Hostname: page-component-78c5997874-fbnjt Total loading time: 0 Render date: 2024-11-09T13:37:24.619Z Has data issue: false hasContentIssue false
  • English
  • Français

‘I don't know if you want to know this’: carers’ understandings of intimacy in long-term relationships when one partner has dementia

Published online by Cambridge University Press:  08 April 2015

JANE YOUELL ,
JANE E. M. CALLAGHAN  and
KEVIN BUCHANAN
JANE YOUELL
Affiliation:
Psychology, University of Northampton, UK.
JANE E. M. CALLAGHAN*
Affiliation:
Psychology, University of Northampton, UK.
KEVIN BUCHANAN
Affiliation:
Psychology, University of Northampton, UK.
*
Address for correspondence: Jane E. M. Callaghan, Psychology, University of Northampton, Boughton Green Road, Northampton NN2 7AL, UK E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

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’. 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: ‘everydayness’, ‘absent presence’ and ‘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.

Keywords

dementiaintimacyolder adultscaresexual relationships
Type
Articles
Information
Ageing & Society , Volume 36 , Issue 5 , May 2016 , pp. 946 - 967
Copyright
Copyright © Cambridge University Press 2015 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

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 Rehabilitation, 14, 1/2, 117–34.CrossRefGoogle Scholar
Alzheimer's Disease International 2013. Policy Brief for Heads of Government: The Global Impact of Dementia 2013–2050. Alzheimer's Disease International, London.Google Scholar
Alzheimer's Research UK 2011. Dementia Statistics. Available online at http://www.alzheimersresearchuk.org/dementia-statistics [Accessed 6 September 2011].Google Scholar
Alzheimer's Society 2008. Facts for the Media. Available online at http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200142anddocumented=535 [Accessed 9 November 2008].Google Scholar
Baikie, E. 2002. The impact of dementia on marital relationships. Sexual and Relationship Therapy, 17, 3, 291–9.Google Scholar
Bamford, S. M. 2012. Sexuality and intimacy in people with dementia. Practice Nursing, 23, 9, 436–42.CrossRefGoogle Scholar
Bauer, M., Fetherstonhaugh, D., Tarzia, L., Nay, R., Wellman, D. and Beattie, E. 2013 a. ‘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.Google Scholar
Bauer, M., Nay, R., Tarzia, L., Fetherstonhaugh, D., Wellman, D. and Beattie, E. 2013 b. ‘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.Google Scholar
Benbow, S. M. and Beeston, S. 2012. Sexuality, aging, and dementia. International Psychogeriatrics, 24, 7, 1026–33.Google Scholar
Berman, M. 1983. All That is Solid Melts into Air. Verso, London.Google Scholar
Birnie-Porter, C. and Lydon, J. E. 2013. A prototype approach to understanding sexual intimacy through its relationship to intimacy. Personal Relationships, 20, 2, 236–58.Google Scholar
Blieszner, R. and de Vries, B. 2001. Introduction: perspectives on intimacy. Generations, 25, 2, 7–8.Google Scholar
Boss, P. 1999. Ambiguous Loss. Harvard University Press, Cambridge, Massachusetts.Google ScholarPubMed
Boss, P. 2004. Ambiguous loss research, theory, and practice: reflections after 9/11. Journal of Marriage and Family, 66, 3, 551–66.Google Scholar
Boss, P. and Greenberg, J. 2006. Ambiguous Loss: Loss, Trauma and Resilience. Norton, New York.Google Scholar
Bowers, B. 1988. Family perceptions of care in nursing homes. The Gerontologist, 28, 3, 361–8.CrossRefGoogle Scholar
