“I don’t know if you want to know this”: carers’ understandings of intimacy and sex in long term relationships when one partner has dementia

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Youell, Jane ; Callaghan, Jane ; Buchanan, Kevin (2016)

This article explores experiences of relational intimacy (including sexual intimacy) in long-term relationships when one partner has dementia. An emerging body of research focuses on living with dementia, but work on relationships between people with dementia and their family and loved ones tends to focus on understanding the experience of caring and on constructs like ‘care burden’ (Etters, Goodall and Harrison, 2008). Research concerned with the lived experience of relationships themselves is less frequent, and very little published work focuses on experiences of sex and intimacy. This qualitative study explores how six participants experience their intimate relationships with their partners with dementia. Semi-structured interviews provided a rich source of data which were analysed using interpretive phenomenological analysis. Three master themes emerged from our analysis: a) everydayness, b) absent presence, and c) I don’t know if you want to know this. Participants explored how living with dementia constructed specific, everyday relational challenges, and disrupted everyday intimacies. Intimacy, including sexual intimacy, remains an important element of older couple relationships. Relational experiences present specific and difficult to articulate experiences for the partners of people living with dementia – particularly experiences related to sex and sexuality. Representations of older adults (particularly older adults with a long term illness) as relatively asexual beings can make elements of these relational challenges particularly difficult to express.
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