Harman, G.; (2004) The impact of information on illness representations and coping in early dementia from the perspective of the person with dementia - A phenomenological approach. Doctoral thesis , University of London.

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Abstract

The onset of chronic illness often leads to threats to perceptions of self identity and challenges to prior ways of living. The self-regulation model of illness behaviour of Leventhal, Nerenz and Steele (1984) has provided a framework for understanding how people may manage these threats to self. To date this has been applied predominantly to physical illnesses and a few chronic neurological illnesses including Motor Neurone Disease. Whilst there have been several studies which have looked at the experience of people with early dementia, none has used the self-regulation model as a framework. A semi-structured interview methodology was used to explore the following questions. What representations do people with early-stage dementia have following diagnosis How do people's representations relate to the experience of early-stage dementia and how they manage it What are the implications for theory from what people tell us about their experience Interpretative Phenomenological Analysis (IPA) was used to analyse the data from the interview transcripts. This approach attempts to understand people's beliefs about a given topic through the assumption that there is an indirect link between what people report and underlying cognitions. IPA is a phenomenological approach in that it is concerned with individual subjective accounts and beliefs about objects or events and interpretive in that these accounts are elicited through a dynamic process in which the researcher's own beliefs play a part as they interpret data. Two overarching themes emerged from the analysis. These themes are 'Understanding Dementia: It Will Get Worse', which represents the individual's knowledge and representations of dementia, and 'I Want To Be Me', which represents the lived experience of adapting to dementia. The first of these themes is constructed from a number of sub-themes. 'I Want To Be Me' has two components of 'Personal Dilemmas: Where Do I Stand' and 'Interpersonal Dilemmas: The Line Is Crossed', each of which is also constructed of further sub-themes. The results were discussed in relation to each of the research questions in turn. It was then considered how the results add to the understanding of the experience of early dementia. A tentative model of how illness representations contribute to the lived experience is suggested. Areas for future research in the field that emerged from the study were discussed including the potential of exploring and comparing the representations of different groups of people. Possible methodological limitations of the study were explored in the context of the implications these may have had for the wider applicability of the results and how the researcher's assumptions and experience may have influenced the outcome of the study. Finally, implications for clinical practice arising from the study were discussed. These included the need to recognise the importance of directly involving people with dementia in the diagnosis sharing process, if they so choose and how people with early stage-dementia may be helped in maintaining their sense-of-self whilst adjusting to dementia related changes.

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