Braun, M., Scholz, U., Bailey, B., Perren, S., Hornung, R. and Martin, M. 2009. Dementia caregiving in spousal relationships: a dyadic perspective. Aging & Mental Health, 13, 3, 426–36.Google Scholar
Calasanti, T. and Bowen, M. E. 2006. Spousal caregiving and crossing gender boundaries: maintaining gendered identities. Journal of Aging Studies, 20, 3, 253–63.Google Scholar
Canary, D. J. and Stafford, L. 1994. Maintaining relationships through strategic and routine interaction. In Canary, D. J. and Stafford, L. (eds), Communication and Relational Maintenance. Academic Press, San Diego, California, 3–21.Google Scholar
Caron, C. D. and Bowers, B. J. 2003. Deciding whether to continue, share or relinquish caregiving: carers’ views. Qualitative Health Research, 13, 9, 1252–71.CrossRefGoogle ScholarPubMed
Chan, S. M. and O'Connor, D. 2008. Finding a voice: the experiences of Chinese family members participating in family support groups. Social Work with Groups, 31, 2, 117–35.CrossRefGoogle Scholar
Chesla, C., Martinson, I. and Muwaswes, M. 1994. Continuities and discontinuities in family members’ relationships with Alzheimer's patients. Family Relations, 43, 1, 3–9.Google Scholar
Davies, H. D., Zeiss, A. M., Shea, E. A. and Tinklenberg, J. R. 1998. Sexuality and intimacy in Alzheimer's patients and their partners. Sexuality and Disability, 16, 3, 193–203.Google Scholar
Dourado, M., Finamore, C., Barroso, M. F., Santos, R. and Laks, J. 2010. Sexual satisfaction in dementia: perspectives of patients and spouses. Sexuality and Disability, 28, 3, 195–203.CrossRefGoogle Scholar
Eatough, V. and Smith, J. A. 2008. Interpretative phenomenological analysis. In Willig, C. and Stainton Rogers, W. (eds), Handbook of Qualitatitive Psychology. Sage, London, 179–94.Google Scholar
Eloniemi-Sulkava, U., Notkola, I. L., Hamalainen, K., Rahkonen, T., Viramo, P., Hentinen, M., Kivela, S. L. and Sulkava, R. 2002. Spouse caregivers’ perceptions of influence of dementia on marriage. International Psychogeriatrics, 14, 1, 47–58.Google Scholar
Evans, D. and Lee, E. 2014. Impact of dementia on marriage: a qualitative systematic review. Dementia, 13, 3, 330–49.Google Scholar
Fauth, E., Hess, K., Piercy, K., Norton, M., Corcoran, C., Rabins, P. and Tschanz, J. 2012. Caregivers’ relationship closeness with the person with dementia predicts both positive and negative outcomes for caregivers’ physical health and psychological well-being. Aging & Mental Health, 16, 6, 699–711.Google Scholar
Garrett, D. 2014. Practice question: sexual behaviour. Nursing Older People, 26, 4, 14.Google Scholar
Gott, M. 2005. Sexuality, Sexual Health and Ageing. Open University Press, Maidenhead, UK.Google Scholar
Hellström, I., Nolan, M. and Lundh, U. 2005 ‘We do things together’: a case study of ‘couplehood’ in dementia. Dementia, 4, 1, 7–21.Google Scholar
Hellström, I., Nolan, M. and Lundh, U. 2007. Sustaining ‘couplehood’: spouses’ strategies for living positively with dementia. Dementia, 6, 3, 383–409.Google Scholar
Higgins, A., Barker, P. and Begley, C. M. 2004. Hypersexuality and dementia: dealing with inappropriate sexual expression. British Journal of Nursing, 13, 22, 1330–4.Google Scholar
Hinchliff, S. and Gott, M. 2004. Intimacy, commitment, and adaptation: sexual relationships within long-term marriages. Journal of Social and Personal Relationships, 21, 5, 595–609.Google Scholar
Kaplan, L. 2001. A couplehood typology for spouses of institutionalised persons with Alzheimer's disease: perceptions of ‘we’–‘I’. Family Relations, 50, 1, 87–98.CrossRefGoogle Scholar
