. Cognitive rehabilitation is a goal-orientated
behavioural intervention which aims to enhance functional independence through the use of strategies specific to the individual’s
needs and abilities. Fundamental to this therapy is a person’s capacity to set goals for rehabilitation. To date, no studies have assessed
goal setting in early-stage Parkinson’s disease dementia or dementia with Lewy bodies. Semistructured interviews were carried out
with 29 participants from an ongoing trial of cognitive rehabilitation for people with these conditions. Here, we examined the
goal statements provided by these participants using qualitative content analysis, exploring the types and nature of the goals set.
Participants’ goals reflected their motivations to learn new skills or improve performance in areas such as technology-use, self-
management and orientation, medication management, and social and leisure activities. These results suggest that goal setting is
achievable for these participants, provide insight into the everyday cognitive difficulties that they experience, and highlight possible
domains as targets for intervention. The trial is registered with ISRCTN16584442 (DOI 10.1186/ISRCTN16584442 13/04/2015).

1. Introduction symptoms. These two syndromes share an almost indistin-

guishable neuropsychological profile, characterised by atten-
At least 80% of people diagnosed with Parkinson’s disease tional and executive deficits alongside visuospatial and mem-
(PD) for more than 20 years develop dementia [1, 2]. The clin- ory impairments [5, 6]. Other neuropsychiatric symptoms,
icopathological profile of this PD dementia (PDD) is similar such as hallucinations, depression, anxiety and apathy, may
to that of dementia with Lewy bodies (DLB [3, 4]), a condi- also emerge in these conditions [7]. Awareness of cogni-
tion whereby cognitive dysfunction antedates parkinsonism tive problems has received little research attention in both
2 Parkinson’s Disease

disorders. Nonetheless, some studies have indicated that peo- The CORD-PD pilot trial will aim to assess the application of
ple with PD may overestimate their perceived performance CR in the context of physical disability in these conditions.
on cognitive tasks and for measures of daily living activities, Fundamental to the CR procedure is successful goal
when compared with informant ratings [8–11]. The negative setting. This process involves an individual’s capacity to
impacts of neuropsychiatric symptoms on the wellbeing of identify areas of difficulty and devise goals for improvement,
people with these dementias and their caregivers, as well as as well as rate and monitor performance and/or satisfaction
on the broader community, have been noted [12–18]. Health with performance in relation to each selected goal. It is not
services are required to support the functional independence yet known whether people with PDD and DLB can engage
of people with PDD and DLB through monitoring and in effective goal setting for these purposes. Here, we explore
managing their cognitive and behavioural changes in the the ability of people with mild to moderate PDD and DLB to
context of increasing physical deterioration. Pharmacological set goals for CR. We will examine what types of goals people
treatments for cognitive symptoms are available and include with PDD and DLB set and deem as important, as well as the
cholinesterase inhibitors (e.g., rivastigmine) and glutamate nature and themes of their goal statements. A comparison of
receptor antagonists (e.g., memantine). These drugs, how- goal performance ratings from the perspectives of PDD and
ever, have been associated with adverse side-effects, such as DLB participants and their caregivers will also be conducted.
increased tremor [19]. Furthermore, their use does not always
correspond to improvements in functional independence or
caregiver burden [20].
2. Methods
Nonpharmacological strategies may offer an alternative 2.1. Participants. Participants were recruited from Movement
approach to the management of neuropsychiatric symptoms Disorder Clinics and Memory Services within the Betsi
in these conditions. Recent efforts to assess the efficacy and Cadwaladr University Health Board (BCUHB), North Wales,
feasibility of physical and psychological interventions (e.g., UK. Caregivers were invited to participate with the PDD
