Health Care Analysis

, Volume 25, Issue 1, pp 52–71 | Cite as

Intimacy and Sexuality in Institutionalized Dementia Care: Clinical-Ethical Considerations

  • Lieslot MahieuEmail author
  • Luc Anckaert
  • Chris Gastmans
Original Article


Intimacy and sexuality expressed by nursing home residents with dementia remains an ethically sensitive issue for care facilities, nursing staff and family members. Dealing with residents’ sexual longings and behaviour is extremely difficult, putting a burden on the caregivers as well as on the residents themselves and their relatives. The parties in question often do not know how to react when residents express themselves sexually. The overall aim of this article is to provide a number of clinical-ethical considerations addressing the following question: ‘How can expressions of intimacy and sexuality by residents with dementia be dealt with in an ethically responsible way?’ The considerations formulated are based on two cornerstones: (1) the current literature on older peoples’ experiences regarding intimacy and sexuality after the onset of dementia, and (2) an anthropological-ethical framework addressing four fundamental pillars of human existence namely the decentred self, human embodiment, being-in-the-world and being-with-others. The resulting considerations are oriented toward the individual sphere, the partnership sphere, and the institutional sphere. The continuous interaction between these spheres leads to orientations that both empower the residents in question and respect the complex network of relationships that surrounds them.


Intimacy Sexuality Dementia Nursing Ethics Nursing home 



The authors wish to express their most sincere gratitude and recognition to Yvonne Denier for her remarks and suggestions.


