Studentthesis-Anna Janssen 2013

This electronic thesis or dissertation has been
downloaded from the Kings Research Portal at

https://kclpure.kcl.ac.uk/portal/
Patient and spouse perceptions of cognitive and neuropsychiatric symptoms in

Parkinsons Disease
Implications for distress, quality of life and relationship satisfaction
Janssen, Anna Lee
Awarding institution:
King's College London
The copyright of this thesis rests with the author and no quotation from it or information derived from it
may be published without proper acknowledgement.
END USER LICENCE AGREEMENT
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0

International licence. https://creativecommons.org/licenses/by-nc-nd/4.0/
You are free to:

Share: to copy, distribute and transmit the work
Under the following conditions:

Attribution: You must attribute the work in the manner specified by the author (but not in any
way that suggests that they endorse you or your use of the work).
Non Commercial: You may not use this work for commercial purposes.
No Derivative Works - You may not alter, transform, or build upon this work.
Any of these conditions can be waived if you receive permission from the author. Your fair dealings and
other rights are in no way affected by the above.
Take down policy
If you believe that this document breaches copyright please contact librarypure@kcl.ac.uk providing
details, and we will remove access to the work immediately and investigate your claim.
Download date: 06. Mar. 2017

This electronic theses or dissertation has been
downloaded from the Kings Research Portal at
https://kclpure.kcl.ac.uk/portal/
Title:Patient and spouse perceptions of cognitive and neuropsychiatric symptoms in

Parkinsons Disease
Implications for distress, quality of life and relationship satisfaction
Author:Anna Janssen
The copyright of this thesis rests with the author and no quotation from it or information
derived from it may be published without proper acknowledgement.
END USER LICENSE AGREEMENT
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0

Unported License. http://creativecommons.org/licenses/by-nc-nd/3.0/
You are free to:

Share: to copy, distribute and transmit the work
Under the following conditions:

Attribution: You must attribute the work in the manner specified by the author (but not in
any way that suggests that they endorse you or your use of the work).
Non Commercial: You may not use this work for commercial purposes.
No Derivative Works - You may not alter, transform, or build upon this work.
Any of these conditions can be waived if you receive permission from the author. Your fair dealings
and other rights are in no way affected by the above.
Take down policy
If you believe that this document breaches copyright please contact librarypure@kcl.ac.uk
providing details, and we will remove access to the work immediately and investigate your claim.
PART I
Main Research Project
and
Service Evaluation Project
Dr Anna Janssen
June 2013
Submitted for the partial fulfilment of the
Doctorate in Clinical Psychology
Institute of Psychiatry,
Kings College London
1
Summary of Contents
Main Research Patient and spouse perceptions of cognitive

Project
and neuropsychiatric symptoms in
Parkinsons Disease:
Implications for distress, quality of life and
relationship satisfaction
3
Supervisors: Dr Lidia Yaguez
Professor Richard Brown
Service Evaluation The Care Plan Approach at

Project Snowsfields Adolescent Unit:
The Experiences and Views of Young People 188
Supervisor: Dr Rachel Zwi
2
Patient and spouse perceptions of
cognitive and neuropsychiatric symptoms
in Parkinsons Disease:
Implications for distress, quality of life and
Dr Anna Janssen
Supervised by
Dr Lidia Yaguez
and
Professor Richard Brown
3
Acknowledgements
I wish to thank the participants who made this research possible. They confirmed
the clinical relevance of this study in giving their time generously to informing
improvements in care for people living with PD.
I thank Parkinsons UK for assisting me in recruitment of participants.
I thank my supervisors. Professor Richard Browns considerable expertise and

experience in Parkinsons Disease-related research have been invaluable in this
research. I appreciate Dr Lidia Yaguezs time and attention to detail.
I value the support and understanding of my friends and colleagues who recognised
the value of the work I have done and supported me with their understanding and
encouragement.
Special thanks to husband Richard de Fleury for his unfailing support throughout my
clinical training and this research in particular. He supported me in countless ways
not least of which include his belief in the purpose and value of my work, his
expertise in proof reading, and the balance he brings to my life. Thank you Richard
for your invaluable companionship throughout my pursuit and completion of this
work.
4
Table of Contents
Acknowledgements 4
Table of Contents 5
List of Tables 10
List of Figures 11
Abstract 12
1. Introduction 1. 1 Parkinsons Disease (PD): An overview 14
Prevalence 14
Motor symptoms in PD 15
1.2 Non-motor symptoms (NMS) in PD 16
1.3 Cognitive and neuropsychiatric symptoms in PD

16
Prevalence and phenomenology 16
Cognitive symptoms in PD 17
Neuropsychiatric symptoms in PD 19
1.4 Patient wellbeing and HR-QoL 21
1.5 Carer wellbeing and HR-QoL 22
Challenges of caregiving 23
Positive aspects of caregiving 24
1.6 Couples experiences of PD 25
Relationship satisfaction 26
1.7 Subjective illness appraisals in PD 27
Illness appraisals in couples 28
Discordance 28
5
1.9 Aims and objectives of the present study 33
Key question of the study 33
Hypotheses 33
Research question 34
2.1 Design
2. Method 35
2.2 Sample 35
Inclusion criteria 35
Exclusion criteria (for all participants) 35
Power analysis for sample 35
2.3 Recruitment procedure 36
2.4 Screening measures 36
2.5 Assessment procedure 38
Measures for people with PD 39
Measures for carers 43
2.6 Data handling and statistical analysis 44
Data handling and statistics 44
Data protection 44
Treatment of missing data 45
Data cleaning 45
Correction for multiple testing 45
Analyses 46
3. Results 3.1. Differences in patients and carers perceptions of

patients physical, cognitive and neuropsychiatric 48
symptoms
6
3.2 Relationships between patient and carer ratings of
CNPS intensity, HADS distress and relationship 57
satisfaction
3.3.Discordance within couples between carer and

patient perceptions of cognitive and neuropsychiatric 63
symptoms
Research Question 71
4. Discussion 4.1 Overview of the study sample 77
Demography of patients and carers 77
Disability, HR-QoL, distress and relationship

78
satisfaction
Patient cognitive functioning 79
Patient and carer reports of CNPS presence and

79
intensity
4.2 Summary of findings in relation to hypotheses and
80
research question
4.3 Interpretation of results 81
Patient disease characteristics and objective

cognitive functioning 81
Patients and carers ratings of CNPS presence and

81
intensity
Objective and subjective cognitive functioning 82
Patient and carer distress in relation to CNPS 83
Patient and carer relationship satisfaction 84
Reports of CNPS: Discordance within couples 85
Predicting patient and carer HADS distress and

relationship satisfaction 89
4.4 Clinical implications and future directions 89
Health professionals role in assessment 89
Clinical utility of discordance 90
Psychoeducation 91
Symptom-related distress 91
7
Patients experiences 91
Carers experiences 91
Couples experiences 93
4.5 Limitations and strengths of the study 94
Sample characteristics 94
The NPI-E
95
4.6 Strengths of study

95
4.7 Reflections
96
5. References 96
6. Appendices
Appendix 1. Confirmation letter from ethics committee 119
Appendix 2. Study Information on Leaflets Distributed at

121
Parkinsons UK Support Group Meetings
Appendix 3. Study advertisement posted on Parkinsons UK online
122
research forum
Appendix 4. Researcher correspondence on Parkinsons UK online
research forum 123
Appendix 5.
Participant information sheet 124
Appendix 6. Patient eligibility screening questionnaire
129
Appendix 7. Telephone Interview for Cognitive Status - Modified
130
(TICS-M)
Appendix 8a. Instructions to patients and carers for completing pre-
interview questionnaire pack 132
Appendix 8b. Instructions to carers for completing pre-interview

questionnaire pack 133
Appendix 9
Participant consent form 134
Appendix 10. Demographic questionnaire for patients and carers

136
Appendix 11. Pre-interview patient clinical questionnaire
137
Appendix 12a. Parkinsons Activities of Daily Living Scale (PADLS)
138
Patient Version
Appendix 12b. Parkinsons Activities of Daily Living Scale (PADLS)
139
Carer Version
8
Appendix 13. Euro-QoL 5D (EQ-5D) 140
Appendix 14. Neuropsychiatric Interview Extended (NPI-E) 141
Appendix 15 Couples Satisfaction Index (CSI) 178
The Montreal Cognitive Assessment for Parkinsons

Appendix 16. Disease (MoCA) 182
Appendix 17. Caregiver distress scale (CDS) 183
Appendix 18. Data cleaning and transformations 186
9
List of Tables
Table 2.1 Participant demographic characteristics 37
Table 2.2 Participants with PD: Clinical characteristics 38
Table 3.1 Results of the PADLS according to patients and carers 48
Table 3.2 Results of patients neuropsychological assessments 49

Table 3.3 Patients and carers reports of presence and intensity of
patient cognitive and neuropsychiatric 50
symptoms (CNPS)
Table 3.4 Comparisons of patients and carers perceptions of
54
patient CNPS presence and intensity
Table 3.5 Patients and carers ratings of total patient CNPS and
CNPS-related distress 56
Table 3.6 Patient and carer self-rated mood and distress 57
Patient and carer self-rated EQ-5D and relationship

Table 3.7 58
satisfaction
Table 3.8 Carer self-rated distress 60
Coefficients for correlations between patient demographic

Table 3.9
and clinical data and patient HADS distress and 61
Table 3.10 Coefficients of correlations between carer demographic
and clinical variables and carer HADS distress and 62
Frequency of patients and carers confirming the presence
Table 3.11 65
of specific CNPS
Correlations between patient demographic and clinical
Table 3.12 data and intra-couple discordance in total CNPS intensity 68
scores
Correlations between carer demographic and clinical
Table 3.13 variables and intra-couple discordance in total CNPS 70
intensity scores
Correlation coefficients between variables identified as
Table 3.14 72
potential predictors of patient HADS distress
Table 3.15 Model predicting patient HADS distress 73
Correlation coefficients between variables identified as

Table 3.16 74
potential predictors of carer HADS distress
Table 3.17 Model predicting carer HADS distress 75
Table 4.1 Patient and carer variable distribution 186
10
List of Figures
Figure 3.1 Carer self-rated CNPS-related distress 59
Frequency of discordance within couples in reporting of

Figure 3.2 66
CNPS presence
Discordance between patient and carer ratings of CNPS
Figure 3.3 67
intensity
The relationship between patient self-rated CNPS-related
Figure 3.4 distress and discordance between patient and carer 69
ratings of CNPS intensity
11
ABSTRACT
Introduction: People with Parkinsons Disease (PD) experience a range of

cognitive and neuropsychiatric symptoms (CNPS), including depression, fatigue and
anxiety, hallucinations and dementia. Although common, CNPS are less well
understood than motor symptoms. CNPS are rated by patients as among the most
important and challenging features of their illness (Politis et al., 2010) and are
closely associated with health-related quality of life (Gallagher, Lees & Schrag,
2010). Many spouses or partners of a person with PD become informal caregivers.
Despite an increasing awareness of the implications of PD for carers, there is a
paucity of information about the impact of CNPS on carers and on the patient-carer
relationship. This study sought to investigate the nature, extent and impact of CNPS
on the wellbeing of carers and patients as individuals and on their relationship
satisfaction as a couple.
Method: The study was exploratory and cross sectional focussing on a single time-
point in the lives of 31 couples living with PD. Data collection was quantitative and
involved using clinically valid screening tools, a semi-structured interview to assess
the presence and intensity of CNPS and CNPS-related distress and self-report
measures to assess participants mood, HADS distress, health-related quality of life,
and relationship satisfaction.
Results: The study showed that anxiety and depression was low for the majority of
patients and carers, and most participants were satisfied with their relationships.
Although patients and carers had similar levels of HADS distress and relationship
satisfaction, health-related quality of life was poorer for patients than carers. The
majority of participants rated patient physical disability as mild or non-existent. The
most frequently reported CNPS among patients was decline in memory and
attention followed by anxiety and apathy. Among carers, the most frequently
reported CNPS was anxiety followed by depression and decline in memory and
attention.
Within couples, patients and carers agreed on levels of total CNPS intensity across
the 14 CNPS assessed. Patients and carers within couples disagreed, however, in
their views of the presence of specific symptoms. The highest rates of discordance
were found for hallucinations followed by disinhibition, with over two-thirds of
couples disagreeing on the presence of these symptoms. At least half of couples
12
disagreed about the presence of irritability, agitation and aggression, apathy and
delusions. Discordance was not associated with HADS distress or relationship
satisfaction for either group.
Patient HADS distress was positively predicted by patients and carers ratings of
patient CNPS-related distress. Carer HADS distress was positively predicted by
carers CNPS-related distress, caregiving-related distress and health-related quality
of life. Carer relationship satisfaction was best predicted by caregiving-related
distress. No predictors of patient relationship satisfaction were identified.
Discussion: This studys contribution to current understanding of couples

experiences of CNPS and its clinical implications are discussed. Findings highlight
that relying on the patient or proxy only to report CNPS is clinically invalid. The study
demonstrates the importance of accurate assessment of patients and carers
perceptions of CNPS and exploring any differences in these. It emphasises the need
to pay careful attention to patient and carer distress. Given its clinical relevance,
such information about patients and carers experiences of PD-related CNPS must
be actively sought and used when formulating and planning interventions.
13
1. INTRODUCTION
The present study assesses perceptions of cognitive and neuropsychiatric

symptoms (CNPS) among couples living with Parkinsons Disease (PD) and
examines them in relation to patient and carer distress and relationship satisfaction.
CNPS are a subgroup of non-motor symptoms (NMS) in PD relating to how a
person thinks and consequently behaves. The primary research question asks how
do patient CNPS relate to distress and relationship satisfaction in couples with PD?
It is hoped that by improving our understanding of couples experiences of CNPS in
PD the results of this study can inform advances in support provided to couples
living with PD.
This chapter provides an overview of PD, describing motor and non-motor

symptoms in turn. Consistent with the focus of the study, it provides a
comprehensive examination of CNPS including mood change, psychosis, impulse
control disorders and their behavioural manifestations. It summarises evidence
regarding patient and carer subjective distress, health-related quality of life (HR-
QoL) and relationship satisfaction and their perceptions of the nature and severity of
illness. In addition, it considers the prevalence and meaning of differences in
couples illness appraisals. The chapter critiques the relevant literature and
highlights areas requiring greater attention from researchers and clinicians.
1.1 Parkinsons Disease (PD): An Overview

Prevalence
PD is a common, progressive neurodegenerative condition without a known cure.
PD affects up to 0.3% of the general population in industrialised society and over
1% of people over 65 years of age and 2% of people over 80 years of age (de Rijk
et al., 2000). It is slightly more common in males (Baldereschi et al., 2000) and
found across ethnicities (Lai, Schulzer, Marion, Teschke & Tsui, 2003). Research
indicates that there is a lifetime prevalence of 200/100,000 in the UK (MacDonald,
Cockerell, Sander & Shorvon, 2000) an annual incidence of 20 in 100,000 and a
mean post-onset survival of 12.3 years (Rajput, 1992). The majority of cases have
no specific known cause (idiopathic PD), with approximately 15% of people with PD
having a first-degree relative with the condition (Samii, Nutt & Ransom, 2004).
Although young-onset PD can occur between age 21 and 40 (Inzelberg,
Schechtman & Paleacu, 2002), the typical age of onset is 60+ (MacDonald et al.,
14
2000). In a UK-based survey of PD incidence rates in the UK, 20/100,000 of PD
patients were under 50 years of age, 87/100,000 were 60 69 years of age,
322/100,000 were 70 79 years of age, and 116/100,000 were 80+ (MacDonald et
al., 2000). Recent estimates indicate that there are currently approximately 73,000
people living with PD in England (Leigh et al., 2012).
PD was originally described by James Parkinson in 1817 as the shaking palsy with
senses and intellects being uninjured (as cited by Lhle, Storch & Reichmann,
2009). Although motor symptoms are central to diagnosis of the disorder, there is an
increasing recognition of the range of non-motor symptoms (NMS) that commonly
occur in PD. Motor and non-motor symptoms are discussed in turn below.
Motor symptoms in PD
Phenomenology: Tremor, rigidity and bradykinesia are considered the three main
motor symptoms of PD along with postural instability and gait problems. The Hoehn
and Yahr scale is widely used to indicate disease progression (Goetz et al., 2004). It
delineates PD progression into five stages which include Stage 1: symptoms on one
side of the body; Stage 2: symptoms on both sides of the body; Stage 3: balance is
impaired; Stage 4: requires assistance with mobility and other symptoms are severe;
Stage 5: non-ambulatory, wheelchair bound.
Neuropathology and treatment: As PD progresses, nerve cells in the brain are

destroyed, most specifically cells responsible for producing the neurotransmitter
dopamine. PD motor symptoms are primarily manifestations of dopamine depletion.
Although dopaminergic cell loss is part of normal ageing, such changes are more
rapid in PD (Kaasinen & Rinne, 2002).
During the first five to ten years from symptom onset, PD tends to respond well to
dopamine replacement therapy (DRT) medication such as L-dopa or dopamine
agonists (Samii et al., 2004). Most patients develop treatment-related complications
including dyskinesias and motor and cognitive fluctuations within this period,
however (Brooks, 2002; Hely, Morris, Reid & Trafficante, 2005). Deep brain
stimulation (DBS) is a form of treatment typically used in more advanced disease.
15
1.2 Non-motor symptoms (NMS) in PD
NMS that are known to occur in PD relate to three main areas: cognitive symptoms
such as a decline in executive functions and working memory, attention deficit,
confusion and dementia (Caviness et al., 2007; Chaudhuri & Naidu, 2008),
neuropsychiatric problems, such as anxiety, apathy, depression, reduced insight,
obsessional and repetitive behaviours relating to impulse control disorders (e.g.,
hypersexuality, gambling), psychotic symptoms including hallucinations and
delusions (Chaudhuri & Naidu, 2008) and finally symptoms related to the autonomic
nervous system such orthostatic hypotension, sleep disorders, constipation, delayed
gastric emptying, bladder problems, pain, erectile dysfunction, disturbance of
perspiration (increased sweating or hypohydrosis) hyperthermia, peripheral edemas,
dry eyes, dryness of the skin etc (Chaudhuri & Schapira, 2009). NMS symptoms can
precede or follow the onset of motor symptoms. NMS are rated by patients as
among the most important and challenging features of their illness (Politis et al.,
2010) and are shown to correlate strongly with HR-QoL (Gallagher, Lees & Schrag,
2010). Yet, they remain less well understood than motor symptoms. They are
typically less responsive to DRT and so remain a management challenge. This
study focuses on CNPS that can present in PD. These symptoms are considered in
more detail in Section 1.3 below.
1.3 Cognitive and neuropsychiatric symptoms (CNPS) in PD

Prevalence and phenomenology
CNPS occur in over 60% of patients with PD (Schrag, 2004). They are different in
nature and severity from those expected in normal aging (Krishnan, Sarma, Sarma
& Kishore, 2011). CNPS can sometimes precede the onset of motor symptoms
including depression, fatigue and anxiety. Other symptoms, such as dementia and
hallucinations tend to emerge as the disease progresses (Bassetti, 2011). CNPS are
rated by patients as among the most important and challenging features of their
illness (Politis et al., 2010) and are shown to correlate strongly with health-related
QoL (Gallagher et al., 2010). Yet, they are often undisclosed by patients (Chaudhuri
et al., 2010), unreported in patients clinical notes (Gallagher et al., 2010) and
undiagnosed and untreated by health care professionals (Chaudhuri & Schapira,
2009; Muzerengi et al., 2006; Shulman, Taback, Rabinstein & Weiner, 2002).
16
Cognitive symptoms in PD
Dementia: Dementia is up to six times more prevalent in PD than in the general
population. Approximately 30% of PD patients are estimated to have dementia
(Aarsland, Zaccai & Baryne, 2005; Riedel et al., 2008). Dementia in PD accounts for
between three and four percent of dementia cases in the general population
(Aarsland et al., 2005). With the presence of dementia, the risk of mortality in PD
doubles (Levy et al., 2002).
Although the key features are similar to Alzheimers Disease (AD), it is worth noting
that in PD-related dementia memory recall tends to be more impaired than memory
formation, there is typically less language impairment and greater decline in
executive functioning. Symptoms tend to co-occur with sleep difficulties, agitation,
psychosis and depression (Aarsland, Beyer & Kurz, 2008; Aarsland, Bronnick,
Larsen, Tysnes & Alves, 2009). Criteria and assessment protocols for diagnosing
PD-related dementia are specified by Dubois et al. (2007). In the DSM-IV, PD-
related dementia currently sits within the category dementia due to other medical
conditions (APA, 2000; see Weintraub & Stern, 2005, for a review).
Age is the strongest predictor of dementia in PD, with other predictors including PD
severity (Riedel et al., 2008), female gender and family history of PD (Schrag,
BenShlomo, Brown, Marsden & Quinn, 1998). In a follow-up study of PD patients
with a disease duration of 15-18 years, 48% had dementia (Hely et al., 2005).
Whereas nineteen percent of younger-onset patients (<40 years of age) are
estimated to be effected over a median of 18 years (Schrag et al., 1998), older
adults (>65 years of age) with PD have almost two-and-a-half times the relative risk
of dementia compared with non-PD (Perez, et al., 2012). Variation in estimates are
likely to reflect variations in methodological factors including age of population
studied, source of cohort (clinic- or community-based), the neuropsychological
battery and definiton of dementia used (Aarsland, et al., 2005, 2010).
Mild cognitive impairment (MCI): Assessment of MCI generally includes the

domains of executive functioning, attention, memory, language and visuospatial
ability (Caviness et al., 2007) with memory typically being the most common deficit
(Petersen et al., 1999). Generally accepted criteria for MCI in PD do not yet exist
(Aarsland et al., 2009). The original definition of MCI by Petersen and colleagues
(1999) specifies subjective complaint of cognitive decline, objective evidence of
impairment on neurospychological tests and lack of significant functional
17
impairment. This definition requires consideration, however, given that frequency of
reports of cognitive complaint do not differ significantly between PD patients with
and without objective evidence of MCI. This suggests that objectively identified
symptoms are more sensitive markers of MCI (Caviness et al., 2007). Section 1.7
below considers the validity of subjective symptom reporting in more detail.
A large multicenter study of over 1300 non-demented PD patients recently found

that MCI in at least one domain affects approximately 25% (Aarsland et al., 2010)
although estimates have varied between studies depending on stage of illness and
use of DRT among patients studied (Aarsland et al., 2009). The most common types
of MCI were non-amnestic single-domain (11.3%), amnestic single-domain (8.3%),
amnestic multiple-domain (4.3%) and non-amnestic multiple-domain (1.3%). Most
common domains were memory, followed by visuospatial, executive functioning and
attention. After adjusting for executive functioning and attentional difficulties,
memory remained impaired indicating that poor memory performance is not
secondary to these deficits. The study found MCI to be more common among
patients using DRT. Such findings have important implications for management and
treatment of MCI.
MCI is associated with age, depression, age of onset, and disease severity.
(Aarsland et al., 2008; 2010). Evidence for the role of gender in PD-related cognitive
decline is inconsistent. Whereas dementia in PD is predicted by female gender
(Schrag et al., 1998), Aarsland and colleagues (2010) found MCI in PD to be
associated with male gender. Other studies have not found any relationship
between MCI and gender (Aarsland et al., 2009). In patients who have been
diagnosed for 15 years or more prevalence rises to 36% compared with between
10.7% and 16.8% of the general population at a similar age (Hely et al., 2005). The
high prevalence of MCI throughout the PD population including early-stage,
unmedicated patients emphasises the importance of recognising MCI as a key
feature of PD and identifying it as early as possible.
Although not formally tested in assessments of MCI, studies have found theory of
mind (ToM) deficits to be higher in PD than healthy controls. PD patients showed
both affective and cognitive ToM deficits which were asociated with lower HR-QoL
but not with depression or other cognitive or motor symptoms (Bodden et al., 2010).
18
Neuropsychiatric symptoms in PD
Changes in mood are more prevalent in PD than the general population and include
increased levels of depression, anxiety and apathy (Chan & Zainal, 2010;
Chaudhuri, Healy & Schapira, 2006; Weintraub, Comella & Horn, 2008). Other
neuropsychiatric symptoms include psychosis and impulse control disorders and
their behavioural manifestations. Although emotional reactions to the changes and
losses associated with the illness are to be expected, research indicates that mood-
related symptoms are representative of the disease process itself. PD-related
damage to neurotransmitter systems including norepinephrine and serotonin are
thought to contribute to such symptoms (Zahodne, Marsiske & Bowers 2013).
Depression: Although estimates of prevalence vary, recent research shows that

between one third and one half of patients report some level of depression with
approximately one in five reporting major depressive disorder (MDD) and others
reporting less severe types of depression including dysthymia, subsyndromal
depression and minor depression (Reijnders, Ehrt, Weber, Arsland & Leentjens,
2008; Weintraub et al., 2008; Weintraub & Stern, 2005). Research suggests that
depression can precede PD onset and is a risk-factor for PD (Nilsson, Kessig &
Bolwig, 2001; Schurmann et al., 2002). Risk factors for depression in PD include
female gender, early onset PD and the number of other NMS from a range including
apathy, anxiety, attention and memory, psychosis, sleep and cardiovascular
symptoms (Rodrguez-Violante, Cervantes-Arriaga, Berlanga-Flores, Ruiz-Chow,
2012; Weintraub & Stern, 2005).
Although depression is consistently found to be the strongest predictor of HR-QoL in

PD (Aarsland, Larsen, Tandberg & Laake, 2000; Chaudhuri et al., 2006; Gallagher
et al., 2010; Global Parkinsons Disease Steering Committee [GPSC], 2002; Schrag,
Jahanshahi & Quinn, 2000), rates of recognition and diagnostic accuracy are
suboptimal. Shulman and colleagues (2000) assessed PD patients mood on the
day of their routine neurology appointment. Standardised measures taken post-
appointment found 44% to have depression and 39% to have anxiety. After seeing
each patient, neurologists were then asked to report their impression of patient
mood. Of those patients meeting clinical criteria for depression and anxiety,
neurologists only recognised 35% and 42%, respectively. Not only poorly
recognised, depression commonly goes untreated (Chaudhuri, et al., 2006;
Weintraub, Moberg, Duda, Katz, & Stern, 2003; Weintraub et al., 2008; Weintraub &
Stern, 2005).
19
Anxiety: Anxiety is common in PD and highly co-morbid with depression (Weintraub
et al., 2008). Although less well studied than depression, it is also recognised as a
potential risk factor for development of the condition (Chaudhuri et al., 2006; Shiba
et al., 2000; Weisskopf, Chen, Schwarzschild, Kawachi & Ascherio, 2003; Weintraub
& Stern, 2005).
Apathy: Apathy is one of the most commonly reported CNPS of PD and is

associated with reduced HR-QoL (Oguru, Tachibana, Toda, Okuda & Oka, 2010). It
comprises an array of cognitive and behavioural features central to which is a lack of
motivation. Symptoms include flattened affect, indifference, lack of effort, activity
initiation or completion, reduced participation in purposeful activities and a reliance
on others to provide structure to activities (Kirsch-Darrow, Fernandez, Mariske,
Okun, & Bowers, 2006; Pluck & Brown, 2002). Estimated rates of prevalence are as
high as 40% of patients with PD but vary depending on sample and mode of
assessment (Starkstein et al., 1992). Although underreported (Leentjens et al.,
2008), apathy is found at higher levels in PD than other neurodegenerative
conditions such as AD, progressive supra-nuclear palsy and fronto-temporal
dementia (Alves, Wentzel-Larsen & Larsen, 2004; Chaudhuri et al, 2006; Pluck &
Brown, 2002). Research shows that although apathy is often co-morbid with
depression, each can occur in the absence of the other (Kirsch-Darrow et al., 2006).
In comparison to apathy, depression is more commonly associated with poor
emotional wellbeing and communication, whereas cognitive decline is more closely
related to apathy (Pluck & Brown, 2022).
Psychosis in PD: Hallucinations and delusions are recognised CNPS in PD. Less
common than hallucinations, delusions are associated with challenging behaviour
and higher rates of depression (Marsh et al., 2004). Hallucinations are typically
visual in nature and more likely to occur among PD patients who have dementia
(40%) compared with those who do not (15%; Aarsland et al., 1999). They are
associated with older age, female gender, excessive daytime sleepiness, higher
disability in functioning, need for specialist care (e.g., placement in nursing home)
and caregiver burden (Zhu, van Hilten, Putter & Marinus, 2013). In a longitudinal
study of patients diagnosed 15 years prior, 50% experienced hallucinations (Hely et
al., 2005). Although hallucinations are often associated with DRT, they are currently
considered a complication of advancing disease, potentially caused by neuronal
degeneration rather than the direct side effect of the medication itself (Chaudhuri et
20
al., 2006; Goetz, 2009). Prevalence is estimated to between 10% and 40% of those
on DRT and between 5% and 10% of non-medicated PD patients (Chaudhuri et al.,
2010; Weintraub et al., 2008; Weintraub et al., 2004; Weintraub & Stern, 2005).
Hallucinations often involve other people and animals conducting normal
behaviours. They tend to be repetitive and become familiar to patients (Goetz,
2009). Although often distressing, severity of hallucinations can vary. In more benign
cases treatment may not be required (Weintraub et al 2008). Where treatment is
indicated, consideration must be given to the risk of anti-psychotic medication
aggravating PD symptoms (Lhle et al., 2009).
Impulse control disorders (ICDs) in PD: Some people with PD demonstrate

behavioural disturbances including punding (purposeless, repetitive, stereotyped
behaviours; Evans et al., 2004) and impulse control disorders (ICDs) including
hypersexuality, gambling, binge eating, excessive shopping and hoarding
(OSullivan, Evans & Lees, 2009). These are understood to arise from the use of
DRT and particularly dopamine agonist therapy in some patients. Dose reduction
typically resolves the problem although this can be difficult to achieve without
increasing motor disability (Avanzi et al., 2006; Chaudhuri & Naidu, 2008; Evans &
Lees, 2004; Ferrera & Stacy, 2008; OSullivan et al., 2009). Such behavioural
disturbances are associated with greater disease duration but can occur at any
stage of the disease. Taken together, hypersexuality, gambling, binge eating and
compulsive shopping are estimated to affect 13.6% of people with PD (Weintraub, et
al., 2010). Such difficulties are not uncommon in people with frontotemporal
dementia and Alzheimers Disease ([AD]; Bathgate, Snowden, Varma, Blackshaw &
Neary, 2001). In order to identify risk factors for four common ICDs, (hypersexuality,
gambling, binge eating, compulsive shopping) a recent study compared a large
sample of PD patients with and without ICDs (Voon et al., 2011). Risk factors
identified included depression, anxiety, obsessive-compulsive features, novelty-
seeking, impulsivity and smoking. Cognitive function, symptom types, disease
duration and severity of motor symptoms were unrelated. Hypersexuality, gambling,
binge eating and excessive shopping are explored in the present study.
1.4 Patient wellbeing and HR-QoL

The impact of PD on patient wellbeing and HR-QoL is considerable. There is
growing evidence of the relationship between HR-QoL and psychological, physical
and social functioning for patients and carers. Such evidence highlights the need for
21
better recognition and valid assessment in health services for PD (den Oudsten, van
Heck & de Vries, 2007).
Patients experiences of PD can depend on a variety of factors including age, nature

and severity of symptoms and coping style. A number of studies around the world
have established that patient HR-QoL and distress are more severely affected by
NMS than motor symptoms (e.g., Hammarlund, Hagell & Nilsson, 2012; Li et al.,
2010; Martinez-Martin, RodriguezBlazquez, Kurtis & Chaudhuri, 2011). An
international survey of PD patients found depression to be the strongest predictor of
HR-QoL (GPDS, 2002) with other studies showing that depression accounts for
between 43 and 60% of the variance in HR-QoL (Martinez-Martin et al., 1997;
Reuther et al., 2007). In addition, HR-QoL is associated with patients satisfaction in
relation to the explanation of PD they received at diagnosis (GPSC, 2002) and
sense of empowerment from knowledge they received during a hospital stay (Leino-
Kilpi et al., 2005). Lower age of onset is associated with greater perceived stigma,
lower HR-QoL, higher rates of depression and greater loss of employment (Schrag,
Hovris, Morley, Quinn & Jahanshahi, 2003). Evidence for the relationship between
age of onset and HR-QoL is not consistent, however (e.g., Zach, Friedman, Slawek,
& Derejko, 2004), and may be mediated by other factors including psychological
adjustment (see below), carer wellbeing (see Section 1.5) and relationship
satisfaction (see Section 1.6).
Research suggests that psychological adjustment to the disease has a greater

impact on patient HR-QoL than motor symptom severity (Suzukamo, Ohbu, Kondo,
Kohmoto & Fukuhara, 2006). People who have less task-focussed styles of coping
are at higher risk of depression and anxiety and poorer HR-QoL (Hurt et al., 2012).
The study also found that poorer cognition predicts less task-oriented coping.
Comorbid cognitive decline and depression are associated with age, disease
duration, activities of daily living (ADLs) and psychosis (Montel & Bungener, 2008;
Weintraub et al., 2004).
1.5 Carer wellbeing and HR-QoL

Informal carers are an invaluable resource in managing the lives of people with PD.
They may be the patients spouse, child, parent, other relative or close friend, for
example. Contributions of informal carers to the lives of PD patients substantially
minimise the costs of PD to national health services. In the UK, full-time institutional
22
care for patients with PD is almost five times greater than the cost of caring for a
patient at home (Findley et al., 2003). Moreover, they enable patients to remain at
home for as long as possible, consistent with well-recognised preferences among
people requiring assistance with daily living (Ware et al., 2003; Wolff, Kasper &
Shore, 2008). The following section outlines current understanding about carers
experiences of PD. Consistent with the focus on couples experiences of PD in the
present study, the emphasis in this section is on spouses or partners as informal
carers. Evidence shows that carer distress is higher among spouses than adult
children or children-in-law of the patient (Aarsland et al., 1999).
Challenges of caregiving
The impact of the caregiving role on the carers daily life and psychological
wellbeing can lead to carer burden and distress, reduced physical and mental health
and HR-QoL, and compromised social and employment opportunities. The nature
and extent of such outcomes tend to increase with disease progression. Caregiver
distress is associated with poorer coping ability and less sleep (Cifu et al., 2006).
Evidence shows that difficult carer experiences have negative consequences for the
patient (Dowding, Shenton, & Salek, 2006). Given the impact of caregiving in PD on
patients and carers wellbeing and HR-QoL, further understanding of carers
experiences and needs is required.
Demands on carers range from physical and emotional to practical, social,

recreational and financial or work-related. In their qualitative study of informal family
carers of PD patients, McLaughlin and colleagues (2011) identified factors
contributing to carer burden including needs for information, economic implications
of caring, provision of physical, social and emotional support. Although carers felt a
sense of duty to carry out the role, most felt unprepared and poorly supported in
doing so. Consistent with this, clinicians identify PD carers greatest needs as
respite, emotional support, and skills in behavioural management (Guinta, Parrish &
Adams, 2002). A lack of respite is consistent with recent research finding that the
longer that carers are in the caregiving role, the more restrictions there are on their
time with fewer opportunities to perform personal and social activities (e.g., meeting
friends, visiting the dentist; Lkk, 2009). Although many informal carers continue to
work, few carers employ assistance from professional services (Tanji et al., 2013).
Several studies note the tendency for carers to adopt the tasks previously managed
by the patient, (e.g., gardening, driving, home maintenance) as well as additional,
23
physically demanding tasks including patient personal care, lifting and toileting
(McLaughlin et al., 2011; Secker & Brown, 2005). This has important clinical
implications for carers wellbeing when considered in light of the evidence that the
majority of PD carers report significant health problems (Guinta et al., 2002). A
sample of PD carers, most of whom were spouses, were compared to carers of
patients with other neurological conditions. PD carers demonstrated higher rates of
arthritis, asthma, diabetes, heart problems, high blood pressure (Guinta et al.,
2002). This may be explained, in part, by the relatively higher age of carers and a
greater number of years in the caring role.
Caregivers in PD are at higher risk of depression than the general population

(Guinta et al., 2002; Secker & Brown, 2005). Depressed caregivers report more
carer distress and lower HR-QoL (Martin-Martinez et al., 2007). Carter and
colleagues (1998) explored spouses experiences of caring for a person with PD and
how these vary as a function of disease progression. Using the Hoehn and Yahr
scale to identify stage of disease, they found that strain on spouses is present
across all five stages. Although their physical health and preparedness did not vary
significantly as a function of disease duration, by stages four and five carers had
three times more caregiving tasks, were spending up to three times as many hours
per week providing care and were significantly more depressed (Carter et al., 1998).
One study compared caregiving at early and later stages of PD and showed that
relative to non-caregiving spouses, carers risk of mental health problems is five
times greater by the time they are providing the highest levels of care (O'Reilly,
Finnan, Allwright, Smith & Ben-Shlomo, 1996).
Carer distress is not related to carer age but is generally higher in female than male
caregivers (Martin-Martinez et al., 2007; Schrag, Hovris, Morley, Quinn &
Jahanshahi, 2006). In comparison with motor symptoms, non-motor symptoms are
the most consistent and powerful predictors of caregiver distress in PD, particularly
depression, agitation, psychotic symptoms and cognitive impairment (Aarsland et
al., 2007; Aarsland, Larsen, Karlsen, Lim & Tandberg, 1999).
Positive aspects of caregiving

