The majority of people with dementia are cared by family members. Family caregivers of PwD are vulnerable to high levels of burden, depression and loneliness. Social support, as a coping resource, can play an important role in the stress process. However, levels of social support can be lower than needed, which may lead to the experience of loneliness. This study aims to examine the effects of social support on caregivers' psychological well-being and whether social support interacts with burden or mediates in the burden — psychological outcome relationship, both cross-sectionally and longitudinally. Furthermore, I examine predictors of loneliness in caregivers of PwD and in particular the relationship between loneliness and social support. Methods: 120 family caregivers of PwD living in the community were interviewed at baseline and 97 (>80%) were re- interviewed two years later. Recruitment took place in the UK counties of Norfolk and Suffolk, and the London Borough of Havering. I employed measures of depression, perceived emotional support, burden and loneliness with sound psychometric properties. Results: Social support was significantly associated with reduced depression both at baseline and follow-up. Social support also was suggested to mediate the burden — depression relationship at baseline, but did not appear to buffer the effects of burden on depression. Psychosocial variables of perceived support and loss of companionship were suggested to predict loneliness over and above the demographic variables. Furthermore, perceived social support did not significantly buffer the effects of loss of companionship on loneliness. Therefore, different aspects of loneliness may be experienced as a result of loss of supportive others or loss of an attachment figure. Conclusions: Social support is suggested to reduce the effects of burden on depression, irrespective of how burdened caregivers were. Social support also is suggested to reduce feelings of loneliness but not those of loss of a close relationship.

Background: Men are considered to be reluctant to seek help for their psychological distress, with men within the age ranges of 35 to 49 years old considered to be particularly vulnerable in tenns of their mental health (Her Majesty's Government, 2011; Moller-Leimkuhler, 2002). To date research has largely focused on trying to understand men's reluctance to utilise mental health services, resulting in a paucity of research exploring what men do to cope with psychological distress instead of accessing mental health services alongside how men overcome barriers to psychological help-seeking. This research aimed to explore the accounts of psychological distress and the pathways into IAPT services for men between the ages of35 to 49 years old. Method: Men within the age ranges of 35 years to 49 years who had been referred to an IAPT service were the target population. In-depth semi-structured interviews conducted with 11 men, obtained detailed narratives of episodes of mental distress and accounts of psychological help-seeking. An abbreviated version of GroW1ded Theory was adopted using the framework provided by Channaz (2006). Results: Stigma and endorsement of masculinity scripts informed the men's decisions at various stages of the pathway into psychological help-seeking and engaging with help-receipt. Disparaging or encouraging commentary from within social support networks played an important part in psychological help-seeking. The men's perception of the severity of their mental health symptoms alongside their perception of the risks of not seeking psychological help impacted on whether psychological help-seeking was initiated. GP communication style was highlighted as important in determining whether the men's mental health problems were recognised. Contribution to the Field: This research bridges an important gap in understanding how masculinity scripts, stigma and social support networks inform men's decision making around psychological help-seeking. This' research provides a tentative conceptual framework which outlines how men between the ages of 35 and 49 years old come to engage in psychological help-seeking, Clinical and research implications raised by this research are discussed.

This thesis is divided into three sections. The first section comprises a literature review, which aimed to understand the experiences of staff in supporting clients with intellectual disabilities with issues of death, dying, and bereavement. A metasynthesis was conducted to review 13 papers meeting the inclusion criteria. Three themes were developed: (1) Talking about death is hard: Negotiating the uncertainty in death, dying, and bereavement; (2) The commitment to promoting a “good death”; and (3) The grief behind the professional mask. An overarching theme, “A cautious silence: The taboo of death,” was also developed. The taboo culture surrounding death in intellectual disability services is discussed in relation to relevant literature, and clinical recommendations are offered. The second section, a research paper, explores the experiences of ten paid staff who have supported a person with an intellectual disability and dementia within a supported living setting. An interpretative phenomenological analysis was used. Four themes were developed: (1) The value of the pre-existing relationship to paid staff as dementia progresses; (2) Finding ways to connect when reciprocity has gone; (3) Resisting dementia “creeping in” and taking control; and (4) The stronger the pre-existing relationship, the greater the emotional cost of dementia. The findings support previous research, suggesting that intellectual disability services are well-placed to support people with intellectual disabilities with dementia, due to staff’s in-depth knowledge and well-established relationships. However, the findings also highlighted the emotional cost of this role to staff. Recommendations for clinical practice and ideas for further research have been offered. In the final section, the critical appraisal, I offer my reflections on the process of conducting the aforementioned research with paid staff supporting people with intellectual disabilities and dementia. I explore the process of developing the research idea, and reflect on the emotional nature of the topic.