La Fontaine, J. and Oyebode, J. R. 2013. Family relationships and dementia: a synthesis of qualitative research including the person with dementia. Ageing & Society, 34, 7, 1243–1272.Google Scholar
Laurenceau, J. P., Riviera, L. M., Schaffer, A. R. and Pietromonaco, P. R. 2004. Intimacy as an interpersonal process: current status and future directions. In Mashek, D. and Aron, A. (eds), Handbook of Closeness and Intimacy. Lawrence Erlbaum, Mahwah, New Jersey, 61–78.Google Scholar
Manthorpe, J. and Price, E. 2003. Out of the shadows. Community Care, April, 40–1.Google Scholar
O'Connor, D. L. 1995. Caring for a memory impaired spouse: a gender sensitive perspective. Journal of Women and Aging, 7, 25–42.CrossRefGoogle Scholar
O'Connor, D. L. 1999. Living with a memory-impaired spouse: recognizing the experience. Canadian Journal on Aging, 18, 211–35.Google Scholar
Perry, J. and O'Connor, D. 2002. Preserving personhood: (re)membering the spouse with dementia. Family Relations, 51, 1, 55–62.CrossRefGoogle Scholar
Phinney, A. 1998. Living with dementia from the patient's perspective. Journal of Gerontological Nursing, 24, 6, 8–15.Google Scholar
Phinney, A. 2002. Fluctuating awareness of the breakdown of the illness narrative in dementia. Dementia: The International Journal of Social Research and Practice, 1, 3, 329–44.Google Scholar
Prager, K. J. 1995. The Psychology of Intimacy. Guilford Press, London.Google Scholar
Quilliam, S. 2001. Staying Together from Crisis to Deeper Commitment. Vermillion, London.Google Scholar
Rheaume, C. and Mitty, E. 2008. Sexuality and intimacy in older adults. Geriatric Nursing, 29, 5, 342–9.Google Scholar
Scheidt, R. J., Vanden Bosch, J. and Kivnick, H. Q. 2012. ‘We're not twenty two anymore.’ Intimacy in long-lived marriages. The Gerontologist, 52, 6, 866–8.Google Scholar
Sims-Gould, J. and O'Connor, D. 2008. Family caregiver support: identifying the role of a provincial organization in the provision of regionally based support. Canadian Journal of Community Mental Health, 26, 2, 107–21.Google Scholar
Smith, J. A. 2004. Reflecting on the development of interpretive phenomenological analysis and its contribution to qualitative research in psychology. Qualitative Research in Psychology, 1, 1, 39–54.Google Scholar
Smith, J., Flowers, P. and Larkin, M. 2009. Interpretive Phenomenological Analysis: Theory, Method and Research. Sage, London.Google Scholar
Smith, J. A. and Osborn, M. 2007. Interpretative phenomenological analysis. In Smith, J.A. (ed), Qualitative Psychology (Second Edition). Sage, London, 53–80.Google Scholar
Soltysiak, B., Gardiner, P. and Skirton, H. 2007. Exploring supportive care for individuals affected by Huntingdon disease and their family caregivers in a community setting. Journal of Clinical Nursing, 17, 7, 226–34.Google Scholar
Stafford, L. and Canary, D. 1991. Maintenance strategies and romantic relationship type, gender and relational characteristics. Journal of Social and Personal Relationships, 8, 2, 217–42.Google Scholar
Thayer, S. 1988. Close encounters. Psychology Today, March, 31–6.Google Scholar
Tranvåg, O., Petersen, K. and Nåden, D. 2013. Dignity-preserving dementia care: a metasynthesis. Nursing Ethics, 20, 8, 861–80.Google Scholar
Willig, C. 2001. Qualitative Research in Psychology: A Practical Guide to Theory and Method. Open University Press, Buckingham, UK.Google Scholar
Wright, L. K. 1991. The impact of Alzheimer's disease on the marital relationship. The Gerontologist, 31, 2, 224–37.Google Scholar
Zarit, J. 2001. A tribute to adaptability: mental illness and dementia in intimate late-life relationships. Generations, 25, 2, 70–4.Google Scholar