Hostname: page-component-7b9c58cd5d-hxdxx Total loading time: 0 Render date: 2025-03-15T17:55:25.010Z Has data issue: false hasContentIssue false
  • English
  • Français

The impact of younger-onset dementia on relationships, intimacy, and sexuality in midlife couples: a systematic review

Published online by Cambridge University Press:  20 September 2017

Kristen Holdsworth  and
Marita McCabe
Kristen Holdsworth*
Affiliation:
Institute for Health and Ageing, Australian Catholic University, Melbourne, Australia
Marita McCabe
Affiliation:
Institute for Health and Ageing, Australian Catholic University, Melbourne, Australia
*
Correspondence should be addressed to: Kristen Holdsworth, Institute for Health and Ageing, Australian Catholic University, Level 6, 215 Spring Street, Melbourne, VIC 3000, Australia. Phone: 03 9230 8170. E-mail: kristen.holdsworth@myacu.edu.au.
Get access

Abstract

Background:

The impact of dementia on relationships, intimacy, and sexuality has been documented in later life couples. However, little is known about the experiences of couples living with younger-onset dementia. The aim of this systematic review was to analyze the literature describing the impact of younger-onset dementia on relationships, intimacy, and sexuality in midlife couples.

Methods:

A systematic literature search was conducted in July 2016 for relevant research papers. Five databases were searched: Web of Science, PsycINFO, MedLine, Scopus, and CINAHL. A quality appraisal checklist was used to assess the methodological quality of included studies.

Results:

Eleven studies were identified that explored relationships, intimacy, and sexuality from the perspective of the spouse, the person with dementia or both members of the dyad. Several themes were identified including shifts in roles and responsibilities, declines in relationship quality, changes in identity, and self-esteem, increasing social isolation and loneliness, shifts in intimacy, and changes in sexual activity.

Conclusions:

Many of the reviewed studies were subject to a range of methodological issues including small sample sizes, small number of studies, and a reliance on the perspective of only one member of the dyad. Future research should follow couples longitudinally to gain a clearer picture of the impact of younger-onset dementia on the couple relationship over time. The inclusion of people living with younger-onset dementia in research will assist in developing a deeper understanding of the experiences of the individual and dyad.

Keywords

younger-onset dementiaearly-onset dementiacouplesspousesrelationshipintimacysexual activity
Type
Review Article
Information
International Psychogeriatrics , Volume 30 , Issue 1 , January 2018 , pp. 15 - 29
Copyright
Copyright © International Psychogeriatric Association 2017 