Research and clinical investigations of informal caregiving tend to focus on the
challenges of the role. Although less well-recognised, evidence shows various
positive aspects of caregiving. These are potentially useful in informing strategies for
supporting carers. Informal caregiving is associated with a sense of satisfaction.
24
This includes interpersonal satisfaction, intrapersonal satisfaction and the
satisfaction derived from minimising negative outcomes and promoting positive
outcomes for the patient (Nolan, Grant, & Keady, 1996). Evidence, although
inconsistent, has shown caregiving can engender feelings of pride related to an
increased sense of mastery and competence (e.g., in developing skills to manage
challenges), personal growth (e.g., reaching ones own potential) and purpose in life
(Kramer, 1997). Caregiving can help to maintain closeness between carer and
patient which may be diluted if the patient were to receive care elsewhere or with
another person (Pinquart & Sorensen, 2003). Carers with some positive perceptions
of caregiving tend to report better health status, lower burden and less depression
(Cohen, Colantonio & Vernich, 2002) suggesting that deriving some sense of
pleasure in the role may protect against mood decline and distress. Positive
experiences of caregiving in PD are associated with carers who were more
accepting of the condition and engaged in more positive reframing (Davies,
Elderton, Loftus, Thornton & Turnbull, 2009). Such findings are not only interesting
in terms of the phenomenology of the carer role but also in terms of informing
potential interventions to help carers cope with the role.
This section considered carer distress in detail, demonstrating the various ways in
which carer distress is conceptualised and measured. For instance, whereas some
studies have investigated distress in relation to the caregiving role itself, others look
at carers mood or emotional distress. Furthermore, although some attention has
been paid to the relationship between carer distress and certain CNPS, including
cognitive decline and patient depression, it remains unclear how less well-
recognised CNPS relate to carers wellbeing. The present study sought to
understand more about the relationship between patients CNPS and distress
among patients and carers. It measured carer distress in several ways and included
less well-recognised CNPS thereby allowing a more comprehensive exploration of
the relationship between carer distress and non-motor aspects of PD.
1.6 Couples experiences of PD

Central to the lives of PD patients and their caregiving spouse or partner is the
relationship they share as a couple. Despite this, the impact of PD on couples
relationships is poorly attended to in many clinical contexts. The present study aims
to expand our understanding of how couples experiences of PD and CNPS in
particular impact on couples relationships.
25
Current understanding of how PD impacts on couples is summarised in this section.
Given that few research studies have explored this area in detail, I include findings
from studies of other neurological and chronic, degenerative conditions to see how
factors relevant to PD including physical and cognitive decline and role-related
adjustments within the couple impact on the relationship.
Relationship satisfaction
Carers ratings of relationship quality in PD decline with disease progression,
beginning at Stage 2 of the Hoehn and Yahr scale (Carter et al., 1998). Relationship
satisfaction is worse in younger-onset patients than older-onset patients (Schrag et
al., 2006). Beyond these findings, we need to explore other literature available on
couples experiences of ageing, chronic illness and cognitive decline to see what
evidence may be relevant to couples experiences of PD.
In their review of research into couples relationships among people over 65 across
a range of conditions, Walker and Luszcz (2009) found evidence of an association
between the psychological health and wellbeing of the individual and that of their
partner but little evidence of an association between partners physical health or
health management behaviours. This is consistent with findings previously
discussed showing the association between patient and carer wellbeing (see
Sections 1.4 and 1.5). This association has been conceptualised by some
researchers as emotional contagion. It highlights the role of interpersonal dynamics
within a couple and the need to consider the couple as a whole, rather than
focussing on each member in isolation when aiming to understand their wellbeing.
The review also demonstrated that relationship satisfaction protected the wellbeing
of people diagnosed with chronic conditions including PD, osteoarthritis and
dementia. The review calls for greater recognition of the role spouses play in
moderating patient wellbeing in older couples. Given the importance of relationship
dynamics in individual wellbeing, it is noteworthy that in this review only 45 studies
were identified. Of these, the only one to focus on PD included a small sample of
late-stage PD patients and carers and explored perceptions of support (Birgersson
& Edberg, 2004). It highlighted particular patterns in adjustment to PD progression.
Some couples demonstrated resilience and a united approach, whereas others
developed greater interpersonal distance. More research is needed into the
association between wellbeing and relationship satisfaction in PD and the roles of
CNPS and age of onset in this.
26
Although lacking in PD, research into relationship satisfaction in non-PD populations
with early cognitive decline has grown over the past decade. A study of carers of
people with early stage AD found that higher carer-rated relationship satisfaction
prior to cognitive decline is associated with less carer burden and better family
functioning post-symptom onset (Steadman, Tremont & Davis, 2007). Carers who
were more satisfied with their relationships were less reactive to memory and
behavioural difficulties, had more problem-solving skills and more effective
communication than couples who reported lower pre-morbid relationship
satisfaction.
Few studies, however, consider the effects of early cognitive change on the
relationship of the couple as a whole. A recent review found that only one third of
studies included both members of the couple with most studies including carers only
(Prakke, 2012). This gap demonstrates an oversight of the fact that, particularly in
early stages of cognitive impairment, couples are still living together. Either
consciously or otherwise, they are the first to detect changes and respond in
particular ways including recognising and adapting to changes or denying them.
How such changes affect the dynamics within the couple and how reactions vary
between couples is clinically relevant yet poorly understood. Such methodological
bias cannot be explained solely by the difficulties that a person with advanced
dementia or AD might have in completing interviews or questionnaires as this bias
prevails in studies of forgetfulness and MCI. Furthermore, where carers are involved
in studies of cognitive change, the focus is usually on carer burden rather than
relationship satisfaction or lived experiences of the couple as a whole. Such
limitations in scope and biases in research design indicate that there is still a
considerable way to go in understanding couples experiences of cognitive decline in
general (Prakke, 2012).
1.7 Subjective illness appraisals in PD

Although assessments of patient functioning can be carried out in a variety of ways,
much of our understanding comes from patients and carers subjective appraisals of
the illness (Evans & Norman, 2009). As explored above (Section 1.4 and 1.5)
symptom severity, functioning and psychological wellbeing are closely associated
with patient and carer distress, coping and HR-QoL as well as carer burden. It is
conceivable that patients and carers perceptions of symptom presence relate to
27
their emotional wellbeing. This must be kept in mind when considering the accuracy
and meaning of patients and carers reports of physical, cognitive and
neuropsychiatric functioning. These issues are considered in greater depth below.
Illness appraisals in couples

Simms (2012) explored the relationship between HR-QoL, carer burden and illness
appraisals by PD patients and their carers, 80% of whom were spouses. After
controlling for PD stage and physical functioning, patient illness appraisal predicted
most aspects of patient HR-QoL. Of particular note was the pattern within patient-
carer relationships whereby more optimistic perceptions of PD by one member were
associated with better HR-QoL for the other member. Moreover, carers perceptions
of patients belief in treatment and emotional reactions to PD were key predictors of
carer burden and HR-QoL. These findings demonstrate how thoughts and feelings
about an illness, and recognition and communication of these within couples impact
on HR-QoL for both members. This aligns with aforementioned evidence that
distress and psychological wellbeing among patients and carers has implications not
only for their own lives but also for each others (Dowding et al., 2006). Such
findings show the importance of considering the patient-carer relationship when
attending to wellbeing of patients and carers.
Assessment of patient functioning in PD and other illnesses may include

standardised, objective measures, clinicians observations and subjective reports by
patients and carers. It is not uncommon for carers views of patient functioning to be
used as proxies for patient self-report, for example where physical or cognitive
difficulties prohibit patients from being assessed directly. As research summarised
above has shown, carers views of patient wellbeing can reveal important
information about the wellbeing of the patient and the couples relationship.
However, as discussed in the following section, where patients and carers are asked
to report on the same aspects of the patients condition, discrepancies are often
found between their reports (Fleming, Cook, Nelson & Lai, 2005). The following
section considers the factors that contribute to patient-carer discordance in
reporting, its meaning and clinical implications.
Discordance
Differences in ratings by patients relative to carers are often assumed to reflect
patient unawareness or denial of symptoms (e.g., Rymer et al., 2002). When patient
awareness is in doubt, carer ratings can provide a potentially useful baseline from
28
which to measure patient insight. This fits with evidence from non-PD studies of
cognitive decline that carers views of patient memory functioning correlate
significantly with objective memory tests, whereas patient ratings are unrelated
(Feher, Mahurin, Inbody, Crook & Pirozzolo, 1991). A potential interpretation is that
carers perceptions can be considered more accurate than patients. Consistent with
this is evidence that discordance in PD is associated with greater disease severity
(Fleming et al., 2005; Martin-Martinez et al., 2004) and that non-PD patients with
dementia tend to underreport symptoms of cognitive decline (Feher et al., 1991).
Another interpretation is that carers experiences of depression and distress in
reaction to the patients symptoms can lead them to over-estimate or catastrophise
their symptoms. There is no evidence that underreporting is related to age or
education.
Most evidence for associations between illness severity and underreporting lies
within the domain of memory. Inconsistencies exist, however. In a study of people
with mild AD, findings showed that the lower a patients performance on objective
memory tests the stronger their subjective ratings of memory (Green, Goldstein,
Sirockman & Green, 1993). In contrast, carers ratings of patient memory were more
consistent with objective ratings. Whereas patients with AD were in agreement with
carers over long term memory, the level of discordance between family and patient
ratings was high for estimates of recent memory and activities of daily living with
patients giving higher ratings than carers.
Discordance may reflect a patients unawareness of their own symptoms. Disorders

of awareness or insight are recognised in neurological, neurodegenerative and
psychiatric conditions including traumatic brain injury, stroke, AD, schizophrenia and
borderline personality disorder. Lack of awareness is not the same as cognitive
impairment. For instance, some AD patients who are objectively more impaired
show greater self-awareness than those with milder impairment (Feher et al., 1991).
In addition to its neurological and cognitive underpinnings, awareness is thought to
be associated with psychological, motivational and contextual factors (Fleming &
Ownsworth, 2006; McGlynn & Schacter, 1989). In support of this, Feher and
colleagues (1991) noted a weak negative relationship between depression in non-
PD patients with mild to moderate cognitive decline and patient underreporting of
cognitive change in relation to objective measures. Although patient-proxy
discordance could not be measured, as no carers were involved, this study suggests
that patients with greater awareness or acknowledgement of cognitive difficulties are
29
more depressed. Such findings highlight the importance of looking at the whole
person and surrounding circumstances when attempting to understand patient
reporting and patient-proxy discordance.
Among people with mild cognitive change, patterns of underreporting are

inconsistent. In previous research into mild to moderate cognitive decline authors
noted considerable variation among patients in their symptom awareness however,
with some patients having severe cognitive decline yet retaining high levels of
insight into their deficits and others with mild decline having a greater lack of insight
(Feher et al., 1991). Although, overall, they found a weak correlation between
underreporting and severity of cognitive decline as measured by the Mini-Mental
State Examination (MMSE), such inconsistency suggests that memory loss alone is
not sufficient to explain underreporting. Patient-carer discordance in PD can occur in
the absence of cognitive decline. For example, in recent studies of PD patients who
did not have dementia, considerable discordance has been found between patient
and carer reports of patient neuropsychiatric symptoms (Duenas & Serrano, 2007;
Schiehser et al., 2013). To describe patients as underreporting assumes the tool
used to assess objective functioning is valid, yet this is not always the case.
Appropriate tool selection requires careful consideration and detailed discussion and
debate can be found in neuropsychological literature. Similarly, where patient and
proxy reports are discordant, consideration must be given to the accuracy of each
report, the validity of using reports, factors contributing to the discordance and
clinical implications thereof.
Aarsland and colleagues (2010) discuss the challenges of using subjective reports
of MCI in non-demented PD patients as part of assessment and diagnosis. Caviness
and colleagues (2007) found both overreporting and underreporting of symptoms
relative to objective measures by PD patients categorised as cognitively normal,
MCI and demented, and their spouses. Overall, with the exception of delusions,
there was no significant difference in frequency of subjective cognitive complaints
between patients groups. It seems that MCI patients may underreport and
cognitively normal PD patients may overreport, culminating in a convergence of
rates of subjective symptom reporting. This raises a question around the purpose or
function of under- or over-reporting for the rater.
As demonstrated so far, despite evidence linking patient-proxy discordance with

patient unawareness and illness severity, other factors warrant consideration. These
30
include the domain or symptom being rated, measures used, reluctance to
acknowledge symptoms, dynamics in the patient-carer relationship, and
psychosocial wellbeing of the rater. Each of these can influence the raters
perspectives of clinical symptoms or preparedness to be candid in their reporting.
These factors require further exploration.
Research suggests that the extent to which discordance exists between ratings by
carers and patients varies depending on the symptom or domain in question.
Symptoms that are less directly observable and less concrete in measurement and
description are less likely to be rated consistently by carer and patient (Fleming et
al., 2005; Martin-Martinez et al., 2004; Schiehser et al., 2013). A recent study of
carer and patient reports of PD symptoms (McKinlay et al., 2008) administered the
Frontal Systems Behavioural Rating Scale (FrSBe) to carers and patients. There
was significant discordance in domains of disinhibition and executive functioning. In
contrast to other evidence of underreporting, patients total scores reflected greater
perceived severity than carers. The disparity in pattern may be due, in part, to
differences in detectability and impact of the symptoms on patients compared with
carers.
Symptom underreporting by patient or proxy may be a manifestation of the

individuals reluctance to acknowledge a symptom (Feher et al., 1991). Such
reluctance or denial is common in a range of predominantly physical illnesses,
particularly in earlier stages of illness, and is often formulated as an attempt to cope
with the difficulties of illness-related changes (Goldbeck, 1997). This may help to
explain why Fleming and colleagues (2005) found that PD patients and carers
disagreed most in their ratings of patient physical activity. By delaying symptom
acknowledgement, denial can provide individuals with time to consider and adjust to
the diagnosis and symptoms and may help to defend against shame and stigma.
Clinically, any evidence of underreporting may be a useful indicator of the extent to
which the rater is adjusting and coping with symptoms.
As discussed earlier, carer perceptions of patient CNPS are associated with carer
self-reports of depression and carer burden (Aarsland et al., 1999). Fleming and
colleagues (2005) summary of research in this area notes that proxies typically rate
not only patient functioning but also patient HR-QoL as poorer than patients.
However, the relationship between discordance and patient mood is unclear.
Relatively higher ratings of symptom severity by carers may reflect mood changes
31
and distress on the part of the carer rather than inaccuracies by patients (McKinlay
et al., 2008; Simms, 2012).
Ratings may reflect dynamics in the patient-carer relationship. One study found that
only when PD patients are accompanied by carers to the clinic is there consistency
between patient, carer and clinician ratings of PD severity (McRae, Diem, Vo,
OBrien & Seeberger, 2002). Underreporting of symptoms may be an attempt to
protect the other (e.g., a carer wanting to minimise any guilt or shame the patient
may feel; the patient wanting to minimise carer burden or concern by rating
symptoms as milder than they actually are). These possibilities highlight the need to
consider the mental state and experiences of carers when seeking their
perspectives on patient functioning and the nature of the relationship and
communication between patients and carers, and the assessment measures used.
What are the implications of discordance on patient and carer wellbeing in PD?
Although in PD the relationship between symptom severity, patient and carer
distress and discordance in illness appraisals is unclear, research into other
conditions shows a link between discordance and psychosocial wellbeing. In
patients with rheumatoid arthritis, psychological adjustment was positively
associated with patient-spouse concordance in perceived understanding of the
condition and its implications, and their sense of control (Sterba et al., 2008).
Studies of chronic fatigue and Addisons syndrome show a strong negative impact of
discordant illness appraisals on patient HR-QoL and psychological wellbeing
(Heijmans, de Ridder & Bensing, 1999).
As discussed, there is evidence that patient and carer perspectives of PD symptoms

cannot be assumed to be equivalent and must be considered carefully in clinical
decision making. Moreover, the clinical relevance of discordance and the factors
underlying it require consideration. There are a variety of ways in which signs of
discordance within couples can inform the formulation and interventions offered to
PD patients and carers. In light of these points, the present study explores the
clinical correlates of discordance in couples perceptions of PD symptoms.
32
1.8 Aims and objectives of the present study
Evidence shows that specialists and patients alike tend to limit their discussions of
PD to the nature, severity and management of motor symptoms (GPDS, 2002). As
demonstrated in this comprehensive overview of CNPS in PD, however, there are a
myriad of non-motor symptoms that are not only complex, debilitating and
distressing, but remain poorly understood and inadequately attended to (Chaudhuri
Yates & Martinez-Martin, 2005). In recognition of the prevalence of PD and non-
motor manifestations, the UK government-commissioned National Institute of
Clinical Excellence (NICE) have recommended that greater understanding of these
aspects of PD and their implications is developed in order to inform better care for
those affected by PD. Consistent with this, the present study assesses patient and
carer perceptions of CNPS and examines them in relation to distress, relationship
satisfaction and discordance in perceptions of symptoms within couples. It is hoped
that by enriching our understanding of couples experience of CNPS in PD this study
can inform improvements in support for couples living with PD.
The study aims to:

1. Assess patients and carers perceptions of CNPS;
2. Assess the relationship between CNPS intensity and the levels of distress and
relationship satisfaction experienced by couples;
3. Assess the level of concordance or discordance between patients and carers
perceptions of the CNPS and how this relates to the distress and relationship
satisfaction experienced by couples.
4. Identify the best predictors of patient and carer distress and relationship satisfaction.
Key question of the study:

How do patient CNPS relate to global distress and relationship satisfaction in
couples (patients and carers) with PD?
Hypotheses
More specifically, the key hypotheses of the study are as follows:
Hypothesis 1
Patients will rate their physical disability and CNPS intensity lower than carers;
33
Hypothesis 2
Participants perceptions of CNPS intensity will be associated with worse
relationship satisfaction and greater reports of distress;
Hypothesis 3
Discordance between carer and patient perceptions of the patient CNPS presence
and intensity will be associated with worse relationship satisfaction and QoL and
greater reports of distress;
Research question
What are the best predictors of HADS distress and relationship satisfaction for
patients and carers?
34
2. METHOD
2.1 Design
This is a quantitative, cross-sectional and cross-dyads design comparing people
with PD and their carers. The term carer will be used throughout the study. For the
purposes of this study, carer is defined as the patients partner or spouse.
2.2 Sample
Sixty participants were sought for the study (30 participants with PD and their
respective carers).
Inclusion criteria
Patients must have a diagnosis of idiopathic PD (UK Parkinsons Disease
Society Brain Bank (UKPDSBB); Jankovic, 2008);
Patients must have at least a two year history of PD;
Participants must be couples (1 person with PD, 1 carer) who are married or in a
relationship);
All participants need to be fluent in English;
All participants need to be able to provide informed consent.
Exclusion criteria (for all participants)

History of head injury, epilepsy, stroke or learning disability;
Motor symptoms or communication difficulties that prevent patients from
answering questions;
Severe cognitive impairment on the basis of the patients score on the Modified
Telephone Interview for Cognitive Status (TICS-M; Cook, Marsiske & McCoy,
2009; Appendix 7; cut off <19).
Power analysis for sample

The sample size of 30 couples was identified on the basis of a power analysis.
When the sample size is 30, a 0.050 two-sided Fisher's z test of the null hypothesis
that the Pearson correlation coefficient r = 0, will have 80% power to detect an r of
0.5. This power calculation was based on a) the number of variables to be included
as predictors in a multiple regression analyses (10 subjects per variable) and b) the
anticipated correlation between CNPS severity and outcome variables (QoL,
35
depression, anxiety, relationship satisfaction and carer distress) based on evidence
of strong correlations (mean r 0.5) existing between illness severity (including
cognitive decline), QoL, mood and carer burden (DAmelio et al., 2009; Martinez et
al., 2007) and cognitive decline in AD and carer burden (Rymer et al., 2002).
Furthermore, research shows that a strong correlation exists between relationship
satisfaction and carer burden, QoL and mood (Schrag et al., 2006). At least as large
a correlation was anticipated between CNPS and relationship satisfaction, given the
central role of the couple relationship and its potential to be affected for patients and
their carer when living with PD.
2.3 Recruitment procedure

The study was approved by the Kings College London Psychiatry and Midwifery
Research Ethics Committee in December 2011 (Appendix 1). Prospective
participants were informed of the study via Parkinsons UK online research forum
(http://www.parkinsons.org.uk/research), information presented at Parkinsons UK
local support groups (Appendix 2) and correspondence to members of the
Parkinsons UK Research Support Network (Appendix 3, 4). The full Participant
Information Sheet (Appendix 5) was available and accessible through all of these
forums. Interested participants contacted Dr Janssen using the contact details
provided in the advertising forums. Dr Janssen contacted them in response to
answer any questions and to screen them for eligibility.
2.4 Screening measures

Prospective participants were screened for eligibility screening using:
a) the study screening questionnaire (Appendix 6): A series of questions about
the couples eligibility for the study developed for this study.
b) the Modified Telephone Interview for Cognitive Status (TICS-M; Appendix 7):
The TICS-M tests many basic cognitive functions affected by dementia
including language, attention, orientation, and memory. It contains 26
specific questions, takes 10 minutes to perform, and has a scoring range of
zero to 50, with higher scores indicating less cognitive deficit. It has high
sensitivity (82.4%) and specificity (87%) in detecting amnestic MCI (aMCI)
using the score range of 19-35 (Cook et al., 2009; Yaari, Fleisher, Gamst,
Bagwell & Thal., 2006). As per the inclusion criteria, I screened for severe
cognitive impairment using. In accordance with previous studies a cut-off
36
score of 19 was used as this has been shown to have a sensitivity of 92%
and specificity of 80% in detecting dementia (Barber & Stott, 2004; Lines,
McCarroll, Lipton et al., 2003; Yaari et al., 2006).
Thirty four people with Parkinsons were screened via telephone. Two were
screened in person due to vocal difficulties. Thirty two were deemed eligible and
included in the study. One couple withdrew after screening. See Tables 2.1 and 2.2
for a description of the participants.
Table 2.1. Participant demographic characteristics

Patients Carers
Age
Mean years (SD) 62.48 (12.42) 61.74 (9.43)
Range 37 - 89 42 - 79
Gender
F (%) 14 (45.2) 16 (51.6)
M (%) 17 (54.8) 15 (48.4)
Civil Status
Married (%) 28 (90.3) 28 (90.3)
Unmarried, co-habiting (%) 3 (9.7) 3 (9.7)
Relationship Duration
Mean Years (SD) 31.84 (13.9) 31.84 (13.9)
Range 2 - 55 2 - 55
Education
Mean years (SD) 14.3 (3.41) 13.74 (3.15)
Range 8 - 20 9 - 20
Current Employment
Status
Full time (%) 7 (22.58) 10 (32.36)
Part time (%) 4 (12.90) 9 (29.03)
Retired age-related (%) 8 (25.81) 1 (3.23)
Retired health-related 12 (38.71) 10 (32.26)
(%)
SD = standard deviation
37
Almost two thirds of patients were retired due to either health status (38.7%) or age
(25.8%). Less than one third of patients were categorised as being at an early stage
of illness (28.1%) based on the fact they were not yet taking DRT or were using
dopamine agonists or MAO-i only (Coelho, Ferreira, Rosa & Sampaio, 2008; Dodel,
1998a; Dodel et al., 1998b; Jankovic, 2000; Olanow, Watts & Koller, 2001;
Schiehser et al., 2013). There were no differences in age, gender, level of
education, civil status, length of relationship between patients at an early stage of
PD and those at an advanced stage. There was a significant difference in duration
of disease between early stage (mean = 46.33, SD = 48.19) and advanced stage
(mean = 102.41, SD = 46.20; t(29) = -3.37, p = .002).
Table 2.2. Participants with PD: Clinical characteristics

Clinical Characteristic
Age at Diagnosis
Mean years (SD) 55.81 (10.49)
Range 30 - 79
Disease duration
Mean months since diagnosis (SD) 86.13 (48.74)
Range 24 - 240
a
Stage of condition
Early (%) 9 (29.03)
Advanced (%) 22 (70.97)
SD=standard deviation
a
Stage of PD is a variable created on the basis of patients medication use. Patients
categorised as early were not using any medication or were using dopamine agonists or
MAO-i only. Those categorised as advanced were using levodopa, COMT-i or both.
2.5 Assessment procedure

All participants were sent a series of questionnaires to fill in before the face-to-face
assessment. Each participant was asked to complete their questionnaires
independently, not to discuss their responses with their carer and to seal the
questionnaires in the separate envelopes provided (Appendix 8a and 8b).
Completion of questionnaires was taken as proof of consent. Questionnaires were
collected at the face-to-face assessment.
38
For the face-to-face assessment participants were either visited at their home or
they came to the Institute of Psychiatry. Prior to commencing assessment,
participants were asked to sign consent forms (Appendix 9). The face-to-face
assessment involved a semi-structured interview for each individual as well as a
further questionnaire. In addition, the person with PD completed some
neuropsychological tests. Each individual was assessed independently of the other
in a separate room. Throughout the assessment session, participants had the
opportunity to take breaks as necessary. Upon completion of the assessment,
participants were given the opportunity to ask any questions they had. Participants
responses to interviews and questionnaires were not discussed with their carer.
Participants were not paid for their time. Any travel expenses they incurred were
reimbursed.
Measures for people with PD

a) Pre-assessment
(i) Patient demographic questionnaire
Designed for this study to gather basic demographic information about the patient
including their date of birth, gender, years of education, employment status, current
or most recent occupation and length of current relationship with participating carer.
(Appendix 10).
(ii) Patient clinical questionnaire

Designed for this study to gather basic clinical information about the patients illness,
including date of diagnosis, medications used and any surgical treatment they have
for PD (Appendix 11).
(iii) Parkinsons Disease Activities of Daily Living Scale (PADLS)

The PADLS is a self-report measure assessing specific motor-related daily
functioning (Hobson, Edwards & Meara, 2001). The PADLS allows patients to
subjectively report the impact that Parkinsons has upon daily activities by choosing
one of five descriptions. Evidence shows that self-report ratings of disability are a
more reliable measures of disabilty in PD than clinician-rated scales (Ginanneschi et
al., 1988). The PADLS is a reliable measure of ADL, with acceptable construct
validity and internal consistency (Hobson et al., 2001; Martinez-Martin, Rodriquez-
Blazquez & Frades-Palo, 2008). The descriptions are scored one to five. Higher
scores indicate greater difficulty in activities of daily living (ADL). The score of
chosen description will be used as the outcome measure (Appendix 12a).
39
(iv) Hospital Anxiety and Depression Scale (HADS)
The HADS is a 14-item self-report measure of anxiety and depression (Zigmond and
Snaith, 1983). Seven items relate to anxiety (HADS-A) and seven to depression
(HADS-D). It is widely used in clinical practice and research. It has a good internal
consistency and test-retest reliability in people with PD (Schrag et al., 2007).
Research suggests there is a moderate correlation between the Anxiety and
Depression scales in the general adult population (r = .53; Crawford, Henry,
Crombie & Taylor, 2001). Moreoever, Leetjens and colleagues (Leetjens, Lousberg
& Verhey, 2001) found that the optimum discrimination between depressed and non-
depressed people with Parkinsons was found when the HADS total score was used.
The total score for both scales will be used as an outcome measure of psychological
distress.
(v) The EuroQoL-5D (EQ-5D)

The EQ-5D is a self-report measure of HR-QoL used in a range of clinical areas. It
consists of five domains (mobility, self care, usual activities, pain/discomfort, and
anxiety/depression) and produces a measure of quality-adjusted life years (QALYs).
It has good construct validity and is brief to complete (Brazier, Jones & Kind, 1993;
Brazier, Walters, Nicholl & Kohler, 1996). Each domain has a 3 point scale designed
to indicate the level of the problem, with higher scores reflecting greater problem
severity (Appendix 13).The HR-QoL-specific data in the present study will be
referred to as EQ-5D to avoid confusion with other measures of HR-QoL.
b) Assessment: Interview and questionnaires

Patients were asked to complete the following:
(i) Extended Neuropsychiatric Inventory Patient Version (NPI-E(P))
The Neuropsychiatric Inventory (NPI, Cummings 1997) is a semi-structured
interview to assess 12 different areas of behavioral functioning: delusions,
hallucinations, agitation, depression, anxiety, euphoria, apathy, irritability,
disinhibition, aberrant motor behaviour, night-time behavior and appetite/eating
change. Each question addressed changes in the patients behaviour since the
onset of the illness. The interviewee is first asked whether the behavioral change is
present or absent. If it is absent the interviewer continues to the next domain,
otherwise the interviewer asks about the frequency of the problem and severity
using the script provided in the manual. Intensity scores for each domain are
40
generated by multiplying frequency by severity (maximum score for each domain is
12). This original NPI was designed to ask carers or health professionals for their
perspective of the patients symptoms.
The NPI has high reliability, content validity and concurrent validity and is sensitive
to treatment effects (Cummings, 1997; Lykestos et al., 2002; Malloy & Grace). It is
widely used as a measure of neuropsychiatric symptoms in clinical trials for
cognitive disorders (Politis et al., 2004; Sink, Holden & Yakke, 2005) and has been
used in research into patients symptom awareness in AD (Vogel, Waldorff, &
Waldemar, 2010).
For the present study, the NPI schedule was used to assess delusions,
hallucinations, agitation, depression, anxiety, euphoria, apathy, irritability and
disinhibition. An additional domain was developed to assess memory and attention.
The memory and attention domain is structured in accordance with other NPI
domains and questions within the domain were informed by the literature on
memory and attention in PD and related conditions. For the NPI(P), the wording was
adapted to enable patients to report their perceptions of their own CPNSs and
behaviour.
In addition to these 10 domains, the interview was extended to include questions

about binge eating, pathological gambling, hypersexuality and compulsive shopping.
For each behaviour the Impulse Control Disease (ICD) severity rating scale (ICD-
SS; Okai, Samuel, AskeyJones, David & Brown, 2011) designed to assess
perceptions of the behaviour. The ICD-SS follows a similar format to the NPI. The
entire interview schedule used in this study will be referred to as the Extended
Neuropsychiatric Inventory (NPI-E). It comprises 14 domains. The total NPI-E score
is calculated by adding the domain scores. The NPI-E distress score is calculated by
adding the distress scores for each domain. The outcome measures used in the
analysis were the NPI-E domain scores, the NPI-E total score, the NPI-E distress
score for each domain and the NPI-E total distress (Appendix 14).
(ii) The Couples Satisfaction Index (CSI).

The CSI (Funk & Rogge, 2007) is a 32-item measure of level of satisfaction in
relationships. This measure of relationship satisfaction was developed using item
response theory analysis to select highly discriminating items from a pool of items
drawn from several existing measures. The CSI scales demonstrate excellent
41
internal consistency and strong convergent validity with existing measures of
relationship satisfaction. The total score was used as the outcome measure
(Appendix 15).
c) Assessment: Neuropsychological
(i) The Montreal Cognitive Assessment for Parkinsons Disease (MoCA)
The MoCA is an accurate and brief test suitable for monitoring cognitive impairment
across all stages of Parkinsons disease (Dalrymple-Alford et al., 2010). It assesses
cognitive function in seven domains including visuospatial, attention, naming,
language, executive, delayed recall and orientation. Evidence shows that it is
reliable, sensitive to mild cognitive impairment, has good convergent validity with
other widely-used cognitive measures (Gagnon, Postuma, Joncas, Desjardins &
Latreille, 2010; Gill, Freshman, Blender & Ravina, 2008). It is a recommended
measure of global cognitive functioning when diagnosing MCI in PD (Litvan et al.,
2012) and is considered the most appropriate scale for assessing cognitive
functioning in PD where objective cognitive decline is not the primary outcome
(Chou et al., 2010; Daley et al., 2011). The MoCA takes approximately 10 minutes
to administer. The total score was used as the outcome measure (Appendix 16).
(ii) Wechsler Test of Adult Reading (WTAR; Holdnack, 2001)

The WTAR is a reading test that provides an estimate of intellectual ability before
the onset of illness. It comprises a page of 50 written words which patients are
asked to read out loud. The words included in the test have atypical grapheme-to-
phoneme translations in an attempt to minimise the chance of good performance
due to application of pronunciation rules. It is designed for individuals aged 16-89
and takes approximately five minutes to administer. Evidence shows it has good
discriminant validity and is robust to suboptimal effort (Whitney, Shepard, Mariner,
Mossbarger & Herman, 2010) making it appropriate for populations in which apathy
is a common feature. It is a recommended measure of pre-morbid FSIQ when
diagnosing MCI in PD (Litvan et al., 2012). The estimated pre-morbid FSIQ was
calculated from the raw score and used the outcome measure.
(iii) The Brixton Spatial Anticipation Test (BSAT; Burgess & Shallice, 1997)
The BSAT is rule detection, rule following and rule switching task which tests
executive functioning. The test book comprises 56 pages. On each page 10 circles
are arranged in two rows of five, one of the circles is coloured blue. Each page has
the same basic design except that the blue circle will move around from page to
page according to various patterns that will come and go without warning.
42
Participants are asked to predict the expected position of the blue circle on the next
page. The number of total errors was used as the outcome measure. The BSAT is
considered to be sensitive to frontal impairments (Strauss, Sherman & Spreen,
2006) and has been used in other studies of CNPS in PD (e.g,. Cox, 2009; Edelstyn,
Mayes, Condon, Tunnicliffe & Ellis, 2007). Evidence shows it has a large effect size
between health controls and patients with frontal lesions (Crawford & Henry, 2005)
and acceptable internal consistency. It is considered less time-consuming and less
stressful than comparable tasks such as the Wisconsin Card Sorting Task (WCST)
making it more feasible for clinical research. It is appropriate for PD samples as the
test is verbal and not time-dependent making it suitable for individuals with
difficulties in reading or movement.
Measures for carers

a) Pre-assessment:
(i) Carer demographic questionnaire
Designed for this study to gather the same basic demographic information about the
carer as that for the patient (Appendix 10).
(ii) Parkinsons Disease Activities of Daily Living Scale (PADLS) Carer

Version.
The carer version of PADLS was developed for this study to allow carers to
subjectively report the impact that Parkinsons has upon the daily activities of the
patient. It is based on the original version for patients and the descriptions of the
impact of Parkinsons are identical to the original (patient) version (Appendix 12b).
(iii) Hospital Anxiety and Depression Scale (HADS) (see above)
(iv) The EQ-5D (see above)
(v) The Caregiving Distress Scale (CDS)

The CDS is a 17-item scale designed to measure the distress arising from
caregiving for among carers of people with
PD (Cousins, Davies, Turnbull & Playfer, 2002). The CDS was developed from a
range of caregiving measures and comprises five areas: relationship distress,
emotional burden, social impact, care-receiver demands and personal cost. Such
distinction between domains enable it to be used to identify the area(s) of caregiving
requiring attention where distress reduction is the aim. The scale has high reliability
43
and validity and is easy to administer. The total score across each domain will be
used as outcome measures (Appendix 17).
b) Assessment: Interview and questionnaires

(i) Extended Neuropsychiatric Inventory Carer Version (NPI-E(C))
The NPI-E(C) is a semi-structured interview to assess the carers perceptions of the
patients CNPS. It comprises the same domains of behavioural functioning as the
NPI-E(P). The total NPI score and total NPI distress score were used as the
outcome measures (Appendix 14).
(ii) The Couples Satisfaction Index (CSI) (see above)
2.6 Data handling and statistical analysis

Data handling and statistics
The Statistical Package for the Social Sciences (SPSS) Version 20 was used to
analyse collected data.
Data protection
Hard copies of patient data were anonymised and stored in a locked filing cabinet in
the Institute of Psychiatry. All voice-recorded data was transferred onto a password
protected external hard drive and all tapes were stored in a secure filing cabinet.
Treatment of missing data

Data cleaning was performed to identify and inform management of any missing
data. Missing data were excluded from individual analyses but cases remained in
the dataset. Some participants became fatigued before the data collection was
completed and two had vocal difficulties which prohibited their completion of the
WTAR. The number of participants with data missing on each test is outlined in the
Results sections.
Data cleaning
To enable testing of assumptions made by parametric statistical analyses all
variables used in the analyses were checked for outliers, distribution and
homogeneity of variance within the data (Appendix 18).
44
As parametric analyses are sensitive to the presence of outliers, all outliers were
identified using graphical methods (SPSS Explore, box-whisker plots). Using criteria
that identifies outliers as any score more than three standard deviations above or
below the variable mean no outliers were identified. Given the small sample size,
however, variables were transformed to identify whether this would reduce the
impact on the analysis of any skewed data. Sensitivity analyses were conducted
before and after adjustment to assess the impact of adjusting the scores on
analysis. Following statistical advice, untransformed data were used for remaining
analyses (Appendix 18).
Descriptive statistical tests were used to screen data for normality. Normality was
examined using a combination of histograms, Q-Q plots and the adjusted Kolmogrov
Smirnov statistic. Levenes test of equality of variance was performed to examine
homogeneity of variance. When assumptions were not met, non-parametric
methods were employed.
Correction for multiple testing

