Peer support involves matching people in need of support with volunteers who have been in a similar situation. Whilst motivations and positive and negative aspects of general volunteering have been noted in the literature, little is known about the impact of providing peer support in the context of personal experiences of caring for someone with dementia. The aim of this study was to use rich, detailed case studies to build narratives of the impact of being a carer supporter. Participants were experienced carers of a person with dementia (either current or former), matched in a programme with newer dementia carers for a ten month period. The aim of the programme was to improve a sense of self-efficacy and competence in the newer carer through encouragement and positive reinforcement of carer skills development and carer network building activities. Eight carer supporters from two London Boroughs took part m semi-structured interviews. These were subject to a narrative analysis, focusing on structural components of the narratives, themes, and the influence of the wider socio-cultural context.

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The term 'person-centred care' is used widely within mental health and healthcare fields and is particularly prominent ~thin the dementia care sphere. Specifically, it is posited as the preferred approach to care with individuals with dementia but in terms of evaluating the effectiveness of this approach, numerous methodological challenges appear prevalent. A narrative literature review, reported in section one of this thesis, posits that the methodological challenges of person-centred care evaluation research include problems with delineation, the outcomes used and the diversity of person-centred care approaches. The review suggests possible solutions to these methodological challenges and highlights overcoming the present challenges would enable the person-centred care philosophy to be increasingly well-supported, through high-quality research evidence. In exploring the factors involved in the care of people with dementia, the research paper, reported in section two of the current thesis, explored the subjective experience of personhood for those with dementia within dementia care settings. The research employed qualitative methodology, specifically interpretative phenomenological analysis, and the findings highlighted the impact of the hospital ward environment, other members of the groups within this environment, as well as individuals' past roles upon the support of personhood . ./ These findings were discussed in relation to other relevant literature and highlighted the salience of considering the group dynamics and the specifics of dementia care environments, when successfully supporting personhood in dementia. Limitations of the current study and future research in this area were also considered. Reflections upon the different stages of research process were discussed in a critical review, reported in section three of this thesis.

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The Values History was originally developed to identify core values and beliefs important to individuals with terminal illnesses as a basis for medical treatment should they lose capacity (Doukas and McCulloch, 1991). The research shows that the standard paradigm of empowerment, which involves individuals with dementia having a clear understanding of the prognosis of the illness to make plans for the future, is complex. Twelve people diagnosed in the early stages of dementia were interviewed twice to complete individual Values Histories. Their carers were interviewed separately and then together with the participants with dementia. Despite knowing their diagnosis and appreciating the opportunity to discuss their current feelings about the illness, only a few participants were able to discuss, or indeed wanted to discuss, the prognosis or future in relation to dementia. No participants wanted to view long term care establishments. However, the research showed that the vast majority were clearly able to document their values and aspects of future care related to old age rather than dementia. Carers confirmed accuracy of their values. With regards to the impact of Values Histories on future caregivers, forty professionals were interviewed. Two Values Histories were shared with the participants and vignettes were used to explore the extent to which they would refer to individuals’ past values and wishes. The study showed that the vast majority of professionals would refer to the documents and find them useful. The majority would attempt to maintain past wishes and values, although not if it caused agitation. General values, medical values, family relationships, religious values and end of life decisions were areas that were considered most beneficial. The person’s perception of independence and future risk taking were the areas that caused most controversy.

Research into the lived experience of dementia, which has tended to focus on people with dementia and their spouses (carers) separately, has identified that that spousal relationships play a crucial role in this experience. However, there is a lack of knowledge as to how the dyadic interactions in spousal relationships affect the experience of dementia for couples. This thesis aimed to address this gap by exploring how couples in which one partner had mild dementia described the impact of dementia and their attempts to cope with it. It was a qualitative study which followed the theoretical and methodological stance of Interpretative Phenomenological Analysis. Face to face semi-structured interviews were conducted with twelve couples, with each partner interviewed separately. Results illustrated that couples’ reported their experience as a chronological process and were motivated to get on with their lives by maintaining a sense of normality. This study contributed to the literature by revealing how both partners experienced and coped with dementia, and the impact that their actions had on their spouse. Couples maintained normality through developing positive cognitions, keeping active, lessening the load and direct discussion and support. It was clear that couples’ (particularly carers’) awareness of dementia and its implications, combined with their knowledge of their spouse, affected how they experienced and coped with dementia. It was also clear that couples had different expectations about what constituted an acceptable level of communication, which thereby affected choice of coping strategy. The idea of a Relationship Continuum as a way to consider the impact of pre-morbid relationship styles on couples’ responses to dementia was explored. Results were discussed in terms of existing knowledge and ways in which this thesis has added to the literature were highlighted. Professional and practice implications, limitations and future research were discussed.