cognitive training, physical exercise, and participation in or DLB participant’s permission. Patient participants had
leisure or social activities) on neuropsychological and disease a diagnosis of PD, PDD, or DLB according to consensus
outcomes in people with PD without dementia have shown criteria, an Addenbrooke’s Cognitive Evaluation-III (ACE-
positive, albeit, limited results (for review, see [21, 22]). To III, [26]) score of ≤82, and presented with early- to midstage
date, no intervention studies have included people with PDD dementia according to their clinician. Exclusion criteria
or DLB and thus the generalisability of these findings to included a diagnosis of any other significant neurological
these patient populations is restricted. In response to this gap, condition; major psychiatric disorder, including depression,
a pilot trial, entitled “Cognitive Rehabilitation for Parkin- which is not related to their Parkinson’s disease; and unstable
son’s disease dementia: a pilot randomised controlled trial medication use for their physical or cognitive symptoms.
(CORD-PD),” assessing the application and potential efficacy
of cognitive rehabilitation (CR) for people with mild to mod-
erate PDD and DLB, is currently underway [23]. This ran- 2.2. Design. Participants were recruited to an ongoing single-
domised controlled trial (RCT) will compare CR against an blind pilot trial which aims to assess the feasibility and
active control condition (relaxation therapy, RT) and treat- efficacy of CR for people with PDD and DLB. This trial,
ment as usual (TAU), using participants’ ratings of, and CORD-PD, compares CR with TAU and an active control
satisfaction with, performance in relation to goals identified condition, RT. For further information regarding CORD-
through an interview conducted by the researcher with the PD, please see the study protocol [23]. At the baseline visits,
person with PDD or DLB and, if available, a primary care- participants identified up to three rehabilitation goals and
giver. The objective of CR is to promote independence in the rated their performance and satisfaction with these goals,
person with early-stage dementia by developing and support- using the Bangor Goal Setting Interview (BGSI, [27]). Here,
ing the use of strategies to circumvent the effects of cognitive we explore the nature and types of goals identified by
difficulties. It uses an individualised approach whereby per- participants recruited so far to the study, in order to indicate
sonally relevant goals are devised and implemented according the extent to which people with PDD and DLB are able to
to the individual’s needs and abilities. The intervention is generate goals as well as what kind of goals they perceive as
delivered by a trained therapist who adopts evidence-based personally relevant and meaningful. We compare PDD and
methods and strategies appropriate to the nature of the cog- DLB participants’ ratings to their caregivers’ ratings for per-
nitive goal set. These methods might include compensatory ceived goal performance from the baseline visits (i.e., prior to
strategies (such as calendars, diaries, or reminders) and/or randomisation). Ethical approval for the study was obtained
restorative approaches (such as mnemonics and spaced from the Wales Research Ethics Committee 5 (13/WA/0340).
retrieval) to retain learned information and improve memory Consent procedures were conducted in accordance with the
recall. The efficacy of CR, compared with RT and TAU, for Declaration of Helsinki [28]; informed written consent was
people with early-stage Alzheimer’s disease (AD) has been obtained from all participants prior to entry into the trial.
demonstrated in a single-centre RCT [24]. A large multicentre
trial assessing the clinical- and cost-effectiveness of CR as an 2.3. Measures. Only measures pertinent to the current analy-
intervention for people with AD, vascular, or mixed dementia ses will be described. For a list and description of measures
is underway. This research is not recruiting people with PDD used in CORD-PD, please refer to the study protocol [23].
or DLB due, in part, to their distinct motor symptoms [25]. The BGSI [27] was used to identify and rate performance and
Parkinson’s Disease 3