Following statistical advice, a p-value of p<0.01 was adopted to correct for the
number of comparisons and inflated risk of Type I errors using individual
assessment scores. This was undertaken with the aim of reducing the likelihood of
making Type I errors through undertaking multiple comparisons.
Analyses
Following statistical advice, in order to test Hypotehsis 1, Chi-square tests were
performed to compare the frequency with which difficulties with activities of daily
living (PADLS) were rated as present or not by patients and carers. Chi-square
tests were performed to compare the frequency with which each CNPS was
reported as present or not and clinically significant or not by patients and carers.
Pairwise two-tailed t-tests were used to compare patient and carer mean ratings of
patient CNPS intensity and CNPS-related distress. Patient and carer self-rated
CNPS-related distress were compared using independent two-tailed t-tests to
assess inter-group differences in self reports.
Before testing Hypothesis 2, preliminary analyses were performed to compare

patients and carers ratings of HADS distress, HR-QoL and relationship satisfaction.
Chi-square tests were performed to compare the frequency with which patients and
45
carers gave ratings on the HADS-A and HADS-D that were above and below the
clinical cut off (8+). Independent t-tests were performed to compare patients and
carers mean self-ratings of HADS distress (HADS total), HR-QoL (EQ-5D) and
relationship satisfaction (CSI).
In order to test Hypothesis 2, correlations were performed to assess whether patient
CNPS intensity was related to patients and carers reports of relationship
satisfaction (CSI), QoL (EQ-5D), distress (HADS total) and carers experiences of
distress (CDS total). All correlations were two-tailed bivariate unless otherwise
stated. Point bi-serial correlations were used for binary variables and are denoted by
rpb.
In order to test Hypothesis 3, an ordinal variable was created to represent the

frequency of discordance within couples in responses to the the NPI-E interview
screening question for each domain. The screening question asks the participant to
confirm or deny the presence of the CNPS in question. A continuous variable was
also created to measure the amount and direction of intra-couple differences
between carer and patient total CNPS intensity scores. This was calculated by
subtracting patient-rated total CNPS intensity score from carer-rated total CNPS
intensity score. This is similar to approaches taken in previous research
investigating patient-carer discordance in perceptions of cognitive decline in AD
(Feher et al., 1991).
Regression analysis was used in order to answer the research question seeking to
identify the best predictors of HADS distress and relationship satisfaction for patient
and carers. In accordance with statistical advice, the stepwise forward procedure
was used (Field, 2009). Variables entered into multiple regression analyses to
predict intra-couple discordance were selected on the basis of whether they were
significantly correlated with the outcome variable being predicted (patient HADS
distress, patient relationship satisfaction, carer HADS distress, carer relationship
satisfaction). Prior to entry, correlations were performed to check for multicollinearity
between the variables considered. Where two variables were highly correlated, the
variable most highly correlated with the outcome variable was kept for entry into the
regression model.
46
3. RESULTS
3.1. Differences in patients and carers perceptions of patients physical,

Testing Hypothesis 1: Patients will rate their physical, cognitive and

neuropsychiatric symptoms lower than their carers.
To assess the level of physical disability the PADLS was administered to patients
and their carers. The results of their ratings are in Table 3.1.
Table 3.1. Results of the PADLS according to patients and carers

Patient Self-Rated Carer-Rated
Percentage N Percentage N
1 - no difficulties 9.7% 3 12.9% 4
2 - mild 51.6% 16 51.6% 16
3 - moderate 25.8% 8 25.8% 8
4 high levels 9.7% 3 3.2% 1
5 - extreme difficulties 3.2% 1 6.5% 2
PADLS: Parkinsons Activities of Daily Living Scale
As can be seen in Table 3.1, as a group carers and patients reported similar
frequencies of levels of patient disability. Almost two-thirds of patients and carers
rated patients level of disability (PADLS) as either mild or non-existent (Table 3.1).
Three patients and one carer reported a high level of difficulty. One patient and two
carers described the level of patient disability as extreme. The number of patients
and carers who rated physical difficulty as present (PADLS scores of 2, 3, 4, or 5)
and not present (score of 1) were compared using a chi-square test ( = .161, p =
.688). No significant association was found between role (patient, carer) and
frequency of reports of physical difficulty.
Before testing the differences in carer and patient perceptions of patient cognitive
and neuropsychiatric symptoms, patients objective cognitive performance was
assessed using standardised neuropsychological measures. As shown in Table 3.2,
pre-morbid full scale IQ was above average range (>80) for all but one patient who
scored above the borderline range (FSIQ > 70). The majority of patients (86.7%)
global cognitive functioning (MoCA) was above the clinical cut-off point (24). Only
four scored below the cut point indicating cognitive impairment. The majority of
47
patients demonstrated unimpaired executive functioning (scaled score > 4). As
expected, there was a higher proportion of impairment in executive function than
other cognitive domains.
Table 3.2.Results of patients neuropsychological assessments

Measure Mean SD* Range Impaired Unimpaired
Pre-Morbid Full-Scale IQ % n % n
(WTARa)i
Raw total (/50) 43 7.2 16 50
FSIQ 106.52 9.0 77 - 117 0% 0 100% 29
Global functioning
(MoCAb)ii
Total 25.43 5.0 9 30 13.3% 4 87.7% 26
Executive Functioning
(BSATc)iii
Total errors 23.07 13 7 46
Scaled score 4.56 3.1 1 10 38.7% 12 61.3% 15
a b
SD=standard deviation; WTAR: Weschler Test of Adult Reading; MoCA, Montreal Cognitive
c
Assessment for Parkinsons Disease (Clinical cut points <24); BSAT: Brixton Spatial Anticipation Test;
i
Pre-morbid full-scale IQ scores are missing for two patients. One patient did not complete this
measure due to fatigue, the other patient declined due to vocal difficulties.
ii
Global cognitive functioning score is missing for one patient who chose to terminate this part of the
assessment before completing at least 90% of it, thereby preventing a mean substitute.
iii
Executive functioning scores are missing for four patients who declined to complete this measure.
One patient declined to complete this measure. Three patients chose to terminate this part of the
assessment before completing at least 90% of it, thereby preventing a mean substitute.
In order to test patients and carers perceptions of patient CNPS, the NPI-E was
administered to patients and carers separately. The screening question for each
CNPS domain asks the participant whether or not the particular CNPS is present.
Participants respond either yes or no. As described previously, if they respond
yes they are invited to rate the intensity (frequency x severity). Domains are
considered to be a clinically significant problem if the symptom intensity is rated 4 or
higher. Results for patients and carers responses to the NPI-E for each CNPS
domain are described in Table 3.3.
48
Table 3.3. Patients and carers reports of presence and intensity of patient cognitive and neuropsychiatric
symptoms (CNPS)
NPI-E Patients (n = 31) Carers (n = 31)
Domain
Symptom Intensity Significant Symptom Intensity Significant
a b a b
Present Mean Problem Present Mean Problem
% n (SD) Range % n % n (SD) Range % n
Delusions 9.7% 3 5.33 28 6.5% 2 9.7% 3 6.00 66 9.7% 3

(3.06) (0)
Hallucinations 32.4% 10 2.80 16 12.9% 4 35.5% 11 3.32 16 16.1% 5

(1.75) (2.05)
Agitation / 38.7% 12 3.46 16 12.9% 4 54.8% 17 4.35 1 12 32.3% 10

Aggression (1.83) (3.10)
Depression 51.6% 16 5.56 1 12 29.0% 9 71.0% 22 3.80 19 48.4% 15

(3.58) (2.05)
Anxiety 54.8% 17 4.88 1 12 32.3% 10 67.7% 21 6.23 1 12 48.4% 15

(3.77) (3.64)
Euphoria 3.2% 1 1.0 11 0% 0 6.5% 2 2.5 23 0% 0

(0) (0.71)
Apathy 54.8% 17 4.24 18 29.0% 9 35.5% 11 6.36 2 12 25.8% 8

(2.44) (3.53)
Disinhibition 35.5% 11 3.36 19 9.7% 3 45.2% 14 2.64 1 12 6.5% 2

(2.34) (2.84)
49
NPI-E Patients Carers
Domain
Symptom Intensity Significant Symptom Intensity Significant
a b a b
Present Mean Problem Present Mean Problem
c d
% n (SD) Range % n % n (SD) Range % n
Irritability 38.7% 12 3.38 16 19.4% 6 54.8% 17 4.21 19 32.3% 10

(1.64) (2.58)
Memory and 74.2% 23 3.82 1 12 32.3% 10 64.5% 20 4.16 18 38.7 12

Attention (2.48) (2.21)
Binge Eating 6.5% 2 3.50 34 3.2% 1 6.5% 2 4.00 26 3.2% 1

(0.71) (2.83)
Pathological 6.5% 2 9.00 6 12 6.5% 2 6.5% 2 9.00 6 12 6.5% 2

Gambling (4.24) (4.24)
Hyper- 9.7% 3 2.33 14 3.2% 1 6.5% 2 3.00 24 3.2% 1

sexuality (1.53) (1.41)
Compulsive 6.5% 2 1.25 02 0% 0 6.5% 2 1.67 12 0% 0

Shopping (0.50) (0.58)
a b
SD=Standard deviation; NPI-E: Extended Neuropsychiatric Inventory; n 1; NPI-E clinical cut-off (4) recommended for PD (Dubois et al., 2007);
c d
percentage of the whole patient sample (total n = 31); percentage of the whole carer sample (total n = 31)
50
Table 3.3 shows the percentage of patients and carers who reported the symptom
as present. It shows the mean intensity rating given to each symptom by patients
and carers who confirmed that the symptom was present. Table 3.3 also shows the
percentage of the whole sample of patients and carers whose intensity ratings fell
within the clinical range.
As shown in Table 3.3, the most frequently reported symptom among patients was
decline in memory and attention. Carers most frequently reported patient
depression. Over half of patients also reported anxiety, apathy and depression and
over a third reported agitation and aggression, irritability and disinhibition.
Approximately two-thirds of carers also reported patient anxiety and decline in
memory and attention and over half reported irritability and agitation and aggression.
In total, 121 symptoms were reported as present by patients whereas 146
symptoms were reported as present by carers. The number of patients and carers
who rated CNPS as present and not present were compared using a chi-square test
( = 11.456, p = .246). No significant association was found between role (patient,
carer) and frequency of reports of CNPS presence.
Symptoms most frequently reported by patients as clinically significant (intensity

rating 4) included decline in memory and attention and anxiety. Symptoms most
frequently reported as clinically significant by carers were patient depression and
anxiety. Carers gave more symptom intensity ratings that were clinically significant
(n=94) than patients (n=61). The number of patients and carers whose CNPS
intensity ratings fell within the clinical range were compared using a chi-square test
( = 5.558, p = .475). No significant association was found between role (patient,
carer) and frequency of ratings which fell in the clinical range.
Of the patients and carers who confirmed symptoms of apathy and depression, over
half gave intensity ratings within the clinically significant range. Apathy was
confirmed by approximately half of patients and one-third of carers and at least half
of these patients and carers intensity ratings of apathy were within the clinical
range. The presence of hallucinations was confirmed by approximately one-third of
patients and carers. Less than half of the intensity ratings for hallucinations were
clinically significant. Over half of the patients and carers who confirmed presence
irritability rated the intensity of irritability as clinically significant. Over half of carers
51
who confirmed agitation and aggression gave symptom intensity ratings within the
clinical range. As expected, less than 10% of patients and carers confirmed the
presence of any ICD-related behaviour (hypersexuality, pathological gambling,
binge eating, compulsive shopping).
In order to compare patients and carers perceptions of CNPS intensity, CNPS-

specific exploratory analyses were performed for the CNPS that were reported as
present by at least five patients or carers. Table 3.4 displays the intensity ratings.
For each CNPS, chi-square tests were performed to compare the number of
patients and carers who reported the CNPS to be present or not. Paired t-tests were
performed to compare patients and carers intensity ratings. Chi-square tests were
performed to compare the number of patients and carers whose ratings of CNPS
were in the clinical range (intensity score 4) and not (score <4) for each CNPS. A
conservative p-value of .01 was adopted as an indicator of significance.
As shown in Table 3.4, patients and carers did not differ significantly in the
frequency with which they reported a CNPS to be present for any of the CNPS.
Patients and carers ratings of CNPS intensity did not differ significantly for any
CNPS. There was a trend for carers to give higher intensity ratings than patients for
anxiety and agitation and aggression.
52
Table 3.4. Comparisons of patients and carers perceptions of patient CNPS presence and intensity
CNPS Symptom Intergroup Intensity Intergroup Significant Intergroup

Present comparison comparison Problem b comparison
%a n ( ) Mean SD* (t-score) %c n ( )
Hallucinations
Patient 32.4% 10 .072 2.80 1.75 -.489 40% 4 .130
Carer 35.5% 11 3.32 2.05 45.5% 5
Agitation /
Aggression
Patient 38.7% 12 1.620 3.46 1.83 -2.098^ 33.3% 4 3.321
Carer 54.8% 17 4.35 3.10 58.8% 10
Depression
Patient 51.6% 16 2.447 5.56 3.58 .299 56.3% 9 2.447
Carer 71.0% 22 3.80 2.05 61.2% 15
Anxiety
Patient 54.8% 17 1.088 4.88 3.77 -2.110^ 58.8% 10 1.676
Carer 67.7% 21 6.23 3.64 71.4% 15
Apathy
Patient 54.8% 17 2.345 4.24 2.44 .108 52.9% 9 .081
Carer 35.5% 11 6.36 3.53 72.7% 8
Disinhibition
Patient 35.5% 11 .603 3.36 2.34 -.055 27.3% 3 .218
Carer 45.2% 14 2.64 2.84 14.3% 2
53
CNPS Symptom Intergroup Intensity Intergroup Significant Intergroup
Present comparison comparison Problem b comparison
%a n ( ) Mean SD (t-score) %c n ( )
Irritability
Patient 38.7% 12 1.620 3.38 1.64 -2.009 50.0% 6 1.348
Carer 54.8% 17 4.21 2.58 58.8% 10
Memory and
Attention
Patient 74.2% 23 .683 3.82 2.48 .311 43.5% 10 .282
Carer 64.5% 20 4.16 2.21 60.0% 12
^p < .05; *p < .01; **p < .001; = Chi-square; SD = standard deviation
54
Results for patients and carers ratings of total CNPS intensity and patient CNPS-
related distress are shown in Table 3.5. Paired t-tests did not show significant
differences between patient and carer ratings of CNPS intensity (t (30) = -1.154, p =
.258) or patient CNPS-related distress (t (29) = -1.558, p = .130).
Table 3.5. Patients and carers ratings of total patient CNPS and CNPS-related
distress
Extended Patient Self-Rated Carer-Rated
Neuropsychiatric
Inventory (NPI-E) Mean SD* Range Mean SD* Range
NPI-E total intensity 17.16 13.8 0 45.5 20.43 14.6 0 48

score
NPI-E total patient 9.16 i 10.7 6 27 11.63 ii 7.9 0 30
distress score
i
SD=standard deviation; CNPS-related patient self-rated distress score is missing for 1 patient who
ii
declined to complete this measure; CNPS-related carer-rated patient distress score is missing for 1
carer who declined to complete this measure.
In summary, Hypothesis 1 could not be confirmed. Patients and carers did not differ
significantly in their ratings of patient physical disability, CNPS intensity or patient
CNPS-related distress. The majority of patients and carers reported low levels of
physical disability. On objective neuropsychological measures, all patients
demonstrated pre-morbid IQ as within or above average parameters, a minority of
patients had impaired global cognitive functioning and over one-third demonstrated
impaired executive functioning. Patients most frequently reported CNPS was
decline in memory and attention whereas for carers it was depression. Patients
rated anxiety and decline in memory and attention as the most intense symptoms.
Carers rated patients depression and anxiety as the most intense and gave more
ratings within the clinical range than patients. At least half of patients and carers
identified symptoms of depression, anxiety, agitation and aggression, apathy,
irritability, and decline in memory and attention. Of those who confirmed presence of
these symptoms, approximately half or more gave intensity ratings within the clinical
range.
55
3.2 Relationships between patient and carer ratings of CNPS intensity, HADS
distress and relationship satisfaction
Testing Hypothesis 2: Patient and carers perceptions of CNPS intensity will be

associated with greater HADS distress and lower relationship satisfaction.
The HADS was used to assess patients and carers global distress. The self-
reported data are shown in Table 3.6. Approximately two-thirds of patients were not
anxious or depressed. Two patients rated themselves as severely anxious. One
patient rated themselves as severely depressed. Approximately half of carers were
below the clinical cut off for anxiety with two carers rating themselves as severely
anxious. Over three-quarters of carers were below the clinical cut off for depression.
No carer rated themselves as severely depressed. Independent t-tests showed
patient and carer total HADS distress scores did not differ significantly (t (60) = .360,
p = .720).
Table 3.6. Patient and carer self-rated mood and distress

Hospital Anxiety and Patient Self-Rated Carer Self-Rated
Depression Scale Mean SD* Range Mean SD* Range
(HADS)
Total score 12.29 8.08 1 27 11.55 8.1 1 27

Anxiety
total score 6.77 5.05 0 17 7.35 4.81 1 16
Clinical cut pointsa % n % n
normal 61.3% 19 51.6% 16
mild 12.9% 4 16.1% 5
moderate 19.3% 6 25.8% 8
severe 6.5% 2 6.5% 2
Depression
total score 5.52 4.23 1 15 4.19 3.59 0 12
Clinical cut pointsa % n % n
normal 64.5% 21 77.4% 24
mild 25.8% 7 12.9% 4
moderate 6.5% 2 9.7% 3
severe 3.2% 1 0% 0
a
*standard deviation; normal: <8; mild: 8 10; moderate: 11 15; severe 16+
56
Chi-square tests were performed to compare the number of patients and carers
within the non-clinical category (normal) and any of the clinical categories (mild,
moderate, severe) of anxiety and depression. No significant associations were found
between role (patient, carer) and frequency of scores that fell within the clinical
range for for anxiety ( = .590, p = .442) and depression ( = 1.253, p = .263).
In order to assess patient and carer HR-QoL participants completed the EQ-5D.
Higher scores indicate poorer HR-QoL. Relationship satisfaction was measured
using the CSI. Higher scores indicate greater relationship satisfaction. In each
couple patients and carers completed these measures without conferring. Results
are shown in Table 3.7.
Table 3.7. Patient and carer self-rated EQ-5D and relationship satisfaction
Measure Patient Self-Rated Carer Self-Rated
EQ-5Da Mean SD* Range Mean SD* Range

Total score 8.39 2.47 5 15 6.13 1.3 59
Relationship
Satisfaction (CSIb)
Total score 129.58 21.8 74 157 126.53 25.1 74 159
c
Clinical cut points % n % n
distressed 17.2% 5 19.4% 6
satisfied 82.8% 24 i 80.6% 25 ii
a b c
SD=standard deviation; EuroQoL 5D (EQ-5D); Couple Satisfaction Index (CSI); <104.5 (distressed
in relationship), >104.5 (satisfied in relationship)
i
Relationship satisfaction scores from two patients are missing due to these patients being unable or
unwilling to complete at least 90% of the measure
ii
The relationship satisfaction score from one carer is missing due to the participant not completing at
least 90% of the measure
Independent t-tests were performed to test the difference between patients and
carers self-reported EQ-5D. Levenes test showed that equal variances could not be
assumed. Self-reported EQ-5D was significantly poorer for patients than carers (t
(45.1) = 4.510, p =.000). Over four-fifths of patients and carers were above the
clinical cut point for relationship satisfaction. Independent t-tests did not show a
significant difference in self-reported relationship satisfaction between the groups (t
(58) = .501, p = .618).
57
Chi-square tests were performed to compare the number of patients and carers
within the distressed and satisfied categories of relationship satisfaction. No
significant associations were found between role (patient, carer) and frequency of
self-reported relationship satisfaction ( = .334, p = .563).
Figure 3.1. Carer self-rated CNPS-related distress.
Carers were asked to rate their own levels of distress in relation to each patient
CNPS that they confirmed as present on the NPI-E. The domain-specific distress
ratings were added to give a total carer self-reported CNPS-related distress score.
Carers ratings of their own CNPS-related distress are shown in Figure 3.1. Lower
scores indicate less distress. One-third of carers scored six or less. Ten percent of
carers rated CNPS-related distress above 20. Carers ratings of their own CNPS-
related distress were compared with their ratings of patient CNPS-related distress
and patient self-rated CNPS-related distress, the means of which are shown in
Table 3.5. Carers ratings of their own CNPS-related distress were not significantly
different to their ratings of patients CNPS-related distress (t (29) = -.798, p = .432)
or to patients self-reported ratings of CNPS-related distress (t (59) = -1.406, p =
.165).
58
Table 3.8. Carer self-rated distress
Distress Carer Self-Rated
Mean SD* Range
CNPS-related Carer Distress

NPI-Ea total distress score 12.27 9.1 0 30
Caregiving Distress Scale
(CDS)
Total score 22.26 17.5 0 62
Relationship distress 4.21 4.2 0 14
Emotional burden 5.23 4.5 0 15
Care-receiver demands 3.03 3.4 0 12
Social impact 5.03 4.0 0 12
Personal cost 4.85 3.5 0 12
Carers were also asked to complete the CDS as a measure of their self-reported
distress in relation to their care-giving role. Table 3.8 shows the total caregiving-
related distress score as well as scores for each domain of caregiving-related
distress. Lower scores indicate less distress. Paired t-tests were performed to
identify any significant differences between domains. As shown in Table 3.8,
caregiver distress was similar for relationship distress, emotional burden, social
impact and personal cost. Caregiving distress relating to care-receiver demands
was significantly lower than caregiving distress relating to emotional burden (t(30) =
3.831, p = .001), personal cost (t(30) = 3.338, p = .002), social impact (t(30) = 3.145,
p = .004), and relationship distress (t(30) = 3.010, p .005). Ratings of the five CDS
domains were all highly correlated with the total CDS score (Pearsons r .825). For
remaining analyses the CDS total score is used as the measure of carer distress in
relation to the care-giving role.
The relationships between the main outcome measures (HADS distress and
relationship satisfaction) and clinical and demographic variables were explored for
both groups separately by performing correlational analyses. As previously
mentioned (Methods Section 2.6), given the number of correlations performed, a
conservative p-value of .01 was adopted as an indicator of significance in attempt to
reduce the likelihood of Type I errors. Results of patient-specific correlations are
reported in Table 3.9. Results of carer-specific correlations are reported in Table
3.10. All correlations reported are Pearsons two-tailed r unless otherwise stated.
59
Table 3.9. Coefficients for correlations between patient demographic and clinical
data and patient HADS distress and relationship satisfaction
Outcome Variable
Data Category HADS Distress Relationship
Satisfaction
Demographics
Age (years) .002 .091

Gendera, b -.196 .111
Relationship Duration (years) .183 .120
Education (years) .116 -.157
Disease
Age at Diagnosis (years) -.236 .191

Duration (months) .249 -.313
Illness Stagea,c -.377^ -.116
Disability .426^ -.072
Cognitive
Global functioning (MoCA) .010 .074

Executive Functioning (Brixton) .056 -.260
Pre-Morbid Full-Scale IQ (WTAR) -.002 -.071
Neuropsychiatric
CNPS Intensity (NPI-E total intensity .691** -.002

score) Patient, self-rated
CNPS Distress (NPI-E total distress .645** -.024
score) Patient, self-rated
CNPS Intensity (NPI-E total intensity .419^ -.115
score) Patient, Carer-rated
CNPS Distress (NPI-E total distress .372^ -.124
Distress (HADS) Patient, self-rated -.210
Quality of Life
EQ-5Dd .671** -.097

a b c
^p < .05; *p < .01; **p < .001; Pearsons point-biserial r (rpb) ; M = 0, F = 1; Early = 0, Advanced = 1;
d
Higher scores indicate poorer EQ-5D
As shown in Table 3.9, patient HADS distress is significantly positively correlated

with disease duration, self-rated intensity of CNPS, CNPS-related patient distress
(NPI-E total patient distress score), and poorer EQ-5D (i.e. higher scores on EQ-
5D). Carer-rated CNPS intensity and carer-rated CNPS-related patient distress both
showed a trend (p<.05) towards a positive association with patient HADS distress.
60
There was a trend (p<.05) towards a negative association with illness stage and a
positive association with level of disability. Patient HADS distress was not correlated
with demographic or cognitive variables. No correlations were found between patient
variables and patient relationship satisfaction.
Table 3.10. Coefficients of correlations between carer demographic and clinical

variables and carer HADS distress and relationship satisfaction
Outcome Variable
Data Category HADS Distress Relationship Satisfaction
Carer demographics
Age (years) -.311 .340

Gendera, b -.071 -.124
Relationship Duration (years) .005 .089
Education (years) -.192 -.091
Patient Cognitive
Global functioning (MoCA) -.151 -.030

Executive Functioning (Brixton) -.056 .009
Pre-Morbid Full-Scale IQ (WTAR) -.271 .000
Carer neuropsychiatric
CNPS Intensity (NPI-E total intensity .401^ -.277

CNPS Distress (NPI-E total distress .463* -.162
CNPS Distress (NPI-E total distress .624** -.248
score) Carer, Self-rated
Caregiving Distress (CDS) .650** -.547**
Carer-rated HADS Distress -.331
Carer outcome
(EQ-5Dc .627** -.067

a b c
^p < .05; *p < .01; **p < .001;; Pearsons point-biserial r (rpb) ; M = 0, F = 1; Higher scores indicate
poorer EQ-5D
Correlations between carer HADS distress, carer relationship satisfaction and carer
demographic and clinical variables are outlined in Table 3.10. A conservative p-
value of .01 was adopted as an indicator of significance.
61
As shown in Table 3.10, carer distress (HADS total score) was significantly
positively correlated with carer-rated CNPS-related distress for patients (NPI-E total
patient distress score, carer-rated) and self-reported CNPS-related carer distress
(NPI-E total carer distress score), and poorer EQ-5D (i.e. higher scores on EQ-5D).
There was a trend towards a positive relationship between carer HADS distress and
carer-rated CNPS intensity. Carer distress in relation to their care-giving role (CDS)
was positively correlated with HADS distress. Carer HADS distress was not
correlated with carer demographic variables or patient cognitive functioning. Carer
relationship satisfaction was significantly negatively correlated with carers distress
in relation to their care-giving role (CDS).
In summary, patient and carer neuropsychiatric data show that approximately two-
thirds of patients were not anxious or depressed. Over three-quarters of carers were
not depressed and approximately half were not anxious. One patient was severely
depressed. Two patients and two carers were severely anxious. Patients report a
lower EQ-5D than carers. Most couples are satisfied with their relationships and the
groups did not differ on relationship satisfaction. Emotional burden is a greater
source of caregiver distress than patient demands. There were no differences
between self-reported levels of CNPS-related distress for patients and carers or
between carers reports of their own CNPS-related distress and their perceptions of
patients CNPS-related distress. As predicted by Hypothesis 2, among patients
ratings of CNPS intensity were positively correlated with HADS distress. Carers
HADS distress scores were not associated with their ratings of patient CNPS
intensity. There was no evidence of any relationship between ratings of CNPS
intensity and relationship satisfaction for carers or patients. HADS distress and
relationship satisfaction showed no relationship to patient and carer demographic
variables and patient cognitive variables. Among carers, greater caregiving-related
distress was associated with lower relationship satisfaction.
3.3. Discordance within couples between carer and patient perceptions of

Testing Hypothesis 3: Discordance between carer and patient perceptions of the

patient CNPS presence and intensity will be associated with worse relationship
satisfaction and HR-QoL and greater reports of distress for patients and carers.
62
To assess for discordance in patients and carers perceptions of the presence
CNPS, preliminary analyses identified any intra-couple discordance in confirmation
of symptom presence. Data were based on the responses given to the NPI-E
interview screening question for each CNPS. The screening question asks the
participant to confirm or deny the presence of the CNPS in question. Table 3.11
shows the number of couples in which at least one person (patient and/or carer)
confirmed the presence of the symptom and the percentage of couples in which
there was disagreement between patient and carer regarding the presence of the
symptom.
As shown in Table 3.11, there was evidence of discordance in couples for each of
the NPI-E domains. Among couples who were discordant, more carers (n=56) than
patients (n=41) reported symptom presence. Only symptoms which were perceived
to be present by at least one member of at least 17 couples (>50%) of couples are
considered in more detail here. Symptoms most frequently reported by at least one
member of the couple were anxiety and decline in memory and attention.
Approximately 50% of couples had a least one member who confirmed the presence
of hallucinations, agitation and aggression, depression, anxiety, apathy,
disinhibition, irritability and decline in memory and attention. The greatest rates of
discordance were found for hallucinations followed by disinhibtion, with over two-
thirds of couples disagreeing on their presence. At least 50% of couples disagreed
about the presence of irritability, agitation and aggression, apathy and delusions.
As shown in Table 3.11, in couples who were discordant in their perceptions of the
presence of symptoms of memory and attention problems, patients confirmed the
symptoms two times more often than carers. Among discordant couples, symptoms
of apathy were confirmed at least four times as often by patient as carers. In
contrast, symptoms of agitation and aggression, irritability, anxiety, depression were
all confirmed at least twice as often by carers than patients in discordant couples.
63
Table 3.11. Frequency of patients and carers confirming the presence of specific
CNPS
NPI-E Domain Couples in which at Reporting partner Discordant
least one person among discordant couples (%)
confirmed the CNPS couples (n)
(n) Carer Patient
Delusions 4 1 1 50.0
Hallucinations 17 7 6 76.5
Agitation and 20 8 3 55.0

Aggression
Depression 23 7 1 34.8
Anxiety 25 8 4 48.0
Euphoria 3 2 1 100.0
Apathy 19 2 8 52.6
Disinhibition 19 8 5 68.4
Irritability 20 8 3 55.0
Memory 25 2 5 28.0
/Attention decline
Binge eating 3 1 1 66.7
Pathological 2 0 0 0
gambling
Hypersexuality 3 0 1 33.3
Compulsive 5 1 2 60.0
shopping
In order to assess whether intra-couple discordance in perceptions of CNPS

presence is associated with relationship satisfaction, EQ-5D and HADS distress a
variable was created representing the total number of times each couple were
discordant in their reports of the presence of a CNPS when completing the NPI-E.
As shown in Figure 3.2, the total number of domains in which couples were
discordant ranged from zero to six with a mode and median of three domains.
Almost two-thirds of couples (64.5%) were discordant on three domains or fewer,
with one couple (3.2%) showing no discordance and three couples (9.7%) showing
discordance in six domains.
64
Figure 3.2. Frequency of discordance within couples in reporting of CNPS presence.
The relationships between the main outcome measures (HADS distress and
relationship satisfaction) and discordance in perceived presence of CNPS were
explored for both groups separately by performing two-tailed correlations analysis.
As previously mentioned (Methods Section 2.6), given the number of correlations
performed, a conservative p-value of .01 was adopted as an indicator of
significance. No significant association was found between frequency of
discordance in perceived presence of CNPS and HADS distress for patients (r =
.049, p = .795) or carers (r = .310, p = .089) or relationship satisfaction for patients (r
= -.120, p = .534) or carers (r = -.067, p = .721).
In order to measure intra-couple discordance in ratings of total patient CNPS

intensity, a continuous discordance score was created by subtracting patient self-
rated total CNPS intensity scores from carer-rated total CNPS intensity scores. The
frequency distribution of carer-patient discordance score is shown in Figure 3.3. All
couples had some level of discordance with the minimum being 1 point of difference
on the CNPS total intensity measure. The extent of the discordance within couples
ranged from -39 to 35.5. A positive discordance score indicates that carer ratings
are higher than patient ratings. A negative discordance score indicates that patient
65
ratings were higher than carer ratings. In 58.1% of couples (n=18), patients rated
their CNPS as less intense than carers.
Figure 3.3. Discordance between patient and carer ratings of CNPS intensity.
Correlations were performed to investigate the relationships between extent and

direction (C>P or P>C) of discordance between carer and patient reports of CNPS
intensity and demographic, disease-related and neuropsychiatric variables. Included
in this were HADS depression and HADS anxiety as separate scores. Correlations
between discordance and patient demographic and clinical variables are outlined in
Table 3.12. A conservative p-value of .01 was adopted as an indicator of
significance. All correlations are Pearsons two-tailed r unless otherwise stated.
66
Table 3.12. Correlations between patient demographic and clinical data and intra-
couple discordance in total CNPS intensity scores
Data Category Discordance in total
CNPS intensity scores
Demographics
Age (years) .036

Gendera, b .178
Relationship Duration (years) -.014
Education (years)
Disease
Age at Diagnosis (years) -.006

Duration (months) .213
Illness Stagea,c .369^
Disability -.123
Cognitive
Global functioning (MoCA) -.181

Executive Functioning (Brixton) .050
Pre-Morbid Full-Scale IQ (WTAR) -.091
Neuropsychiatric
CNPS Intensity (NPI-E total intensity score) -.518**

Patient, Self-rated
CNPS Distress (NPI-E total distress score) -.517**
Patient, Self-rated
HADS Distress (HADS total score) -.216

Anxiety (HADS anxiety score) -.323
Depression (HADS depression score) -.028
Relationship Satisfaction (CSI)
Total score -.103

d
Quality of Life (EQ-5D)
Total score -.022

a b c
^p < .05; *p < .01; **p < .001; Pearsons point-biserial r (rpb); M = 0, F = 1; Early = 0, Advanced = 1;
d
Higher scores indicate poorer EQ-5D
As shown in Table 3.12, discordance between carer and patient reports of total
CNPS intensity was significantly negatively associated with patient self-reports of
CNPS-related distress, r = -.517, p = .003. This indicates that in relation to CNPS
intensity ratings by carers, higher ratings of CNPS intensity by patients are
67
associated with higher ratings of CNPS-related distress by patients. As shown in
Figure 3.4, discordance was calculated by subtracting patient self-rated CNPS
intensity from carer-rated CNPS intensity and showed a significant negative
correlation with patient self-rated CNPS-related distress, r = -.518, p = .003. This
correlation reflects the strong positive relationship between patient self-rated CNPS
intensity and CNPS-related distress (r = .920, p = .000) in addition to the use of
patient-rated CNPS intensity scores in the calculation of the discordance score for
each couple. The direction of the correlation between patient-rated CNPS distress
and discordance can be explained by the fact that patient and carer ratings of CNPS
intensity were positively correlated (r = .383, p = .033; see Table 14), Accordingly,
higher patients-rated CNPS intensity or CNPS-related distress were associated with
greater the concordance between ratings given by each member of a couple and
therefore lower levels of discordance.
Figure 3.4. The relationship between patient self-rated CNPS-related distress and
discordance between patient and carer ratings of CNPS intensity
68
Discordance showed a trend towards a positive association with illness stage (early
vs advanced), rpb = .369, p = .041, indicating that among couples where patients
who are advanced in their illness, carers ratings of CNPS intensity are higher than
patients.
Correlations between discordance and carer demographic and clinical variables are
outlined in Table 3.13. A conservative p-value of .01 was adopted as an indicator of
significance.
Table 3.13. Correlations between carer demographic and clinical variables and intra-
couple discordance in total CNPS intensity scores
Data Category Discordance in total
CNPS intensity scores
Demographics
Age (years) .073

Genderb, c -.193
Education (years) .030
Neuropsychiatric
CNPS Intensity (NPI-E total intensity score) .591**

Patient, Carer-rated
CNPS Distress (NPI-E total distress score) .432^
CNPS Distress (NPI-E total distress score) .451^
Carer, Self-rated
HADS Distress (HADS total score) .225

Anxiety (HADS anxiety score) .199
Depression (HADS depression score) .243
Caregiving Distress (CDS) d .226
Relationship Satisfaction (CSIb)
Total score -.042

Quality of Life (EQ-5D)d
Total score .059

a b c
^p < .05; *p < .01; **p < .001; Pearsons 2-tailed r; Pearsons point-biserial r (rpb); M = 0, F = 1
d
higher scores indicated poorer EQ-5D
As outlined in Table 3.13, discordance showed a trend towards a positive

association with carers self-rated CNPS-related distress (r = .432, p = .017) and
69
carer-rated CNPS-related patient distress (r = .451, p = .012). This indicates that in
relation to ratings of CNPS intensity by patient, higher CNPS intensity ratings by
carers are associated with greater carer self-reported CNPS-related distress and
greater carer-reported ratings of patient CNPS-related distress.
In summary, couples are discordant in their reports of CNPS presence. Where

couples disagree on the presence of a CNPS, the symptom is reported as present
more often by carers than patients. Of the frequently-reported symptoms, more
carers than patients report agitation and aggression, depression, anxiety,
disinhibition and irritability. More patients than carers report apathy and the decline
of patient memory and attention. Carers provided higher ratings of CNPS intensity
than patients in slightly more than half of couples. The extent of the discordance in
scores was similar regardless of which member of the couple rated CNPS intensity
more highly. Greater discordance in ratings of CNPS intensity is significantly
associated with greater CNPS-related distress among patients.
Research question: What are the best predictors of HADS distress and relationship
satisfaction for patients and carers?
In order to answer this question, multiple regressions were performed to identify
factors predicting HADS distress and relationship satisfaction for patients and
carers.
What are the best predictors of patient HADS distress?