  1. 1.
    Abdo, C. H. N. (2013). Sexuality and couple intimacy in dementia. Current Opinion in Psychiatry, 26, 593–598.CrossRefPubMedGoogle Scholar
  2. 2.
    Alagiakrishnan, K., Lim, D., Brahim, A., Wong, A., Wood, A., Senthilselvan, A., et al. (2005). Sexually inappropriate behaviour in demented elderly people. Postgraduate Medical Journal, 81(957), 463–466.CrossRefPubMedPubMedCentralGoogle Scholar
  3. 3.
    Ashworth, A., & Ashworth, P. (2003). The lifeworld as phenomenon and as research heuristic, exemplified by a study of the lifeworld in a person suffering from Alzheimer’s Disease. Journal of Phenomenological Psychology, 34(2), 179–205.CrossRefGoogle Scholar
  4. 4.
    Baikie, E. (2002). The impact of dementia on marital relationships. Sexual and Relationship Therapy, 17(3), 289–299.CrossRefGoogle Scholar
  5. 5.
    Ballard, C. G., Solis, M., Gahir, M., Cullen, P., George, S., Oyebode, F., et al. (1997). Sexual relationships in married dementia sufferers. International Journal of Geriatric Psychiatry, 12, 447–451.CrossRefPubMedGoogle Scholar
  6. 6.
    Bauer, M., Fetherstonhaugh, D., Tarzia, L., Nay, R., Wellman, D., & Beattie, E. (2013a). ‘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 & Sexuality, 4(3), 296–309.CrossRefGoogle Scholar
  7. 7.
    Bauer, M., Nay, R., Tarzia, L., Fetherstonhaugh, D., Wellman, D., & Beattie, E. (2014). ‘We need to know what’s going on’: Views of family members towards the sexual expression of people with dementia in residential aged care. Dementia, 13(5), 571–585. doi: 10.1177/1471301213479785.
  8. 8.
    Bullard-Poe, L., Powell, C., & Mulligan, T. (1994). The importance of intimacy to men living in a nursing home. Archives of Sexual Behavior, 23(2), 231–236.CrossRefPubMedGoogle Scholar
  9. 9.
    Davies, H. D., Zeiss, A. M., & Tinklenberg, J. R. (1992). ‘Til death do us part: Intimacy and sexuality in the marriages of Alzheimer’s patients. Journal of Psychosocial Nursing, 30(11), 5–10.Google Scholar
  10. 10.
    Davies, H. D., Zeiss, A. M., Shea, E. A., & Tinklenberg, J. R. (1998). Sexuality and intimacy in Alzheimer’s patients and their partners. Sexuality and Disability, 16(3), 193–203.CrossRefGoogle Scholar
  11. 11.
    Davies, H. D., Newkirk, L. A., Pitts, C. B., Coughlin, C. A., Sridhar, S. B., Zeiss, L. M., et al. (2010). The impact of dementia and mild memory impairment (MMI) on intimacy and sexuality in spousal relationships. International Psychogeriatrics, 22(4), 618–628.CrossRefPubMedGoogle Scholar
  12. 12.
    Davies, H. D., Sridhar, S. B., Newkirk, L. A., Beaudreau, S. A., & O’Hara, R. (2012). Gender differences in sexual behaviors of AD patients and their relationship to spousal caregiver well-being. Aging & Mental Health, 16(1), 89–101.CrossRefGoogle Scholar
  13. 13.
    de Medeiros, K., Rosenberg, P. B., Baker, A. S., & Onyike, C. U. (2008). Improper sexual behaviors in elderly with dementia living in residential care. Dementia and Geriatric Cognitive Disorders, 26(4), 370–377.CrossRefPubMedGoogle Scholar
  14. 14.
    DeLamater, J. (2012). Sexual expression in later life: A review and synthesis. Journal of Sex Research, 49(2–3), 125–141.CrossRefPubMedGoogle Scholar
  15. 15.
    Denier, Y., & Gastmans, C. (2013). Realizing good care within a context of cross-cultural diversity: An ethical guideline for healthcare organizations in Flanders, Belgium. Social Science and Medicine, 93, 38–46.CrossRefPubMedGoogle Scholar
  16. 16.
    Derouesné, C., Guigot, J., Chermat, V., Winchester, N., & Lacomblez, L. (1996). Sexual behavioral changes in Alzheimer disease. Alzheimer Disease and Associated Disorders, 10(2), 86–92.CrossRefPubMedGoogle Scholar
  17. 17.
    Di Napoli, E. A., Breland, G. L., & Allen, R. S. (2013). Staff knowledge and perceptions of sexuality and dementia of older adults in nursing homes. Journal of Aging and Health, 25(7), 1087–1105.CrossRefPubMedGoogle Scholar
  18. 18.
