Background: Parkinson’s disease (PD) is a common, life-limiting, neurodegenerative condition. Despite calls for improved access to palliative care, provision is lacking, due in part to poor understanding and recognition of palliative care needs. Where services exist, negotiating the chronic-palliative interface is challenging. Aims: 1) To establish the palliative needs of people living with PD. 2) To adapt and clinimetrically test a palliative assessment tool for PD. Method: A sequential mixed method design was adopted: Aim 1: Systematic review and synthesis of qualitative evidence and primary qualitative study (focus groups and semi-structured interviews). Combined findings used to adapt a palliative care assessment tool for Parkinson’s disease. Aim 2: Face and content validity tested by expert panel. Construct validity examined in 50 people with PD and their carers. Inter-rater reliability examined in broad range of clinicians using video consultations. Results: Aim 1 – Four lines of argument were identified: i) Information tension, ii) care tension, iii) interpersonal negotiations, iv) intra-personal negotiations. The response to diagnosis, carer vigilance and presence of disease milestones were highlighted. Aim 2 - Construct validity was good (tau B > 0.6) for two constructs, moderate (>0.4) for five and fair (>0.2) for the remainder. Reliability as measured by kappa was moderate (kappa >0.4) for four, fair (>0.2) for five and poor for four constructs. Two constructs with poor kappa are explained by extremely high percentage agreement. Conclusions: Adaptation of the NAT:Parkinson’s disease has been successful, with clinimetric properties supporting use by a range of clinicians. Future studies should examine utility within integrated services.

Dementia is a public health priority and its importance is projected to increase in coming decades, particularly in low-to middle-income countries. A description of the methodological challenges of observational studies and the limitations of previous attempts to combine the published literature leads me to discuss ascertainment of dementia cases and the suitability of dementia mortality as an outcome. I report the findings of a memory clinic study where 71.5% of 502 deceased individuals with probable Alzheimer dementia had dementia correctly recorded on their death certificate, which is an improvement on similar results from two decades earlier. I review the evidence for geographical variation in dementia and discuss the implication that such variation might point towards potentially modifiable risk or protective factors for dementia. I have attempted to overcome the methodological challenges alluded to above by only examining within-study comparisons. A metaanalysis of rural-urban comparisons reveals some evidence of increased prevalence (odds ratio; 90% confidence interval (CI): 1.11; 0.79, 1.57) and incidence (1.20; 0.84, 1.71) of dementia in rural areas. These associations were stronger for Alzheimer dementia and particularly so in studies which identified early life rural residence (prevalence 2.22; 1.19, 4.16; incidence 1.64; 1.08, 2.50). Since there are no effective treatments, there is an obvious need to focus on prevention and an urgent need to improve our understanding of the aetiology of dementia in order to attempt to prevent or delay its onset. However, it is clear that prevention must begin sufficiently early in life to have an effect – intervening in later life might be too late. I describe a body of work using the Health Survey for England cohort studies examining the association between a series of risk factors and later dementiarelated death, including cardiovascular disease risk factors, psychological distress, and socioeconomic status. For example, there is a dose-response relationship between increasing psychological distress and dementia death (12-item General Health Questionnaire score 1-3 vs 0 age- and sex-adjusted hazard ratio; 95% CI: 1.44; 1.17, 1.78; score 4-12 vs 0: 1.74; 1.36, 2.22). I conclude by summarising the contribution these publications have made to the field of dementia epidemiology and by outlining ongoing and future projects building on the work presented in this thesis.

Dementia is a growing global concern and a high proportion of people with dementia come in to contact with acute medical care settings. However, little is understood of how people with dementia experience hospital stays. The current study therefore set out to explore the experiences of people with dementia when they are hospitalized for physical health conditions. Due to the limitations in the cognitive capacity of those with moderate or advanced dementia, the experiences were studied indirectly through accounts with family carers. Semi-structured qualitative interviews were undertaken with eight carers from across England and Wales. In each case they cared for a person with dementia who had been admitted to hospital for a physical health condition at least once within the last eighteen months or who was currently in hospital. A Constructivist Grounded Theory approach was used to analyze the data and three key themes were identified: ‘course of illness in the community,’ ‘experience of organization care’ and ‘transitions in care.’ The themes were discussed in the context of the results of previous related studies, including studies that were included in a systematic review of the existing literature. The findings were suggested to have a number of implications for delivering inpatient services to people with dementia. These include implications related to: staff training and the monitoring of the effectiveness of training interventions; clinical practice in hospitals; the involvement of people with dementia and their carers in care and discharge planning; and the engagement of carers with formal support organizations. Limitations of the current study are discussed and a number of recommendations are made for further research on topics related to the current research.