Based on correlations shown in Tables 3.9 and Table 3.12 between patient HADS
distress and patient demographics, disease characteristics, cognitive functioning,
neuropsychiatric functioning, EQ-5D and relationship satisfaction, and couples
discordance in ratings of CNPS intensity, variables were identified as potential
predictors of patient HADS distress. Variables identified were those showing a weak
or significant correlation with patient HADS. These included disease duration, illness
stage, physical disability, patient self-rated CNPS intensity and CNPS-related
distress, carer-rated CNPS intensity and patient CNPS-related distress, and patient
EQ-5D. Prior to performing multiple regression analysis, correlations were
performed to check for co-linearity between these variables (Table 3.14). All
correlations reported are Pearsons two-tailed r unless otherwise stated.
70
Table 3.14. Correlation coefficients between variables identified as potential
predictors of patient HADS distress
Category Variable
Disease Stage Disability HADS

Distress
Patient,
Self-rated
Stagea, b .202 -.377^

Disability .426^
Neuropsychiatric CNPS CNPS CNPS HADS

Distress Intensity Distress distress
Patient, Self- Patient, Patient, Patient,
rated Carer-rated Carer- Self-rated
rated
CNPS Intensity (NPI-E .920** .383^ .416^ .691**

total intensity score)
Patient, Self-rated
CNPS Distress (NPI-E .309 .439^ .645**
total distress score)
Patient, Self-rated
CNPS Intensity (NPI-E .902** .419^
CNPS Distress (NPI-E .372^
Quality of Life HADS

Distress
Patient,
Self-rated
EQ-5Dc .671**
a b
^ p <.05; *p < .01; **p < .001; Pearsons point-biserial r (rpb); 0 = early, 1 = advanced;
c
higher scores indicated poorer EQ-5D
As shown in table 3.14, patient self-rated CNPS intensity and CNPS-related distress
were highly correlated as were between carer-rated CNPS intensity and patient
CNPS-related distress. Of these, patient self-rated CNPS intensity and carer-rated
CNPS intensity were selected for entry into the regression model given they had the
highest correlations with patient HADS.
Table 3.15. Model predicting patient HADS distressa
71
Model Variables R R2 Adjusted Standard Significance
2
R error of the (F value)
estimate
1 CNPS intensity .691b .478 .460 5.94 26.55**

Patient, Self-
rated
2 CNPS intensity
Patient, Self-
rated
EQ-5D .792c .628 .601 5.10 23.63**
*p<.01; **p <.001
a
Dependent Variable: Patient HADS distress
b
Predictors: (Constant), CNPS intensity Patient, Self-rated
c
Predictors: (Constant), CNPS intensity Patient, Self-rated, EQ-5D
Physical disability, illness stage, EQ-5D, patient self-rated CNPS intensity and carer-
rated CNPS intensity were entered into a forward stepwise multiple regression to
predict patient HADS. Table 3.15 displays two significant models for predicting
patient HADS distress, F (2, 28) = 23.63, p <.001. The first model including only
patient self-rated CNPS intensity explains 46% of the variance. The second model is
the strongest predictor. It includes both patient self-rated CNPS intensity and EQ-5D
and explains 60% of the variance.
What are the best predictors of patient relationship satisfaction?

Based on correlations shown in Tables 3.9 and Table 3.12, it was clear that there
were no significant relationships between patient relationship satisfaction and
patient disease characteristics, patients ratings of CNPS intensity and CNPS-
related distress, or discordance in couples ratings of CNPS intensity. No multiple
regression was performed. No predictors of patient relationship satisfaction could be
identified from this data set.
What are the best predictors of carer HADS distress?

Based on correlations shown in Tables 3.10 and Table 3.13 between carer HADS
distress and carer demographic variables, patient cognitive functioning, patient and
carer neuropsychiatric functioning, carer EQ-5D, carer relationship satisfaction and
couples discordance in ratings of CNPS intensity, variables were identified as
potential predictors of carer HADS distress. Variables identified were those showing
a weak or significant correlation with carer HADS. These included carer-rated CNPS
72
intensity, carer-rated patient CNPS-related distress, carer self-rated CNPS-related
distress, caregiving-related distress and carer EQ-5D. Prior to performing multiple
regression analysis, correlations were performed to check for co-linearity between
these variables (Table 3.16). All correlations reported are Pearsons two-tailed r
unless otherwise stated.
Table 3.16. Correlation coefficients between variables identified as potential

predictors of carer HADS distress
Category Variable
Neuropsychiatric CNPS CNPS Caregiving HADS

Distress Distress Distress Distress
Patient, Carer, Self- Carer,
Carer-rated rated Self-rated
CNPS Intensity (NPI-E .902** .849** .418^ .401^

CNPS Distress (NPI-E .879** .369^ .463*
CNPS Distress (NPI-E .478* .624**
Carer, Self-rated
Caregiving Distress .650**
(CDS)
Quality of Life HADS

Distress
Carer,
Self-rated
EQ-5Da .627**
a
^ p <.05; *p < .01; **p < .001; higher scores indicated poorer EQ-5D
As shown in table 3.16, there were high correlations between carer-rated CNPS
intensity, carer-rated patient CNPS-related distress, carer-self rated CNPS-related
distress and caregiving-related distress. Of these, carer self-rated CNPS-related
distress and caregiving-related distress were selected for entry into the regression
model given they correlated most highly with carer HADS and the correlation
between them was acceptably low to allow both to be included according to
statistical advice.
73
Table 3.17. Model predicting carer HADS distressa
Model Variables R R2 Adjusted Standard Significance
2
R error of the (F value)
estimate
1 CNPS-related .650e .422 .402 6.40 20.48**

distress
Carer, Self-rated
2 CNPS distress .742c .550 .517 5.76 16.51**

Carer, self-rated
Caregiving-
related distress
3 CNPS-related .806d .649 .609 5.18 16.04**

distress
Carer, Self-rated
Caregiving-
related distress
EQ-5D
*p<.01; **p <.001
a
Dependent Variable: Carer HADS distress
b
Predictors: (Constant), Carer self-rated CNPS-related distress
c
Predictors: (Constant), Carer self-rated CNPS-related distress, EQ-5D
d
Predictors: (Constant), Carer self-rated CNPS-related distress, caregiving-related distress, EQ-5D
Carer self-rated CNPS-related distress, caregiving-related distress and carer EQ-5D

were entered into a forward stepwise multiple regression to predict carer HADS.
Table 3.17 displays three significant models for predicting carer HADS distress, F
(3, 26) = 16.03, p <.001. The first model including only carer self-rated CNPS-
related distress explains 42% of the variance in carer HADS distress. The second
model includes both carer self-rated CNPS-related distress and caregiving-related
distress and explains 55% of the variance. The third model is the strongest
predictor. It includes carer self-rated CNPS-related distress, caregiving-related
distress and EQ-5D and predicts 65% of the variance in carer HADS distress.
What are the best predictors of carer relationship satisfaction?

As shown in Tables 3.9 and Table 3.12, caregiving-related distress was the only
variable to correlate with carer relationship satisfaction. No multiple regression was
74
performed. The best predictor of carer relationship satisfaction from this data set
was caregiving-related distress.
In summary, patient HADS distress is positively predicted by patients ratings of

CNPS intensity and EQ-5D. Carer HADS distress is positively predicted by carers
CNPS-related distress, caregiving-related distress and EQ-5D. Carer relationship
satisfaction is best predicted by caregiving-related distress. No predictors of patient
relationship satisfaction were identified.
75
4. DISCUSSION
The present study aimed to enhance our understanding of couples experiences of

living with PD with a particular focus on PD-related CNPS. The study assessed
patient and carer perceptions of CNPS and explored how these related to distress
and relationship satisfaction. It compared patients and carers perceptions of CNPS
presence and intensity within couples and assessed how discordance in appraisals
related to their self-reported distress and relationship satisfaction. The study also
sought to identify the best predictors of patient and carer distress and relationship
satisfaction of the variables in the data.
In this chapter the findings are described in relation to the study hypotheses and
research question and examined within the context of existing literature. The chapter
then focuses on how this study contributes to current understanding of CNPS and
couples experiences of PD and the meaning and clinical implications of its findings.
The chapter identifies directions for future research and considers the limitations
and strengths of the study. The chapter ends with a reflection on the experience of
carrying out this research. To begin, the sample is described and compared to
couples participating in other recent studies of PD in the UK.
4.1 Overview of the study sample

The present study involved a convenience sample of members of Parkinsons UK
who were alerted to the study via face-to-face interaction at local Parkinsons UK
support group meetings, and information provided by the Parkinsons UK Research
Support Network via emails and the online research forum. In this section, patient
characteristics are summarised in relation to a convenience patient sample in
another recent UK-based research into the non-motor aspects of PD (Brown et al.,
2011). Demographic characteristics of carers were compared to a recent UK-based
study investigating carer burden in PD (Schrag et al., 2006).
Demography of patients and carers

Mean patient age (62.5 years), age at diagnosis (55.8 years) and disease duration
(7.2 years) were comparable to those of Schrag and colleagues (67.9, 61.0 and 6.9
years, respectively). The present study had fewer males (54.8% male as opposed to
65.1%) and a lower age of onset (55.8 as opposed to 61.0 years). Fewer patients in
the present study were taking DRT (70.1% cf. 94.9%) suggesting that a larger
76
proportion may have had mild disease that does not necessarily warrant treatment
at the time.
In the present study all carers were spouses, compared with 86.7% in the
comparison study. The present study had more male carers (48.4% cf. 33.3%) and
similar mean carer age (61.7 years cf. 59.7 years) and relationship duration (31.8
years cf. 31.2 years).
Disability, EQ-5D, distress and relationship satisfaction

The majority of participants rated only mild levels of physical disability, again
supporting the fact that this was a relatively mildly affected sample. Despite this,
over two-thirds of patients were taking DRT. EQ-5D was poorer for patients than
carers.
Using the HADS, the majority of patients (64.5%) and carers (77.4%) did not show
significant levels of depressive symptomatology. Approximately half of carers
(51.6%) and the majority of patients (61.3%) scored below the cutoff for anxiety.
Patients and carers did not differ significantly in the frequency of scores within the
clinical range for anxiety or depression, or in their self-rated levels of total HADS
distress. Rates of patients whose self-reported levels of depression (9.7%) and
anxiety (25.8%) were above the HADS clinical cut off (11) were similar to rates of
HADS depression (13%) and HADS anxiety (22%) reported by Brown and
colleagues (2011).
The proportion of carers (9.7%) whose self-reported ratings of depression on the

HADS were above the clinical cut off (11) was similar to the comparison study
which found 7% of carers ratings on the Beck Depression Inventory (BDI) fell within
the mild to moderate range. Rates of depression in both the present study and
comparison study were lower than reports from another UK-based study using the
15-item Geriatric Depression Scale (GDS-15) in which over one third of carers met
the clinical cut off for depression (Meara, Mitchelmore & Hobson, 1999). This may
reflect differences in the specific constructs measured by each of the three
depression scales across the studies. Any comparison of rates of depression across
these studies requires caution. The proportion of carers whose ratings were above
the clinical cut off (11) on the HADS for self-reported anxiety (32.3%) in the present
study could not be directly compared as this was not measured by Schrag and
colleagues.
77
Most participants were satisfied with their relationships and relationship satisfaction
ratings did not differ significantly between groups. Relationship satisfaction was not
measured by Brown and colleagues (2011) so could not be compared. The majority
of carers assessed by Schrag and colleagues (2006) using the Marital Satisfaction
Scale were also satisfied with their relationship. The high levels of satisfaction
reported in such studies may be biased by the recruitment methods which required
couple pairs to consent to take part.
Patient cognitive functioning

On objective neuropsychological measures, pre-morbid IQ was above average
(>80) for all patients but one. Fewer patients had impaired global cognitive
functioning (13.3% below the cut off for the MoCA) than reported by Brown and
colleagues (2011; 29.7% below the ACE-R cut-off). Over one-third demonstrated
impaired executive functioning as measured by the Brixton. This is consistent with
evidence of such problems in PD (Caviness et al., 2007; Weintraub et al., 2004).
Patient and carer reports of CNPS presence and intensity

Fourteen CNPS were assessed in the present study using a semi-structured
interview (NPI-E). In responding to the NPI-E, participants responses were related
to both the on and off states of medication where such fluctuations were
applicable. The the most frequently-identified CNPS included decline in memory and
attention, anxiety, depression each of which were reported by at least 50% of
patients and carers. Over 50% of patients reported apathy. Over 50% of carers
reported irritability and agitation and aggression. Euphoria, delusions and ICD-
related behaviours were relatively infrequent (<10%). Patients most self-frequently
reported CNPS was decline in memory and attention (74.2%) followed by anxiety
(54.8%) and apathy (54.8%). Carers most frequently reported depression (71%),
followed by anxiety (67.7%) and decline in memory and attention (64.5%). Apathy
was reported by 35.5% of carers.
Among patients, mean CNPS intensity ratings were highest for depression and
anxiety, with over half of these ratings falling within the clinically significant range.
For carer ratings, mean intensity was highest for anxiety and apathy.
78
4.2 Summary of findings in relation to hypotheses and research question
Findings in relation to Hypothesis 1: Patients will rate their physical, cognitive
and neuropsychiatric symptoms lower than their carers.
Hypothesis 1 was not confirmed. There were no intergroup differences between
patient and carer ratings of patient physical disability or total CNPS intensity.
Findings in relation to Hypothesis 2: Patient and carers perceptions of CNPS

intensity will be associated with greater HADS distress and lower relationship
satisfaction.
In support of Hypothesis 2, patient HADS distress was positively correlated with
patients ratings of patients CNPS intensity and weakly positively correlated with
carers ratings of CNPS intensity. Also in support of Hypothesis 2, carer HADS
distress was associated with carers ratings of CNPS intensity, although the
relationship was weak. Although CNPS intensity was hypothesised to correlate
positively with relationship satisfaction, no such pattern was found for patients or
carers. This may relate, in part, to a lack of variability in satisfaction ratings in this
sample. Of note, however, was the significant negative association between carer
relationship satisfaction and distress in relation to their care-giving role. This finding
is discussed in more detail in Section 4.3 below.
Findings in relation to Hypothesis 3: Discordance between carer and patient

perceptions of the patient CNPS presence and intensity will be associated with
worse relationship satisfaction and EQ-5D and greater reports of distress for
patients and carers.
Hypothesis 3 was not supported. Level of discordance within couples between
patients and carers total ratings of CNPS intensity was not associated with HADS
distress or relationship satisfaction for either group. Correlates of discordance were
identified in the data, however, and are discussed in Section 4.3 below.
Findings in relation to research question: What are the best predictors of HADS
distress and relationship satisfaction?
The study sought to identify the best predictors of HADS distress and relationship
satisfaction for patients and carers, particularly in relation to CNPS. Patient HADS
distress was positively predicted by patients and carers ratings of patients CNPS-
related distress. Carer HADS distress was positively predicted by carers CNPS-
related distress, caregiving-related distress and EQ-5D. Carer relationship
79
satisfaction was best predicted by caregiving-related distress. No predictors of
patient relationship satisfaction were identified.
4.3 Interpretation of results

The following section considers the findings in terms of their meaning and
contributions to existing literature and understanding of PD.
Patient disease characteristics and objective cognitive functioning

In the present study, illness stage was defined as early among patients who were
not taking DRT and advanced among patients who were. Stage of illness was not
correlated with any objective measure of cognitive functioning. This suggests that
stage of illness as indicated by the need to control motor symptoms with DRT
cannot be used as an marker of global (i.e. motor and non-motor) decline.
Patients and carers ratings of CNPS presence and intensity

No significant differences were found between patients and carers ratings of CNPS
intensity. Trends in reporting between carers and patients were noted, however.
Compared with carers, patients reported the presence of fewer CNPS overall and
gave a lower proportion of CNPS intensity ratings within the clinical range than
carers. The intergroup patterns described may have proven statistically significant in
a larger sample.
Patients reported similar rates of apathy and depression. In comparison to patients,

carers reported higher rates of depression and lower rates of apathy. Carers
reported depression two times more often than apathy. Similarly, in a recent study
which assessed carers perceptions of patient CNPS using the 10-item NPI
(Aarsland et al., 2007), depression was the most common symptom reported by
carers. One explanation is that patients and carers had different interpretations of
the same symptoms. Although apathy and depression are clinically distinguishable
(see Section 1.3) it is plausible that from a carer perspective, apathy-related
behaviours were perceived as manifestations of depression. With motivation as a
key feature of apathy, symptoms of apathy are arguably less observable than
symptoms of depression.
Symptoms rated as most intense included depression, anxiety and apathy. Patients
rated depression and anxiety as their most intense CNPS whereas carers rated
80
apathy and anxiety as patients most intense symptoms. These findings support
existing evidence discussed in Section 1.3 that PD patients experience high levels
of depression, anxiety and apathy and that depression is highly co-morbid with
anxiety (Chaudhuri et al., 2006; Leentjens et al., 2008; Reijnders et al., 2008;
Weintraub & Stern, 2006). Although carers reported relatively low rates of apathy in
comparison to depression and in comparison to patients reports of apathy, the
majority of carers who did report apathy perceived it to be intense.
Consistent with previous research (Weintraub et al., 2008), hallucinations were

reported by approximately one-third of patients and carers. Delusions were reported
by less than 10% of patients and carers. Over two-thirds of patients were taking
DRT, yet psychotic symptoms were not correlated with stage of illness.
In the present study the rates of each ICD-related behaviour (<10%) reported were
consistent with recent estimates of ICD prevalence in PD (Avanzi et al., 2006;
Chaudhuri et al., 2010; Ferrera & Stacey, 2008; OSullivan et al., 2009; Weintraub et
al., 2008).
Objective and subjective cognitive functioning

Although a minority of patients in the present study demonstrated cognitive
impairment in our objective tests, over three-quarters of patients reported decline in
memory and attention since they had been diagnosed with PD. Patients reports are
consistent with literature showing that decline in memory and attention are two of
the most common symptoms of MCI in PD in addition to decline in executive
function and visuospatial ability (Aarsland et al., 2009). Because the criteria for
assessing MCI were not used in this study, subjective reports of symptom presence
and intensity cannot be compared to existing estimates of MCI prevalence in PD
patients.
High rates of subjective cognitive decline in the context of minimal objective

cognitive decline in the present study may align with research which found that
patients with mild or no cognitive impairment tend to overreport cognitive symptoms
(Caviness et al., 2007). As patients did not undergo comprehensive objective
assessments of memory or attention, it is unclear to what extent patients were
overreporting. Given the low rates of discordance for this symptom (described later
in this chapter) any overreporting by patients would indicate overreporting by carers.
Alternatively, the high rates of reporting may reflect measures used. The NPI-E asks
81
participants to consider changes since their diagnosis of PD. Given that mean
disease duration was over seven years, decline in memory and attention may, in
part, be attributable to ageing rather than PD. Given the association between CNPS
intensity and distress, the rates of reporting may also demonstrate that objectively
subtle changes in levels of memory and attention are subjectively noticeable and
associated with considerable distress. Further research is needed to explore these
concepts.
Patient and carer distress in relation to CNPS

Distress was measured in several ways including HADS distress, CNPS-related
distress and, for carers, distress related to the care-giving role using the CDS.
Levels of HADS distress and self-reported CNPS-related distress were similar for
each group. Carers ratings of their own CNPS-related distress were not significantly
different to their ratings of patient CNPS-related distress.
HADS distress did not vary in relation to patient cognitive functioning or

demographic factors for either group. Patient HADS distress was weakly associated
with earlier stage of illness and greater physical disability and strongly correlated
with EQ-5D.
Carers ratings on each domain of care-giving related distress demonstrated that

patient demands are less distressing for carers than the other domains of caregiver-
related distress including emotional burden, relationship distress social impact and
personal cost of caregiving. In previous PD research into caregiver-related distress,
ratings also using the CDS were associated with patients levels of activities of daily
living (Cifu et al., 2006). This was not replicated in the present study, possibly
because patients in the present study reported minimal rates of physical disability.
Caregiving-related distress in the present study was significantly related to lower
relationship satisfaction. This may, in part, be due to the emphasis that the CDS
places on the carers relationship to the patient and their roles in each others lives.
Our sample reported a considerable range of CNPS. In addition, over half of the
intensity ratings given fell within the clinical range. Yet, participants reported minimal
levels of patient physical disability. This supports research showing that CNPS
including depression and anxiety can precede motor symptoms in PD and are risk-
factors for PD (Chaudhuri et al., 2006; Nilsson et al., 2001; Shiba et al., 2000;
Schurmann et al., 2002; Weisskopf, et al., 2003; Weintraub & Stern, 2005).
82
A strong positive correlation was found between CNPS intensity ratings and both
patient HADS distress and EQ-5D whereas the relatlonship between physical
disability and patient HADS was weak. Participants reports of CNPS, when
considered alongside the low levels of physical disablity among patients in the
sample, align with evidence showing that CNPS are among the most challenging
features of their illness (Politis et al., 2010) and correlate more strongly with patient
HR-QoL and distress than motor symptoms (e.g., Gallagher et al., 2010;
Hammarlund & Hagel, 2012; Li et al., 2010; Martinez-Martin et al., 2011; Slawek,
Derejko & Lass, 2005).
Carer HADS distress was associated with poorer EQ-5D and higher carer-rated
CNPS intensity and carers ratings of their own and patients CNPS-related distress.
These findings support previous findings showing that CNPS are strong predictors
of carer distress in PD (Aarsland et al., 2007; Dowding et al., 2006). Such findings
highlight the importance of attending to both patients and carers experiences of
CNPS in order to manage their psychosocial and emotional wellbeing irrespective of
the nature and severity of physical symptoms.
Patient and carer relationship satisfaction

Other research in PD has shown that for some couples, their marital relationship
and friendship network had strengthened since PD was diagnosed (Fleming, Tolson
& Schartau, 2004). Although the present study did not assess change over time in
relationship satisfaction, the relatively high rates of satisfaction in relationships
among couples may reflect such changes since disease diagnosis. Moreover, it may
indicate that this sample comprised couples who were already satisfied with their
relationship and have remained so.
Relationship satisfaction showed no association with patient disease characteristics

or neuropsychiatric symptoms for patients and carers. This is similar to findings by
Davies (2011) who found married couples experiencing early-stage dementia
showed an enduring commitment to their relationship in spite of the diagnosis and
symptoms they were living with. Further research is needed to explore the possibility
that couples relationships can be a protective factor in PD and a resource to draw
upon in treatment.
83
A negative association was found between caregiving-related distress and carer
relationship satisfaction. This replicates that found in previous studies (Schrag et al.,
2006) and highlights the clinical relevance of caregiving and its consequences to
couples living with PD.
Reports of CNPS: Discordance within couples

Consistent with previous research (e.g., McKinlay et al., 2008), some degree of
discordance in patients and carers perceptions of patients CNPS was common,
although there was no evidence of a directional bias. A detailed summary of the
nature and extent of CNPS-related reporting is discussed in more detail below. This
section begins by focussing on discordance in reports of CNPS presence, later
focussing on ratings of intensity for specific CNPS followed by total ratings of
intensity for all CNPS. It explores discordance in the frequently-reported CNPS in
more detail and outlines how discordance related to other disease characteristics.
Discordance in reports of CNPS presence: Only one couple agreed on the

presence of all CNPS. Of the 14 CNPS assessed by the NPI-E, discordance within
couples was found for up to six CNPS per couple.
Some research on patient-proxy discordance has shown that patients tend to

underreport symptoms in relation to proxies (Feher et al., 1991; Rymer et al., 2002).
There was an apparent trend in the present study whereby when couples disagreed
on the presence of a CNPS, the report was more often given by the carer than the
patient. Nonetheless, the statistical significance of such differences could not be
tested due to low numbers. Moreover, this trend was not evident for all symptoms.
Among the frequently-reported CNPS, the highest rates of discordance were found
for hallucinations followed by disinhibition, with over two-thirds of couples
disagreeing on the presence of these CNPS. At least half of couples disagreed
about the presence of irritability, agitation and aggression, apathy and delusions.
The direction of discordance varied depending on the symptom. Among couples
who disagreed on the presence of apathy, patients reported the symptom four times
more often than carers, whereas hallucinations were reported by almost as many
patients as carers. More carers than patients reported disinhibition, agitation and
aggression and irritability. Consistent with the present study, another recent study
also found poor agreement between patient and carer ratings of disinhibition, yet in
84
contrast to the present study, patients reported the symptom more often than carers
(Schiehser et al., 2013).
Discordance in reports of hallucinations and apathy appears consistent with

previous research showing that carer and patient reports are more likely to differ for
symptoms which are more difficult to observe (Fleming et al., 2005). In contrast,
however, disinhibition, agitation and aggression and irritability are arguably relatively
observable symptoms, yet they were associated with high rates of discordance.
Consistent with other research (e.g., Martin-Martinez et al., 2004) and the detailed
examination of discordance in Section 1.7, these findings indicate that discordance
is not simply a reflection of symptom observability. The discordance in reporting of
these CNPS invites consideration of the ways in which certain behaviours are
interpreted and labelled, how this may differ between by patients and carers, and
the factors influencing such symptom appraisals. For example, as previous
researchers have suggested, relatively higher ratings of symptom severity by carers
may reflect, in part, their emotional reaction to the symptom (McKinlay et al., 2008;
Simms, 2012).
The potential meaning and clinical implications of discordance in rates of CNPS

reporting are considered later in this chapter.
Discordance in ratings of CNPS intensity: All couples demonstrated some

discordance in their total CNPS intensity scores. In contrast to research suggesting
that patients underreport their symptoms relative to proxies (Green et al., 1993),
patients total CNPS intensity scores were lower than carers in only slightly more
than half of couples whereas in the remainder the patients reported the intensities
as higher. In support of recent research into patient-proxy discordance in ratings of
CNPS in PD (Schiehser et al., 2013) and MS (Chiaravalloti & DeLuca, 2003), this
demonstrates that patients do not consistently underreport. The maximum level of
difference in scores was similar regardless of whether the patient or carer was the
member of the couple who gave the highest CNPS intensity ratings.
Despite the apparent balance in extent of average discordance between couples

with patients who over-report relative to the carer, compared with patients who over-
report, the patterns of CNPS-specific reporting are more complex. Consistent with
previous research, the present study showed that rates and levels of discordance
varied depending on the symptom in question (Fleming 2005; Martin-Martinez et al.,
85
2004; Schiehser et al., 2013). This brings the relevance and validity of a total CNPS
score into question. To properly assess and make use of discordance in identifying
and meeting needs of couples, this study shows that more can be learned from
using patient and carer appraisals of each specific CNPS. To rely on the sum of
ratings of all CNPS rather than attending to specific symptoms is to risk losing some
rich and clinically valid detail.
In contrast to previous research suggesting that patients tend to overestimate their

memory functioning in relation to carers (Green et al., 1993), more patients than
carers in the present study reported this CNPS. Decline in memory and attention
was the most frequently-reported symptom by patients, and indeed all participants. It
was also the symptom that couples agreed about most.
In couples who disagreed about the presence of a CNPS, there was no consistent
pattern regarding whether patients or carers confirmed symptom presence in
discordant couples. Some CNPS were reported more often by patients than carers
(e.g., apathy, decline in memory and attention) and vice versa.
The clinical correlates of discordance: The present study showed a weak,

positive association between discordance in CNPS intensity ratings based on higher
ratings from carers compared with patients and advanced stage of illness. This
supports previous research showing greater discordance in illness appraisals
between patient and proxy for patients at more advanced stages of PD (Martinez-
Martin et al., 2004) or taking higher doses of DRT (Schiehser et al., 2013). For
example, a recent study identified increased discordance in reporting of executive
function with higher doses of DRT, with more carers than patients reporting the
symptom (Schiesher et al., 2013). Another study showed that discordance in
patient-carer perceptions of patient HR-QoL was greater at advanced stages of PD,
with carers reporting lower patient HR-QoL than patients (Martinez-Martin et al.,
2004).
Consistent with other recent research investigating patient-carer discordance in

ratings of non-demented PD patients, the direction and degree of discordance was
not related to aspects of neurocognitive functioning associated with lack of insight,
specifically apathy, disinhibition and executive functioning (Schiehser et al., 2013).
The lack of association in the present sample between patient cognitive functioning
and discordance may reflect, in part, the relatively limited range of variation in
86
patient cognitive functioning and small proportion of patients who were impaired on
objective measures of cognition.
Over half of the CNPS reported as present were given intensity ratings that fell
within the clinical range. This suggests that more intense symptoms may be more
apparent and hence more likely to be reported as present. In contrast, patients may
find it hard to detect and label as problematic milder symptoms. This pattern of
intensity and reporting potentially reflects a link between how apparent a symptom is
to an individual and how distressing or disruptive it is for them. Distress is
considered to be a potential influence on subjective reporting of CNPS by other
researchers in this field (Chiaravalloti & DeLuca, 2003; Schiehser et al., 2013). This
concept is worthy of further exploration given the clinical relevance of reporting
behaviour among patients and carers.
The present study shows that differences in perceptions of CNPS are associated
with differences in the impact of each CNPS on each member of the couple.
However, unlike Schiesher and colleagues (2013) who identified an association
between discordance in ratings of subscales of the FrSBe and carer distress, this is
the first study to identify a relationship between discordance in patient-carer ratings
of CNPS intensity and patients as well as carers experiences of distress.
Specifically, the present study showed that the member of the discordant couple
who reports higher CNPS intensity is also the individual who reports more CNPS-
related distress. In part, this reflects the association found for individual participants
between CNPS intensity and CNPS-related distress. In addition, it draws attention to
the relationship between a shared understanding of CNPS within couples and
distress of the person to whom to the CNPS are most apparent. This is consistent
with research showing a positive relationship between patient-carer discordance in
ratings of patient apathy and carer burden and depression and the relationship
between discordance in ratings of patient disinhibition and carer burden (Schiehser
et al., 2013).
Such findings are in contrast, however, to recent research of illness appraisals

showing that optimistic perceptions of PD by one member were associated with
better HR-QoL for the other member (Simms, 2012). However, the measure of
illness appraisal used by Simms (2012) captures constructs such as participants
understanding about it, their perceptions of control and what it means to their
87
identity. In contrast, the NPI-E focuses on the nature and intensity of the symptom
itself.
Predicting patient and carer HADS distress and relationship satisfaction

The study sought to identify the best predictors of HADS distress and relationship
satisfaction for each group.
Predicting HADS: Patient HADS distress was positively predicted by patients self-
rated CNPS intensity and EQ-5D. Carer HADS distress was positively predicted by
carers CNPS-related distress, caregiving-related distress and EQ-5D.
Predicting relationship satisfaction: As discussed earlier, carer relationship

satisfaction was best predicted by caregiving-related distress. I did not assess how
HADS distress and relationship satisfaction related to reports of specific CNPS as
the numbers of patients and frequency of symptom reporting were insufficient. This
is an area for further consideration when identifying which specific CNPS are best
predictors of HADS distress and relationship satisfaction.
4.4 Clinical implications and future directions

Findings from the present study and its contribution to relevant existing evidence
have a range of clinical implications and highlight directions for future research and
advances in clinical practice. This section begins with recommendations for health
professionals in assessing CNPS as part of routine consultations and using the
information when formulating couples experiences and needs and planning
interventions. Based on study findings and other existing evidence, the section then
outlines psychological interventions for patients and carers living with PD that can
be offered in addition to routine medical care.
Health professionals role in assessment

There are a number of reasons to suggest that clinicians must take active
responsibility for assessing for CNPS as a matter of practice. Among some patients
and carers, underreporting of CNPS by can reflect a lack of awareness that CNPS
are related to PD. In addition, it is likely to reflect the reluctance of some PD patients
and carers to acknowledge and discuss CNPS. Such reluctance may reflect
embarrassment due to the stigma often associated with these symptoms. It may
also relate to a desire to protect others present or reflect coping styles such as
88
denial. Moreover, in the context of an appointment that otherwise focuses on
medication and physical symptoms, many patients and carers may assume the
CNPS are not relevant to the consultation. In addition, PD patients who experience
apathy may struggle to initiate discussion about symptoms even if they find them
challenging. These issues highlight that relying on the patient or proxy only to report
CNPS is clinically invalid.
As the present study showed, CNPS reporting varied widely depending on the
symptom in question. Assessment of CNPS should be completed on a symptom-
specific basis in research and clinical settings.
When interpreting subjective reports of symptoms and using them to inform clinical
decision-making clinicians must consider the factors necessary and sufficient to
propel the individual to report the symptom. The present study indicates it may be
related to the level of distress and disruption it causes.
Clinical utility of discordance

As this study shows, when seeking reports from patients and carers within a couple,
discordance is likely to be found. The variation in direction and levels of discordance
found across couples and symptoms in the present study demonstrate the
importance of seeking reports from both members of any patient-carer dyad.
Although potentially less straightforward than relying on patient or carer reports

alone, instances of discordance in subjective symptom reporting in clinical settings
should be regarded as effective contributions to clinical formulations of couples
experience and needs in living with PD. Specifically, discordance may reflect a
number of issues including lack of communication, protection, lack of symptom
awareness, distress, carer burden, embarrassment, shame or guilt. Such issues are
clinically relevant and must be explored sensitively and managed appropriately.
Health professionals may benefit from clinical education designed to improve the
assessment of CNPS in order to capture and make effective use of subjective
reports in formulating and meeting patients and carers needs.
Psychoeducation
The present study highlights the relationship between CNPS intensity and distress
as well as the distressing implications of disagreement within couples about
89
symptoms. It is important that psychoeducation around CNPS is enhanced to enable
patients and carers to identify and make sense of such symptoms. More research is
needed to explore how levels of knowledge and understanding of PD-related CNPS
among patients and carers relate to couples experiences of distress, relationship
satisfaction, HR-QoL and carer burden.
Psychoeducation can lead to improved HR-QoL, physical functioning, speech and

mood, particularly among patients with more advanced disease (ACampo et al.,
2010; Guo, Jiang, Yatsuya, Yoshida & Sakamoto, 2009; Macht et al., 2007; Shimbo
et al., 2004; Trend, Kaye, Gage, Owen & Wade, 2002). Evidence of the benefits of
group-based activities in patients with chronic and neurological illnesses (e.g., King,
1996; Swindells et al., 1999) suggest that the social aspect of attending education
programmes may also contribute to improvements in mood and HR-QoL. Research
is needed to identify the most effective approaches to psychoeducation for couples
living with PD with attention to content and process of delivery.
Symptom-related distress
Given the clinical relevance of reporting behaviour among patients and carers, the
role of symptom-related distress in relation to symptoms reporting requires further
empirical investigation.
The present study showed the prevalence of perceived decline in patients memory
and attention among patients and carers. More PD-specific research is required into
the relationship between patient and carer perceptions of cognitive functioning,
associated distress and objective functioning in these domains in order to inform
psychoeducation and rehabilitation-focussed interventions for reducing and
managing the impact of memory decline in PD.
Patients experiences
In the present study patients reported poorer EQ-5D than carers. According to
recent research, HR-QoL is associated with patient optimism, locus of control and
patients attributing fewer difficulties to PD (Grubner-Baldini, Ye, Anderson &
Schulman, 2009; Simms, 2012). This evidence indicates an avenue for therapeutic
interventions based on cognitive behavioural therapy (CBT) to help patients and
carers adjust their perceptions and responses to the illness. Recent research into
depression and coping styles of PD patients with executive dysfunction shows that
decline in executive functioning and depression are not barriers to effective coping
90
(Montal & Bungener, 2008). This indicates that psychological interventions do not
exclude people with cognitive decline although they may need to be adapted
accordingly.
When diagnosed, ICDs are currently treated pharmacologically. Although in non-PD

populations, ICDs are shown to benefit from psychological therapy including CBT
research into psychological interventions for PD patients with ICDs and their carers
requires attention. Given the low prevalence of ICDs in the present study it was not
possible to analyse patients and carers perceptions of ICD presence and intensity
in relation to distress relationship satisfaction or discordance. By their nature, ICDs
are associated with stigma and distress for both patients and carers (Avanzi et al.,
2006 Chaudhuri et al., 2006; OSullivan et al., 2009; Voon et al., 2011; Weintraub et
al., 2010). Given the likely clinical implications of ICDs on couples wellbeing,
relationship between ICDs and relationship satisfaction and distress in couples must
be deliberately explored in more detail with a view to providing couple-focussed
interventions to manage the complex challenges that ICDs can present.
Carers experiences
This study supports existing evidence that carers experience distress in relation to
PD. This also supports evidence showing that carers experiences and needs are
typically inadequately considered and managed (Guinta et al., 2002). Better support
and education for carers have been linked to positive outcomes for patients
(Dowding et al., 2006; Mittleman, 2005). Given the prevalence of carer distress,
high levels of reliance on informal carers and the impact of carers wellbeing on
patients, carers should be offered evidence-based carer-focussed interventions as a
routine part of PD care.
CBT is shown to be effective in reducing carer general health, strain and subjective
burden with improvements being maintained post-treatment (Secker & Brown,
2005). Given the role of patient psychological wellbeing in carer burden, it is also
relevant to consider programmes shown to improve patient wellbeing as another
pathway to supporting carers (e.g., Cifu et al., 2006; Macht et al., 2007; Shimbo et
al., 2004).
Although there is evidence that carers can find positive aspects to their caregiving
role, assessments of caregiving typically focus on the difficulties. Relationship
satisfaction was associated with lower levels of caregiving-related distress. More
research is required to understand the benefits that caregiving brings to carers of
91
PD patients and how these relate to CNPS presence and severity, coping styles and
features of couples relationships such as communication and discordance. This
could help to identify further ways to support carers and couples living with PD.
Couples experiences
Examination of discordance in patient and carer views of illness in other chronic
conditions has shown a link between discordance in illness perceptions and patient
adaptation to their illness even if they remain happy in their relationship (Heijmans et
al., 1999). The present study is the first to reveal the association between
discordance in patients and carers views of PD symptoms and distress in PD that
exists among couples who are generally satisfied in their relationships. Participants
preparedness to talk about their CNPS in the study reflects a certain level of
acknowledgement of CNPS. Symptom-related distress for individuals who spoke
about their symptoms when interviewed was associated with a lack of reciprocity of
such acknowledgement of symptoms by their partner. Given that distress in one
member of a couple living with PD is known to have direct implications for wellbeing
of the other member (Dowding et al., 2006), the relevance of patient and carer
perceptions of illness to couples wellbeing must be acknowledged in clinical
practice.
The correlations found between CNPS-related distress and levels of discordance in

patients and carers perceptions of CNPS suggest that the less of a shared
understanding couples have about CNPS, the more distress is experienced by the
person who experiences the symptom most intensely. The importance of a shared
understanding of symptoms among couples living with PD requires further
investigation and clinical attention. This seems particularly pertinent to CNPS which
are difficult to identify through observation alone.
Although communication within couples is arguably an important contributor to

development of a shared understanding, it was not assessed in the present study. It
is plausible that if the assessment of relationship satisfaction had incorporated
patient-carer communication, an association between relationship satisfaction and
discordance in reports of CNPS would have been found.
It is unclear to what extent couples relationships may be a protective factor in PD

and a resource to draw upon in treatment. Future research should look more closely
at the potential correlates of relationship satisfaction, including understanding of PD-
92
related symptoms among couples, levels of open communication about symptoms,
intimacy and sexual functioning and coping strategies. It is important that we learn
from couples who appear to be coping relatively well with the challenges of PD-
related CNPS.
The ways in which couples are affected by PD and, PD-related CNPS in particular,
requires recognition of the potential influence of existing, premorbid features of their
relationship. To explore these potential correlates more fully, a longitudinal study
which captures baseline levels of relationship satisfaction, communication, coping
styles and discordance in perceptions of one anothers behaviour may be useful in
order to see how these factors vary over time and whether these help to explain
experiences of PD.
4.5 Limitations and strengths of the study

