The issue of intimacy in long-term care for people with dementia: A nursing perspective
Sexuality and intimacy are often overlooked in long-term care settings, especially for elderly individuals with dementia, despite their significant role in emotional well-being and quality of life. This article explores the ethical, professional, familial, and organizational challenges caregivers face in supporting sexual expression in dementia care. This article also discusses the importance of respecting residents’ autonomy while ensuring their safety and emphasizes the need for proper staff training, family involvement, and clear institutional policies to provide a supportive care environment. This article aims to contribute to the ongoing discourse on improving dementia care practices by offering actionable recommendations that promote intimacy as a core element of person-centered care.
Bauer, M., Fetherstonhaugh, D., Tarzia, L., Nay, R., & Beattie, E. (2014). Supporting residents’ expression of sexuality: The initial construction of a sexuality assessment tool for residential aged care facilities. BMC Geriatrics, 14(1):82. https://doi.org/10.1186/1471-2318-14-82/TABLES/1
Benbow, S.M., & Beeston, D. (2012). Sexuality, aging, and dementia. International Psychogeriatrics, 24(7):1026-1033. https://doi.org/10.1017/S1041610212000257
Bertola, L., Suemoto, C.K., Aliberti, M.J.R., Gonçalves, N.G., De Moraes Rebello Pinho, P.J., Castro-Costa, E., et al. (2023). Prevalence of dementia and cognitive impairment no dementia in a large and diverse nationally representative sample: The ELSI-Brazil study. Journals of Gerontology-Series A Biological Sciences and Medical Sciences, 78(6):1060-1068. https://doi.org/10.1093/GERONA/GLAD025
Cao, Q., Tan, C.C., Xu, W., Hu, H., Cao, X.P., Dong, Q., et al. (2020). The prevalence of dementia: A systematic review and meta-analysis. Journal of Alzheimer’s Disease : JAD, 73(3):1157-1166. https://doi.org/10.3233/JAD-191092
Cook, C., Henrickson, M., & Schouten, V. (2022). Palliative care, intimacy, and sexual expression in the older adult residential care context: “Living until you don’t”. International Journal of Environmental Research and Public Health, 19(20):13080. https://doi.org/10.3390/ijerph192013080
D’cruz, M., Andrade, C., & Rao, T.S.S. (2020). The expression of intimacy and sexuality in persons with dementia. Journal of Psychosexual Health, 2(3-4):215-223. https://doi.org/10.1177/2631831820972859
De Medeiros, K., & Rubinstein, R.L. (2018). Managing sexuality in long-term care: A new focus for person-centered care. Journal of Aging and Social Policy, 30(5):485-503.
Ehrenfeld, M., Bronner, G., Tabak, N., Alpert, R., & Bergman, R. (1999). Sexuality among institutionalized elderly patients with dementia. Nursing Ethics, 6(2):144-149. https://doi.org/10.1177/096973309900600207
Farina, N., Rajagopalan, J., Alladi, S., Ibnidris, A., Ferri, C.P., Knapp, M., et al. (2024). Estimating the number of people living with dementia at different stages of the condition in India: A Delphi process. Dementia (London), 23(3):438-451. https://doi.org/10.1177/14713012231181627
Fitzroy, A.F., Kemp, C.L., & Burgess, E.O. (2022). “I’m not terribly lonely”: Advancing the understanding of intimacy among older adults. Journal of Aging Studies, 61:101005. https://doi.org/10.1016/j.jaging.2022.101005
Garrett, D. (2021). Sexual Intimacy and Ageing. United States: Springer International Publishing, p.65-77. https://doi.org/10.1007/978-3-030-40075-0_6
Gore-Gorszewska, G., & Ševčíková, A. (2023). Trajectories of intimacy in later-life: A qualitative study of Czech and Polish narratives. Culture, Health and Sexuality, 25(10):1324-1339. https://doi.org/10.1080/13691058.2022.2155708
Grigorovich, A., & Kontos, P. (2020). A critical rethinking of sexuality and dementia. The Routledge Handbook of Disability and Sexuality. England, UK: Routledge, p.85-96. https://doi.org/10.4324/9780429489570-7
Grigorovich, A., Kontos, P., Heesters, A., Martin, L.S., Gray, J., & Tamblyn Watts, L. (2022). Dementia and sexuality in long-term care: Incompatible bedfellows? Dementia (London, England), 21(4):1077-1097. https://doi.org/10.1177/14713012211056253
Haesler, E., Bauer, M., & Nay, R. (2007). Staff-family relationships in the care of older people: A report on a systematic review. Research in Nursing and Health, 30(4):385-398. https://doi.org/10.1002/nur.20200
Hatzidimitriadou, E., & Phellas, C. (2020). Sexuality and aging in institutional settings. Ageing Int., 45(2):167182.
Horne, M., Youell, J., Brown, L.J.E., Simpson, P., Dickinson, T., & Brown-Wilson, C. (2021). A scoping review of education and training resources supporting care home staff in facilitating residents’ sexuality, intimacy and relational needs. Age and Ageing, 50(3):758-771. https://doi.org/10.1093/AGEING/AFAB022
Lichtenberg, P.A., & Strzepek, D.M. (1990). Assessments of institutionalized dementia patients’ competencies to participate in intimate relationships. The Gerontologist, 30(1):117-120. https://doi.org/10.1093/geront/30.1.117
Mahieu, L., Anckaert, L., & Gastmans, C. (2017). Intimacy and sexuality in institutionalized dementia care: Clinical-ethical considerations. Health Care Analysis : HCA : Journal of Health Philosophy and Policy, 25(1):52-71. https://doi.org/10.1007/S10728-014-0287-2
Mattiasson, A.C., & Hemberg, M. (1998). Intimacy--meeting needs and respecting privacy in the care of elderly people: What is a good moral attitude on the part of the nurse/carer? Nursing Ethics, 5(6):527-534. https://doi.org/10.1177/096973309800500607
Morris, L.W., Morris, R.G., & Britton, P.G. (1988). The relationship between marital intimacy, perceived strain and depression in spouse caregivers of dementia sufferers. British Journal of Medical Psychology, 61(3):231-236. https://doi.org/10.1111/j.2044-8341.1988.tb02784.x
Naheed, A., Hakim, M., Islam, M.S., Islam, M.B., Tang, E.Y.H., Prodhan, A.A., et al. (2023). Prevalence of dementia among older age people and variation across different sociodemographic characteristics: A cross-sectional study in Bangladesh. The Lancet Regional Health-Southeast Asia, 17:100257. https://doi.org/10.1016/J.LANSEA.2023.100257
Richter, D., Brahler, E., & StrauB, B. (1998). Handbook of Sexuality-related Measures. Thousand Oaks, CA: Sage Publication.
Roach, S.M. (2004). Sexual behaviour of nursing home residents: Staff perceptions and responses. Journal of Advanced Nursing, 48(4):371-379. https://doi.org/10.1111/j.1365-2648.2004.03206.x
Roelofs, T.S., Luijkx, K.G., & Embregts, P.J. (2019). Love, intimacy and sexuality in residential dementia care: A spousal perspective. Dementia (London), 18(3):936-950. https://doi.org/10.1177/1471301217697467
Williams, A. (2001). A literature review on the concept of intimacy in nursing. Journal of Advanced Nursing, 33(5):660-667. https://doi.org/10.1046/j.1365-2648.2001.01701.x
Wiskerke, E., & Manthorpe, J. (2019). Intimacy between care home residents with dementia: Findings from a review of the literature. Dementia (London, England), 18(1):94-107. https://doi.org/10.1177/1471301216659771