Couples' participation in dementia research and partners' perspectives on their relationship in young onset dementia

Historically, research aiming to understand the experiences of people living with dementia has undergone a number of paradigmatic shifts, such that the importance of including people with dementia, and their partners, as participants in studies is now recognised. The narrative review, reported in se...

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Bibliographic Details
Main Author: Green, Karen
Published: Lancaster University 2010
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Online Access:http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.552822
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Summary:Historically, research aiming to understand the experiences of people living with dementia has undergone a number of paradigmatic shifts, such that the importance of including people with dementia, and their partners, as participants in studies is now recognised. The narrative review, reported in section one, considers the current position of qualitative research where couples have participated, either jointly, or with both partners individually. Issues which are discussed include ethical and methodological issues, and the ways in which different research methods affect the resulting data for example, whether couples participate jointly or are interviewed separately. The review does not argue in favour of anyone particular methodological approach, rather it is intended that it will provide a useful summary of the relevant issues to aid researchers considering the development of further studies. The research paper in section two examines participants' perspectives on their relationships with a partner diagnosed with young onset dementia. Six women and five men took part in semi-structured in-depth interviews which were analysed using constructivist grounded theory. Four core categories emerged Establishing a New Normal; Taking up the Mantle; Living with Uncertainty; Living With Loss. These were understood as having a temporal and interactive relationship, moderated by two contextual concepts: Too Young for Dementia and Availability of Support. It is this interactive relationship, which is a key finding of this research. The results were discussed in relation to the existing literature on caring partners and relationships in dementia. Critical reflections of the issues arising during the undertaking of this thesis, particularly in relation to the grounded theory methodology, were discussed in more detail in the critical review, in section three.