Well-being in dementia : case study examination of the importance of interactions with the carer

Many people try to present their best side to the pubic world; people with dementia are no exception. Carers may find this infuriating as doctors, nurses or social workers may never see the person’s more ‘difficult’ side. Researchers, too, may only spend short periods of time observing or questioning people with dementia and their carers. This thesis sets out findings from a different approach to exploring their day-to-day lives. Here the researcher made extended stays of up to three days with people with dementia and their carers and repeated these visits several times over the course of 30 months. Using a case study approach for analysis the researcher looked at psychosocial aspects which may affect the person with dementia’s well-being, in particular interactions with their carer, verifying previous findings reported in the literature. As well as using pre-existing measures for well-being the researcher also employed Dementia Care Mapping, for the first time, in a community setting. As well as studying interactions, this thesis questions the motivation behind the carer’s style of care. In particular the carer’s perception of what it may be like to have dementia is explored. Here the notion of social health, death of the ‘person’ before biological death, is investigated as a possible causal factor. As previous work on social death was limited a measured was devised by drawing on a thematic analysis of six biographies written by carers of a relative with dementia. The reader is introduced and immersed in the lives of five couples who have been affected by dementia. Such an emotionally charged subject cannot fail to touch the researcher or reader alike. Reflexivity in research is one way of dealing with this. Throughout the thesis the researcher lays bare her thoughts and feelings and how they affect her research for the reader to make the ultimate decision.