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

Alzheimer's Australia. (2007). Exploring the Needs of Younger People with Dementia in Australia. Available at: https://www.fightdementia.org.au/files/20101027-Nat-YOD-Exploring-needs-Australia.pdf.Google Scholar
Arai, A., Matsumoto, T., Ikeda, M. and Arai, Y. (2007). Do family caregivers perceive more difficulty when they look after patients with early onset dementia compared to those with late onset dementia?. International Journal of Geriatric Psychiatry, 22, 1255–1261. doi 10.1002/gps.1935 Google Scholar
Ascher, E. A., Sturm, V. E., Seider, B. H., Holley, S. R., Miller, B. L. and Levenson, R. W. (2010). Relationship satisfaction and emotional language in frontotemporal dementia and Alzheimer disease patients and spousal caregivers. Alzheimer Disease and Associated Disorders, 24, 49–55. doi: 10.1097/WAD.0b013e3181bd66a3 CrossRefGoogle ScholarPubMed
Bakker, C., de Vugt, M., Vernooij-Dassen, M., van Vliet, D., Verhey, F. and Koopmans, R. (2010). Needs in early onset dementia: a qualitative case from the NeedYD Study. American Journal of Alzheimer's Disease and Other Dementias, 25, 634–640. doi: 10.1177/1533317510385811 CrossRefGoogle ScholarPubMed
Beattie, A. M., Daker-White, G., Gilliard, J. and Means, R. (2002). Younger people in dementia care: a review of service needs, service provision and models of good practice. Aging and Mental Health, 6, 205–212. doi: 10.1080/13607860220142396 CrossRefGoogle Scholar
Beattie, A., Daker-White, G., Gilliard, J. and Means, R. (2004). ‘How can they tell?’ A qualitative study of the views of younger people about their dementia and dementia care services. Health and Social Care in the Community, 12, 359–368. doi: 10.1111/j.1365-2524.2004.00505.x Google Scholar
Bergman, M., Graff, C., Eriksdotter, M., Fugl-Meyer, K. and Schuster, M. (2016). The meaning of living close to a person with Alzheimer disease. Medicine, Health Care and Philosophy, 19, 341–349. doi: 10.1007/s11019-016-9696-3 Google Scholar
Bookwala, J. (2009). Couples in middle age. In Reis, H. and Spechner, S. (eds.), Encyclopedia of Human Relationships, 1st edn, (pp. 340–343). Thousand Oaks, CA: SAGE Publications. doi: 10.4135/9781412958479.n113 Google Scholar
Daniels, K., Lamson, A. and Hodgson, J. (2007). An exploration of the marital relationship and Alzheimer's disease: one couple's story. Families, Systems and Health, 25, 162–177. doi: 10.1037/1091-7527.25.2.162 Google Scholar
Davies, H. et al. (2010). The impact of dementia and mild memory impairment (MMI) on intimacy and sexuality in spousal relationships. International Psychogeriatrics, 22, 618–628. doi: 10.1017/S1041610210000177 Google Scholar
Dourado, M., Finamore, C., Barroso, M., Santos, R. and Laks, J. (2010). Sexual satisfaction in dementia: perspectives of patients and spouses. Sexuality and Disability, 28, 195–203. doi: 10.1007/s11195-010-9165-5 Google Scholar
Ducharme, F., Kergoat, M., Antoine, P., Pasquier, F. and Coulombe, R. (2013). The unique experience of spouses in early-onset dementia. American Journal of Alzheimer's Disease and Other Dementias, 28, 634–641. doi: 10.1177/1533317513494443 CrossRefGoogle ScholarPubMed
Eloniemi-Sulkava, U. et al. (2002). Spouse caregivers' perceptions of influence of dementia on marriage. International Psychogeriatrics, 14, 47–58.Google Scholar
Flynn, R. and Mulcahy, H. (2013). Early-onset dementia: the impact on family care-givers. British Journal of Community Nursing, 18, 598–606. doi: 10.12968/bjcn.2013.18.12.598 Google Scholar
Hain, D., Thouhy, T., Compton Sparks, D. and Engstrom, G. (2014). Using narratives of individuals and couples living with early sage dementia to guide practice. Journal of Nursing Practice Applications and Reviews of Research, 4, 82–93. doi: 10.13178/jnparr.2014.0402.0408 CrossRefGoogle Scholar
Harris, P. (2004). The perspective of younger people with dementia. Social Work in Mental Health, 2, 17–36. doi 10.1300/j200v02n04_02 Google Scholar
Harris, P. and Keady, J. (2009). Selfhood in younger onset dementia: transitions and testimonies. Aging and Mental Health, 13, 437–444. doi: 10.1080/13607860802534609 Google Scholar
Hayes, J., Boylstein, C. and Zimmerman, M. (2009). Living and loving with dementia: negotiating spousal and caregiver identity through narrative. Journal of Aging Studies, 23, 48–59. doi: 10.1016/j.jaging.2007.09.002 Google Scholar
Jeffries, K. and Agrawal, N. (2009). Early-onset dementia. Advances in Psychiatric Treatment, 15, 380–388. doi.10.1192/apt.bp.107.004572 Google Scholar
Joanna Briggs Institute. (2016). Joanna Briggs Institute Reviewers' Manual: 2016 edition. Australia: The Joanna Briggs Institute.Google Scholar