There is a paucity of research studies exploring the changes to social connectedness of people diagnosed with bvFTD and their families, from the premorbid to late stages of the condition. The purpose of this exploratory study was to establish how and why social connectedness changed for the study families over the progression of bvFTD. Social citizenship was selected as the conceptual framework and case study research as the methodology. Five families living with the effects of bvFTD volunteered for the research, and each person with the diagnosis was in the middle/late stages of the condition. Data was collected from the case study families and contacts, using a range of data collection tools (semi structured interviews; document review; diaries and participant observations). Thematic analysis was selected to examine the data collected from each family (within case analysis) and then the findings were compared and contrasted with the other families studied (cross case analysis). Six themes were identified from the collected data: i).“Why are they behaving like this?:Finding a reason; ii).“What is happening to our family? Changing family relationships.; iii).“Other people are noticing”; iv).“Getting a diagnosis”; v).“Now we know what it is.” and vi). “Grief and loss”. Findings indicated that relationships and social connectedness deteriorated in the pre diagnosis stage, and families stated it was largely due to the behavior, personality and social functioning changes of their family member, and the belief that these changes were intentional. By the time a diagnosis was given, the relationships and social connectedness had broken down to such a degree that they could not be rebuilt. The families described how they were no longer invited to social events in the same way as before and their social network reduced significantly. The families also stated that they tended to withdraw from social networks and events due to the embarrassment caused by their family member’s changed behavior. In conclusion, if bvFTD was recognized, diagnosed and specialist advice and support, given earlier by practitioners it could enable families to understand the effects of bvFTD on their family member’s behaviour. This could enable the family to retain relationships and connectedness, develop coping strategies, build resilience and prevent crises. Recommendations for clinical practice: i) increased training for medical practitioners, health and social care staff regarding early recognition and diagnosis of bvFTD; ii) specialist post diagnostic support offered immediately after diagnosis, and iii) awareness raising through campaigns which could include workplace awareness training.

The aim of the review was to explore the experiences of adult-children caring for a parent with dementia. A search was conducted for literature which has been published between 1990 and 2012; exclusion criteria were applied and 15 papers were selected to be included in the review. A meta-ethnography (Noblitt & Hare, 1988) of the literature was conducted. The review identified a number of shared themes in the experiences of caregivers. These included: ‘motivations/incentives to care’, ‘the role of a carer’, ‘common emotions/feelings’, ‘ways of coping’ and ‘services/systems’. The review highlighted the complexities involved when caring for a parent with dementia and the potential impact of the past relationship on the present experiences of the carer. The similarities between the findings of the current review and findings from dementia and other caregiving research are discussed as well as implications for clinical practice.