    Dogan, S., Demir, B., Eker, E., & Karim, S. (2008). Knowledge and attitudes of doctors toward the sexuality of older people in Turkey. International Psychogeriatrics, 20(5), 1019–1027.CrossRefPubMedGoogle Scholar
  19. 19.
    Doll, G. M. (2013). Sexuality in nursing homes: Practice and policy. Journal of Gerontological Nursing, 39(7), 30–37.CrossRefPubMedGoogle Scholar
  20. 20.
    Ehrenfeld, M., Bronner, G., Tabak, N., Alpert, R., & Bergman, R. (1999). Sexuality among institutionalized elderly patients with dementia. Nursing Ethics, 6(2), 144–149.CrossRefPubMedGoogle Scholar
  21. 21.
    Eloniemi-Sulkava, U., Notkola, I.-L., Hämäläinen, K., Rahkonen, T., Viramo, P., Hentinen, M., et al. (2002). Spouse caregivers’ perceptions of influence of dementia on marriage. International Psychogeriatrics, 14(1), 47–58.CrossRefPubMedGoogle Scholar
  22. 22.
    Everett, B. (2007). Ethically managing sexual activity in long-term care. Sexuality and Disability, 25, 21–27.CrossRefGoogle Scholar
  23. 23.
    Everett, B. (2008). Supporting sexual activity in long-term care. Nursing Ethics, 15(1), 87–96.CrossRefPubMedGoogle Scholar
  24. 24.
    Frankowski, C., & Clark, L. J. (2009). Sexuality and intimacy in assisted living: Resident’s perspectives and experiences. Sexuality Research & Social Policy, 6(4), 25–37.CrossRefGoogle Scholar
  25. 25.
    Gibson, M. C., Bol, N., Woodbury, G. M., Beaton, C., & Janke, C. (1999). Comparison of caregivers’, residents’, and community-dwelling spouses’ opinions about expressing sexuality in an institutional setting. Journal of Gerontological Nursing, 25(4), 30–39.CrossRefPubMedGoogle Scholar
  26. 26.
    Gott, M. (2005). Sexuality, sexual health and ageing. Berkshire: Open University Press.Google Scholar
  27. 27.
    Gott, M., & Hinchliff, S. (2003). How important is sex in later life? The views of older people. Social Science and Medicine, 56(8), 1617–1628.CrossRefPubMedGoogle Scholar
  28. 28.
    Gott, M., Hinchliff, S., & Galena, E. (2004). General practitioner attitudes to discussing sexual health issues with older people. Social Science and Medicine, 58(11), 2093–2103.CrossRefPubMedGoogle Scholar
  29. 29.
    Guay, D. R. P. (2008). Inappropriate sexual behaviors in cognitively impaired older individuals. The American Journal of Geriatric Pharmacotherapy, 6(5), 269–288.CrossRefPubMedGoogle Scholar
  30. 30.
    Hajjar, R. R., & Kamel, H. K. (2003). Sexuality in the nursing home, part 1: Attitudes and barriers to sexual expression. Journal of the American Medical Directors Association, 4, 152–156.CrossRefPubMedGoogle Scholar
  31. 31.
    Harris, S. M., Adams, M. S., Zubatsky, M., & White, M. (2011). A caregiver perspective of how Alzheimer’s disease and related disorders affect couple intimacy. Aging & Mental Health, 15(8), 950–960.CrossRefGoogle Scholar
  32. 32.
    Hayes, J., Boylstein, C., & Zimmerman, M. K. (2009). Living and loving with dementia: Negotiating spousal and caregiver identity through narrative. Journal of Aging Studies, 23, 48–59.CrossRefGoogle Scholar
  33. 33.
    Hayward, L. E., Robertson, N., & Knight, C. (2013). Inappropriate sexual behaviour in dementia: An exploration of staff experiences. Dementia, 12(4), 463–480.CrossRefPubMedGoogle Scholar
  34. 34.
    Heidegger, M. (2001). Sein und Zeit. Tübingen: Max Niemeyer Verlag.Google Scholar
  35. 35.
    Hennings, J., Froggatt, K., & Payne, S. (2013). Spouse caregivers of people with advanced dmentia in nursing homes: A longitudinal narrative study. Palliative Medicine, 27(7), 683–691.CrossRefPubMedGoogle Scholar
  36. 36.
    Higgins, A., Barker, P., & Begley, C. M. (2004). Hypersexuality and dementia: Dealing with inappropriate sexual expression. British Journal of Nursing, 13(22), 1330–1334.CrossRefPubMedGoogle Scholar
  37. 37.
    Hinchliff, S., & Gott, M. (2008). Challenging social myths and stereotypes of women and aging: Heterosexual women talk about sex. Journal of Women & Aging, 20(1–2), 65–81.CrossRefGoogle Scholar
  38. 38.