Kimura, N., Maffioletti, V., Santos, R., Baptista, M. and Dourado, M. (2015). Psychosocial impact of early onset dementia among caregivers. Trends in Psychiatry and Psychotherapy, 37, 213–219. doi: 10.1590/2237-6089-2015-0038 Google Scholar
Lockeridge, S. and Simpson, J. (2012). The experience of caring for a partner with young onset dementia: how younger carers cope. Dementia, 12, 635–651. doi: 10.1177/1471301212440873 Google Scholar
Lodge, A. C. and Umberson, D. (2012). All shook up: sexuality of mid- to later life married couples. Journal of Marriage and Family, 74, 428–443. doi: 10.1111/j.1741-3737.2012.00969.x Google Scholar
Massimo, L., Evans, L. and Benner, P. (2013). Caring for loved ones with frontotemporal degeneration: the lived experiences of spouses. Geriatric Nursing, 34, 302–306. doi: 10.1016/j.gerinurse.2013.05.001 Google Scholar
McMurtray, A., Clark, D., Christine, D. and Mendez, M. (2006). Early-onset dementia: frequency and causes compared to late-onset dementia. Dementia and Geriatric Cognitive Disorders, 21, 59–64. https://doi.org/10.1159/000089546 Google Scholar
Mendez, M. (2006). The accurate diagnosis of early-onset dementia. International Journal of Psychiatry in Medicine, 36, 401–412. https://doi.org/10.2190/Q6J4-R143-P630-KW41 Google Scholar
Merrick, K., Camic, P. M. and O'Shaughnessy, M. (2016). Couples constructing their experiences of dementia: a relational perspective. Dementia, 15, 34–50. doi: 10.1177/1471301213513029 Google Scholar
Novek, S., Shooshtari, S. and Menec, V. (2015). Comparing the overall health, stress, and characteristics of canadians with early-onset and late-onset dementia. Journal of Aging and Health, 28, 1016–1037. doi: 10.1177/0898264315615575 Google Scholar
O'Shaughnessy, M., Lee, K. and Lintern, T. (2010). Changes in the couple relationship in dementia care: spouse carers’ experiences. Dementia, 9, 237–258. doi: 10.1177/1471301209354021 Google Scholar
Quinn, C., Clare, L. and Woods, R. T. (2015). Balancing needs: the role of motivations, meanings and relationship dynamics in the experience of informal caregivers of people with dementia. Dementia, 14, 220–237. doi: 10.1177/1471301213495863 Google Scholar
Roach, P., Drummond, N. and Keady, J. (2016). ‘Nobody would say that it is Alzheimer's or dementia at this age’: family adjustment following a diagnosis of early-onset dementia. Journal of Aging Studies, 36, 26–32. https://doi.org/10.1016/j.jaging.2015.12.001 CrossRefGoogle ScholarPubMed
Robinson, L., Clare, L. and Evans, K. (2005). Making sense of dementia and adjusting to loss: psychological reactions to a diagnosis of dementia in couples. Aging and Mental Health, 9, 337–347. doi: 10.1080/13607860500114555 Google Scholar
Sampson, E. L., Warren, J. D. and Rossor, M. N. (2004). Young onset dementia. Postgraduate Medical Journal, 80, 125–139. doi:10.1136/pgmj.2003.011171 CrossRefGoogle ScholarPubMed
Sansoni, J., Duncan, C., Grootemaat, P., Samsa, P., Capell, J. and Westera, A. (2014). Younger onset dementia: a literature review. Centre for Health Service Development, University of Wollongong. Available at: https://ahsri.uow.edu.au/content/groups/public/@web/@chsd/documents/doc/uow176494.pdf Google Scholar
Taylor, A. and Gosney, M. A. (2011). Sexuality in older age: essential considerations for healthcare professionals. Age and Ageing, 40, 538–543. doi: 10.1093/ageing/afr049 CrossRefGoogle ScholarPubMed
van Vliet, D. et al. (2011). Caregivers' perspectives on the pre-diagnostic period in early onset dementia: a long and winding road. International Psychogeriatrics, 23, 1393–1404. doi: 10.1017/s1041610211001013 CrossRefGoogle ScholarPubMed
Wawrziczny, E., Antoine, P., Ducharme, F., Kergoat, M. and Pasquier, F. (2016). Couples’ experiences with early-onset dementia: an interpretative phenomenological analysis of dyadic dynamics. Dementia, 15, 1082–1099. doi: 10.1177/1471301214554720 Google Scholar
Werner, P., Stein-Shvachman, I. and Korczyn, A. D. (2009). Early onset dementia: clinical and social aspects. International Psychogeriatrics, 21, 631–636. doi: 10.1017/S1041610209009223 Google Scholar
Withall, A., Draper, B., Seeher, K. and Brodaty, H. (2014). The prevalence and causes of younger onset dementia in Eastern Sydney, Australia. International Psychogeriatrics, 26, 1955–1965. doi: 10.1017/S1041610214001835 Google Scholar
World Health Organization. (2012). Dementia: a public health priority. Geneva, Sweden: World Health Organization. Retrieved from http://apps.who.int/iris/bitstream/10665/75263/1/9789241564458_eng.pdf?ua=1 Google Scholar
Wright, L. K. (1998). Affection and sexuality in the presence of Alzheimer's disease: a longitudinal study. Sexuality and Disability, 16, 167–179. doi: 10.1023/A:1023042924997 Google Scholar