satisfaction with goals set prior to randomisation (see Sec- Table 1: Mean performance on ACE-III domain scores.
tion 2.4). Severity of Parkinsonian symptoms was measured
using the modified Hoehn and Yahr staging criteria [29]. ACE-III domain Patients with PDD and DLB
(max score) M SD Min–max 𝑁
Items from the Unified Parkinson’s Disease Rating Scale-part
three (UPDRS, [30]) were used to assess physical functioning, Total (100) 71.4 7.6 48–81 29
with higher scores indicating greater physical impairment (a Attention (18) 14.5 2.4 7–18 29
maximum score of 92 was created from these item scores). Memory (26) 14.7 3.4 9–21 29
The Hospital Anxiety and Depression Scale (HADS, [31])
Fluency (14) 7.7 2.9 0–11 29
assessed levels of anxiety and depression in the PDD and DLB
participants and their caregivers (where available). Scores Language (26) 22.6 2.1 18–26 29
≥ 11 on either subscale qualify for clinical levels of anxiety Visuospatial (16) 11.8 1.2 8–15 29
and depression symptoms [32]. Demographic information
for participants with PDD or DLB and their caregivers was
recorded at the baseline visits and includes age, sex, number the types of goals or areas in which goals were set, and a
of years of formal education, and marital status. IBM SPSS “motivation” category, covering the motivations expressed by
(version 22.0) was used to summarise these data [33]. participants within the goal statement as a reason for selecting
the goal. The data set was independently reviewed by a second
2.4. Procedures. The BGSI was administered to all partici- researcher not associated with the current study but working
pants at the initial interviews prior to randomisation to the on a separate CR trial [36]. The researchers consulted on
treatment groups. Specific goals were identified and selected the definitions of the final categories and subcategories until
through collaboration between the researcher, the person consensus was reached. A subsample of the data set (𝑛 =
with PDD or DLB, and their caregiver (where available) over 23, 30.3%) was coded by the second researcher using the
the course of these visits. At this point in time, prior to agreed framework. We used the Multiple Value Nominal
randomisation, the participants did not know if they would Alpha (version 1.0) software programme [37] to compute
be allocated to the CR condition or the control conditions. Krippendorff ’s alpha coefficient of reliability [38]. The results
The researcher remains blinded to participants’ treatment of the interrater analysis showed excellent reliability (Krip-
allocations throughout their participation in the trial. At pendorff ’s alpha is 0.95), with percentage agreement being
these visits, the researcher discusses the purpose of the CR 95.7%. Where interrater discrepancies were found, these were
intervention and asks participants to consider how they discussed by the researchers and a consensus was reached.
believe their cognitive difficulties affect their performance of
everyday tasks, their enjoyment of activities and pastimes, 3. Results
and/or their participation in social activities. From these
discussions, difficulties that the participant deems the most 3.1. Participant Characteristics. Twenty-nine participants
important and feels the most motivated to overcome are with PDD and DLB were recruited (25 PDD, 4 DLB). Median
selected as the basis for possible goals. A minimum of two and disease duration (time in years since diagnosis) for these
a maximum of three goals are developed. Goals are further participants was 4 years (1–21 years). The mean age for
refined with help from the researcher and caregiver (if avail- participants was 75.9 (SD = 6.7). The mean UPDRS score for
able) to produce a goal statement. Goal statements are spec- participants was 30.3 (SD = 9.1). Participants were classified
ified according to SMART principles; they are specific, mea- into the following Hoehn and Yahr stages: Stage 1 (𝑛 = 4,
surable, achievable, realistic, and timed [34]. For this study, 13.8%); Stage 1.5 (𝑛 = 2, 6.9%); Stage 2 (𝑛 = 6, 20.7%); Stage
if the participant stated a reason (i.e., a motivation) within 2.5 (𝑛 = 3, 10.3%); Stage 3 (𝑛 = 11, 37.9%); Stage 4 (𝑛 = 3,
the goal statement for why the goal was selected (e.g., “so my 10.3%). Six (21%) participants were female, in keeping with
wife does not have to remind me”), this was included. Once reports suggesting higher incidence rates of parkinsonism
the goal statement is agreed, the individual with PDD or DLB and PD in men [39]. The mean number of years of formal
rates their current performance and satisfaction with their education for participants was 11.1 (SD = 1.7). Participants
performance for these goals on a scale of 1–10, with 1 being had a mean ACE-III score of 71.4 (SD = 7.6). Participants’
unable to carry out or perform task/extremely dissatisfied mean performance on individual ACE-III domain scores
with performance and 10 being able to carry out or perform are shown in Table 1. Participants had mean HADS mood
task without difficulty/extremely satisfied with performance. scores for symptoms of anxiety and depression of 7.6 (SD =
The caregiver, where available, also rates the PDD or DLB 4.1) and 7.0 (SD = 3.7), respectively. Six (20.7%) and three
participant’s current goal performance using the same scale. (10.3%) participants qualified for clinical levels of anxiety and
depression, respectively, according to the criteria.
2.5. Qualitative Analysis. The goals generated by participants Twenty-six caregivers were recruited. The mean age for
constituted the data set, to which a qualitative content analy- caregiver participants was 69.6 (SD = 10.6). Twenty-one
sis was applied [35]. Following the researcher’s familiarisation (80.8%) of the caregiver participants were female. The major-
with the data set through reading and rereading the data ity of caregivers were spouses or partners of the person with
items (goals generated by participants), the data were coded PDD or DLB (𝑛 = 22, 84.6%), while the remaining caregivers
for semantic content which organised the data items into were adult children of the person with PDD or DLB. Care-
two overarching categories: a “content” category, covering givers’ mean HADS mood scores for symptoms of anxiety and
4 Parkinson’s Disease