Oral care is essential in maintaining oral hygiene and oral health. When oral care is neglected individuals are at risk of oral and systemic complications affecting general health. Stroke patients are one group who are at risk of poor oral health due to their physical and cognitive dependency. Providing oral care is normally the responsibility of the nurses, and currently there is little evidence to support oral care provided. Through a series of studies this thesis aims to explore oral care in hospitalised stroke patients with the aim of developing an oral assessment to inform oral care. An integrative literature review examining oral assessments developed for use in a dependent population, identified that an oral assessment for use in stroke patients did not exist. The majority of oral assessments had been developed using the empirical literature and/or expert opinion, with a focus to assess oral health and cleanliness. Those assessments that were selected for review were found to be of a poor quality both in development and testing of psychometric properties. Where agreement had been tested, both within and between raters, agreement was variable across all items. The information gathered from the review was used to aid the design of a qualitative study to explore stakeholder’s views of oral care in stroke patients, and the development of a new oral assessment for use in stroke patients. An interpretive approach was utilised to explore the views and experiences of experts in oral health and stroke; health professionals’; patients’ and carers’. Two different methods were used to capture this data: one to one interviews for the experts in oral health and stroke, patients and carers; and focus groups for the health professionals. Eight experts were interviewed, five patients, five carers and the two focus groups with six/seven health professionals. The findings illustrated that oral care is complex, and assessment is only one component of this process. Five concepts relating to oral assessment were identified by all the groups: ability to attend to oral care; oral health and cleanliness of the oral cavity; comfort of the oral cavity; contributing factors; assessment format and layout. The findings from the qualitative interviews, focus groups, and the literature review, were presented to an expert panel that contained a representative from the oral health experts, stroke experts, health professionals, patients and carers. This group reviewed the data and, using a systematic approach, developed the new oral assessment; the Comprehensive Oral Assessment Tool for Stroke (COATS). Following development, the COATS was tested for within and between rater agreement, and diagnostic accuracy, in 82 stroke patients on an acute stroke unit. Agreement was tested, in registered and unregistered nurses, and ranged from fair to very good. The registered nurse showed better agreement than the unregistered nurse. The COATS also demonstrated in this initial testing that it could correctly identify a high proportion of patients either with or without a problem. This thesis has provided some novel findings that will contribute to the existing knowledge of oral care in a stroke and dependent population. It has provided an overview of the quality of oral assessments available to nurses looking after acutely ill patients as well as highlighting all the potential issues that need to be considered when implementing a new oral assessment into clinical practice.

Background: Family carers are fundamental to supporting people with dementia to remain at home; however psychological distress can occur as a result of their caring role. Research into the effectiveness of interventions for caregivers of people diagnosed with Young-Onset Dementia (YOD), the experience of those using such interventions, and the mediating processes, are limited. Methods: Five carers, providing support for a family member with YOD, were interviewed with the aim of exploring how they experienced the “Responding to Distress in Dementia” group being offered within NHS Lanarkshire. In addition, the study aimed to identify the influence that group participation had on caregiving. Interviews covered the whole ‘caregiving journey’ from first noticing symptoms, experiences in the group, and the time until interviews, and were analysed using Interpretative Phenomenological Analysis. Results: Within the group experience, four superordinate themes were identified: ‘connecting to other carers’, ‘learning about caregiving’, ‘group factors’ and ‘reduced carer distress’. During the post-group period, three superordinate themes were recognised: ‘maintaining support’, ‘applying learning’, and ‘normalising caregiving’. Conclusions: The study highlighted several interrelated themes involving creating connections to carers with similar experiences, social learning, and supportive learning through group structure and facilitation. Many of the processes are found within existing dementia caregiver intervention research. Implications for service provision and future research are outlined. Research examining the effectiveness of the intervention group used is currently underway.

Background: Caring for a person with dementia is thought to increase the likelihood of experiencing reduced emotional, social and psychological wellbeing. It is therefore important to consider what types of support may be beneficial. Emerging evidence suggests that Acceptance and Commitment Therapy (ACT) may have positive effects on individuals’ subjective wellbeing. To date, the potential efficacy of ACT for enhancing subjective wellbeing in carers of people with dementia has not been fully explored. Aims: The primary focus of this study was to evaluate the feasibility of delivering an ACT group for caregivers of people with dementia. Study aims were investigated using the PICO framework (Population, Intervention, Control, Outcome) and included questions regarding recruitment, retention, intervention fidelity, acceptability and signs of efficacy. Method: A mixed methods uncontrolled feasibility trial design was used. The ACT group was delivered over three 2.5-hour sessions at two different sites. The following outcome measures were administered at baseline and at the end of the final session: Mental Health Continuum - Short Form, Acceptance and Action Questionnaire - II, Experiential Avoidance in Caregivers Questionnaire, and the Caregiver Burden Scale. Acceptability of the intervention was measured using a semi-structured group interview and evaluation questionnaire. Results: Recruitment, although successful, highlighted challenges for services and service users. Eighteen participants were recruited (group 1 = 12, group 2 = 6) and over one quarter of participants did not attend all three groups (group 1 = 2, group 2 = 3) due to poor physical health and caring duties. The group was delivered with fidelity to the ACT model. Group participation was associated with increased levels of overall subjective wellbeing, particularly social wellbeing. No significant changes were observed in terms of emotional or psychological wellbeing, psychological flexibility or burden. Overall, participants declared the group to be acceptable and useful. Conclusions: There is a need to improve support options for carers of people with dementia. Larger scale studies (e.g. RCTs) might continue to explore the efficacy and change mechanisms of ACT interventions for this population. Optimisation of the group delivery (e.g. session quantity) would be useful as part of future intervention development.