Reasons why people might behave in ways that are challenging for others include dementia and learning disabilities. The ways in which caregivers, who may be family members or staff, make sense of the causes of these behaviours can affect how they respond to the person. Additionally, challenging behaviours can have an emotional impact on caregivers, which may affect the attributions they make about the behaviours. A systematic literature review was conducted to identify factors which are related to the causal attributions carers make about challenging behaviours. Sixteen quantitative studies that had examined carer attributions in the areas of learning disabilities and dementia care were reviewed. A wide range of factors had been examined in relation to attributions, which were grouped for comparison into: carer and individual demographics, individual’s level of impairment and type/ severity of behaviour, service and environmental factors and carer emotions. Some factors were identified as being associated with carer attributions, including the level of impairment of the individual and the type of challenging behaviour. A qualitative research project was conducted: nine direct care staff in a residential dementia care setting took part in individual semi-structured interviews about their emotional experiences of working with challenging behaviours. Interpretative phenomenological analysis was used to analyse the data, and three broad themes were constructed: “They don’t know what they’re doing”: Understanding causal attributions; “It’s knowing them as people”: Getting to know people with dementia; and “That’s part of the job”: Experiences of the role of care staff. These themes were discussed with reference to the literature, and clinical implications and directions for future research were proposed.

The present study explored how seven women experienced having a mother with dementia. The focus was not specifically on the experience of care-giving and so daughters who lived separately from their mothers were selected. Thematic analysis was used to examine how they made sense of their experience by analysing verbatim transcripts of their interviews. The study provided personal and intimate accounts from the daughters and two main themes of bewilderment and transformed relationships were identified. These highlighted the daughters’ struggle to recognise and contend with the changes in their mothers. The context in which the themes arose appeared to be dominated by a prevailing fear associated with dementia. This seemed to be widely experienced by the mothers, the daughters and perhaps mirrored the prevalence in wider society. The experiences described were, at times, distressing for the daughters and there was a perceived lack of professional help to support both mothers and daughters through the changes. However, it was noted that some daughters also experienced positive, transformative ways to make thoughtful new connections with their mothers and aspects of the relationship were described as having improved. Therefore, for these daughters the experience appeared to be painful and distressing but also memorable and special. The new connections, that some daughters achieved, could be further explored, as this may help daughters and other extended family members to achieve more positive and rewarding relationships with their mothers and other relatives with dementia.

In the field of post-stroke rehabilitation, there appears to be growing interest in the use of virtual reality (VR)-based systems as adjunct technologies to standard therapeutic practices. The limitations and the potentials of this technology are not, however, generally well understood. The present study thus seeks to determine the value of the technology with reference to end-user requirements by surveying and evaluating its application against a variety of parameters: user focus, clinical effectiveness, marketability and contextual meaningfulness, etc. A key theme in the research considers how a technology developed internationally might interface with care provision demands and cultures specific to the United Kingdom. The barriers to innovation entry in this context are thus examined. Further practical study has been conducted in the field with a small sample of post-stroke rehabilitation patients. The data garnered from these enquiries have informed a detailed system analysis, a strategy for innovation and a broad theoretical discussion as to the effectiveness of the technology in delivering VR environments by which the patient can undertake ‘meaningful’ therapeutic activities. The data reveal that there does appear to be clinical value in using this technology, yet establishing its maximal value necessitates greater integrity among clinicians and engineers, and the furthering of progressive channels for innovation by public health administrators.