Table 2: Mean ratings for PDD and DLB participants’ goal performance and satisfaction.

Caregiver ratings for PDD and

PDD and DLB performance ratings PDD and DLB satisfaction ratings
Goal DLB participants’ performance
M SD Min–max 𝑁 M SD Min–max 𝑁 M SD Min–max 𝑁
1 3.1 1.9 1–6 29 3.3 1.9 1–7 29 2.2 1.3 1–5 24
2 3.2 1.6 1–5 29 3.3 1.7 1–7 29 2.6 1.4 1–5 24
3 2.8 1.5 1–5 18 3.3 2.0 1–8 17 2.3 1.9 1–7 15

Table 3: Categories of goal statements.

“Content” category Definition Count

Technology Learn or relearn how to use a technological device or software 34
Activities or pastimes maintenance Start or maintain an activity or pastime 19
Medication management Develop a medication schedule or remember to take medication on time or at correct dosage 10
Orientate self in time or place; plan his/her schedule; record information/events of the day; 10
Self-management and orientation
organise daily functional activities or environment
Remember where he/she placed important items or remember to take important items with 2
Important items
him/her to events
Social interaction and Remember names of people and be able to maintain a conversation (e.g., address word 6
communication finding and concentration difficulties)
Anxiety management Learn strategies to manage anxiety or panic attacks 2
“Motivation” category Definition Count
Relationships Motivated to maintain family and social relationships 7
Knowledge pursuit Motivated to acquire knowledge about current affairs or research personal topics of interest 6
Family benefit Motivated to reduce burden for family or because it is important to family 7

depression were 4.8 (SD = 2.8) and 3.8 (SD = 2.4), respectively. these subcategories were endorsed by participants. The next
Only one caregiver showed clinical levels of anxiety according sections delineate these categories and subcategories with
to the criteria. examples of participants’ goal statements.

3.2. Perceived Goal Performance and Satisfaction with Goal 3.3.1. Content Category
Performance. Table 2 shows PDD and DLB participants’
and caregivers’ mean ratings for goal performance on the (1) Technology. Most of the goal statements surrounded
separate goals. Two caregivers refused to rate their partner’s themes of technology-use, such as learning or relearning how
performance on goal 1 and goal 2, respectively, because to use personal computers, tablets, or mobile phones:
they were not aware until the interview that their partner
“I will be able to use email.”
experienced difficulties with these tasks (these goals related
to reading and word-finding difficulties). Table 2 also shows “Use the word processor on my computer to write short
PDD and DLB participants’ mean ratings for satisfaction with documents.”
performance. Mean ratings were in the low range of the 1–10 “I will be able to use a mobile phone to send and receive
performance scale which are appropriate for baseline ratings text messages.”
before the introduction of an intervention and indicative
of good interviewing practice by the researcher. A paired (2) Leisure Pursuit and Maintenance. Another common
sample 𝑡-test revealed that PDD and DLB participants’ mean theme was maintaining existing or starting new activities or
ratings for perceived goal performance (M = 3.1, SD = 1.6) pastimes:
were significantly higher than the caregivers’ mean ratings for
PDD and DLB participants’ performance (M = 2.4, SD = 1.5) “I will be able to read for half an hour in a day and
[𝑡(65) = 4.6, 𝑝 < 0.001, 𝑑 = 0.5]. remember what I read.”
“I will be able to prepare a simple pasta dish.”
3.3. Qualitative Analysis. The 29 PDD and DLB participants
identified 76 goals in total, with 18 participants generating “I will create a portfolio of twenty-five photos.”
three goals each and 11 participants generating two goals
each. Table 3 shows the final categories and subcategories (3) Medication Management. Several participants spoke of
identified from the data set and the frequency with which difficulties with managing their medication on their own and
Parkinson’s Disease 5

were motivated to devise or refine their existing medication “I would like to learn how to use my mobile phone so
schedules in accordance with prescribed times and dosages: that I can call family members for either social reasons
or emergencies.”
“Devise a medication schedule to remember to take my
medication on time.” “I will use Skype on the computer to be able call a friend
or family member.”
“Refine medication system so that I will be able to take
medication on time at the right dosage when at home One participant indicated he was motivated to dedicate
and during the day.” more time to his reading in order to benefit his social
interactions, since his wife complained that he no longer
contributes to conversations:
(4) Self-Management and Orientation. Some participants
indicated an eagerness to manage their own time and daily “I will dedicate one hour per day to read about my topic
activities or to orientate themselves in time or place: of interest (space travel) so that I can have conversations
with people about it.”
“Within two months, I would like to devise a person-
alised system to keep track of diary appointments and
activities of the care home.” (2) Knowledge Pursuit. Several participants wished to acquire
“I will learn to navigate different rooms of my house skills in novel technology in order to pursue knowledge or
without getting lost.” special interests:

“Know the date and keep track of time (morning, mid- “I will be able to use the laptop to access the internet to
day, evening) during the day.” read news articles.”
“I will learn how to use the internet to research bowling
(5) Important Items. Some participants expressed frustration techniques.”
at misplacing everyday items and wanted to use strategies to “I want to be able to find information (general knowl-
retrieve these: edge, current affairs) online using my desktop and iPad,
within two months.”
“I will remember where I placed my personal items,
such as my wallet and glasses.”
(3) Family Benefit. Some goal statements indicated a desire to
benefit family members or relieve them of care duties:
(6) Social Interaction and Communication. A few partici-
pants expressed social embarrassment at forgetting people’s “I will remember to record the events of the day (such
names and losing their train of thought or “words” when as visits or appointments) to keep track of daily events
in conversation with people. Three participants noted their so that my daughter is informed.”
word retrieval issues and wanted to understand and overcome “I will select and retrieve items of clothing to wear for
these: the next day rather than rely on my wife.”
“Identify the reason for my word-finding difficulties and “I will refine my medication system so that I can take
learn strategies to circumvent these failures.” my pills on time without being prompted by my wife.”
“I will remember approximately half of the names of my
team-members in my bowls club.” 4. Discussion
“I will learn strategies to assist with retrieving the
The findings presented here indicate that goal setting for CR is
correct word in conversations with people.”
achievable for people with PDD and DLB. They also highlight
participants’ motivation to acquire skills in technology, start
(7) Anxiety Management. Two participants were strongly or maintain pastimes, and manage their own time and daily
concerned about the anxiety attacks they were experiencing activities despite their cognitive difficulties. Difficulty in com-
and wanted to learn strategies to help them cope with these plying with medication regimes was another main category
episodes. One participant experienced separation anxiety that emerged from the analysis and poses particular clinical
when away from her husband and wanted to remind herself implications for these patient groups. On average, people with
to use distraction tactics during these separations: PDD and DLB rated their current performance for person-
alised goals in the low range, indicating their awareness of dif-
“I will be able to develop and use strategies to overcome ficulties with these tasks. Nonetheless, relative to informant
or cope with my anxiety attacks.” ratings, people with PDD or DLB rated their performance as
significantly better for most of the goals prior to the start of
3.3.2. Motivation Category the intervention phase.
To our knowledge, this is the first study to assess goal
(1) Relationships. Participants often expressed a desire to use setting for CR in PDD and DLB. Earlier research has exam-
technology to maintain family and social relationships: ined goal setting in 26 people with PD without dementia [40].
6 Parkinson’s Disease