Sample characteristics
It is acknowledged that the sample was skewed towards people with less severe
PD. Participants were all community-dwelling and recruited either attended local
Parkinsons UK support group meetings, responded to emails internet advertisement
from Parkinsons UK Research Support Network. A minority were contacted by
someone who had already participated in the study. Such an approach to
recruitment is likely to mean that most participants also had relatively high levels
motivation and social. The approach to recruitment, study selection criteria and the
telephone based screening test (TICS-M) meant that anyone with more than mild
cognitive difficulties were not included. Furthermore, depression community PD
patients have however levels of depression than clinical samples of (Schrag,
Jahanshahi & Quinn, 2001). Nonetheless, as summarised in Section 4.1 most
participant characteristics were highly consistent with those in other research PD
research populations in UK.
The study required both members of a couple to consent to participating. This may
have biased the sample towards including those who have a more supportive
relationship from which they derive greater satisfaction.
The NPI-E
The extended scales in the NPI-E used in this study to assess patients and carers
perceptions of CNPS is not formally validated. However, NPI scores were not
93
compared to those in other studies which have used the original 10- or 12-item
versions of NPI. Nonetheless, research shows that the majority of NPI-E subscales
have high concurrent validity with other well-validated measures of these constructs.
For example, the NPI domains of apathy and disinhibition correlate highly with the
apathy and disinhibition subscales on the FrSBE (Malloy & Grace, 2005). Further
research is required to obtain norms for the NPI-E domains not included in the
original NPI including decline in memory and attention and ICDs.
4.6 Strengths of study

The consistency in characteristics between this and other recent samples of
Parkinsons patients and carers shows that its findings are comparable and make an
important contribution to existing evidence in the area.
Participants decision to take part suggests that they were familiar with, and
prepared to share their personal experiences of CNPS. Anecdotally, a number of
participants spoke about their experiences of CNPS in the absence of adequate
patient education or clinical support as a key motivation to participate and thereby
contribute to improvements in understanding and management of CNPS. Such
feedback highlighted the clinical relevance of research into couples experiences of
PD and PD-related CNPS.
To obtain valid data whilst protecting participant wellbeing, it was important to

support participants appropriately throughout their participation so they could
disclose their experiences of PD with honesty. Rates of CNPS reported in the
present study were consistent with CNPS prevalence in the PD population. This
indicates that the research process was managed appropriately such that despite
the psychosocial and emotional challenges associated with PD and many of the
CNPS assessed participants felt safe enough to report challenging or embarrassing
symptoms.
Clinically, evidence of discordance is likely to be a useful indicator of the extent to

which the rater is adjusting and coping with symptoms. This study highlights the
importance of accurate assessments of patients and carers perceptions of CNPS,
looking for any discordance arising within this and using these data when
formulating and planning interventions.
94
The current study aimed to expand our understanding of how couples experiences
of PD, and PD-related CNPS in particular, impact on distress and relationship
satisfaction. Such a detailed assessment in a cohort of couples living with PD makes
an important contribution to the literature. This study provides a comprehensive
overview of subjective experiences of CNPS and their relationship levels of distress
and relationship satisfaction among patients and carers and discordance in
perceptions of CNPS within couples and highlights areas for future research and
ways to improve clinical practice. Previous studies on PD-related CNPS have
typically concentrated on patients or carers as individuals rather than also looking at
their perceptions of CNPS as a couple. The current studys more extensive
investigation of couples experience of CNPS in addition to patients and carers as
individuals is laudable given the many clinical implications of patients and carers
experiences as a couple. The study has identified a complex presentation of CNPS
and distress in relation to CNPS and caregiving. Findings revealed a pattern of
discordance in subjective reports of CNPS within couples that supports and extends
findings of previous research. This is the first study to show a link between
discordance and patient distress in PD. This is consistent with patterns found in
other chronic conditions (Heijmans et al., 1999) and adds to recent research
demonstrating this pattern for carers in PD (Schiesher et al., 2013). The study
highlights the importance of accurate assessment of patients and carers
perceptions of CNPS and exploring any differences in these. It emphasised the
need to pay careful attention to patient and carer distress. Given its clinical
relevance, such information about patients and carers experiences of PD-related
CNPS must be actively sought and used when formulating and planning
interventions.
4.7 Reflections
It was a privilege to interview participants in this study. They shared experiences
many of which were sensitive and emotionally-laden. A number revealed that this
was the first time they had felt able to discuss in detail their CNPS or their
relationship since PD was diagnosed. Furthermore, some commented on the way in
which being interviewed about their CNPS helped to validate and normalise them to
some extent which they valued. Many had approached me to take part because they
were concerned about the lack of patient education and clinical support provided
regarding PD-related CNPS. This demonstrated the clinical relevance of the study.
95
Some participants contacted me soon after they had completed their participation to
inform me of other couples who were interested in participating. This indicated to me
the value they placed in their participation and the high regard they held for the
study and my approach to running it. Moreover, months after meeting them, a
number of participants contacted me expressing interest in the findings.
Finally, I was delighted to read some of the feedback that participants posted on the
Parkinsons UK research forum describing their experiences of participation. I have
anonymised and included two comments below:
Participant RD
Dr Janssen came to my home yesterday and conducted the interviews. She
was very amiable and put us at ease before spending approx 3 hours asking
questions on just how my PD affected us, family and friends.
Maybe Anna's research will help the medical profession to understand our
needs somewhat more than they do?
Nuero's [sic] need to take our mental anguish into account more vigorously
than ever!
oh yeah...one more thing. All you with toothless heads out there had better
get your dentures tuned up and raring to go. The list of words that you are
required to read out loud ascend in difficulty! Lololol
Participant PH
I endorse xxxs comments. Anna interviewed us some months ago. She is
friendly and very approachable while maintaining professionalism. Anna
originally from New Zealand has a doctorate from there and is now doing
further doctorate studies. Her research complements that being done by
[researcher and neurologist] on the non motor aspects of Parkinsons [sic], in
this case the effect on couples when one partner is diagnosed with PD.
These comments were found at:

http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=research&topic=couples-
needed-to-take-part-in-a-research-study-a&page=1#hi-ef-i-m-currently-into-the-third-
week-of-the-ls retrieved 19th May 2013.
Anecdotally, participants comments (above) and face-to-face feedback is consistent

with research I have done previously into improving care for people living with
96
chronic and incurable illnesses. Such research highlights the importance of actively
inviting patients and carers reflections on their experiences of illness and clinical
services and using them to inform advances in health care (Janssen & MacLeod,
2008; Janssen & MacLeod 2010a; Janssen & MacLeod, 2010b). Given my
experience of meeting people living with PD-related CNPS through this study, it is
encouraging to see organisations including Parkinsons UK demonstrating
considerable commitment to improving clinical education in assessment and
management of couples experiences of CNPS. Such efforts must continue to be
supported by further research that patients and carers deem clinically relevant to
their lived experiences of PD.
97
5. REFERENCES
A'Campo, L. E. I., Wekking, E. M., Spliethoff-Kamminga, N. G. A., Le Cessie, S., &

Roos, R. A. C. (2010). The benefits of a standardized patient education program for
patients with Parkinson's disease and their caregivers. Parkinsonism & related
disorders, 16(2), 89-95.
Aarsland, D., Beyer, M. K., & Kurz, M. W. (2008). Dementia in Parkinson's disease.
Current opinion in neurology, 21(6), 676-682.
Aarsland, D., Brnnick, K., Ehrt, U., De Deyn, P. P., Tekin, S., Emre, M., &
Cummings, J. L. (2007). Neuropsychiatric symptoms in patients with Parkinsons
disease and dementia: frequency, profile and associated care giver stress. Journal
of Neurology, Neurosurgery & Psychiatry, 78(1), 36-42.
Aarsland, D., Brnnick, K., Larsen, J. P., Tysnes, O. B., & Alves, G. (2009).
Cognitive impairment in incident, untreated Parkinson disease The Norwegian
ParkWest Study. Neurology, 72(13), 1121-1126.
Aarsland, D., Bronnick, K., Williams-Gray, C., Weintraub, D., Marder, K., Kulisevsky,
J., ... & Emre, M. (2010). Mild cognitive impairment in Parkinson disease A
multicenter pooled analysis. Neurology, 75(12), 1062-1069.
Aarsland, D., Larsen, J. P., Karlsen, K., Lim, N. G., & Tandberg, E. (1999). Mental
symptoms in Parkinson's disease are important contributors to caregiver distress.
International journal of geriatric psychiatry, 14(10), 866-874.
Aarsland, D., Larsen, J. P., Tandberg, E., & Laake, K. (2000). Predictors of nursing
home placement in Parkinson's disease: a population-based, prospective study.
Journal of the American Geriatrics Society, 48(8), 938-942.
Aarsland, D., Zaccai, J., & Brayne, C. (2005). A systematic review of prevalence
studies of dementia in Parkinson's disease. Movement Disorders, 20(10), 1255-
1263.
Aarsland, D., Larsen, J. P., Lim, N. G., Janvin, C., Karlsen, K., Tandberg, E., &
Cummings, J. L. (1999). Range of neuropsychiatric disturbances in patients with
98
Parkinsons disease. Journal of Neurology, Neurosurgery & Psychiatry, 67(4), 492-
496.
Alves, G., Wentzel-Larsen, T., & Larsen, J. P. (2004). Is fatigue an independent and
persistent symptom in patients with Parkinson disease?. Neurology, 63(10), 1908-
1911.
American Psychiatric Association. Diagnostic and Statistical Manual of Mental

Disorders, 4th ed. Washington, DC: American Psychiatric Association; 2000.
Avanzi, M., Baratti, M., Cabrini, S., Uber, E., Brighetti, G., & Bonf, F. (2006).
Prevalence of pathological gambling in patients with Parkinson's disease. Movement
Disorders, 21(12), 2068-2072.
Baldereschi, M., Di Carlo, A., Rocca, W. A., Vanni, P., Maggi, S., Perissinotto, E., ...
& Inzitari, D. (2000). Parkinsons disease and parkinsonism in a longitudinal study
Two-fold higher incidence in men. Neurology, 55(9), 1358-1363.
Barber, M. & Stott, D. J. (2004). Validity of the Telephone Interview for Cognitive
Status in post-stroke subjects. International Journal of Geriatric Psychiatry, 19 (1),
75 79.
Bassetti, C. L. (2011). Nonmotor disturbances in Parkinsons disease.

Neurodegenerative Diseases, 8(3), 95-108.
Bathgate, D., Snowden, J. S., Varma, A., Blackshaw, A., & Neary, D. (2001).
Behaviour in frontotemporal dementia, Alzheimer's disease and vascular dementia.
Acta Neurologica Scandinavica, 103(6), 367-378.
Birgersson, A. M. B., & Edberg, A. K. (2004). Being in the light or in the shade:
persons with Parkinson's disease and their partners experience of support.
International Journal of Nursing Studies, 41(6), 621-630.
Bodden, M. E., Mollenhauer, B., Trenkwalder, C., Cabanel, N., Eggert, K. M., &
Unger, M. M. et al. (2010). Affective and cognitive theory of mind in patients with
parkinson's disease. Parkinsonism and Related Disorders, 16, 466470.
99
Brazier, J., Jones, N., & Kind, P. (1993). Testing the validity of the Euroqol and
comparing it with the SF-36 health survey questionnaire. Quality of Life Research,
2(3), 169-180.
Brazier, J. E., Walters, S. J., Nicholl, J. P., & Kohler, B. (1996). Using the SF-36 and
Euroqol on an elderly population. Quality of Life Research, 5(2), 195-204.
Brooks, D. J. (2002). Diagnosis and management of atypical parkinsonian

syndromes. Journal of Neurology, Neurosurgery & Psychiatry, 72(suppl 1), i10-i16.
Brown, R. G., Landau, S., Hindle, J. V., Playfer, J., Samuel, M., Wilson, K. C., ... &
Burn, D. J. (2011). Depression and anxiety related subtypes in Parkinson's disease.
Journal of Neurology, Neurosurgery & Psychiatry, 82(7), 803-809.
Burgess, P.W. & Shallice, T. (1997). Hayling and Brixton Tests. Pearson
Assessment Oxford, UK (1997)
Carter, J. H., Stewart, B. J., Archbold, P. G., Inoue, I., Jaglin, J., Lannon, M., ... &
Zoog, K. (1998). Living with a person who has Parkinson's disease: the spouse's
perspective by stage of disease. Movement Disorders, 13 (1), 20-28.
Caviness, J. N., DriverDunckley, E., Connor, D. J., Sabbagh, M. N., Hentz, J. G.,
Noble, B., ... & Adler, C. H. (2007). Defining mild cognitive impairment in Parkinson's
disease. Movement Disorders, 22(9), 1272-1277.
Chan, Y. F. & Zainal, N. Z. (2010). Depression In Parkinson Disease: Clinical

Features And Aetiology. Malaysian Journal of Psychiatry, 19 (1).
Chaudhuri, K. R., Healy, D. G., & Schapira, A. H. (2006). Non-motor symptoms of

Parkinson's disease. Diagnosis and management. Lancet Neurology, 5, 235-245.
Chaudhuri, K. R., & Naidu, Y. (2008). Early Parkinsons disease and non-motor
issues. Journal of neurology, 255(5), 33-38.
Chaudhuri, K. R., & Schapira, A. H. (2009). Non-motor symptoms of Parkinson's

disease: dopaminergic pathophysiology and treatment. Lancet neurology, 8(5), 464.
100
Chaudhuri, K., PrietoJurcynska, C., Naidu, Y., Mitra, T., FradesPayo, B., Tluk, S.,
... & MartinezMartin, P. (2010). The nondeclaration of nonmotor symptoms of
Parkinson's disease to health care professionals: an international study using the
nonmotor symptoms questionnaire. Movement Disorders, 25(6), 704-709.
Chaudhuri, K. R., Yates, L., & Martinez-Martin, P. (2005). The non-motor symptom
complex of Parkinson's disease: a comprehensive assessment is essential. Current
Neurology and Neuroscience Reports, 5(4), 275.
Chiaravalloti, N. D., & DeLuca, J. (2003). Assessing the behavioral consequences of

multiple sclerosis: An application of the Frontal Systems Behavior Scale (FrSBe).
Cognitive and Behavioral Neurology, 16(1), 54-67.
Cifu, D. X., Carne, W. F., Hayes, R. B., Pegg, P. O., Ong, J. C., Qutubuddin, A. A.,
& Baron, M. S. (2006). Caregiver distress in parkinsonism. Preventive and
Behavioral Medicine Publications and Presentations. Paper 209.
http://escholarship.umassmed.edu/prevbeh_pp/209
Chou, K. L., Amick, M. M., Brandt, J., Camicioli, R., Frei, K., Gitelman, D., ... & Uc,
E. Y. (2010). A recommended scale for cognitive screening in clinical trials of
Parkinson's disease. Movement Disorders, 25(15), 2501-2507.
Coelho, M., Ferreira, J., Rosa, M., & Sampaio, C. (2008). Treatment options for non-
motor symptoms in late-stage Parkinson's disease. Expert Opinion in
Pharmacotherapy, 9 (4), 523-535. DOI: 10.1517/14656566.9.4.523
Cohen, C. A., Colantonio, A., & Vernich, L. (2002). Positive aspects of caregiving:
rounding out the caregiver experience. International Journal of Geriatric Psychiatry,
17(2), 184-188.
Cook, S. E., Marsiske, M., & McCoy, K. J. (2009). The use of the Modified
Telephone Interview for Cognitive Status (TICS-M) in the detection of amnestic mild
cognitive impairment. Journal of geriatric psychiatry and neurology, 22(2), 103-109.
Cousins, R., Davies, A. D., Turnbull, C. J., & Playfer, J. R. (2002). Assessing
caregiving distress: A conceptual analysis and a brief scale. British Journal of
Clinical Psychology, 41(4), 387-403.
101
Cox, S. (2009). Goal-directed Behaviour & Apathy in Parkinson's Disease. (Masters
dissertation).
Crawford, J.R., Henry, J.D., Crombie, C. & Taylor, E. P. (2001)

Brief report - Normative data for the HADS from a large non-clinical sample. British
Journal of Clinical Psychology, 40, 429-434.
Cummings, J. L. (1997). The Neuropsychiatric Inventory Assessing

psychopathology in dementia patients. Neurology, 48(5 Suppl 6), 10S-16S.
Daley, D. J., Deane, K. H., Gray, R. J., Worth, P. F., Clark, A. B., Sabanathan, K., ...
& Myint, P. K. (2011). The use of carer assisted adherence therapy for people with
Parkinson's disease and their carers (CAAT-PARK): study protocol for a randomised
controlled trial. Trials, 12(1), 251.
Dalrymple-Alford, J. C., MacAskill, M. R., Nakas, C. T., Livingston, L., Graham, C.,
Crucian, G. P., ... & Anderson, T. J. (2010). The MoCA Well-suited screen for
cognitive impairment in Parkinson disease. Neurology, 75(19), 1717-1725.
DAmelio, M., Terruso, V., Palmeri, B., Di Benedetto, N., Famoso, G., Cottone, P., ...
& Savettieri, G. (2009). Predictors of caregiver burden in partners of patients with
Parkinsons disease. Neurological sciences, 30(2), 171-174.
Davies, J. C. (2011). Preserving the us identity through marriage commitment

while living with early-stage dementia. Dementia, 10(2), 217-234.
Davies, A., Elderton, A., Loftus, L., Thornton, E., & Turnbull, C. (2009). Positive
reactions to caring in Parkinsons disease caregivers. PSIGE Newsletter, 107, 59
62.
De Rijk, M. C., Launer, L. J., Berger, K., Breteler, M. M., Dartigues, J. F.,
Baldereschi, M., ... & Hofman, A. (2000). Prevalence of Parkinson's disease in
Europe: A collaborative study of population-based cohorts. Neurologic Diseases in
the Elderly Research Group. Neurology, 54(11 Suppl 5), S21.
102
Den Oudsten, B. L., Van Heck, G. L., & De Vries, J. (2007). Quality of life and
related concepts in Parkinson's disease: a systematic review. Movement disorders,
22(11), 1528-1537.
Dodel, R. C., Eggert, K. M., Singer, M. S., Eichhorn, T. E., Pogarell, O., & Oertel, W.
H. (1998a). Costs of drug treatment in Parkinson's disease. Movement Disorders,
13(2), 249-254.
Dodel, R. C., Singer, M., Khne-Volland, R., Szucs, T., Rathay, B., Scholz, E., &
Oertel, W. H. (1998b). The economic impact of Parkinsons disease.
Pharmacoeconomics, 14(3), 299-312.
Dowding, C. H., Shenton, C. L., & Salek, S. S. (2006). A review of the health-related
quality of life and economic impact of Parkinsons disease. Drugs & Aging, 23(9),
693-721.
Dubois, B., Burn, D., Goetz, C., Aarsland, D., Brown, R. G., Broe, G. A., ... & Emre,
M. (2007). Diagnostic procedures for Parkinson's disease dementia:
recommendations from the movement disorder society task force. Movement
Disorders, 22(16), 2314-2324.
Dueas, M. S., & Serrano, M. S. (2007). The incongruities of the NPI-Q score
obtained by the caregiver versus that obtained directly from the non-demented
patient with Parkinson's disease. Revista Ecuatoriana De Neurologia, 16(1), 12.
Edelstyn, N. M., Mayes, A. R., Condon, L., Tunnicliffe, M., & Ellis, S. J. (2007).
Recognition, recollection, familiarity and executive function in medicated patients
with moderate Parkinson's disease. Journal of Neuropsychology, 1(2), 131-147.
Evans, A. H., & Lees, A. J. (2004). Dopamine dysregulation syndrome in

Parkinson's disease. Current Opinion in Neurology, 17(4), 393-398.
Evans, A. H., Katzenschlager, R., Paviour, D., O'Sullivan, J. D., Appel, S.,
Lawrence, A. D., & Lees, A. J. (2004). Punding in Parkinson's disease: its relation to
the dopamine dysregulation syndrome. Movement Disorders, 19(4), 397-405.
103
Evans, D., & Norman, P. (2009). Illness representations, coping and psychological
adjustment to Parkinson's disease. Psychology and Health, 24(10), 1181-1196.
Feher, E. P., Mahurin, R. K., Inbody, S. B., Crook, T. H., & Pirozzolo, F. J. (1991).
Anosognosia in Alzheimer's disease. Cognitive and Behavioral Neurology, 4(2),
136-146.
Ferrara, J. M., & Stacy, M. (2008). Impulse-control disorders in Parkinsons disease.

CNS Spectr, 13(8), 690-698.
Field, A. (2009). Discovering Statistics Using SPSS (3rd Edition). Sage: London.
Findley, L., Aujla, M., Bain, P. G., Baker, M., Beech, C., Bowman, C., ... & Playfer, J.
R. (2003). Direct economic impact of Parkinson's disease: a research survey in the
United Kingdom. Movement Disorders, 18(10), 1139-1145.
Fleming, A., Cook, K. F., Nelson, N. D., & Lai, E. C. (2005). Proxy reports in
Parkinson's disease: Caregiver and patient selfreports of quality of life and physical
activity. Movement Disorders, 20(11), 1462-1468.
Fleming, J. M., & Ownsworth, T. (2006). A review of awareness interventions in

brain injury rehabilitation. Neuropsychological Rehabilitation, 16(4), 474-500.
Fleming, V., Tolson, D., & Schartau, E. (2004). Changing perceptions of

womanhood: living with Parkinson's Disease. International journal of nursing
studies, 41(5), 515.
Funk, J. L., & Rogge, R. D. (2007). Testing the ruler with item response theory:
Increasing precision of measurement for relationship satisfaction with the Couples
Satisfaction Index. Journal of Family Psychology, 21(4), 572.
Gagnon, J. F., Postuma, R. B., Joncas, S., Desjardins, C., & Latreille, V. (2010). The
Montreal Cognitive Assessment: a screening tool for mild cognitive impairment in
REM sleep behavior disorder. Movement Disorders, 25(7), 936-940.
104
Gallagher, D. A., Lees, A. J., & Schrag, A. (2010). What are the most important
nonmotor symptoms in patients with Parkinson's disease and are we missing them?.
Movement Disorders, 25(15), 2493-2500.
Gill, D. J., Freshman, A., Blender, J. A., & Ravina, B. (2008). The Montreal cognitive
assessment as a screening tool for cognitive impairment in Parkinson's disease.
Movement disorders, 23(7), 1043-1046.
Ginanneschi, A., DeglInnocenti, F., Magnolfi, S., Maurello, M. T., Catarzi, L., Marini,
P., & Amaducci, L. (1988). Evaluation of Parkinsons disease: reliability of three
rating scales. Neuroepidemiology, 7(1), 38-41.Global Parkinsons Steering
Committee [GPDS] (2002). Factors impacting on quality of life in Parkinsons
Disease: Results from an international survey. Movement Disorders, 17, 60 67.
Goetz, C. G. (2009). Scales to evaluate psychosis in Parkinsons Disease.

Parkinsonism and Related Disorders, 15S3, S38 S41.
Goetz, C. G., Poewe, W., Rascol, O., Sampaio, C., Stebbins, G. T., Counsell, C., ...
& Seidl, L. (2004). Movement Disorder Society Task Force report on the Hoehn and
Yahr staging scale: Status and recommendations The Movement Disorder Society
Task Force on rating scales for Parkinson's disease. Movement disorders, 19(9),
1020-1028.
Goldbeck, R. (1997). Denial in physical illness. Journal of Psychosomatic Research,

43(6), 575-593.
Green, J., Goldstein, F. C., Sirockman, B. E., & Green, R. C. (1993). Variable
awareness of deficits in Alzheimer's disease. Cognitive and Behavioral Neurology,
6(3), 159-165.
Gruber-Baldini, A. L., Ye, J., Anderson, K. E., & Shulman, L. M. (2009). Effects of
optimism/pessimism and locus of control on disability and quality of life in
Parkinson's disease. Parkinsonism & Related Disorders, 15(9), 665-669.
Guinta, N., Parrish, M., & Adams, S. (2002). Parkinson's Disease Caregiving: A
Descriptive Report. Family Caregiver Alliance.
105
Guo, L., Jiang, Y., Yatsuya, H., Yoshida, Y., & Sakamoto, J. (2009). Group
education with personal rehabilitation for idiopathic Parkinson's disease. The
Canadian Journal of Neurological Sciences, 36(1), 51-59.
Hammarlund, C. S., Hagell, P., & Nilsson, M. H. (2012). Motor and non-motor
predictors of illness-related distress in Parkinsons disease. Parkinsonism & Related
Disorders, 18(3), 299-302.
Heijmans, M., de Ridder, D., & Bensing, J. (1999). Dissimilarity in patients and
spouses representations of chronic illness: Exploration of relations to patient
adaptation. Psychology and Health, 14, 451466.
Hely, M. A., Morris, J. G., Reid, W. G., & Trafficante, R. (2005). Sydney multicenter
study of Parkinson's disease: NonLdoparesponsive problems dominate at 15
years. Movement Disorders, 20(2), 190-199.
Hely, M. A., Morris, J. G., Traficante, R., Reid, W. G., OSullivan, D. J., &
Williamson, P. M. (1999). The Sydney multicentre study of Parkinsons disease:
progression and mortality at 10 years. Journal of Neurology, Neurosurgery &
Psychiatry, 67(3), 300-307.
Hobson, J. P., Edwards, N. I., & Meara, R. J. (2001). The Parkinson's Disease
Activities of Daily Living Scale: a new simple and brief subjective measure of
disability in Parkinson's disease. Clinical rehabilitation, 15(3), 241-246.
Holdnack, J. A. (2001). WTAR. Wechsler Test of Adult Reading Manual. San

Antonio, TX: Psychological Corporation.
Hurt, C. S., Landau, S., Burn, D. J., Hindle, J. V., Samuel, M., Wilson, K., & Brown,
R. G. (2012). Cognition, coping, and outcome in Parkinson's disease. International
Psychogeriatrics, 24(10), 1656.
Inzelberg, R., Schechtman, E., & Paleacu, D. (2002). Onset age of Parkinson
disease. American journal of medical genetics, 111(4), 459-460.
Jankovic, J. (2000). Complications and limitations of drug therapy for Parkinson's

disease. Neurology, 55(12), S2-S6.
106
Jankovic, J. (2008). Parkinsons disease: clinical features and diagnosis. Journal of
Neurology, Neurosurgery & Psychiatry, 79(4), 368-376.
Janssen, A. & MacLeod, R. D. (2008). A meeting of cultures: Patients educating

practitioners about quality cancer Care. Psycho-oncology, 17, S118.
Janssen, A. & MacLeod, R. (2010a), What can people approaching death teach us
about how to care?. Patient Education and Counselling. 81(2), 251-256.
Janssen, A. & MacLeod, R. (2010b), What does care mean? Perceptions of people
approaching the end of life. Palliative & Supportive Care. 8(4), 433-440.
Kaasinen, V. & Rinne, J. O. (2002). Functional imaging studies of dopamine system

and cognition in normal aging and Parkinson's disease. Neuroscience &
Biobehavioral Reviews, 26(7), 785-793.
King, R. B. (1996). Quality of life after stroke. Stroke, 27(9), 1467-1472.
Kirsch-Darrow, L., Fernandez, H. F., Marsiske, M., Okun, M. S., & Bowers, D.
(2006). Dissociating apathy and depression in Parkinson disease. Neurology, 67(1),
33-38.
Klos, K. J., Bower, J. H., Josephs, K. A., Matsumoto, J. Y., & Ahlskog, J. E. (2005).
Pathological hypersexuality predominantly linked to adjuvant dopamine agonist
therapy in Parkinson's disease and multiple system atrophy. Parkinsonism &
Related Disorders, 11(6), 381-386.
Kramer, B. J. (1997). Gain in the caregiving experience: Where are we? What next?.
The Gerontologist, 37(2), 218-232.
Krishnan, S., Sarma, G., Sarma, S., & Kishore, A. (2011). Do nonmotor symptoms in
Parkinson's disease differ from normal aging?. Movement Disorders, 26(11), 2110-
2113.
107
Lai, B. C. L., Schulzer, M., Marion, S., Teschke, K., & Tsui, J. K. C. (2003). The
prevalence of Parkinson's disease in British Columbia, Canada, estimated by using
drug tracer methodology. Parkinsonism & related disorders, 9(4), 233-238.
Leentjens, A. F., Dujardin, K., Marsh, L., MartinezMartin, P., Richard, I. H.,
Starkstein, S. E., ... & Goetz, C. G. (2008). Anxiety rating scales in Parkinson's
disease: critique and recommendations. Movement Disorders, 23(14), 2015-2025.
Leentjens, A. F. G., Lousberg, R., & Verhey, F. R. J. (2001). The psychometric

properties of the Hospital Anxiety and Depression Scale in patients with Parkinsons
disease. Acta Neuropsychiatr, 13, 83-85.
Leigh P. N., Higginson, I., Saleem, T., Wei, G., Koeser, L., & McCrone, P. (2012).
Defining the palliative care needs of people with late-stage Parkinsons disease,
multiple system atrophy and progressive supranuclear palsy. Research Initiative for
Long Term Neurological Conditions. www.ltnc.org.uk/...
/2012/Palliative%20care%20needs _ final %20report.pdf. Accessed 10 March, 2013.
Leino-Kilpi, H., Johansson, K., Heikkinen, K., Kaljonen, A., Virtanen, H., &
Salanter, S. (2005). Patient education and health-related quality of life: surgical
hospital patients as a case in point. Journal of Nursing Care Quality, 20(4), 307-316.
Levy, R., Ashby, P., Hutchison, W. D., Lang, A. E., Lozano, A. M., & Dostrovsky, J.
O. (2002). Dependence of subthalamic nucleus oscillations on movement and
dopamine in Parkinsons disease. Brain, 125(6), 1196-1209
Li, H., Zhang, M., Chen, L., Zhang, J., Pei, Z., Hu, A., & Wang, Q. (2010). Nonmotor
symptoms are independently associated with impaired healthrelated quality of life in
Chinese patients with Parkinson's disease. Movement Disorders, 25(16), 2740-
2746.
Lines, C. R., McCarroll, K. A., Lipton, R. B., & Block, G. A. (2003). Telephone
screening for amnestic mild cognitive impairment. Neurology, 60(2), 261-266.
Litvan, I., Goldman, J. G., Trster, A. I., Schmand, B. A., Weintraub, D., Petersen,
R. C., ... & Emre, M. (2012). Diagnostic criteria for mild cognitive impairment in
108
Parkinson's disease: Movement Disorder Society Task Force guidelines. Movement
disorders, 27(3), 349-356.
Lhle, M., Storch, A., & Reichmann, H. (2009). Beyond tremor and rigidity: non-
motor features of Parkinsons disease. Journal of Neural Transmission, 116(11),
1483-1492.
Lkk, J. (2009). Reduced life-space of non-professional caregivers to Parkinson's

disease patients with increased disease duration. Clinical neurology and
neurosurgery, 111(7), 583-587.
Lyketsos, C. G., Lopez, O., Jones, B., Fitzpatrick, A. L., Breitner, J., & DeKosky, S.
(2002). Prevalence of neuropsychiatric symptoms in dementia and mild cognitive
impairment. JAMA: the journal of the American Medical Association, 288(12), 1475-
1483.
McGlynn, S. M., & Schacter, D. L. (1989). Unawareness of deficits in

neuropsychological syndromes. Journal of Clinical and Experimental
Neuropsychology, 11(2), 143-205.
McKinlay, A., Grace, R. C., Dalrymple-Alford, J. C., Anderson, T. J., Fink, J., &
Roger, D. (2008). Neuropsychiatric problems in Parkinson's disease: Comparisons
between self and caregiver report. Aging and Mental Health, 12(5), 647-653.
McLaughlin, D., Hasson, F., Kernohan, W. G., Waldron, M., McLaughlin, M.,
Cochrane, B., & Chambers, H. (2011). Living and coping with Parkinsons disease:
Perceptions of informal carers. Palliative medicine, 25(2), 177-182.
McRae, C., Diem, G., Vo, A., O'Brien, C., & Seeberger, L. (2002). Reliability of
measurements of patient health status: a comparison of physician, patient, and
caregiver ratings. Parkinsonism & Related Disorders, 8(3), 187-192.
MacDonald, B. K., Cockerell, O. C., Sander, J. W. A. S., & Shorvon, S. D. (2000).

The incidence and lifetime prevalence of neurological disorders in a prospective
community-based study in the UK. Brain, 123(4), 665-676.
109
Macht, M., Gerlich, C., Ellgring, H., Schradi, M., Rusiol, . B., Crespo, M., ... &
Kanarik, E. (2007). Patient education in Parkinson's disease: Formative evaluation
of a standardized programme in seven European countries. Patient education and
counseling, 65(2), 245.
Malloy, P., & Grace, J. (2005). A review of rating scales for measuring behavior
change due to frontal systems damage. Cognitive and Behavioral Neurology, 18(1),
18-27
Marsh, L., Williams, J. R., Rocco, M., Grill, S., Munro, C., & Dawson, T. M. (2004).
Psychiatric comorbidities in patients with Parkinson disease and psychosis.
Neurology, 63(2), 293-300.
MartnezMartn, P., Forjaz, M. J., FradesPayo, B., Rusiol, A. B.,

FernndezGarca, J. M., BenitoLen, J., ... & Cataln, M. J. (2007). Caregiver
burden in Parkinson's disease. Movement Disorders, 22(7), 924-931.
MartnezMartn, P., BenitoLen, J., Alonso, F., Cataln, M. J., Pondal, M., &
Zamarbide, I. (2004). Healthrelated quality of life evaluation by proxy in Parkinson's
disease: Approach using PDQ8 and EuroQoL5D. Movement Disorders, 19(3), 312-
318.
Martinez-Martin, P., Rodriguez-Blazquez, C., & Frades-Payo, B. (2008). Specific

patient-reported outcome measures for Parkinsons disease: analysis and
applications. Expert Review of Pharmacoeconomics and Outcomes Research, 8(4),
401-418.
MartinezMartin, P., RodriguezBlazquez, C., Kurtis, M. M., & Chaudhuri, K. (2011).

