Relationships between people with dementia and their carers

Abstract

This thesis consists of three papers, a literature review, an empirical paper and a reflective paper. The literature review covers two distinct but interlinked areas of research: the impact of dementia on the quality of relationships, and the impact of relationship quality on the experience of living with dementia. The literature review clarifies the interactions between these factors by using a model to demonstrate the influence of relationship factors on the experience of living with dementia. Methodological issues and suggestions for future research are discussed, and the findings are summarized with particular reference to clinical implications. The empirical paper reports on a study of the awareness of carer distress in people with dementia. Ratings of carer psychological health were elicited from people with dementia and from the carers themselves as a pair. Comparison of the ratings showed that people with dementia are aware of their carers' psychological health. A control group of people with arthritis also participated in the study. The level of awareness shown by the participants with dementia was comparable to the level of awareness of carer psychological health shown by the control group. The level of awareness of carer psychological health in the participants with dementia was not related to their level of awareness of their own memory difficulties. The thesis concludes with a reflective paper which focuses on observations made whilst conducting research interviews and recruiting participants through support groups. Reflections and learning drawn from these observations are discussed