This portfolio thesis contains three parts: a systematic literature review, an empirical paper, and a set of appendices. Person-centred and social constructionist approaches to dementia have proposed that the experience of living with the condition is influenced by the responses of others towards the individual, and the personal response of the individual to dementia. Part one is a systematic literature review that therefore critically evaluates and synthesizes the qualitative literature pertaining to the way in which people with dementia experience the responses of others towards them. The review aims to further our understanding of how people with dementia perceive the responses of others and the impact that these have upon them. This is deemed to be an important area to address given that theoretical understandings of dementia assign a critical role to the responses of others in influencing an individual’s experience of dementia, and yet this aspect of subjective experience has been overlooked in previous reviews. Following a systematic search of the literature, 23 studies were suitable for review based on the inclusion criteria. A critical interpretative synthesis was conducted, leading to the development of four main themes to capture findings across the reviewed literature: ‘Social outcasting – being treated as an other’; ‘Social relegation – being treated as lesser’; ‘The impact of others’ responses’; and ‘Strategies to manage the responses of others’. These themes and the subthemes within them are compared and contrasted to the themes developed by researchers in their original findings, paying attention to the discourses that may have been influencing their interpretation. The strength of the evidence is evaluated, and implications for clinical research and practice discussed. Part two is an empirical paper investigating people’s personal responses to dementia, focusing upon subjective experiences of growth in older people living with dementia. A qualitative methodology was utilised, using semi-structured interviews to investigate participants’ experiences of positive and/or meaningful changes since living with dementia. Interviews were conducted with nine older people diagnosed with dementia living in the community. Interpretative phenomenological analysis was used to explore participants’ subjective experiences and how they had made sense of these. From this, a theme of ‘Moving Forward’ was developed, containing five subthemes. A second theme of ‘Living in the Now’ was also developed, containing two further subthemes. The findings are discussed with consideration of the discourses we use to talk about dementia, and the implications of a growth discourse to clinical research and practice. Part three consists of a set of appendices for both systematic literature review and empirical paper, including a reflective account of the research process and a statement of epistemology.

Purpose: This review evaluates the impact of intervention studies for informal dementia caregivers. Methods: Meta-analytic methods were used to integrate the findings of 14 intervention studies evaluating the cognitive behaviour therapy for caregivers. Meta-regression and analysis of variance were used to evaluate the impact of caregiver and intervention characteristics on the outcomes. Results: Significant effects sizes were found for the impact of CBT on depression, burden, and mental health difficulties, g* = -0.55, 95% CI [-0.92, -0.19], g *= -0.37, 95% CI [-0.57, - 0.17], and g* = -0.54, 95% CI [-0.78, -0.30], respectively. CBT facilitated more adaptive coping, with significant effects on caregiver adaptive coping and dysfunctional thoughts, g* = 0.48, 95% CI (0.02, 0.24) and g* = -1.33, 95% CI (-2.22, -0.44). The impact of CBT on caregiver outcomes was associated with the nature of the study control condition, and the intervention delivery, timing and specificity to dementia type. Caregiver ethnicity and gender were not predictive of the CBT outcome. Implications: Overall, caregiver interventions are efficacious in alleviating caregiver distress and facilitating more adaptive coping responses, with prominent effects established for CBT. Future research needs to consider CBT as part of multi-intervention approach tailored to the needs of caregivers across the disease progression. Further improvements are needed, with greater consideration of the impact of the intervention design in alleviating caregiver distress.