The impact of nonmotor symptoms on healthrelated quality of life of patients with
Parkinson's disease. Movement Disorders, 26(3), 399-406.
MartinezMartin, P., Schapira, A. H., Stocchi, F., Sethi, K., Odin, P., MacPhee, G., ...
& Chaudhuri, K. (2007). Prevalence of nonmotor symptoms in Parkinson's disease
in an international setting; study using nonmotor symptoms questionnaire in 545
patients. Movement Disorders, 22(11), 1623-1629.
110
Meara, J., Mitchelmore, E., & Hobson, P. (1999). Use of the GDS-15 geriatric
depression scale as a screening instrument for depressive symptomatology in
patients with Parkinson's disease and their carers in the community. Age and
Ageing, 28(1), 35-38.
Mittelman, M. (2005). Taking care of the caregivers. Current Opinion in Psychiatry,

18(6), 633-639.
Montel, S. R., & Bungener, C. (2009). Coping and quality of life of patients with
Parkinson disease who have undergone deep brain stimulation of the subthalamic
nucleus. Surgical Neurology, 72(2), 105-110.
Moss-Morris, R., Weinman, J., Petrie, K., Horne, R., Cameron, L., & Buick, D.
(2002). The revised illness perception questionnaire (IPQ-R). Psychology and
Health, 17(1), 1-16.
Muzerengi, S., Lewis, H., Edwards, M., Kipps, E., Bahl, A., Martinez-Martin, P., &
Chaudhuri, K. R. (2006). Non-motor symptoms in Parkinson's disease: an
underdiagnosed problem. Aging Health, 2(6), 967-982.
NICE (2011). CG123: Common mental health disorders: Identification and pathways
to care. Appendix E: Glossary. http://publications.nice.org.uk/common-mental-
health-disorders-cg123/appendix-e-glossary retrieved 1st March 2013.
Nilsson, F. M., Kessing, L. V., & Bolwig, T. G. (2001). Increased risk of developing
Parkinson's disease for patients with major affective disorder: a register study. Acta
Psychiatrica Scandinavica, 104(5), 380-386
Nolan, M., Grant, G., & Keady, J. (1996). Understanding family care: a
multidimensional model of caring and coping. Buckingham: Open University Press.
O'Reilly, F., Finnan, F., Allwright, S., Smith, G. D., & Ben-Shlomo, Y. (1996). The
effects of caring for a spouse with Parkinson's disease on social, psychological and
physical well-being. The British Journal of General Practice, 46(410), 507.
OSullivan, S. S., Evans, A. H., & Lees, A. J. (2009). Dopamine Dysregulation

Syndrome. CNS drugs, 23(2), 157-170.
111
Oguru, M., Tachibana, H., Toda, K., Okuda, B., & Oka, N. (2010). Apathy and
depression in Parkinson disease. Journal of Geriatric Psychiatry and Neurology,
23(1), 35-41.
Okai, D., Samuel, M., AskeyJones, S., David, A. S., & Brown, R. G. (2011). Impulse
control disorders and dopamine dysregulation in Parkinsons disease: a broader
conceptual framework. European Journal of Neurology, 18(12), 1379-1383.
Olanow, C. W., Watts, R. L., & Koller, W. C. (2001). An algorithm (decision tree) for
the management of Parkinsons disease (2001): treatment guidelines. Neurology,
56(suppl 5), S1-S88.
Perez, P., Helmer, C., Foubert-Samier, A., Auriacombe, S., Dartigues, J., & Tison,
F. (2012). Risk of dementia in an elderly population of Parkinsons disease patients:
A 15-year population-based study. Alzheimers and Dementia, 8, 463 469.
Petersen, R. C., Smith, G. E., Waring, S. C., Ivnik, R. J., Tangalos, E. G., &
Kokmen, E. (1999). Mild cognitive impairment: clinical characterization and
outcome. Archives of Neurology, 56(3), 303.
Pinquart, M., & Srensen, S. (2003). Associations of stressors and uplifts of

caregiving with caregiver burden and depressive mood: a meta-analysis. The
Journals of Gerontology Series B: Psychological Sciences and Social Sciences,
58(2), P112-P128.
Pluck, G. C., & Brown, R. G. (2002). Apathy in Parkinsons disease. Journal of

Neurology, Neurosurgery & Psychiatry, 73(6), 636-642.
Politis, A. M., Vozzella, S., Mayer, L. S., Onyike, C. U., Baker, A. S., & Lyketsos, C.
G. (2004). A randomized, controlled, clinical trial of activity therapy for apathy in
patients with dementia residing in longterm care. International journal of geriatric
psychiatry, 19(11), 1087-1094.
Politis, M., Wu, K., Molloy, S., G Bain, P., Chaudhuri, K., & Piccini, P. (2010).
Parkinson's disease symptoms: the patient's perspective. Movement Disorders,
25(11), 1646-1651.
112
Prakke, H. M. (2012). Spousal relationships in which one partner has early cognitive
problems. Dementia, 11(2), 199-215.
Rajput, A. H. (1992). Frequency and cause of Parkinson's disease. The Canadian

Journal of Neurological Sciences, 19(1 Suppl), 103.
Reijnders, J. S., Ehrt, U., Weber, W. E., Aarsland, D., & Leentjens, A. F. (2008). A
systematic review of prevalence studies of depression in Parkinson's disease.
Reuther, M., Spottke, E. A., Klotsche, J., Riedel, O., Peter, H., Berger, K., ... &
Dodel, R. C. (2007). Assessing health-related quality of life in patients with
Parkinson's disease in a prospective longitudinal study. Parkinsonism & Related
Disorders, 13(2), 108-114.
Riedel, O., Klotsche, J., Spottke, A., Deuschl, G., Frstl, H., Henn, F., ... & Wittchen,
H. U. (2008). Cognitive impairment in 873 patients with idiopathic Parkinson's
disease. Journal of Neurology, 255(2), 255-264.
Rodrguez-Violante, M., Cervantes-Arriaga, A., Berlanga-Flores, C., & Ruiz-Chow,

A. (2012). Prevalence and determinants of depression in Mexican patients with
Parkinson's disease. Clinical Neurology and Neurosurgery.
Rymer, S., Salloway, S., Norton, L., Malloy, P., Correia, S., & Monast, D. (2002).
Impaired awareness, behavior disturbance, and caregiver burden in Alzheimer
disease. Alzheimer Disease & Associated Disorders, 16(4), 248-253.
Samii, A, Nutt, J.G., Ransom, B. R. (2004). Parkinson's disease. Lancet, 363(9423),

1783-1793.
Schiehser, D. M., Liu, L., Lessig, S. L., Song, D. D., Obtera, K. M., Burke III, M. M.,
... & Vincent Filoteo, J. (2013). Predictors of Discrepancies in Parkinson's Disease
Patient and Caregiver Ratings of Apathy, Disinhibition, and Executive Dysfunction
before and after Diagnosis. Journal of the International Neuropsychological Society:
JINS, 1-10.
113
Schrag, A. (2004). Psychiatric aspects of Parkinsons disease. Journal of Neurology,
251(7), 795-804.
Schrag, A., Barone, P., Brown, R. G., Leentjens, A. F., McDonald, W. M., Starkstein,
S., ... & Goetz, C. G. (2007). Depression rating scales in Parkinson's disease:
critique and recommendations. Movement Disorders, 22(8), 1077-1092.
Schrag, A., BenShlomo, Y., Brown, R., David Marsden, C., & Quinn, N. (1998).
Youngonset Parkinson's disease revisitedclinical features, natural history, and
mortality. Movement Disorders, 13(6), 885-894.
Schrag, A., Hovris, A., Morley, D., Quinn, N., & Jahanshahi, M. (2003).
Youngversus olderonset Parkinson's disease: Impact of disease and psychosocial
consequences. Movement Disorders, 18(11), 1250-1256.
Schrag, A., Hovris, A., Morley, D., Quinn, N., & Jahanshahi, M. (2006). Caregiver-
burden in parkinson's disease is closely associated with psychiatric symptoms, falls,
and disability. Parkinsonism & related disorders, 12(1), 35.
Schrag, A., Jahanshahi, M., & Quinn, N. (2000). How does Parkinson's disease
affect quality of life? A comparison with quality of life in the general population.
Schrag, A., Jahanshahi, M., & Quinn, N. (2001). What contributes to quality of life in
patients with Parkinson's disease?. Journal of Neurology, Neurosurgery &
Psychiatry, 69(3), 308-312.
Shulman, L. M., Taback, R. L., Rabinstein, A. A., & Weiner, W. J. (2002). Non-
recognition of depression and other non-motor symptoms in Parkinson's disease.
Parkinsonism & Related Disorders, 8(3), 193-197
Schuurman, A. G., Van Den Akker, M., Ensinck, K. T. J. L., Metsemakers, J. F. M.,
Knottnerus, J. A., Leentjens, A. F. G., & Buntinx, F. (2002). Increased risk of
Parkinsons disease after depression A retrospective cohort study. Neurology,
58(10), 1501-1504.
114
Secker, D. L., & Brown, R. G. (2005). Cognitive behavioural therapy (CBT) for
carers of patients with Parkinsons disease: a preliminary randomised controlled
trial. Journal of Neurology, Neurosurgery & Psychiatry, 76(4), 491-497.
Shiba, M., Bower, J. H., Maraganore, D. M., McDonnell, S. K., Peterson, B. J.,
Ahlskog, J. E., ... & Rocca, W. A. (2000). Anxiety disorders and depressive
disorders preceding Parkinson's disease: A casecontrol study. Movement
Disorders, 15(4), 669-677
Simms, S. E. (2012). Quality of Life and Caregiver Burden in Parkinsons Disease:

The Role of Patients and Carers Illness Appraisals (Doctoral dissertation).
Sink, K. M., Holden, K. F., & Yaffe, K. (2005). Pharmacological treatment of

neuropsychiatric symptoms of dementia. JAMA: the journal of the American Medical
Association, 293(5), 596-608.
Sawek, J., Derejko, M., & Lass, P. (2005). Factors affecting the quality of life of
patients with idiopathic Parkinson's disease-a cross-sectional study in an outpatient
clinic attendees. Parkinsonism & related disorders, 11(7), 465-468
Starkstein, S. E., Mayberg, H. S., Preziosi, T., Andrezejewski, P., Leiguarda, R., &
Robinson, R. G. (1992). Reliability, validity, and clinical correlates of apathy in
Parkinsons disease. Journal of Neuropsychiatry and Clinical Neuroscience, 4(2),
134-139.
Steadman, P. L., Tremont, G., & Davis, J. D. (2007). Premorbid relationship

satisfaction and caregiver burden in dementia caregivers. Journal of Geriatric
Psychiatry and Neurology, 20(2), 115-119.
Sterba, K. R., DeVellis, R. F., Lewis, M. A., DeVellis, B. M., Jordan, J. M., &
Baucom, D. H. (2008). Effect of couple illness perception congruence on
psychological adjustment in women with rheumatoid arthritis. Health Psychology,
27(2), 221-229.
Strauss, E., Sherman, E. M. S. & Spreen, O. (2006). A Compendium of

Neuropsychological Tests. New York: Oxford University Press.
115
Suzukamo, Y., Ohbu, S., Kondo, T., Kohmoto, J., & Fukuhara, S. (2006).
Psychological adjustment has a greater effect on healthrelated quality of life than
on severity of disease in Parkinson's disease. Movement Disorders, 21(6), 761-766.
Swindells, S., Mohr, J., Justis, J. C., Berman, S., Squier, C., Wagener, M. M., &
Singh, N. (1999). Quality of life in patients with human immunodeficiency virus
infection: Impact of social support, coping style and hopelessness. International
journal of STD & AIDS.
Tanji, H., Koyama, S., Wada, M., Kawanami, T., Kurita, K., Tamiya, G et al. (2013).
Comparison of caregiver strain in Parkinson's disease between Yamagata, Japan,
and Maryland, The United States. Parkinsonism & Related Disorders, 19 (6), 628-
633.
Trend, P., Kaye, J., Gage, H., Owen, C., & Wade, D. (2002). Short-term
effectiveness of intensive multidisciplinary rehabilitation for people with Parkinson's
disease and their carers. Clinical rehabilitation, 16(7), 717-725
Voon, V., Sohr, M., Lang, A. E., Potenza, M. N., Siderowf, A. D., Whetteckey, J., ...
& Stacy, M. (2011). Impulse control disorders in Parkinson disease: a multicenter
casecontrol study. Annals of neurology, 69(6), 986-996.
Walker, R. B., & Luszcz, M. A. (2009). The health and relationship dynamics of late-
life couples: A systematic review of the literature. Ageing and Society, 29(03), 455-
480.
Ware, T., Matosevic, T., Hardy, B., Knapp, M., Kendall, J., & Forder, J. (2003).
Commissioning care services for older people in England: the view from care
managers, users and carers. Ageing and Society, 23(4), 411-428.
Weintraub, D., Comella, C. L., & Horn, S. (2008). Parkinsons diseasepart 1:

pathophysiology, symptoms, burden, diagnosis, and assessment. Am J Manag
Care, 14(2 Suppl), S40-S48.
Weintraub, D., Koester, J., Potenza, M. N., Siderowf, A. D., Stacy, M., Voon, V., ... &
Lang, A. E. (2010). Impulse control disorders in Parkinson disease: a cross-
sectional study of 3090 patients. Archives of Neurology, 67(5), 589.
116
Weintraub, D., Moberg, P. J., Duda, J. E., Katz, I. R., & Stern, M. B. (2004). Effect of
psychiatric and other nonmotor symptoms on disability in Parkinson's disease.
Journal of the American Geriatrics Society, 52(5), 784-788.
Weintraub, D., & Stern, M. B. (2005). Psychiatric complications in Parkinson

disease. American Journal of Geriatric Psych, 13(10), 844-851
Weisskopf, M. G., Chen, H., Schwarzschild, M. A., Kawachi, I., & Ascherio, A.
(2003). Prospective study of phobic anxiety and risk of Parkinson's disease.
Whitney, K. A., Shepard, P. H., Mariner, J., Mossbarger, B., & Herman, S. M.
(2010). Validity of the Wechsler Test of Adult Reading (WTAR): Effort considered in
a clinical sample of US military veterans. Applied Neuropsychology, 17(3), 196-204.
Wolff, J. L., Kasper, J. D., & Shore, A. D. (2008). Long-term care preferences
among older adults: a moving target?. Journal of Aging & Social Policy, 20(2), 182-
200.
Yaari, R., Fleisher, A. S., Gamst, A. C., Bagwell, V. P., & Thal, L. J. (2006). Utility of
the telephone interview for cognitive status for enrollment in clinical trials.
Alzheimer's and Dementia, 2(2), 104-109.
ach, M., Friedman, A., Sawek, J., & Derejko, M. (2004). Quality of life in Polish
patients with longlasting Parkinson's disease. Movement Disorders, 19(6), 667-672.
Zahodne, L. B., Marsiske, M., & Bowers, D. (2013). A latent class analysis of
psychological disturbance in Parkinson's disease. International Journal of Geriatric
Psychiatry.
Zhu, K., Hilten, J. J., Putter, H., & Marinus, J. (2013). Risk factors for hallucinations
in Parkinson's disease: Results from a large prospective cohort study. Movement
Disorders. DOI: 10.1002/mds.25389
Zigmond, A. S., & Snaith, R. P. (1983). The hospital anxiety and depression scale.
Acta Psychiatrica Scandinavica, 67(6), 361-370.
117
Appendix 1: Confirmation letter from ethics committee
118
119
Appendix 2: Study Information on Leaflets Distributed at Parkinsons UK
Support Group Meetings
Living with Parkinsons and its Problems: A Couples Perspective
My name is Dr Anna Janssen and I am a Trainee Clinical Psychologist at Kings

College London. My project entitled Living with Parkinsons and its Problems: A
Couples Perspective is looking at aspects of Parkinsons from the perspective of
the person and their spouse or partner. For this project I am hoping to interview
couples, one member of which has Parkinsons.
Aims of the Research
The specific aims of the project are to identify which non-movement-related

problems are most challenging for the person with Parkinsons and their
spouse/partner and to assess what their impact is on them individually and as a
couple.
Who can take part?
We are seeking couples who are willing to be interviewed about their experiences
of living with Parkinsons. Each couple would include a person with Parkinsons and
their spouse/partner. We aim to recruit 30 couples in total. We aim to see couples
for a single session either at Kings College in South London or in their homes. A
session would last up to approximately 3 hours including breaks where necessary.
Any travel costs will be reimbursed. All data will be confidential. Participants are
under no obligation to participate and may withdraw from the study at any time.
For further information about the study, please feel free to contact me at
anna.janssen@kcl.ac.uk
More information about the study can be found online by visiting:
Parkinsons UK Online Forum: http://www.parkinsons.org.uk/pdsforum/
The study has met with the approval of Parkinsons UK and has received ethical
approval from the Psychiatry, Nursing and Midwifery Research Ethics Subcommittee
at Kings College London.
120
Appendix 3: Study advertisement posted on Parkinsons UK online research
forum
Researchers at Kings College London are looking for 30 couples where one
member has Parkinsons to take part in a study investigating a couples perspective
of living with Parkinsons and its problems.
You and your partner may be eligible to take part if one of you has been diagnosed
with Parkinsons at least two years ago, and are prepared to travel to London (travel
expenses will be reimbursed).
Participants will be asked to fill out some questionnaires and talk about your
experiences of Parkinsons.
More information is in the participant information sheet which is on our website at

http://bit.ly/RjbERn
The study is funded by Kings College London. It is not managed by Parkinson's UK.
The closing date for recruiting participants for this study is 31 December 2012.
If you are interested in taking part, or wish to find out more information or whether
you are eligible for the study, please contact the researchers directly:
Dr Anna Janssen, Clinical Psychologist in training

Institute of Psychiatry, Kings College London
Telephone: 07545565550
Email: anna.janssen@kcl.ac.uk
If anyone has experience of taking part in studies, it would be interesting to hear

about it.
Emily Hughes
Research Support Network Manager
http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=research&topic=couples-
needed-to-take-part-in-a-research-study-a&page=1#hi-ef-i-m-currently-into-the-third-
week-of-the-ls
Posted - 05 Jul 2012 14:23
121
Appendix 4: Researcher correspondence on Parkinsons UK online research
forum http://www.parkinsons.org.uk/research
My name is Dr Anna Janssen and I am a Trainee Clinical Psychologist at Kings

College London. My project entitled Living with Parkinsons and its Problems: A
Couples Perspective is looking at aspects of Parkinsons from the perspective of
the person and their spouse or partner. For this project I am hoping to interview
couples, one member of which has Parkinsons.
Please see below for further information about the study. Please read this carefully
before deciding whether or not you wish to take part. Please feel free to contact me
at anna.janssen@kcl.ac.uk if you want any further information before deciding
whether to take part. If you would like to talk to me before deciding whether to
participate, please email me with a telephone number and convenient days/times
and I will call you back. If you do decide to take part you can change your mind and
withdraw at any time, without giving a reason. A printed copy of this information will
be provided for you if you decide to participate so you do not need to print this.
[Link to Participant Information sheet]
122
Appendix 5: Participant Information Sheet
Participant Information Sheet
Living with Parkinsons and its Problems:
A Couples Perspective
[PNM/11/12-13]
We would like to invite you to participate in this research project.
This project has been granted ethics approval by the Psychiatry, Nursing and
Midwifery Research Ethics Subcommittee at Kings College London. The study has
also been reviewed by the Parkinsons UK research department who have
expressed their full support of the study.
You should only participate if you want to; choosing not to take part will not
disadvantage you in any way. Before you decide whether you want to take part, it is
important for you to understand why the research is being done and what your
participation will involve. Please take time to read the following information carefully
and discuss it with others if you wish. Ask us if there is anything that is not clear or if
you would like more information.
What is the purpose of the study?

Some people with Parkinsons can experience problems related to mood, behaviour
and thinking processes including attention, concentration and memory. We already
know that such problems can affect their quality of daily life. We are looking at how
people with Parkinsons and their spouse/partner view these problems, and what
impact it has on them and their relationship as a couple. We wish to improve our
understanding of this important area of Parkinsons to help develop ways of
providing better information, support and care.
123
Aims of the Research
The specific aims of the project are to identify which non-movement-related
problems are most challenging for the person with Parkinsons and their
spouse/partner and to assess what their impact is on them individually and as a
couple.
Who can take part?

We are seeking couples where one of them has Parkinsons that was diagnosed at
least 2 years ago
For the study it is necessary that you can see adequately (with glasses); hear and
speak clearly enough to permit the assessments, and be able to complete pencil-
and-paper tasks
The person with Parkinsons should not have any other significant neurological or
psychiatric condition
Do I have to take part?

No. It is up to you to decide whether or not to take part. If you do decide to take part
you will keep this information sheet and be asked to sign a consent form. If you
decide to take part you are still free to withdraw at any time and without giving a
reason. A decision to withdraw at any time, or a decision not to take part, will not
affect the standard of care you receive, now or in the future. In addition to
withdrawing yourself from the study you may also withdraw any data/information you
have already provided up until it is prepared for use in the final report (February,
2013).
What will happen to me if I take part?

If you think that you would like to take part Dr Janssen will contact you by telephone
so that she can answer any more question that you may have. She will also ask you
some questions to check that you are suitable for the study. If you do then decide to
take part we will arrange a time for her to visit you at home or for you to come to the
Institute of Psychiatry, Kings College London in South East London (whichever you
prefer).
Before the visit, you will be sent some questionnaires ask you about your current
health, quality of life, and mood. These should take you each about 20 minutes. We
will collect them from you when we meet. If you have any difficulty with these we will
be very happy to help you when we meet.
124
When we first meet you will be asked to sign a consent form. After this we would like
to speak with you as a couple and ask you some questions about your and your
partners experiences of Parkinsons. We will talk to you individually so that we get
your personal perceptions of the problems and their impact, and ask you to
complete one more questionnaire about your relationship with your partner. We will
ask for your consent to audio-record the discussion we have with each of you. You
can choose not to have it audio-recorded if you prefer or to stop the recording at any
time. Finally, the person with Parkinsons will be asked to do three brief tasks to
assess memory and concentration. The session will take approximately 1-2 hours
for each participant, including time for breaks and for you to ask any more questions
that you may have.
The types of questions we will ask you include:

The nature and extent of the Parkinsons symptoms you experience;
Whether or not you experience problems such as depression or anxiety,
delusions, hallucinations or aggression, and any increase in behaviours
relating to gambling, sex, eating and shopping;
The types of activities and behaviours that the person with Parkinsons
disease engages in;
Current health, quality of life, and mood of both people;
Your views on your relationship;
The tasks of memory and concentration for the person with Parkinsons will
include reading a list of words aloud, repeating phrases, identifying visual
patterns and naming objects.
Are there any risks in taking part?

We do not anticipate and risks or adverse reactions. You may feel a bit tired but you
can stop or pause for a break at any time. In talking about the problems of living with
Parkinsons some people can feel upset. If so, you can pause or stop at any time.
You can also say if there are any questions that you do not want to answer. Dr
Janssen will be able to provide you with further information about any of the issues
that arise, either on the day or straight afterwards. Most of this is available from
Parkinsons UK, and Dr Janssen will bring with her a range of their fact and advice
sheets to give to you if you are interested.
125
Are there any advantages of taking part?
There will be no direct benefit to you by taking part. However, it is hoped that this
research will improve our knowledge of Parkinsons and its impact. We will send you
a summary of the research findings once study has been completed.
Expenses
We will reimburse your travel expenses if you decide to visit us at the Institute of
Psychiatry, Kings College London
Will my taking part in this study be kept confidential?

All information which is collected about you during the course of the research will be
kept strictly confidential. We will not tell your spouse/partner about your responses
to any of the questionnaires or what is said in the interview. Only Dr Janssen and
her supervisors (Dr Lidia Yaguez and Professor Richard Brown) will have access to
the information which will be stored securely at Kings College London. The paper
and electronic records will be identified by a unique code number, not with your
name. All personal details including your name and address will be kept securely
and separate from the study information. Even after the interview you can ask for
your data to withdrawn and destroyed.
If the assessment reveals information that is thought important for your health and
well-being we will ask your permission to write to your GP. You will be sent a copy of
any such letter. You have the right to refuse permission to inform your GP. Only if
assessment reveals that you are at risk of harm to self or others would we need to
take appropriate steps to ensure your safety which may involve informing your GP.
We will consult with you before taking any such action.
The data collected at screening for any person who is found not to be suitable for
the study will be shredded and disposed of.
What will happen to the results of the research study?

The results of the research will form part of Dr Janssens Doctoral thesis. A
summary will be sent to Parkinsons UK. A report of the work may be published in a
scientific journal or presented at scientific meetings. No personally identifiable
information from participants will be included in any of these reports or
presentations.
126
Who is organising and funding the research?
The study is being funded by Kings College London as part of Dr Janssens
Doctorate in Clinical Psychology. It is being conducted under the supervision of Dr
Lidia Ygez and Professor Richard Brown in the Department of Psychology,
Institute of Psychiatry, Kings College London.
For further information including general queries please contact:
Dr Anna Janssen (Researcher)

Department of Psychology
PO 78, Institute of Psychiatry
Addiction Sciences Building
Denmark Hill
London SE5 8AF
Telephone: 020 7848 5018
Email: anna.janssen@kcl.ac.uk
If this study has harmed you in any way please contact:
Dr Lidia Ygez (Primary Supervisor)

Department of Psychology
PO 77, Institute of Psychiatry
Henry Welcome Building
Denmark Hill
London SE5 8AF
Telephone: 020 7848 0761
Email: lidia.yaguez@kcl.ac.uk
Thank you for taking the time to consider participating in this study.
127
Appendix 6: Patient eligibility screening questionnaire
(Administered by researcher on telephone or face-to-face)
1. When were you diagnosed with Parkinsons Disease? ______________
2. Are you fluent in English? Y N
3. Have you ever sustained a head injury? Y N

(loss of consciousness > 20 mins)
4. Do you have epilepsy? Y N
5. Have you ever had a stroke? Y N
6. If you have any problems writing are you able to complete questionnaires by
ticking boxes? Y N
7. Can you read text of a normal size (eg the newspaper) either with or without
glasses? Y N
8. Have you ever received treatment for any psychiatric disturbance (e.g.,
schizophrenia, bipolar disorder, depression, alcohol or substance misuse)?
Y N
128
Appendix 7: Telephone Interview for Cognitive Status-Modified
(TICS-M)
TICS-m Questions Points

First name 1
Last name 1
Month 1
Day of month 1
Year 1
Day of week 1
Season 1
Age 1
Phone number 1
Count backwards from 20 to 1 2
10-word list immediate repetition 10
Stimulus word
1. pipe
2. whip
3. pillow
4. chest
5. silk
6. cabin
7. elephant
8. theatre
9. watch
10. giant
Count backwards from 100 by 7s 5
100 93 86 79 72 65 58 51 44 37 30 23 16 9 2
129
Tool used to cut paper? 1
Number in a dozen? 1
Prickly plant in desert? 1
Animal that wool comes from? 1
Repeat: No ifs and or buts 1
Repeat: Methodist Episcopal 1
PM first name 1
PM last name 1
Deputy PM first name 1
Deputy PM last name 1
Tap five times on the phone 2
Opposite of east 1
Opposite of generous 1
10-word list delayed recall 10
Stimulus word
1. pipe
2. whip
3. pillow
4. chest
5. silk
6. cabin
7. elephant
8. theater
9. watch
10. giant
Total Score 50
130
Appendix 8a: Instructions to patients for completing pre-interview
questionnaire pack
This pack contains questionnaires to be completed by the

PERSON WITH PARKINSONS
THERE ARE 5 QUESTIONNAIRES HERE RELATING TO:
Some basic details about you

Some details about your experience of Parkinsons
Your views about your daily activities
Your mood
Your quality of life
PLEASE COMPLETE ALL QUESTIONNAIRES IN PRIVATE
WITHOUT SHOWING THEM TO ANYONE, PLACE THEM IN

THE ENVELOPE MARKED PERSON WITH PARKINSONS
SEAL THE ENVELOPE AND KEEP IN A SAFE PLACE
DR ANNA JANSSEN (THE RESEARCHER) WILL COLLECT

THE ENVELOPE WHEN SHE MEETS WITH YOU.
IF YOU HAVE ANY DIFFICULTY WITH ANY OF THE

QUESTIONS DONT WORRY SHE CAN HELP YOU WHEN
YOU MEET HER.
THANK YOU
131
Appendix 8b: Instructions to carers for completing pre-interview
questionnaire pack
This pack contains questionnaires to be completed by the
SPOUSE / PARTNER
of the person with Parkinsons.
THERE ARE 5 QUESTIONNAIRES HERE RELATING TO:
Some basic details about you

Your views about your spouse/ partners daily activities
Your mood
Your quality of life
The impact of Parkinsons on you as carer
PLEASE COMPLETE ALL QUESTIONNAIRES IN PRIVATE
WITHOUT SHOWING THEM TO ANYONE, PLACE THEM IN

THE ENVELOPE MARKED SPOUSE / CARER
SEAL THE ENVELOPE AND KEEP IN A SAFE PLACE
DR ANNA JANSSEN (THE RESEARCHER) WILL COLLECT

THE ENVELOPE WHEN SHE MEETS WITH YOU.
IF YOU HAVE ANY DIFFICULTY WITH ANY OF THE

QUESTIONS DONT WORRY SHE CAN HELP YOU WHEN
YOU MEET HER.
THANK YOU
132
Appendix 9: Participant Consent Form
CONSENT FORM FOR PARTICIPANTS IN RESEARCH STUDIES
Please complete this form after you have read the

Information Sheet and/or listened to an explanation
about the research.
Title of Study: Living with Parkinsons and its Problems:
A Couples Perspective
Psychiatry, Nursing and Midwifery Research Ethics Subcommittee Ref:

PNM/11/12-13
Thank you for considering taking part in this research. The person organising the
research must explain the project to you before you agree to take part. If you have
any questions arising from the Information Sheet or explanation already given to
you, please ask the researcher before you decide whether to join in. You will be
given a copy of this Consent Form to keep and refer to at any time.
I understand that if I decide at any time during the research that I no longer
wish to participate in this project, I can notify the researchers involved and
withdraw from it immediately without giving any reason. Furthermore, I
understand that I will be able to withdraw my data up to February 2013.
Please tick or initial
I consent to the processing of my personal information for the purposes

explained to me. I understand that such information will be handled in
accordance with the terms of the Data Protection Act 1998.
133
Optional
I consent to the investigators contacting my GP if they identify information

relevant to my health and care. I understand that I will be contacted first, and
will receive a copy of the letter.
I consent to having my interview with the researcher audio-recorded.

Participants Statement:
I ___________________ _______agree that the research project named above has

been explained to me to my satisfaction and I agree to take part in the study. I have
read both the notes written above and the Information Sheet about the project, and
understand what the research study involves.
Signed Date______________
Investigators Statement:
I ___________________________ confirm that I have carefully explained the
nature, demands and any foreseeable risks (where applicable) of the proposed
research to the participant.
Signed Date_______________
134
Appendix 10: Demographic questionnaire for patients and carers
1. What is your date of birth? ______/______/_______

[Day / Month / Year ]
2. Gender (circle one) F M
3. What age were you when you left school? ___________________
4. How many years did you spend in

further education (college / university)? ___________________
5. Employment status (please tick one)
Employed full time ___
Employed part time ___
Unemployed / seeking work ___
Retired age-related ___
Retired health-related ___
6. Current or most recent occupation ________________________
7. How long have you been with your current partner / husband / wife?
_______________________
135
Appendix 11: Pre-interview patient clinical questionnaire
Clinical Questionnaire
(To be completed by person with Parkinsons)
1. Date of diagnosis ____________________________
2. Which medications do you currently take (if any) for your Parkinsons disease
symptoms?
Name Tablet strength Number per day
____________________________ _____________ ___________
____________________________ _____________ ___________
____________________________ _____________ ___________
____________________________ _____________ ___________
____________________________ _____________ ___________
3. Have you had any surgical treatments for your Parkinsons disease? (if so please
specify)
___________________________________________________
136
Appendix 12a: Parkinsons Activities of Daily Living Scale (PADLS) patient
version
How Much Does Parkinsons Affect Your Life?
Please tick one of the descriptions that best describes how your Parkinsons disease
has affected your day-to-day activities in the last month.
1 No difficulties with day-to-day activities.
For example: Your Parkinsons disease at present is not affecting your

daily living.
2 Mild difficulties with day-to-day activities.
For example: Slowness with some aspects of housework, gardening or

shopping. Able to dress and manage personal hygiene completely
independently but rate is slower. You may feel that your medication is
not quite effective as it was.
3 Moderate difficulties with day-to-day activities.
For example: Your Parkinsons disease is interfering with your daily

activities. It is increasingly difficult to do simple activities without some
help such as rising from a chair, washing, dressing, shopping,
housework. You may have some difficulties walking and may require
assistance. Difficulties with recreational activities or the ability to drive
a car. The medication is now less effective.
4 High levels of difficulties with day-to-day activities.
For example: You now require much more assistance with activities of
daily living such as washing, dressing, housework or feeding yourself.
You may have greater difficulties with mobility and find you are
becoming more dependent for assistance from others or aids and
appliances. Your medication appears to be significantly less effective.
5 Extreme difficulties with day-to-day activities.
For example: You require assistance in all daily activities. These may
include dressing, washing, feeding yourself or walking unaided. You
may now be housebound and obtain little or no benefit from your
medication.
137
Appendix 12b: Parkinsons Activities of Daily Living Scale (PADLS) carer
version
How Much Does Parkinsons Affect Your Life?
Carer:
Please tick one of the descriptions that best describes how your partners
Parkinsons disease has affected HIS / HER day-to-day activities in the last month.
1 No difficulties with day-to-day activities.
For example: My partners Parkinsons disease at present is not

affecting his/her daily living.
2 Mild difficulties with day-to-day activities.
For example: My partner is slower with some aspects of housework,

gardening or shopping. S/he is able to dress and manage personal
hygiene completely independently but rate is slower. You may feel that
his/her medication is not quite effective as it was.
3 Moderate difficulties with day-to-day activities.
For example: Your partners Parkinsons disease is interfering with

his/her daily activities. It is increasingly difficult for him/her to do simple
activities without some help such as rising from a chair, washing,
dressing, shopping, housework. S/he may have some difficulties
walking and may require assistance. Difficulties with recreational
activities or the ability to drive a car. The medication is now less
effective.
4 High levels of difficulties with day-to-day activities.
For example: Your partner now requires much more assistance with
activities of daily living such as washing, dressing, housework or
feeding yourself. S/he may have greater difficulties with mobility and
find s/he is becoming more dependent for assistance from others or
aids and appliances. His/her medication appears to be significantly
less effective.
5 Extreme difficulties with day-to-day activities.
For example: Your partner requires assistance in all daily activities.

These may include dressing, washing, feeding yourself or walking
unaided. S/he may now be housebound and obtain little or no benefit
from his/her medication.
138
Appendix 13: Euro-QoL 5D
Mobility
I have no problems in walking about
I have some problems in walking about
I am confined to bed
Self-care
I have no problems with self-care
I have some problems washing or dressing myself
I am unable to wash or dress myself
Usual activities (e.g. work, study, housework, family or leisure activities)

I have no problems with performing my usual activities
I have some problems with performing my usual activities
I am unable to perform my usual activities
Pain/Discomfort
I have no pain or discomfort
I have moderate pain or discomfort
I have extreme pain or discomfort
Anxiety/Depression
I am not anxious or depressed
I am moderately anxious or depressed
I am extremely anxious or depressed
139
Appendix 14: Extended Neuropsychiatric Interview (NPI-E)
The NPI-E comprises 14 domains:
Domains 1-9: domains 1-9 from the NPI (Cummings, 1994) which assess:
1. Delusions
2. Hallucinations
3. Agitation/Aggression
4. Depression
5. Anxiety
6. Euphoria
7. Apathy
8. Disinhibition
9. Irritability
Domain 10: Memory and Attention
Domains 11-14: Domains from the Parkinsons Disease Impulse Control Disorder
Severity Rating Scale (ICD-SS; Okai et al., 2011 ) which assess:
11. Binge eating
12. Pathological ambling
13. Hypersexuality
14. Compulsive shopping
140
Administration of the NPI-E:
When using the Extended NPI (NPI-E) interview schedule below the researcher
adjusted the wording according to whether the participant is patient or carer.
For example:
Patient version (NPI-E(P)):
Hallucinations:
Do you have hallucinations such as ..
Agitation
Do you have periods when you refuse to cooperate
Carer interview (NPI-E(C)):
Hallucinations:
Does [patients name] have hallucinations such as ..
Agitation
Does [patients name] have periods when he/she refuses to cooperate
All carers were asked to rate their own distress in relation to the symptom in
question as well as the patients distress.
Scoring of the NPI-E

All domains involved a screening question to assess whether the participant
perceived the symptom to be present.
If they answered yes they were asked in detail about particular manifestations of
the symptom with a series of yes/no questions.
They were then asked to rate the frequency of the symptom (1-4) and the severity of
the symptom (1-3).
Symptom intensity score = frequency x severity.
Total NPI-E intensity score = sum of all 14 symptom intensity scores
Total CNPS-related distress score = sum of distress scores for all 14 symptoms
141
1 Delusions
142
2 Hallucinations
143
3 Agitation/Aggression
144
4 Depression
145
5 Anxiety
146
6 Elation/Euphoria
147
7 Apathy
148
8 Disinhibition
149
9 Irritability
150
10 Memory and Attention
Screening Question
Does the patient seem more forgetful than s/he used to be? Y/N
Does the patient seem less able to concentrate than s/he used to be? Y/N
NO (If no to both of these questions, proceed to next screening question).