Background: Quality of Life (QoL) is now an important outcome for people with dementia but the nature of the illness means that there may be difficulty in measuring it. Aims: This thesis, using an established dementia specific outcome measure, the QOL-AD, aims to assess the validity of measuring QoL in severe dementia and to investigate determinants both of QoL and of change in QoL in dementia. Method: In the first study, 224 people with Alzheimer's disease living in community and institutional settings and their caregivers were interviewed. In the second study, 238 people with dementia living in residential homes and staff were interviewed with a follow up assessment at 20 weeks.;Results: People with a MMSE scores of < 12 and 3 could provide valid and reliable ratings of their own QoL and mood, functional ability and psychosocial factors were associated with QoL in this group. Secondly, the person with dementia's self-ratings of QoL were independently predicted by current mood, cholinesterase inhibitor treatment and living environment, whereas family caregiver ratings of the person with dementia's QoL were predicted by mood and neuropsychiatric symptoms. Similarly, in residential homes, mood was the strongest predictor of self-rated QoL but staff ratings of resident's QoL were predicted by levels of dependency. Lastly, cognition, mood function and behaviour were investigated as putative factors influencing change in QoL over 20 weeks. Change in QoL was predicted by changes in mood and cognition. Conclusion: People with severe dementia (MMSE > 2) can comment on their QoL. People with dementia's perception of QoL differs from their caregiver's perception of it. Many people with dementia experience a decline in QoL and this may be linked to deterioration in mood or cognitive function. This suggests that psychological and pharmacological interventions aimed at improving mood or cognition may also benefit QoL.

This thesis seeks to make an original contribution to knowledge in the field of dementia care. It does this by presenting a model of the personal qualities required by carers (professional and informal) of people with dementia. This model is derived from and justified by insights and research findings from within my published work into aspects of care for people with dementia. I propose that the essential task for carers is to identify and enhance the person’s sense of cognitive security, which is linked to personhood and well-being. The qualities that carers need in order to achieve this are empathy, person-centred attitudes and a compassionate approach. I analyse each of these qualities in terms of their component features, citing evidence from my published work and related literature. I then discuss some of the implications of my ideas for dementia care practice and for education and training. I conclude by considering some possible directions for future research.

Person-centred is now a widely used term to describe much dementia care in the UK and Jersey. This existential hermeneutic phenomenological research seeks to discover the lived experience of person-centred dementia care for nurses in Jersey and through this, the essences and meanings of person-centred care. It is grounded in Merleau-Ponty’s ideas of embodiment for being in the world and Buber’s primacy of relationships and includes complimentary ideas within Lévinas, Gendlin and Vanier’s philosophies. Its methodology is inspired predominantly by van Manen, it is hermeneutic in its interpretive and poetic stance and is existential in its focus on nurse’s lived experiences. Eight nurses, working in care homes and specialist dementia care units, took part in semi-structured interviews which were recorded and transcribed. Deep immersion into these texts followed using the six existentials of corporeality, relationality, temporality, spatiality, materiality and mood, proposed by van Manen and Todres, as lenses to get closer to the participants’ lived experiences, essences and meaning of person-centred dementia care. This research has been amongst the first to use six existentials for data analysis; it demonstrates the accessibility of this methodology for counsellors from its parallels with therapy; it demonstrates the potential of poetry and metaphor images to uncover the essences and meanings of phenomena; and its enhanced focus on the experience of person-centred care reveals considerable rhetoric in the use of the term in mission statements and care philosophies. This research shows that the term, and the models and frameworks associated with it, are not well understood, indicating the need to embrace a new understanding of person-centred care from the macro context to individual practitioners; the need for more effective training, education and practice development together with new support structures for nurses and better communication throughout the services. It also proposes a new vision focussed more on ‘caring’ than ‘care’ and for a uniting Jersey Dementia Strategy to help refine and define systems, policy, practice and care.

The role of illness perceptions and coping in distress and quality of life in carers of stroke survivors is investigated. The first part is a review of the literature concerning the impact of stroke on carers and the research investigating determinants of poor outcomes in these individuals. Theoretical frameworks are examined with emphasis on the potential contribution of Leventhal's self-regulation model, which provides a useful framework for investigating illness perceptions and coping in stroke carer outcomes. The empirical paper investigated the role of illness perceptions and coping in distress and quality of life in carers of stroke survivors. Seventy-two carers completed postal questionnaires. Findings indicated an important role of illness perceptions and coping in carer outcomes. Illness perceptions accounted for variance in carer distress, psychological quality of life and social relationships, over and above carer, stroke survivor and illness characteristics. Emotional representations and belief in a psychosocial cause both independently predicted greater distress. Perceptions of greater treatment control independently predicted better psychological well-being and better social relationships. Coping added significant variance in psychological and social quality of life with less use of passive coping independently predicting better psychological well-being and better social relationships. Interpretation of the findings, implications and suggestions for further research are discussed. The critical appraisal examines further the strengths and weaknesses of the study. Theoretical and clinical implications and suggestions for further research are elaborated.