“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

Article English OPEN
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.
  • References (15)
    15 references, page 1 of 2

    Alm, N., Astell, A., Ellis, M., Dye, R., Gowans, G. and Campbell, J. 2004. A cognitive prosthesis and communication support for people with dementia. Neuropsychological Rehabilitaion, 14, 1/2, 117-34.

    Alzheimer's Disease International. 2013. Policy Brief for Heads of Government: The Global Impact of Dementia 2013-2050. Alzheimer's Disease International (ADI), London.

    Alzheimer's Research UK. 2011. Dementia Statistics. [online] Retrieved 06 September 2011,from http://www.alzheimersresearchuk.org/dementia-statistics Alzheimer's Society. 2008. Facts for the media. Retrieved, November, 09, 2008, from http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200142 and documented=535 .

    Baikie, E. 2002. The impact of dementia on marital relationships. Sexual and Relationship Therapy, 17, 3, 291-9.

    Bamford, S.M. 2012. Sexuality and intimacy in people with dementia. Practice Nursing, 23(9), 436-442.

    Bauer, M., Fetherstonhaugh, D., Tarzia, L., Nay, R., Wellman, D., and Beattie, E. 2013. 'I always look under the bed for a man'. Needs and barriers to the expression of sexuality in residential aged care: the views of residents with and without dementia. Psychology and Sexuality, 4,3, 296-309.

    Bauer, M., Nay, R., Tarzia, L., Fetherstonhaugh, D., Wellman, D., and Beattie, E. 2013. 'We need to know what's going on': Views of family members toward the sexual expression of people with dementia in residential aged care. Dementia, 13, 5, 571-85.

    Benbow, S.M. and Beeston, S. 2012. Sexuality, aging, and dementia. International Psychogeriatrics, 24, 1026-33.

    Calasanti, T., & Bowen, M. E. 2006. Spousal caregiving and crossing gender boundaries: Maintaining gendered identities. Journal of Aging Studies, 20, 3, 253-63.

    Dourado, M., Finamore, C., Barroso, M. F., Santos, R., & Laks, J. 2010. Sexual Satisfaction in Dementia: Perspectives of Patients and Spouses. Sexuality and Disability, 28, 3, 195- 203.

  • Metrics
    views in OpenAIRE
    views in local repository
    downloads in local repository

    The information is available from the following content providers:

    From Number Of Views Number Of Downloads
    NECTAR - IRUS-UK 0 142
Share - Bookmark