YES (If yes to one or both of these questions, proceed to sub-questions).
1. Does the patient forget things more often than s/he used to? _______
2. Does the patient fail to remember something that happened only short time ago
(eg the topic of a discussion that was held within the last hour)? _______
3. Does the patient forget information about events that happened a long time ago
(eg over a year ago)? _______
4. Does the patient forget to do something s/he was planning to do and said you
would do (eg to make a phone call after lunch; to attend an appointment)? _______
5. Does the patient forget basic details about themselves (name, date of birth)
_______
6. Does the patient forget basic details about their surroundings (eg date, location)?
______
7. Does the patient daydream when s/he ought to be listening to something or doing
something? ________
8. Does the patient get the details of what someone told him/her mixed up and
confused? ________
9. When talking to someone, does the patient forget what s/he has just said and
perhaps then ask what was I talking about? _________
If the screening question is confirmed, determine the frequency and severity of the
forgetfulness.
Frequency:
1. Occasionally less than once per week.
2. Often about once per week.
3. Frequently several times per week but less than every day.
4. Very frequently nearly always present.
151
Severity:
1. Mild forgetfulness is notable but produces little interference with daily routines;
only mildly different from patients usual behaviour; patient responds to small
reminders when trying to recall something they have forgotten.
2. Moderate forgetfulness is very evident; may be overcome by the caregiver with
encouragement and provision of verbal and written reminders and hints; remembers
powerful events such as significant experiences involving close friends or family
members; forgets less powerful pieces of information.
3. Marked forgetfulness is very evident and usually fails to respond to any
reminders or additional support to remember.
Distress:
How emotionally distressing do you find this behaviour?
0. Not at all
1. Minimally
2. Mildly
3. Moderately
4. Severely
5. Very severely or extremely
152
Parkinsons Disease Impulse Control Disorder Severity Rating Scale (ICD-SS)
Introduction to patient
1. I am going to ask you some questions about normal behaviours such as

eating and sex or activities such as gambling and shopping.
2. In Parkinsons sometimes these can occur at unusual levels. This can cause
concern or problems.
3. I am going to ask you a number of questions to see if there are any such
problems over the last month
4. Some of the questions may seem quite personal. Try to answer each one as
honestly and openly as possible.
5. If you are unsure about the question or how to answer, just ask.
153
11 Binge Eating
Screening questions
Over the past month, have there been any times when you have eaten an unusually
large amounts of food (or certain types of food) even when not hungry? This
includes eating larger amounts, different types of food than previously (such as
more sweet things), craving food or eating more rapidly than normal. Do you find
yourself eating until you are uncomfortably full?
0 No (circle)
[NB Score 0 even if compulsive eating previously but not in the past
month]
1 Yes
If Yes document which from above_________________ and continue.
Do you or your partner believe this behaviour has worsened in relation to

Parkinsons disease and associated medications?
0 No (circle)
1 Yes If Yes continue.
Clinician agree given patient/carer account and what is know from history?
0 No (circle)
154
Intensity of compulsive eating
1. How often would you say this occurred in an average month? (e.g. over the past
6 months). What is the least number of times you would eat excessively? What
would be the most? [NB: Include all forms of abnormal eating behaviour]
Min Max
Less than once a month 1 1
Once a month 2 2
1 to 3 times a month 3 3
1 to 3 times a week 4 4
Once a day 6 6
1 to 3 times a day 7 7
More than 3 times a day 8 8
2. How often have you eaten excessively in the past month? (rate 1-8) ______
3. In the past month, how often episodes have you felt like you have lost control of
your eating (e.g. eating much more than normal, eating at unusual times for
instance during the night or soon after a meal)? What is the least it is likely to
be? What is the most?
Min Max
Once a month 2 2
Once a day 6 6
155
4. How long do you spend on these eating episodes on each session in the past
month? What is the shortest time? What is the longest time?
Min No Max No
Less than 5 minutes 1 1
5-10 minutes 2 2
10-20 minutes 3 3
20-30 minutes 4 4
30-60 minutes 5 5
1-2 hours 6 6
2-4 hours 7 7
More than 4 hours 8 8
5. In the past month, how much time do you spend thinking about food per day?
Min No Max No
5-10 minutes 2 2
10-20 minutes 3 3
20-30 minutes 4 4
30-60 minutes 5 5
1-2 hours 6 6
2-4 hours 7 7
6. What is the largest amount of food you have eaten in the past month? What did
you eat at the time? [describe food stuff and quantity (grams/pounds- estimate
kcal)
_________
156
Impact of compulsive eating
7. Has your eating affected you ability to do other things that you would like to do?
0 No impact
1 Slight impact caused by time spent thinking about, acquiring and

eating; or caused by cost of food on other activities.
2 Moderate impact caused by time spent thinking about, acquiring and

3 Marked impact caused by time spent thinking about, acquiring and

9 NA
8. In the past 6 months have put on weight due to your eating?

0 No weight gain
1 Has put on 1 to 4 kg weight (2 Ib to 9 Ib)
2 Has put on 4 to 13kg (10 Ib to 29 Ib)
3 Has put on >13kg (30Ib)
Actual amount_________
9. Are you concerned about your eating? Do you think it is problem? Are you
always open about any the amount you eat to friends and family?
0 No worry or does not admit to worry. Does not consider it a problem.
1 Slight worry reported or apparent from interview. Does not consider it

a problem
2 Moderate worry and/or considers eating a problem. May hide action

on occasion.
3 Marked concern. Considers eating a serious problem. Hides/lies

about amounts often.
10. Is your eating a concern for your family or friends? Do they think it is a problem?
0 Others do not express any concern. Do not think it is a problem.
1 Others express slight concern. Do not think it is a real problem
2 Others express moderate concern and/or consider eating a problem
3 Others express marked concern. Consider eating a serious problem.
157
Compulsive eating intensity in past month (* High/Low stake value needs to take
into account individual circumstances)
1 Infrequent small amount of food in addition to normal diet. No Large
binges*.
2 More frequent eating of small amounts especially sweet or high

caloric foods and/or occasional large amounts.
3 Very frequent snacking on sweet or high calorie food. Abnormal

eating pattern and/or frequent binges.
4 Very frequent large binges. Abnormal eating pattern (significant

health implications.
9 N/A [No compulsive eating behaviour in past month]
Compulsive eating impact in past month

1 No or minimal impact on other activities. No worry or concern
expressed by self or others. Self limited eating behaviours.
2 Moderate impact on psychosocial areas. Some concern expressed

by self and/or others. Not fully open about eating activities.
3 Significant psychosocial impact. Has stolen or used deception to

continue eating. Hides activities. Marked concern expressed by self
and/or others.
9 N/A [No compulsive eating behaviour in past month]
Compulsive eating Intensity x Impact Score _______
[NB Score 0, if no compulsive eating behaviour]
Interviewer confidence in ratings

1 Low confidence in accuracy of ratings. Likely to underestimate scale of
true problem.
2 Acceptable confidence in accuracy of ratings. Probably reflects
approximate nature and scale of problem.
3 Good confidence in accuracy of ratings. Likely to reflect true nature and
scale of problem.
158
12 Pathological Gambling
Screening questions
Over the past month have you gambled or placed a bet? This includes any form of
gambling - scratch cards, National Lottery, bingo, slot machines, card games,
betting on horse races or football matches.
0 No (circle)
[NB Score 0 even if gambled previously but not in past month]
1 Yes

0 No (circle)
0 No (circle)
159
Intensity of gambling
1. How often would you gamble in an average month? (e.g. over the past 6
months). What is the least number of times you would gamble? What would be
the most? [NB: Include all forms of gambling behaviour]
Min Max
Once a month 2 2
Once a day 6 6
2. How often have you gambled in the past month? (rate 1-8) ______
How long do you spend gambling on each session in the past month? What is
the shortest? What is the longest?
Min No Max No
5-10 minutes 2 2
10-20 minutes 3 3
20-30 minutes 4 4
30-60 minutes 5 5
1-2 hours 6 6
2-4 hours 7 7
160
3. In the past month, what is the typical size of your bet? What is the smallest?
What is the largest?
Min Max
10p 1 1
10p-19p 2 2
20p-49p 3 3
50p-99p 4 4
1-4.99 5 5
5-9.99 6 6
10-20 7 7
>20 8 8
4. In the past month, how many bets of these sizes would you place in a typical
session?
Min size Max size
1 1 1
2-3 2 2
4-5 3 3
5-10 4 4
11-15 5 5
16-25 6 6
26-50 7 7
>50 8 8
5. What is the largest single bet you have placed in the past month
_________
6. In the past month, what is the largest amount that you have won in a single
session ? [NB session of gambling, not single bet]
_________
161
7. In the past month, what is the largest amount that you have lost in a single
session?
_________
Impact of gambling
8. When you have lost money in the past month, has it affected you ability to do
other things that you would like to do, or to pay for essential items? Have you
had to cut back your spending on treats? Have you had problems paying for bills
or having enough money for food or other essentials?
0 No impact
1 Slight impact on other discretionary activities
2 Moderate impact on discretionary activities and/or some impact on

non-discretionary expenditure.
3 Marked impact on other discretionary activities and/or definite impact

on non-discretionary expenditure
9 NA [Has not lost money]
9. In the past month have you borrowed money from a family member or friend in
order to gamble? How often? Do they know what the money is for? Have you
ever taken money from them without telling, intending to replace it afterwards?
0 Has not borrowed/taken money
1 Has borrowed occasionally (1-2 times)
2 Borrows money regularly (>2 times in past month) with their

knowledge.
3 Has taken money from another person without asking permission,

and/or borrows with deception
162
10. Are you concerned about your gambling? Do you think it is problem? Are you
always open about any losses?

a problem No debt.
2 Moderate worry and/or considers gambling a problem. May be some

debt. May hide some losses.
3 Marked concern. Considers gambling a serious problem. Significant

debt. Hides/lies about losses.
11. Is your gambling a concern for your family or friends? Do they think it is a
problem?
2 Others express moderate concern and/or consider gambling a

problem
3 Others express marked concern. Consider gambling a serious

problem.
Gambling Intensity in past month (* High/Low stake value needs to take into
account individual circumstances)
1 Infrequent low stake* betting. No High stake* betting. Minimal loss
risk.
2 More frequent low stake betting, and/or occasional high stake betting.
Moderate loss risk.
3 Very frequent low stake betting and/or frequent high stake betting.
High loss risk.
4 Very frequent high stake betting. Very high loss risk.
9 N/A [No gambling behaviour in past month]
163
Gambling Impact in past month
1 No or minimal impact on other activities, or non-discretionary
expenditure. No worry or concern expressed by self or others.
Gambling within financial means. No debt. No borrowing.
2 Moderate social/financial impact on other areas of expenditure.

Some/occasional debt. Has borrowed to fund gambling. Some
concern expressed by self and/or others. Not fully open about loses.
3 Significant social/financial impact. Significant debt problem. Has

stolen or used deception to fund gambling. Hides losses. Marked
concern expressed by self and/or others.
9 N/A [No gambling behaviour in past month]
Gambling Intensity x Impact Score _______
[NB Score 0, if no gambling behaviour]

true problem.
scale of problem.
164
13 Hypersexuality
Screening questions
Over the past month, have you engaged in any sexual activity? Had thoughts about
sex? Have you asked for sex from another person? Had an orgasm? (This includes
masturbation, making sexual demands on others, promiscuity, prostitution, internet
or telephone sexual activities, or pornography)
0 No (circle)
[NB Score 0 even if sexual activity previously but not in past month]
1 Yes

0 No (circle)
0 No (circle)
165
Intensity of sexual activity
1. How often would you engage in any of these activities in an average month?
(e.g. over the past 6 months). What is the least number of times you would [
]? What would be the most? [NB: Include all forms of sexual behaviour]
Min Max
Once a month 2 2
Once a day 6 6
2. How often have you engaged in these types of behaviour in the past month?
(rate 1-8) ______
3. How long do you spend in each session doing [ ] in the past month?
What is the shortest? What is the longest? NB: If a range of sexual activities
focus on the most significant
Min No Max No
5-10 minutes 2 2
10-20 minutes 3 3
20-30 minutes 4 4
30-60 minutes 5 5
1-2 hours 6 6
2-4 hours 7 7
166
4. In the past month, how long do you spend looking at pornography or other forms
of sexual material? What is the shortest? What is the longest?
Min No Max No
5-10 minutes 2 2
10-20 minutes 3 3
20-30 minutes 4 4
30-60 minutes 5 5
1-2 hours 6 6
2-4 hours 7 7
5. In the past month, how much of your day do you spend thinking about sex or
seeking sexual experiences (including imagery, time spent fantasising about an
ongoing or wished for sexual relationship).
Min No Max No
5-10 minutes 2 2
10-20 minutes 3 3
20-30 minutes 4 4
30-60 minutes 5 5
1-2 hours 6 6
2-4 hours 7 7
6. What is the longest time you spent on a continuous period of sexual activity in
the past month
_________
167
7. In the past month, what is the longest amount of time engaged in sexual related
activity in a single day? [NB single day, not single session]
_________
8. Have there been any days when you have not engaged in any sexually related
activity
Y/N
Impact of sexual activity
9. Over the past month, has involvement in these activities affected your ability to
do other things that you would like to do? Do you or your partner feel it has
affected their ability for reciprocal affection?
0 No impact
1 Slight impact on other day to day activities.
2 Moderate impact on other day to day activities and/or some impact

on relationship
3 Marked impact on other day to day activities and/or definite impact on

relationship
9 NA [Not in a relationship]
10. Have you hidden these behaviours from others? Does your partner know you
engage in these activities and how often they occur? Has there been any
financial cost? Has this behaviour got you into trouble with the law? Do you think
it has affected how other people act to you? Have you placed yourself at risk of
acquiring a sexually transmitted disease since your increase or change in sexual
activity?
0 No financial, social, legal or health costs
1 Low financial or social costs and manageable. No other

consequences
2 Noticeable financial and social costs.
3 Significant costs involving social or legal sanction or health risk
168
11. Are you concerned about your sexual behaviour(s)? Do you think it is problem?
Are you always open it to your partner?

a problem. Open about activity to partner.
2 Moderate worry and/or considers sexual behaviour a problem. May

hide some activities.
3 Marked concern. Considers sexual behaviour a serious problem.

Hides/lies about the activity.
12. Is your sexual behaviour a concern for your family or friends? Do they think it is
a problem?
2 Others express moderate concern and/or consider sexual activity a

problem (e.g. excessive sexual demands).
3 Others express marked concern. Consider sexual activity a serious

problem.
Intensity of sexually related activity in past month

(* A non-paraphilic (normative) /Paraphilic (non-normative) including prostitution and
promiscuity (needs to take into account individual circumstances).
1 Infrequent normative activity or symptoms from category A. No
Category B activities. Minimal risk.
2 More frequent normative activity or symptoms from Category A.

Moderate risks (social, financial or to health).
3 Very frequent normative activity or symptoms from category A.
High risk.
4 Symptoms from Category B.
9 N/A [No sexual behaviour in past month]
169
Impact of sexually related activity in the past month
1 No or minimal impact on other activities. No worry or concern
expressed by self or others..
2 Moderate social/financial impact. Some concern expressed by self

and/or others. Not fully open about activities. Some effect on
relationship.
3 Significant social/financial impact. Deception relating to sexual

activities. Marked concern expressed by self and/or others.
Significant effect on relationships and reciprocal affection.
9 N/A [No sexual behaviour in past month]
Sexual Intensity x Impact Score _______
[NB Score 0, if no sexual behaviour]

true problem.
scale of problem.
Category A
include compulsive masturbation, protracted promiscuity, dependence on

pornography, phone sex dependence, dependence on sexual accessories such as
drugs and severe sexual desire incompatibility
Category B
exhibitionism, paedophilia, voyeurism, fetishism, transvestic-fetishism, sexual

sadism, sexual masochism, and frotteurism.
170
14 Compulsive Shopping
Screening questions
Over the past month have there been any times when you have brought too much of
the same thing or things you didnt need or use? This includes shopping or
browsing in retail stores, on the internet, garage sales antiquing or other shopping
activities?
0 No (circle)
1 Yes
[NB Score 0 even if abnormal shopping activity previously but not in the past
month]

0 No (circle)
0 No (circle)
171
Intensity of Shopping
1. How often did you engage in these behaviours in an average month? (e.g. over
the past 6 months). What is the least number of times you would go shopping?
What would be the most? [NB: Include all forms of Shopping behaviour]
Min Max
Once a month 2 2
Once a day 6 6
2. How often have you shopped in the past month? (rate 1-8) ______
3. How long do you spend shopping on each session in the past month? What is
the shortest? What is the longest?
Min No Max No
5-10 minutes 2 2
10-20 minutes 3 3
20-30 minutes 4 4
30-60 minutes 5 5
1-2 hours 6 6
2-4 hours 7 7
172
4. In the past month, what is the typical cost involved in these activities? What is
the smallest amount spent? What is the largest amount spent?
Min Max
10p 1 1
10p-19p 2 2
20p-49p 3 3
50p-99p 4 4
1-4.99 5 5
5-9.99 6 6
10-20 7 7
>20 8 8
5. In the past month, how many items would you buy in a single shopping session?
Min size Max size
1 1 1
2-3 2 2
4-5 3 3
5-10 4 4
11-15 5 5
16-25 6 6
26-50 7 7
>50 8 8
6. What is the largest single amount you have spent on an item in the past month
_________
173
Impact of Shopping
7. When you have spent money on shopping in the past month, has it affected you
ability to do other things that you would like to do, or to pay for essential items?
Have you had to cut back your spending on treats? Have you had problems
paying for bills or having enough money for food or other essentials?
0 No impact
1 Slight impact on other discretionary activities
2 Moderate impact on discretionary activities and/or some impact on

non-discretionary expenditure.
3 Marked impact on other discretionary activities and/or definite impact

on non-discretionary expenditure
9 NA [Has not lost money]
8. In the past month have you borrowed money from a family member or friend in
order to go shopping? How often? Do they know what the money is for? Have
you ever taken money from them without telling, intending to replace it
afterwards?
0 Has not borrowed/taken money
1 Has borrowed occasionally (1-2 times)
2 Borrows money regularly (>2 times in past month) with their

knowledge.
3 Has taken money from another person without asking permission,

and/or borrows with deception
9. Are you concerned about your shopping? Do you think it is problem? Are you
always open about how much you have spent?

a problem. No debt.
2 Moderate worry and/or considers Shopping a problem. May be some

debt. May hide some losses.
3 Marked concern. Considers Shopping a serious problem. Significant

debt. Hides/lies about losses.
174
10. Is your shopping a concern for your family or friends? Do they think it is a
problem?
2 Others express moderate concern and/or consider Shopping a

problem
3 Others express marked concern. Consider Shopping a serious

problem.
Shopping Intensity in past month
(* High/Low cost value needs to take into account individual circumstances)

1 Infrequent low cost* shopping. No High cost* shopping. Minimal loss
risk.
2 More frequent low cost shopping, and/or occasional high cost

shopping. Moderate loss risk.
3 Very frequent low cost shopping and/or frequent high cost shopping.
High loss risk.
4 Very frequent high cost shopping. Very high risk of spending a

significant amount.
9 N/A [No Shopping behaviour in past month]
Shopping Impact in past month

1 No or minimal impact on other activities, or non-discretionary
expenditure. No worry or concern expressed by self or others.
Shopping within financial means. No debt. No borrowing.
2 Moderate social/financial impact on other areas of expenditure.

Some/occasional debt. Has borrowed to fund Shopping. Some
concern expressed by self and/or others. Not fully open about loses.
3 Significant social/financial impact. Significant debt problem. Has

stolen or used deception to fund Shopping. Hides losses. Marked
concern expressed by self and/or others.
9 N/A [No Shopping behaviour in past month]
175
Shopping Intensity x Impact Score _______
[NB Score 0, if no Shopping behaviour]

true problem.
scale of problem.
176
Appendix 15: Couple Satisfaction Inex
Extremely Fairly A Little Very Extremely Perfect
Unhappy Unhappy Unhappy Happy Happy Happy
Q1. Please indicate the degree of
happiness, all things considered, of
your relationship.
Q 2- 4: Most people have disagreements in their relationships. Please indicate below the approximate extent of
agreement or disagreement between you and your partner for each item on the following list.
Always Almost Occasionally Frequently Almost Always

Agree Always Disagree Disagree Always Disagree
Agree Disagree
2. Amount of time spent together
3. Making major decisions
4. Demonstrations of affection
All the Most of More often Occasionally Rarely Never

time the time than not
5. In general, how often do you
think that things between you and
your partner are going well?
6. How often do you wish you
hadnt gotten into this relationship?
Not at A little Somewhat Mostly Almost Completely
177
all True True True True Completely True
True
7. I still feel a strong connection
with my partner
8. If I had my life to live over, I

would marry (or live with/date) the
same person
9. Our relationship is strong
10. I sometimes wonder if there is

someone else out there for me
11. My relationship with my partner

makes me happy
12. I have a warm and comfortable

relationship with my partner
13. I cant imagine ending my

relationship with my partner
178
Almost
Not at A little Somewhat Mostly Completely Completely
all True True True True True True
14. I feel that I can confide in my
partner about virtually anything
15. I have had second thoughts
about this relationship recently
16. For me, my partner is the
perfect romantic partner
17. I really feel like part of a team
with my partner
18. I cannot imagine another
person making me as happy as my
partner does
Not at Almost
all A little Somewhat Mostly Completely Completely
19. How rewarding is your
relationship with your partner?
20. How well does your partner
meet your needs?
21. To what extent has your
relationship met your original
expectations?
22. In general, how satisfied are
you with your relationship?
179
23. How good is your Worse than Better than
relationship compared to all others all others
most? (Extremely bad) (Extremely good)
(0) (1) (2) (3) (4) (5)
Less than Once or Once or

Never once a twice a twice a
month month week Once a day More often
24. Do you enjoy your partners
company
25. How often do you and your
partner have fun together?
26. INTERESTING (0) (1) (2) (3) (4) (5) BORING

For each of the following items,
select the answer that best 27. GOOD (0) (1) (2) (3) (4) (5) BAD
describes how you feel about your
relationship. 28. FULL (0) (1) (2) (3) (4) (5) EMPTY
Base your responses on your first 29. LONELY (0) (1) (2) (3) (4) (5) FRIENDLY
impressions and immediate feelings
about the item. 30. STURDY (0) (1) (2) (3) (4) (5) FRAGILE
31. DISCOURAGING (0) (1) (2) (3) (4) (5) HOPEFUL
32. ENJOYABLE (0) (1) (2) (3) (4) (5) MISERABLE
180
Appendix 16: The Montreal Cognitive Assessment for Parkinsons Disease
(MoCA)
181
Appendix 17: Caregiver Distress Scale
Instructions:
Specific aspects of family life are affected by the demands of caregiving.
With respect to your current situation as caregiver for ______________, please

indicate whether YOU personally disagree or agree with the following statements
using the five-point scale below.
0 1 2 3 4
Strongly Disagree Neutral Agree Strongly

disagree agree
_____ 1. I take part in organised activities less
_____ 2. I visit my family/friends less
_____ 3. I take part in other social activities less
_____ 4. I feel frustrated with caring for ______
_____ 5. My relationship with ______ depresses me
_____ 6. I feel pressured between giving to ______ and others in the family
_____ 7. I feel that my own health has suffered because of ______
_____ 8. My relationship with ______ is strained
_____ 9. Caring for ______ has made me nervous
_____ 10. I feel ______ can only depend on me
_____ 11. I feel resentful towards ______
182
_____ 12. I feel helpless in caring for ______
_____ 13. My relationship with ______ no longer gives me pleasure
_____ 14. ______ tries to manipulate me
_____ 15. I feel overwhelmed by caring for ______
_____ 16. ______ makes more requests than necessary
_____ 17. I feel that my personal life has suffered because of ______
183
CDS [For researcher use]
Score
Relationship distress Sum of items 5, 8, 11, 13
Emotional burden Sum of items 4, 9, 12, 15
Care-receiver demands Sum of items 6, 14, 16
Social impact Sum of items 1, 2, 3
Personal cost Sum of items 7, 10, 17
184
Appendix 18: Data cleaning and transformation of variables
To enable testing of assumptions made by parametric statistical analyses all

variables used in the analyses were checked for outliers, distribution and
homogeneity of variance. No outliers were identified. Histograms were used to view
each variable, with little skew identified in any variables. The extent to which
variables were skewed is outlined in Table 4.1. This exploration demonstrated that
carer PADLS was skewed (Field, 2009) with a z-score of 2.79 which is above the
cut-off of 2.58. Patient PADLS z-score was above the conservative cut off of 1.96.
Table 4.1. Patient and carer variable distribution

Patient Variable Statistic Std Error z-score*
Education (years) -.174 .421 -0.41389
Disability (PADLS) Patient .890 .421 2.115623

self-rated
Disability (PADLS) Patient, 1.174 .421 2.791505

carer-rated
CNPS intensity (NPI-E total 6.540 4.210 1.553444

intensity score) Patient self-
rated
CNPS-related distress -.143 1.014 -0.14125

intensity (NPI-E total
distress score) Patient self-
rated
HADS distress (HADS total) .284 .421 0.676381
EQ5D .498 .421 1.184752
Relationship satisfaction -.828 .434 -1.90968

(CSI total score)
185
Carer Variable Statistic Std Error z-score*
Education .440 .421 1.04531
CNPS intensity (NPI-E total .142 .427 0.332784

intensity score) Patient,
carer-rated
CNPS-related distress -1.540 1.014 -1.51858

intensity (NPI-E total
distress score) Patient,
carer-rated
HADS distress (HADS total) .599 .421 1.423822
Caregiving-related distress .250 .421 0.594969

(CDS)
EQ5D .652 .421 1.55101
Relationship satisfaction -.592 .421 -1.40889

(CSI total score)
* >1.96 (conservative) or >2.58 (skewed) (Field, 2009)
Transformation of Variables
Variables underwent log and square-root transformations. Where variables
appeared negatively skewed (e.g. carer relationship satisfaction), they were
reversed in preparation for the transformation (Field, 2009).
For each set of variables (raw, log-transformed, square-root transformation)

preliminary correlations were performed to test Hypothesis 2 (Participants
perceptions of CNPS intensity will be associated with worse relationship satisfaction
and greater reports of distress). Results from each set of correlations were
compared. Minimal differences were identified between sets, informing the decision
to use the raw data.
186
The Care Plan Approach at
Snowsfields Adolescent Unit:
The Experiences and Views of

Young People
Dr Anna Janssen
Supervisor: Dr Rachel Zwi
187
Acknowledgements
I wish to thank the team and young people at Snowsfields Adolescent Unit (SAU) for
their time and valued contribution to the design and completion of this study.
In particular, I would like to thank two anonymous young people who provided useful
feedback on the initial version of the questionnaire and Rose Spencer (support
worker at the time) for assisting with data collection.
I enjoyed my time at SAU very much. It was my first placement on the course and a
memorable one. I met some excellent health professionals who welcomed,
supported and inspired me and helped me to perform to the best of my ability and
develop as a therapist.
Special thanks to my supervisor Dr Rachel Zwi for her motivation, expertise and
support as I designed and completed this project. I value her feedback on previous
versions of this report.
188
Table of Contents
Acknowledgements 189
Table of Contents 190
Abstract 192
1. Introduction 1.1 Context 193
1.2 Literature Review 194
Overview 194
The in-patient context: National Specialist

194
Services
The Care Plan Approach (CPA): Purpose,
194
process, attendance
196
1.3 This study
Aims 196
Objectives 197
Benefits 197
2. Method
2.1 Participants 198
2.2 Materials 198
2.3 Ethical Issues 198
2.4 Procedure 199
3. Results 201
4. Discussion 4.1 Summary of findings 214
Understanding the purpose and process of the CPA 214
Participation in decision making 214
Attending the CPA 214
Effectiveness of the CPA 215
Satisfaction with the CPA 215
189
Demographic variables among participants 216
4.2 Limitations and considerations 216
4.3 Implications and recommendations 217
Length of time since admission 217
How to improve the CPA 218
People present at the CPA 218
Preparing young people for their CPA 218
4.4 Conclusions 219
5. References
220
6. Appendices
Appendix A: Information Sheet for Young People 221
Appendix B: Information Sheet for Staff 2222
Appendix C: Post-CPA Survey for Young People Who

223
Did Attend
Appendix D: Post-CPA Survey for Young People Who
227
Did Not Attend
Appendix E: Content Analysis 231
190
ABSTRACT
A Care Plan Approach (CPA) is way to ensure integrated planning and care across
agencies (e.g., school, social services, health care) for people who have mental
health difficulties. CPA meetings are held to review care and plan for the future. The
project aims to understand the views held by young people at Snowsfield
Adolescent Unit (SAU) about their CPA meetings. It sought to investigate how useful
they think the CPA is and why, how included they feel, what is helpful about the
CPA and what could be improved. Unless admission is very short, every young
person in Snowsfields Adolescent Unit (SAU) has a CPA meeting before they are
discharged. Young people have the choice to attend or not. Between April and
October 2011, young people at SAU who had a CPA were invited to complete a
survey to report their views. Thirteen out of 30 young people responded (11
attended their CPA, 2 did not). Findings showed that most young people understand
and are in at least some agreement with their care plans and feel listened to and
invited to be part of the CPA. Most young people understand their need for care and
the purpose and process of the CPA. Data indicate that the SAU CPA process
meets the aims outlined in the SLaM policy for CPAs for the majority of young
people. This project highlights ways in which the CPA process at SAU is already
effective and beneficial for young people and identifies ways that staff can enhance
the support they offer young people in preparation for their CPA.
191
1. INTRODUCTION
The project detailed in this report took place in Snowsfields Adolescent Unit (SAU),
a tier 4 national specialist mental health in-patient unit for young people with mental
health difficulties within the South London and Maudsley (SLaM) NHS Foundation
Trust. The aim of this study is to explore young peoples experiences of their Care
Plan Approach meetings (CPAs). This will help to inform improvements and optimise
the benefits of CPAs for young and those responsible for their care.
1.1 Context
SAU has 11 beds and provides a service for three day patients experiencing mental
health difficulties. Patients range from 13 to 18 years of age. Most young people
would come to the ward on an informal basis, but in a small minority of cases they
would be admitted under sections of the Mental Health Act.The mean length of stay
is 40 days.
SAU offers a comprehensive range of care from its multidisciplinary team. In

addition to psychiatric and nursing care, young people are offered education based
on the national curriculum, art psychotherapy (individual and group), clinical
psychology (individual and group), family work, drama therapy, occupational therapy
and support from social workers and advocates.
Mental health needs of the young people on the ward are diverse and complex.
Examples of primary diagnoses for young people who have stayed at SAU since
January 2011 include eating disorder, psychosis, obsessive compulsive disorder
(OCD), autistic spectrum disorder (ASD), emerging emotionally unstable personality
disorder, ADHD, adjustment disorder, mood disorder including a mild or severe
depressive episode and bipolar affective disorder and post traumatic stress disorder
(PTSD). Comorbidities are common. The care required can be highly intensive and
multi-faceted given the often complex nature of many of the young peoples
presentations and histories. For example, some young people have a learning
disability, a history of abuse or there may be concerns about risk of harm to self or
others.
1.2 Literature Review

Overview
This literature review provides a background for the project by describing the context
192
of in-patient care in the UK for young people, the purpose and process of the Care
Plan Approach meeting (CPA), the context in which the CPA takes place and issues
to consider.
The In-Patient context National specialist services

Tier 4 child and adolescent mental health services (CAMHS) are for children and
young people with the most serious problems. Services at this level may be
provided in hospital, as is offered by SAU.
The Care Plan Approach (CPA): Purpose, process, attendance

The CPA Purpose: CPA is the care management process for those in contact
with specialist mental health and social care services. A CPA is for anyone who
needs to see several people or organisations for their care or treatment (eg school,
social services, health care). CPA is a way to ensure integrated planning and care
for the person across these agencies. For anyone who is on the CPA, a CPA
meeting is held to review care and plan for the future following discharge.
The CPA Policy: SLaM published an information leaflet for service users and
carers entitled Working Together: The Care Programme Approach (February, 2010).
It summarises key points in the SLaM CPA Policy (April, 2000) in a way that is
relevant and accessible to these service users and carers. It explains that CPA
meetings are held to check how the care plan is working and that it is helpful for the
service user. The aims underpinning the CPA include treating the service user with
dignity and respect, offering information to help the person make informed choices
and to help the person have as much control as possible in making choices about
their care and support. A care plan must follow the Recovery Model which prioritises
hope, quality of life, and involving the service user in a meaningful way. The
publication advises service users and carers that a good care plan is one which the
service user can make sense of, finds helpful and takes his or her thoughts and
feelings seriously.
The CPA Attendance: At SAU, all members of the young persons care team and
agencies involved in their future care are invited, as well as parents or carers and
the young people themselves. Although young people are strongly encouraged to
attend their CPA in order to have a voice, some opt not to attend.
193
The CPA Process: CPAs are planned in advance. The CPA process varies
depending on the context and established practice among the team in that service,
the individuals who attend, including whether or not the patient attends, and the
stage of care. For example, unless admission is very brief, for example only a few
days, every young person at SAU has a CPA before they are discharged. Some
young people might have more than one CPA during their admission if they have a
long admission. The content of discussion focuses on the patients recent
experiences, current symptoms and needs, and planning future care in accordance
with these. The CPA is structured around the CPA form, ensuring all relevant needs
are identified, an assessment of risk and relapse signs is completed and a future
plan identified.
At a CPA held during or towards the end of the young persons admission at SAU,
those responsible for the areas of care offered to the young person, for example,
psychology, psychiatry, education, and social services, give a brief summary of their
observations, interventions, outcomes and recommendations for the future.
On the ward, it was noted that some young people found it difficult to express their
views directly in the meeting, and some young people opt not to attend. Therefore a
questionnaire was introduced by staff at SAU in late 2010 to seek young peoples
views of their care (see Appendix A). It was intended for young people to complete
this questionnaire directly before their CPA with the support of staff. The aim was to
provide young people with the opportunity to express their views of the care they
had received and have the young people responses reported in the CPA and taken
into account in the planning of their care.
194
1.3 This Study
Aims
The project aims to understand the views of young people at SAU about their CPAs.
It asks young peoples views about their CPAs at SAU in terms of strengths and
weaknesses, and the outcomes for young people.
Questions the audit set out to answer include:
1. How well do young people feel they understand the CPA purpose and process?
2. How effective are CPAs at SAU in terms of:
a) helping the young person understand and participate in decisions about their care
needs:
how well the young person feels able to understand their situation (i.e., reason for
being in hospital), care plan and decisions that are made about their care (i.e., what
will happen next)
helping the young person feel included in the process of decision-making about their
care (i.e., feeling able and welcome to express their opinion, ask questions, and feel
listened to) for those who chose to attend the CPA and those who did not
feeling able to understand what others attending the CPA (i.e., MDT members, care
coordinators, carers) are saying
feeling supported during the CPA (if attended)
helping to ensure that the young person understands the outcomes of the CPA
b) facilitating collaborative working between the young person and their

multidisciplinary team:
How much does the young person agree with the care plan that is developed in
collaboration with them
3. How many young people choose to attend their CPA and, if not, what were the
barriers to this?
195
4. What could be done differently to make CPAs as effective and inclusive for young
people at Snowsfields as possible?
Objectives
To measure the extent to which CPA meetings meet the aims outlined in the SLAM
CPA Policy from the perspective of young people, including how involved they
currently feel and what the barriers and enablers to involvement are.
To measure what the current strengths and weaknesses of the CPA process are
from the perspective of young people.
To identify current areas of good practice in conducting CPAs with young people,
and identify any potential areas of improvement to make CPAs as useful and
inclusive for young people at Snowsfields as possible.
Benefits
The aim was to use the feedback we receive from young people in order to learn
which aspects of the CPA process young people appreciate and find useful, and
which aspects could be improved and in what way. The SAU team expressed their
support for the project. Some members provided information about the current CPA
process and the information and support currently provided to young people.
It was expected that there will be a range of responses which reflect, in part, the age
of the young people, their experience of their health difficulties and the support
offered and basis upon which they are at SAU. In addition, responses were
expected to vary depending on whether the young person attended the CPA or not,
their understanding of their own health needs, their desire for change and their
capacity and confidence to communicate in a group setting.
196
2. METHODS
2.1 Participants
The participants for this study were young people on the SAU. A young person was
eligible to complete the survey once their CPA had taken place.
2.2 Materials
An Information Sheet for Young People (Appendix A) was developed that introduced
the project to the young person in simple clear language, outlining its purpose,
issues around confidentiality and anonymity and what the young person was
required to do. An accompanying Information Sheet for Staff (Appendix B) was
developed to help ensure that the process of supporting a young person to complete
the survey was ethical, consistent and efficient.
The survey was developed in consultation with the SAU team to collect young
peoples views of their CPA. Given that some young people do not attend their CPA,
two versions of the survey were developed. One was for young people who
attended their CPA (Appendix C) and the other was for young people who did not
attend the CPA (Appendix D).
The Information Sheet for Young People and surveys were piloted with two young
people both of whom managed to complete with the support of AJ. One of these
young people had a mild learning disability, and one was functioning well
academically. This was done in order to see whether the survey would be
accessible to a wide range of abilities. As a result, the survey content remained the
same and data from these two pilot surveys were kept as part of the results
presented in this report.
2.3 Ethical issues