This study classified participants’ goals under domains of relative to informant-reports, suggesting that while they show
executive function in preparation for an intervention which awareness of the presence of their cognitive difficulties they
comprised strategic executive training. The study reported might underestimate the severity of these impairments or
that the top three domains in which PD participants set goals their impact on daily life. Impaired awareness in people with
were for “regulation” (goals relating to monitoring and the PD for cognitive performance has been suggested previously
execution of tasks), “planning” (goals relating to processes [8, 10, 11], but this remains a neglected area of research within
preceding the execution of a task), and “initiative” (goals that the condition. It is possible that these findings might be
apply to motivating oneself to start activities or encourage a explained by caregivers’ underestimation of their partners’
positive change in activity level). Moreover, relative to partic- abilities due to psychological responses or biases. As a group,
ipants with acquired brain injury, PD participants set signifi- the caregivers in our sample did not show clinical levels of
cantly more goals associated with “time management,” which anxiety or depression, but other factors, such as their part-
they defined as goals relating to deficits in estimating time. ner’s cognition, neuropsychiatric symptoms and/or disease
Our findings somewhat align with the results of this work. severity, perceived burden, time commitment or relationship
In particular, participants in our sample showed an eagerness quality with the person with PDD or DLB, might have
to orientate themselves in time as well as plan and organise influenced their appraisals. Such factors have been suggested
their leisure and clinical appointments themselves, through to influence informant-reports of performance for people
the use of diaries and calendars. Designing or improving their with AD [42–46].
medication scheduling, as well as increasing their indepen- This study is not without its limitations. Our sample
dence with this task, would require them to adopt strategies size is small which might compromise the representativeness
(e.g., devising a checklist and using an alarm system) to of our participant groups and the generalisability of these
assist with planning and self-monitoring. The selection of findings to the wider PDD, DLB, and respective caregiver
such goals by our participants may underlie impairments in populations. Similarly, the PDD and DLB participants were
these processes leading to cognitive difficulties, particularly not severely cognitively or physically disabled which might
for the prospective aspects of memory. Suboptimal medica- have influenced the nature or types of goals selected. Given
tion adherence in people with PD has been highlighted by the restricted sample size, it is difficult to determine whether
systematic research [41] which suggested that several factors, specific impairments in cognitive functions (e.g., attention or
such as mood disorder, cognition, and scheduling complexity memory as measured by the ACE-III) influenced goal setting
(e.g., polypharmacy), contributed to lack of compliance. Our or selection. Moreover, other factors such as predominant
participants identified their cognitive difficulties as the main physical symptoms (e.g., tremor, postural imbalance, and
source of their nonadherence. This finding has important bradykinesia), levels of apathy, and/or personality variables,
implications for practitioners assisting people with PD expe- which were not assessed here, might have also influenced
riencing cognitive difficulties and suggests that they may
this process. Understanding the impact of such factors on
require more routine monitoring by clinical staff.
goal setting in these patient groups, and others, should be
Many participants indicated a desire to maintain or
explored in larger future studies. The goal setting inter-
improve their leisure activity levels, possibly in response to
a self-acknowledged apathy in relation to their usual interests view constituted a semistructured approach with discussions
or a deterioration in their abilities. The desire to learn new directed around participants’ everyday functioning, social
skills, particularly in the area of novel technologies, was most interaction and leisure activities; this might have excluded
commonly reported. These skills were often selected for the other areas important to participants. Some participants prof-
purpose of wanting to research current affairs and knowledge fered their motivations for selecting particular goals within
or remain in contact with family members through social the goal statement, while others did not. Therefore, some
media. A challenge in selecting these goals during the motivations behind participants’ goal setting might have been
interview phase was that some activities required a physical omitted or implied but not coded within the current analysis.
output (such as bowls, cooking, or typing while using a Participation of the caregiver in the goal setting session,
computer) and both cognitive and physical impairments while benefitting these discussions, may have also influenced
contributed to reduced functioning in these areas. It was thus participants’ expressed priorities for rehabilitation.
important to manage participants’ expectations regarding
possible outcomes of the proposed therapy and emphasise
support for their cognitive difficulties with these tasks. People 5. Conclusions
with early PDD and DLB showed an awareness of the impact
of their cognitive difficulties on their social outcomes and Despite several limitations, this study demonstrates that
relationships, with some participants electing to focus on people with early-stage PDD and DLB can generate suitable
strategies to help them remember peoples’ names or circum- goals for rehabilitation. It describes the everyday cognitive
vent word retrieval difficulties when in conversation. Further, difficulties that these individuals experience and highlights
some participants showed a desire to improve performance areas of difficulty for targeted intervention. The next steps in
on certain tasks in order to diffuse burden or responsibility the ongoing trial will be to explore whether implementation
of care for their relatives. of the CR intervention is feasible for these patient groups
Interestingly, participants with PDD and DLB rated their and whether it shows efficacy in producing improvements for
goal performance in the low range, but as significantly better ratings of performance and satisfaction with cognitive goals.
Parkinson’s Disease 7

Competing Interests International Neuropsychological Society, vol. 19, no. 5, pp. 559–
570, 2013.
The authors declare that there are no competing interests in [12] B. Goldsworthy and S. Knowles, “Caregiving for Parkinson’s
their submitted paper. disease patients: an exploration of a stress-appraisal model for
quality of life and burden,” Journals of Gerontology—Series B
Acknowledgments Psychological Sciences and Social Sciences, vol. 63, no. 6, pp.
P372–P376, 2008.
This work is supported by Health and Care Research Wales [13] D. Aarsland, J. P. Larsen, K. Karlsen, N. G. Lim, and E. Tandberg,
(formerly the National Institute for Health & Social Care “Mental symptoms in Parkinson’s disease are important con-
Research) Grant no. RFPPB-2042-1020. The authors wish to tributors to caregiver distress,” International Journal of Geriatric
thank Dr. Pam Martin-Forbes, Aaron Pritchard, Tori Garvey, Psychiatry, vol. 14, no. 10, pp. 866–874, 1999.
Claire Watkins, and the staff based at BCUHB clinics for their [14] F. Stella, C. E. M. Banzato, E. M. A. B. Quagliato, M. A. Viana,
ongoing assistance with participant screening and recruit- and G. Christofoletti, “Psychopathological features in patients
ment. The authors also thank Professor Kris Krippendorff for with Parkinson’s disease and related caregivers’ burden,” Inter-
national Journal of Geriatric Psychiatry, vol. 24, no. 10, pp. 1158–
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