Following advice from the SLaM Directorate Governance and Audit Committee it
was felt that SLaM ethical approval for this study was not required as it was
intended as a service audit only. Approval for this study was granted by the
Directorate Clinical Governance/Audit Committee on 12th April 2011.
All young people were given an information sheet to read. In this, the survey was
described as part of the service and an opportunity for the young people to share
their perspectives of their CPA and what can be improved. They were assured that
197
refusal to complete the survey would not alter their care in any way and that all
responses would be kept anonymous in the final report. Upon completion of the
survey they were offered the opportunity to discuss any concerns they had about
their CPA with a member of staff. Responses were checked by the staff member
supporting the young person in completing the survey. This was to ensure that, if
warranted, due attention was paid to information that the young person reported in
their survey (e.g., if a young person reported that they did not understand their care
plan an appropriate staff member would meet with the young person to address
this).
No identifying information was collected in the survey. Numbers were assigned to

young people. For each young person their anonymised data was entered into a
spreadsheet and the questionnaire was then filed in their clinical notes. Electronic
documents were stored in a personal folder on the SLaM network accessible only to
the project lead (AJ).
2.4 Procedure
Following their CPA, YPs were approached by a staff member at SAU. In
accordance with the Information Sheet for Staff, the staff member provided the
young person with the Information Sheet for Young People and asked the young
person complete the survey. Young people were offered support to complete it at a
time and place that was suitable for them.
The project lead facilitated the data collection process by informing SAU staff
members of data collection procedures and coordinating with young person
advocates, nurses and support workers on the ward to ensure that appropriate
support was provided for young people in completing the survey.
Research shows that people are more likely to respond when face-to-face methods
of seeking feedback are used, whereas postal surveys and constant reminding in
absence are related to higher non-response rates (Sheikh & Mattingley, 1981). It
was recognised that a member of staff needed to be present to support and
encourage the young person when they are asked to provide feedback. During the
course of the project, data was collected about each CPA that took place on the
ward, including those for which the young person was not available or willing to
complete the project survey. This background information allowed us to describe the
CPAs and provide a context for the survey data collected. The data collected
198
included the young persons age, gender, diagnosis or reason for admission,
number of days since admission, whether the CPA was attended by the young
person, reason for not attending (if known), whether the young person completed
the survey and reasons for non-completion (if known).
Once completed, survey responses were read by AJ and her supervisor and
discussed in terms of how they contributed to answering the projects primary
questions as well as any additional insights they provided about the young peoples
perspectives of CPAs.
Content analysis was used to identify and extract the patterns and key messages in
the responses given to open-ended questions. Content analysis is a method of
analysis that facilitates the study of human communication and is widely used in the
social sciences. It has been described by Stemler (2001) as a systematic and
replicable technique for compressing many words of text into fewer content
categories based on explicit rules of coding.
Based on the initial review of the data an emergent coding approach was used to
establish categories upon which our coding was based. This involved identifying
words and phrases that emerged from the data which, given the project questions
and aims, appeared to be of potential interest and relevance. After coding the data
we counted the number of instances within each category (Appendix E). We
identified any patterns in the frequency of data in each category in relation to
characteristics of YPs as individuals (demographic details) and their situation (length
of admission, attendance at CPA, diagnosis) of relevance to the project. The data
were considered in terms of the potential implications for their audience and the
service.
Reliability of categorisation was assessed by having an independent rater

categorise responses to two randomly selected surveys. We analysed the extent to
which the each raters coding of the same data differed, using Cohens kappa of 0.8
(i.e., 95%) as an estimate of acceptable agreement.
199
3. RESULTS
Thirteen young people completed the surveys between April 2011 and October
2011. A demographic summary of the young people who completed these surveys
is presented in Table 1.
During the period in which the 13 surveys were completed, a total of 30 CPA
meetings took place at SAU. A demographic summary of the 29 young people for
whom these CPAs were held is presented in Table 1.
Table 1. Demographic summary of young people who had CPAs at SAU between
April and October 2011
Responders Non-Responders Total
Gender
Female 10 7 17
Male 3 9 12
Age
Mean 15.75 15.6 15.7
Range 13-18 13-18 13-18
Primary diagnosis
relating to
admission
Adjustment disorder 1 1 2
Developmental 1 1 2
disorder
Depression / bipolar 3 2 5
disorder
Eating Disorder 3 2 5
Personality disorder 3 2 5
OCD 1 2 3
PTSD 0 1 1
Psychosis 0 4 4
Delirium 0 1 1
Unknown 1 0 1
Attended CPA
Yes 11 6 17
No 2 10 12
Weeks since
admission
<4 4 2 6
<8 3 5 8
<12 2 4 6
<16 2 1 3
16+ 2 4 6
200
Reasons given for why a young person did not complete a survey include refusal to
complete it, disengaging despite agreeing to complete it and being discharged in
absence after the CPA. Of those who did not complete the survey, there was
approximately one-third in each category. Most people who did not attend their CPA
had chosen not to as they did not want to. About a third were discharged in
absence.
Intergroup comparisons between demographic details shows that a higher

proportion of males than females chose not to complete the survey. In comparison
to responders, non-responders were more likely to be male, not to have attended
their CPA and to have had longer admissions than responders. Four non-
responders had psychosis whereas this did not feature in non-responders.
Content Analysis
The surveys completed reflect a range of perspectives from the 13 young people.
Themes emerged in some areas of enquiry about the CPAs (Appendix E). Some of
the themes demonstrated a relationship to demographic or clinical characteristics of
the young people.
It was noted that all young people completed the questions with fixed response
options and a subset of young people also completed the open-ended questions,
providing answers of varying lengths. No responses were given which warranted
urgent attention from ward staff. No young person asked to discuss their CPA
further with a member of staff upon completion of the survey.
For each question a summary of the responses is presented. Some questions were
fixed-response whereby the young person chose the answer from a range of
options. Other questions were open-ended inviting the young person to use their
own words. Categories were developed for responses that were in the young
persons own words. This includes open-ended questions and any fixed response
questions where a young person has chosen to make additional comments. Young
peoples own words are italicised in this section. Coding reliability was 100%.
201
Question 1. How did you hear about your CPA?
Most young people heard about their CPA from a staff member or their mother. Two
gave detailed information about their experience of hearing about the CPA,
indicating that they had received additional relevant information from the SAU team
(leaflet about CPAs; ward round feedback).
Question 2. Do you understand the reasons for your CPA?

Most young people understand the purpose of the CPA at least to some extent. Of
the five who were less certain, four had been admitted less for no more than four
weeks before their CPA took place.
Q2: Do you understand the reasons for your CPA?

8
7
Attended
6
Did not attend
5
#YPs
No Answer Not at all A Bit A Lot

202
Question 3. Did you understand process of CPA?
Over 80% of young people understand the process of the CPA at least to some
extent. Of those that understood it a lot, one did not attend the current CPA but
described previous experiences of attending CPAs, the other two were generally
strong in their opinions about the CPA across the survey (one positive, one
negative). The young person who did not understand the process at all generally
described her experience of the CPA as negative in the survey.
Q3: Did you understand the process of a CPA?

10
9
Attended
8
7 Did not attend
6
# YPs
No Answer Not at all A Bit a lot
Question 4. What did you like about your CPA?

Almost half reported that there was nothing they liked about the CPA. Categories
emerging from other responses demonstrated a focus on help, needs and desires,
and discharge as key factors in a young persons experience of the CPA. The
language used reflected some black and white thinking. Of the young people who
didnt attend their CPAs, one reported that this was because she didnt like her first
experience.
203
Q4: What did you like about your CPA?
6
5
# YPs (attended)
No Answer / Don't KnowNothing Being Discharged Helpful
Question 4a: How helpful was it (would it have been) to attend the CPA?
Approximately three-quarters of young people believe their attendance at the CPA
was or would have been at least somewhat helpful, whereas one quarter reported it
would not have been helpful. Of those, all had been admitted for less than eight
weeks before the CPA was held.
Q4a: How helpful was it (would it have been) to attend the CPA?
8
7 Attended
6
Did not
attend
5
# YPs
Not at all A Bit A Lot
204
Question 4b: Were you asked to give your views?
Responses indicate that all but one of the young people felt that their views were
invited. One third of these young people indicated that their views were invited a
lot. Two thirds reported that their views were invited a bit.
Q4b: Were you asked to give your views?

9
8
Attended
7 Did not
attend
6
5
# YPs
0
not at all a bit a lot
Question 4c: Did you feel listened to?

Question 4d: Did you feel supported?
Responses questions 4c and 4d indicate that the majority of young people felt at
least somewhat listened to and supported in the CPA process, including the two
young people who did not attend. Of the three young people who did not feel
supported or listened to all were female and two had a diagnosis of emerging
emotionally unstable personality disorder.
205
Q4c: Did you feel listened to?
6 Attended
Did not attend
5
4
# YPs
0
Q4d: Did you feel supported?
6 Attended
5
Did not
attend
4
# YPs
206
Question 4e: Were you able to understand what people were saying? (attended
only)
Every young person who attended their CPA was able to understand, to some
extent at least, what the other attendees were saying. Those who had been at SAU
for less than eight weeks at the time of their CPA had a less thorough understanding
than others.
Q4e: Were you able to understand what people were saying?

8
7
>8 weeks since
admission
6 <8 weeks since

admission
5
# YPs
Question 4f: Were you able to understand what will happen next with your care?
Categories emerging from question 4f reflected a clear ability among young people
to understand what will happen next with their care and, within this, some negativity
in terms of perceptions of the CPA process and its implications on their future care.
Q4f: Were you able to understand what will happen next with your care?
10
8
Attended
7 Did not attend
6
# YPs

207
Question 5. Was there anything you didn't like about attending the CPA (attended
only)?
Categories emerging from question 5 reflected the key factors in a young persons
reports of their experience of the CPA as being: black and white thinking, negativity,
anxiety-related emotions and reactions to the experience, and a focus on having to
speak and the presence of other people.
Q5: Was there anything you didnt like about your CPA?
3
# YPs attended
0
don't know / no no things are said nervous / all the everything
answer but not done people / too
much attention
on me
Question 5a: How many people were there? (attended only)

Approximately two thirds of young people who attended their CPA felt there were
about the right number of people at the meeting. One-third felt there were far too
many people. No one said there were too few.
Q5a: How many people were there?

8
4
#YPs Attended
too few about right far too many

208
Question 5b: did you find it hard to say what you think? (attended only)
Approximately two-thirds of patients had at least some difficulty expressing their
point of view during the CPA meeting. Those who reported that they had a bit or no
difficulty were also those who had been admitted for at least 8 weeks before their
CPA meeting took place. In contrast, of the two young people who did not attend,
one young person reported that she struggled to remember and express what she
wanted to say when she attended her previous experience. She related this difficulty
to finding the people and formality of the process intimidating.
Q5b: Did you find it hard to say what you think?

4.5
4 <8 weeks since

admission
3.5 >8 weeks since
admission
3
2.5
# YPs
1.5
0.5
0
No A Bit Yes
Question 6. How much did your CPA help you understand why you are in hospital?
Most young people already understood why they are in hospital. For those who did
not already have this understanding, CPAs contributed to this understanding to at
least some extent. The only young person to report that the CPA was not at all
helpful in improving this understanding expressed negative perceptions of the CPA
across most questions asked in the survey.
209
Q6: Did your CPA help you understand why you are in hospital?
9
7 <8 weeks since admission
6 >8 weeks since admission
5
# YPs
0
not at all a bit a lot I already
understand
Question 7: Did your CPA help you understand your care plan?
The CPA assists over half of young people in understanding their care plan. The
only young person who also said that they did not understand the process or
purpose of the CPA thought that her care plan had not been discussed at the CPA.
For others, the care plan was already understood prior to the CPA.
Q7:Did your CPA help you understand your care plan?

6
5 <8 weeks since

admission
>8 weeks since
4 admission
3
# YPs
0
understand
210
Question 8: How much do you agree with your care plan?
The majority of young people agree to some extent with their care plans.
Approximately one quarter agree a lot and one quarter were unsure or did not
agree. One YP who did not agree gave details which suggest a sense of
hopelessness. Such emotion emerged in other responses she gave in terms of the
process of CPAs and her apparent trust in and respect for those involved in her
care.
Q8: How much do you agree with your care plan?

8
7 Attended
Did not attend
5
# YPs
don't know not at all a bit a lot
Question 9: Is there anything we can do to make the CPA more helpful for you?
Approximately three-quarters of young people do not have any specific suggestions
of ways in which CPAs can be improved for the young person. Of these, four in five
say that there is nothing that can be done to improve the CPA. This includes most of
those who reported liking nothing about their CPA. A minority report uncertainty over
how improvements can be made. Three young people had specific comments
around improvements. These focussed on control in decision making, paying
attention to and including the young person, and a lack of familiarity and comfort
with the people present at the CPA.
211
Q9: Is there anything we can do to make the CPA more helpful for you?
9
7 Attended
6 Did not attend
5
# YPs
don't know no actions to follow give YPs a chance people who don't
words to speak know me making
decisions about me
212
4. DISCUSSION
This section includes a discussion of our findings, possible implications and

recommendations in relation to the study aims. The young people who chose to
complete the survey provided a rich array of insights into their experiences of CPA.
Overall, findings were encouraging. Most young people were invited to give their
views, felt listened to and able understand their situation, what was said at the
meeting and their care plan. Our findings suggest that the current CPA practice at
SAU is effective in facilitating a CPA experience that meets the principle aims of the
CPA process according to SLaM policy (April, 2000) which are detailed in the
literature review above.
4.1 Summary of findings

Understanding the purpose and process of the CPA
Eighty-five percent of young people understand the purpose and process of the CPA
to at least some extent. This is most likely due to current ward practice being for a
nurse to go through this with a young person before the CPA meeting. Just over two
thirds of young of people heard about their CPA from a staff member and almost
one quarter heard about it from their mother.
There was a positive trend between certainty about the purpose of a CPA with
length of admission, previous experience of CPAs and the tendency when
completing the survey to share more detailed views (positive and negative) of the
CPA experience.
Participation in decision making

Despite over 90% of young people reporting that they were invited to share their
views, over three quarters reported having some difficulty with expressing their
views at the CPA. This seemed less likely to be a problem for those who had been
at SAU longer which may reflect that young people are more familiar with staff and
find it easier to express their views over time. Over three-quarters felt listened to,
including those who were not present for their CPA.
Attending the CPA meeting

Almost three quarters of young people who attended their CPA felt that attending
was helpful. Every young person who attended their CPA understood at least some
213
of what the other attendees were saying. There was a trend for this understanding to
be greater among those who had had a longer admission.
Despite young people reporting that they feel listened to, responses suggest that
other aspects of attending the CPA meeting were barriers to their ability to
contribute meaningfully to the CPA. These included whether the meeting chair
allows everyone to have a chance to speak and the impact of having people with
whom the young person is unfamiliar or uncomfortable on his or her ability to
engage in discussions about sensitive personal issues. Of the young people who
didnt attend their CPAs, one reported that this was because she didnt like her first
experience. The number of people present and formality of the process can make
the CPA intimidating and were cited as reasons for why it has been difficult for a
young person to express their points of view and a reason for refusing to attend
subsequent CPAs.
Effectiveness of the CPA

Very encouragingly, over 60% of young people already understood why they are in
hospital and almost 40% understood their care plan and at the time of their CPA.
For those who did not have such understanding, CPAs contribute to this
understanding at least to some extent. All young people understand what will
happen next with their care. These discrepant answers may reflect that young
people are unsure of what a car plan is, but do know what will happen next. Despite
this, two young people expressed doubt over whether a CPA can be of any benefit
to their future care and wellbeing. Over three quarters of young people agree at
least to some extent with their care plans.
Satisfaction with the CPA

In reporting their dislikes about their experience of the CPA, young peoples styles of
expression reflected negativity and anxiety in response to the experience. They
commented on the act of speaking during the CPA and on the presence, familiarity
and behaviours of other people at the meeting.
Over half of young people did not report liking anything about the CPA. Within the
few reports given of what they liked reflected concepts of receiving help, the needs
and desires of the young person, and a significant emphasis on a plan of discharge
from hospital as the outcome. There was a tendency towards black and white
thinking depending on whether the aim of discharge was achieved or not.
214
Less than one quarter of responders to the survey identified anything that should be
changed about the CPA. A possible explanation is that they recognise the CPA as a
necessary part of their care and view the current process as acceptable and not in
need of significant adjustment.
Demographic variables among responders

Patterns were noted in some areas between a young persons demographic details,
whether or not they responded to the survey and, if so, the amount of detail provided
and the global negativity or positivity expressed about CPA meetings.
This project has too few young people to make any conclusions about how
diagnosis and other demographic variables may relate to views of specific areas of a
CPA. The emergence of any trends highlights the need for a dedicated and
individual-focussed approach in preparing young people for their CPAs and seeking
their feedback to optimise the opportunity they have to experience a CPA that meets
its aims and is helpful for them.
4.2 Limitations and Considerations

It is encouraging that some young people, when given the opportunity, are willing to
provide constructive feedback about their experiences. All young people who had a
CPA during the project timeframe had the choice of whether to complete the survey
or not unless they were discharged in their absence. Given the number of reasons
why a young person may have chosen not to complete it, and the ways in which
these might relate to their views about their CPA there are potential biases in our
data set.
We felt that ethically it was important to report to staff anything we learned from their
feedback that indicated needs in their care (e.g., not understanding the CPA
outcome) that required attention and could be rectified. Although young people were
assured that their answers would not adversely affect their care in any way, the data
is potentially biased as a result of the possibility that some young people declined to
participate due to concerns about anonymity. Young people who feel mistrustful of
taking part in a formal survey might respond better to a conversation with a familiar
professional who is involved in their care.
215
Most people who completed the survey understood the purpose and process of the
CPA, why they are in hospital and their plan. However, the level of understanding
among young people who did not complete the survey remains unclear. It is
possible that those young people who already understood their care plan were also
more likely to choose to complete the survey. Such young people were arguably
more engaged in thinking and talking about their care, thereby facilitating their
understanding, and more motivated to share their views of the CPA. Young people
who did not complete the survey may have understood their care plan but not
necessarily agreed with it. However, literature on the nature of non-responders to
survey-based research shows that people who have something to complain about or
report are more likely to respond to surveys than those who are satisfied (Sheikh &
Mattingly, 1981). The surveys may also have fielded relatively more negative views
given that any young people who felt relatively satisfied or neutral about their CPA
may not have felt the need to comment. Our data also support Sheikh and
Mattinglys (1981) findings that people with a history of psychosis are less likely to
respond.
A further bias is likely to exist as a result of surveys not being completed by those
who did not attend their CPA and were discharged in absence. Our data indicate
that understanding is related to length of admission. Non-responders had relatively
longer admissions than responders. A longer admission often reflects that the young
persons problems are more enduring or severe. In such cases, the young person is
also likely to find it harder to engage in the CPA meeting and CPA feedback
process.
4.3 Implications and Recommendations
Responses across the survey provide helpful indications of where and how
improvements could be made to the CPA process as well as what is currently in
place and effective.
Length of time since admission

Level of understanding of the purpose and process of a CPA purpose and a young
persons perceived ability to express themselves both showed a positive pattern in
relation to weeks since admission. This may serve as a reminder of the importance
of providing thorough information about CPAs to all young people in advance, and
216
staff being present to support a young person in expressing themselves, particularly
those who are less familiar with SAU and are having their first CPA.
How to improve the CPA

The few suggestions given for ways to improve the CPA focussed on control in
decision making, paying attention to and including the young person, and a feeling
that they did not know or have a supportive relationship with some meeting
attendees. These provide suggestions for how to improve practice in these areas.
Given that some young people are at SAU on section (e.g., where there are
concerns about risk or eating), it would be unrealistic to expect all young people to
agree with their CPA outcome or to describe the CPA helpful.
People present at the CPA

The number of people attending the CPA was viewed by most responders as
excessive. For a significant subset of young people, including those with long
admissions and previous experience of CPAs, there was a trend between whether
the young people thought there were too many people present and whether they felt
supported, listened to and included. The service considered reducing the amount of
staff sitting in on CPAs for training purposes. Despite this, it is acknowledged that
sometimes where many professionals are involved with a young persons care, a
CPA will have a large number of attendees. Perhaps the impact on the young
person could be minimised by explaining clearly in advance who will be attending
the CPA and their role in supporting them.
Preparing young people for their CPA

Staff must continue to facilitate young peoples understanding of the purpose and
process of the CPA and support their rights to be heard and contribute to decision-
making. In this, it is important to check their understanding of and concerns about
the CPA before the meeting. Our results suggest that this is particularly important for
anyone whose admission was relatively recent and with little or no experience of
CPA meetings. It is important that inclusion of each attendee is explained and can
be justified to the young person before their CPA.
217
4.4 Conclusions
This project has demonstrated that young people generally do understand their care
plans, are in at least some agreement with the plan and feel listened to and invited
to be part of the CPA. It is encouraging to see that most young people have a good
understanding of their need for care and the CPA purpose and process. According
to most young peoples reports, the SAU CPA process meets the aims outlined in
the SLaM policy for CPAs for the majority of young people. This project has been
valuable in identifying ways that staff can enhance the preparation and support they
offer young people as part of the CPA process. It also highlights important ways in
which the CPA process at SAU is already effective and beneficial for young people.
218
5. REFERENCES
Care Programme Approach Policy Towards Integrated CPA and Care

Management. (April, 2000). South London and Maudsley NHS Foundation Trust
Croydon, Lambeth, Lewisham and Southwark Social Services.
Sheikh, K. & Mattingley, S. (1981). Investigating non-reponse bias in mail surveys.

Journal of Epidemiology and Community Health, 35, 293 296.
Stemler, Steve (2001). An overview of content analysis. Practical Assessment,

Research & Evaluation, 7(17). Retrieved November 25, 2011 from
http://PAREonline.net/getvn.asp?v=7&n=17.
Working Together: The Care Programme Approach (February, 2010). South London
and Maudsley NHS Foundation Trust
219
Appendix A: Information Sheet for Young People
CPAs at Snowsfields
Young People Survey

Tell Us What You Think!
Information Sheet
Dear _______________,
You recently had a CPA here at Snowsfields.
We would be grateful if you could complete this questionnaire to tell us your

thoughts about your CPA.
Why?
It is important that we hear every young persons views about their CPA.
Was it helpful? Were there any problems? What would have made it easier or
helpful for you?
We aim to use what you and other young people at Snowsfields tell us to improve
the care we offer.
Who will help me if I need it?

A member of staff (your nurse or support worker) will be available to support you
while you answer the questions.
What if I tell you about things I didnt like?

We value your views. If you were not happy about something we want to know so
we can improve things in the future.
Who will see my answers?

Anna (the psychologist) will see every young persons answers and make a report
that summarises all young peoples answers. Your name will not be identified in the
report.
Your answers will be filed in your notes. If you tell us anything that we feel we could
help you with someone will meet with you to look at how we can help you in the
future.
Many thanks for helping us to the care we offer at Snowsfields as helpful as possible
for every young person.
Anna and the team at Snowsfields.
If you have any questions about this survey please contact Anna or Rachel:
Dr Anna Janssen Dr Rachel Zwi

Trainee Clinical Psychologist Clinical Psychologist
220
Appendix B: Information Sheet for Staff
CPAs at Snowsfields
Young People Survey

Helping YPs give their views!
Information Sheet for Staff
Dear Staff Member,
Many thanks for helping us to improve our understanding of YPs experiences of

their CPAs so we can make them as useful as possible for everyone.
Please help the YP complete the questionnaire as soon as possible after their CPA.
Please encourage the YP to be honest in their answers. If the YP is unhappy about

any aspect of their CPA we want to know. Please assure the YP that their care will
not be adversely affected in anyway.
Answers given will treated anonymously and used to write a report to help SAU
make the CPA process as beneficial for each YP a possible.
The only exception to anonymity is if it is in the YPs best interests for the
information to be shared. For instance, if the YP tells us anything that indicates they
would benefit from immediate assistance from a staff member (eg I dont understand
the outcome of my CPA) we may need to share that answer with a member of staff
who can discuss the issue and look at how we can help. YPs completed surveys
will be filed in their notes.
Thank you for your help in understanding YPs views and optimising the care we
offer at Snowsfields.
If you have any questions about this survey please contact Anna or Rachel:
Dr Anna Janssen Dr Rachel Zwi

Trainee Clinical Psychologist Clinical Psychologist
221
Appendix C: Post-CPA Survey for Young People Who Did attend
Your CPA Tell Us What You Think!
Staff at Snowsfields aim to plan and provide the care that you receive here.
It is important that you feel involved in deciding about your care.
It would be helpful if you could tell us what you think about your care. This will help
us to improve how we care for young people at Snowsfields.
There are no right/wrong answers. Its your views that are important.
Please feel welcome to be completely honest.
At Snowsfields, care for young people is planned at reviewed regularly at a meeting

called a Care Plan Approach (CPA). The meeting is attended by health care
professionals on the Snowsfields, YPs carers or parents, and sometimes YP.
You recently attended your CPA.
The following questions are about how you felt before your CPA took place:
1. How did you hear about your CPA?

________________________________________________________
________________________________________________________
________________________________________________________
2. How much did you understand about the reasons for having a CPA
3. How much did you understand about what happens in a CPA?
222
The following questions are about how you felt during your CPA
4. What did you like about the CPA?

________________________________________________________
________________________________________________________
________________________________________________________
4a) how helpful was it to attend?

4b) were you asked to give your views?

4c) did you feel listened to?

4d) did you feel supported?

4e) were you able to understand what other people were saying?
4f) were you able to understand what will happen next with your care?
223
5. Is there anything that you didnt like about attending the CPA meeting?
________________________________________________________
________________________________________________________
5a) How many people were in the room?
Not many About right Far too

people many
people
5b) did you find it hard to say what you think?

No A bit Yes
The following questions are about how you felt after your CPA
6. Did your CPA help you understand why you are in hospital?

understand
why I am in
hospital
7. Did your CPA help you to understand your care plan?

understand
my care plan
8. How much do you agree with your care plan?
224
9. Is there anything we can do to make the CPA more helpful for you?
________________________________________________________
________________________________________________________
________________________________________________________
10. Have you ever completed this pre-CPA questionnaire?

(see copy attached)
Y N
(please circle)
If NO: Please go to Q13.
If YES:
11. How helpful was this form in helping you to share your views about your
experiences and care
12. What were the good things for you about using the form?
________________________________________________________
________________________________________________________
13. Is there anything we could do to improve the questionnaire?
________________________________________________________
________________________________________________________
14. Would you like to discuss your views on CPAs further with a member of
staff?
IF YES please tell us your name
___________________________________________
If you tell us anything that we feel we could help you with Anna (the psychologist)
might need to speak with you to discuss your views and look at how we can help
you in the future.
225
Appendix D: Post-CPA Survey For Young People Who Did NOT attend
Your CPA Tell Us What You Think!
Staff at Snowsfields aim to plan and provide the care that you receive here.
It is important that you feel involved in deciding about your care.
It would be helpful if you could tell us what you think about your care. This will help
us to improve how we care for young people at Snowsfields.
There are no right/wrong answers. Its your views that are important.
Please feel welcome to be completely honest.
At Snowsfields, care for young people is planned at reviewed regularly at a meeting

called a Care Plan Approach (CPA). The meeting is attended by health care
professionals on the Snowsfields, YPs carers or parents, and sometimes YP.
You recently had a CPA.
The following questions are about before your CPA took place:
1. Had you heard of a CPA? Y N (please circle)
If YES
How did you hear about your CPA?
________________________________________________________
________________________________________________________
2. How much did you understand about the reasons for having a CPA?
3. How much did you understand about what happens in a CPA?

4. Do you think it would have been helpful to attend your CPA?

226
5. were you asked to give your views before the CPA?
Y N (please circle)
If NO: Go to Q6
If YES:
5a) did you feel listened to?

5b) did you feel supported?

6. What stopped you from going to your CPA?

________________________________________________________
________________________________________________________
________________________________________________________
7. Is there anything that worries you about attending the CPA meeting?
________________________________________________________
________________________________________________________
________________________________________________________
7a) It will be hard to say what I think
No A bit Yes
7b) I think noone will listen to me
No A bit Yes
227
7c) I am worried I wont be able to understand what other people are saying
No A bit Yes
7d) There will be too many people in the room
No A bit Yes
8. How can we make it easier for you to attend your CPA?
________________________________________________________
________________________________________________________
The following questions are about how you felt after your CPA
9. Did your CPA help you understand why you are in hospital?

understand
why I am in
hospital
10. Did your CPA help you to understand your care plan?

understand
my care plan
11. How much do you agree with your care plan?
228
12. Is there anything we can do to make the CPA more helpful for you?
________________________________________________________
________________________________________________________
________________________________________________________
Would you like to discuss your views on CPAs further with a member of staff?
IF YES please tell us your name
___________________________________________
If you tell us anything that we feel we could help you with Anna (the psychologist)
might need to speak with you to discuss your views and look at how we can help
you in the future.
229
Appendix E: Content Analysis
This appendix contains the data and categories emerging for each survey question.
Where answers were closed the categories have already been determined. Any
further information given by young person when answering such questions was
analysed for its content and categorised where applicable.
Included in the tables below are
Question number and wording

Raw data
Categories Emerging (where applicable)
Number of young people in each category
1. How did you hear about your CPA?
Raw data Categories Emerging Number of Young

People
someone told me Dont know 1
a doctor
Staff (x3) Someone 2
the staff talked to me about it and gave
me a handout which explains it all Mum 3
mum
primary nurse told her Staff 7
a letter in post sent to mum, and
feedback from ward round 2 months Specific details of 2
prior information provided
someone sent a letter
nurse
mum
don't know
2. Do you understand the reasons for your CPA?

People
A lot n/a 7
A bit 5
Not at all 0
No answer given 1
3. Do you understand the process of CPA?

People
A lot n/a 4
A bit 8
230
Not at all 1
4. What did you like about CPA?

People
it was helpful Help / Helpful 2
not a lot
nothing as I didn't get to discuss Being discharged 2
anything I wanted to
being discharged No answer given 3
nothing (x3)
told I was being discharged Want/need 2
No answer given (x 3)
I can get the help I need Nothing /anything 6
Q4a: How helpful was it / would it have been to attend the CPA?

People
A lot n/a 3
A bit 7
Not at all 3
Q4b: were you asked to give your views?

People
A lot n/a 4
A bit 8
Not at all 1
Q4c: did you feel listened to?

People
A lot n/a 6
A bit 4
Not at all 3
Q4d: did you feel supported?

People
A lot n/a 6
A bit 4
231
Not at all 3
Q4e: were you able to understand what people were saying? (attended only)

People
A lot n/a 4
A bit 7
Not at all 0
Q4e: were you able to understand what people were saying? (attended only)

People
A lot n/a 4
A bit 7
Not at all 0
Q4f: were you able to understand what will happen next with your care?
(attended only)

People
a lot - I just don't find it anything; it Anything / nothing 3
doesn't feel like anything (x1)
Understood what will 11
a lot nothing (x1) happen next with care
a lot (x7)
a bit (x2)
5. Was there anything you didn't like about attending the CPA?
People
everything is said but nothing is done, Dont know / no 2
it's just following the guidelines. Most of answer
the people there don't even know me. I No 2
knew what would be said anyway.
made me nervous Things are said but 1
dont know not done
not really Nervous / Too many 3
everything; not being able to say people / Attention on
anything and Dr [name] not letting me
anyone speak, including me!
232
too much attention on me. I felt Everything 2
embarrassed having my business
discussed in front of a male advocate.
Everything
All the people
All of it
Looking like a fool! Everybody is
intimidating. Its so formal and I forget
forget or freeze*.
No*
*reports by YPs who didnt attend this
time about the previous CPA
experiences
Q5a: How many people were there? (attended only)

People
Too few n/a 0
Far too many 7
About right 4
Q5b: did you find it hard to say what you think? (attended only)

People
No n/a 3
A bit 4
Yes 4
Q6. How much did your CPA help you understand why you are in hospital?
People
I already understand n/a 8
A lot 2
A bit 2
Not at all 1
Q7. How much did your CPA help you understand your care plan?
People
I already understand n/a 5
A lot 4
A bit 3
Not at all 1
233
Q8. How much do you agree with your care plan?
People
A lot A lot 3
A bit A bit 7
Not at all Not at all 2
I just go along with it now. I cant be
bothered trying to make them get it.
Dont know Dont know 1
Q9: is there anything we can do to make the CPA more helpful for you?
People making this
point
If people there all said their bit instead those present - 1
of just sitting there. If there was more strangers
action follow up than words. attending to and 2
don' t know including YP
not sure decision-making - 1
no (x7) control
not really action / inaction 2
I don't appreciate people who I rarely
ever see / talk to deciding / making
decisions about me. Yes, they might
know what's best but they're virtually a no / not really 8
stranger to me.
pay more attention to the YPs and
make sure they get a chance to speak
don' t know / not sure 2
234

Studentthesis-Anna Janssen 2013

Diunggah oleh

Informasi Dokumen

Hak Cipta

Format Tersedia

Bagikan dokumen Ini

Bagikan atau Tanam Dokumen

Opsi Berbagi

Apakah menurut Anda dokumen ini bermanfaat?

Apakah konten ini tidak pantas?

Hak Cipta:

Format Tersedia

Studentthesis-Anna Janssen 2013

Diunggah oleh

Hak Cipta:

Format Tersedia

This electronic thesis or dissertation has been

downloaded from the Kings Research Portal at

Patient and spouse perceptions of cognitive and neuropsychiatric symptoms in

Janssen, Anna Lee

END USER LICENCE AGREEMENT

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0

You are free to:

Under the following conditions:

Take down policy

Download date: 06. Mar. 2017

Title:Patient and spouse perceptions of cognitive and neuropsychiatric symptoms in

END USER LICENSE AGREEMENT

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0

You are free to:

Under the following conditions:

Take down policy

Main Research Project

Service Evaluation Project

Submitted for the partial fulfilment of the

Doctorate in Clinical Psychology

Kings College London

Main Research Patient and spouse perceptions of cognitive

Supervisors: Dr Lidia Yaguez

Professor Richard Brown

Service Evaluation The Care Plan Approach at

Supervisor: Dr Rachel Zwi

Professor Richard Brown

I thank Parkinsons UK for assisting me in recruitment of participants.

I thank my supervisors. Professor Richard Browns considerable expertise and

1. Introduction 1. 1 Parkinsons Disease (PD): An overview 14

1.2 Non-motor symptoms (NMS) in PD 16

1.3 Cognitive and neuropsychiatric symptoms in PD

Prevalence and phenomenology 16

1.4 Patient wellbeing and HR-QoL 21

1.5 Carer wellbeing and HR-QoL 22

Positive aspects of caregiving 24

1.6 Couples experiences of PD 25

1.7 Subjective illness appraisals in PD 27

Illness appraisals in couples 28

Key question of the study 33

Exclusion criteria (for all participants) 35

Power analysis for sample 35

2.3 Recruitment procedure 36

2.4 Screening measures 36

2.5 Assessment procedure 38

Measures for people with PD 39

Measures for carers 43

2.6 Data handling and statistical analysis 44

Data handling and statistics 44

Treatment of missing data 45

Correction for multiple testing 45

3. Results 3.1. Differences in patients and carers perceptions of

3.3.Discordance within couples between carer and

4. Discussion 4.1 Overview of the study sample 77

Demography of patients and carers 77

Disability, HR-QoL, distress and relationship

Patient cognitive functioning 79

Patient and carer reports of CNPS presence and

4.3 Interpretation of results 81

Patient disease characteristics and objective

Patients and carers ratings of CNPS presence and

Objective and subjective cognitive functioning 82

Patient and carer distress in relation to CNPS 83

Patient and carer relationship satisfaction 84