    Hodson, D. S., & Skeen, P. (1994). Sexuality and aging: The hammerlock of myths. Journal of Applied Gerontology, 13(3), 219–235.CrossRefGoogle Scholar
  39. 39.
    Joller, P., Gupta, N., Seitz, D. P., Frank, C., Gibson, M., & Gill, S. S. (2013). Approach to inappropriate sexual behaviour in people with dementia. Canadian Family Physician, 59(3), 255–260.PubMedPubMedCentralGoogle Scholar
  40. 40.
    Kamel, H. K., & Hajjar, R. R. (2004). Sexuality in the nursing home, part 2: Managing abnormal behavior–Legal and ethical issues. Journal of the American Medical Directors Association, 5, S48–S52.CrossRefPubMedGoogle Scholar
  41. 41.
    Kaplan, L. (2001). A couplehood typology for spouses of institutionalized persons with Alzheimer’s disease: Perceptions of “We”-”I”. Family Relations, 50(1), 87–98.CrossRefGoogle Scholar
  42. 42.
    Kontula, O., & Haavio-Mannila, E. (2009). The impact of aging on human sexual activity and sexual desire. Journal of Sex Research, 46(1), 46–56.CrossRefPubMedGoogle Scholar
  43. 43.
    Kuhn, D. R., Greiner, D., & Arseneau, L. (1998). Addressing hypersexuality in Alzheimer’s disease. Journal of Gerontological Nursing, 24(4), 44–50.CrossRefPubMedGoogle Scholar
  44. 44.
    Kuppuswamy, M., Davies, H. D., Spira, A. P., Zeis, A. M., & Tinklenberg, J. R. (2007). Sexuality and intimacy between individuals with Alzheimer’s disease and their partners: Caregivers describe their experiences. Clinical Gerontologist, 30(3), 75–81.CrossRefGoogle Scholar
  45. 45.
    Levinas, E. (1961). Totalité et infini. Essai sur l’exteriorité. The Hague: Martinus Nijhoff.Google Scholar
  46. 46.
    Levinas, E. (1977). Du sacré au saint. Cinq nouvelles lectures talmudiques. Paris: Minuit.Google Scholar
  47. 47.
    Lindau, S. T., Schumm, L. P., Laumann, E. O., Levinson, W., O’Muircheartaigh, C. A., & Waite, L. J. (2007). A study of sexuality and health among older adults in the United States. The New England journal of medicine, 357(8), 762–774.CrossRefPubMedPubMedCentralGoogle Scholar
  48. 48.
    Lindsay, R. J. (2010). The need for more specific legislation in sexual consent capacity assessments for nursing home residents. Journal of Legal Medicine, 31(3), 303–323.CrossRefPubMedGoogle Scholar
  49. 49.
    Mahieu, L., & Gastmans, C. (2012). Sexuality in institutionalized elderly persons: A systematic review of argument-based ethics literature. International Psychogeriatrics, 24(3), 346–357.CrossRefPubMedGoogle Scholar
  50. 50.
    Mahieu, L., Van Elssen, K., & Gastmans, C. (2011). Nurses’ perceptions of sexuality in institutionalized elderly: A literature review. International Journal of Nursing Studies, 48(9), 1140–1154.CrossRefPubMedGoogle Scholar
  51. 51.
    Mahieu, L., Anckaert, L., & Gastmans, C. (2014). Eternal sunshine of the spotless mind? An anthropological-ethical framework for understanding and dealing with sexuality in dementia care. Medicine, Health Care and Philosophy, 17(3), 377–387.CrossRefGoogle Scholar
  52. 52.
    McAuliffe, L., Bauer, M., & Nay, R. (2007). Barriers to the expression of sexuality in the older person: The role of the health professional. International Journal of Older People Nursing, 2(1), 69–75.CrossRefPubMedGoogle Scholar
  53. 53.
    Merleau-Ponty, M. (2002). Phenomenology of perception. New York, NY: Routledge.Google Scholar
  54. 54.
    Metzger, E. D., & Gillick, M. R. (2002). Ethics corner: Cases from the Hebrew rehabilitation center for aged. Sex in the facility. Journal of the American Medical Directors Association, 3, 390–392.CrossRefPubMedGoogle Scholar
  55. 55.
    Mroczek, B., Kurpas, D., Gronowska, M., Kotwas, A., & Karakiewicz, B. (2013). Psychosexual needs and sexual behaviors of nursing care home residents. Archives of Gerontology and Geriatrics, 57(1), 32–38.CrossRefPubMedGoogle Scholar
  56. 56.
    Mulligan, T., & Palguta, R. F. (1991). Sexual interest, activity, and satisfaction among male nursing home residents. Archives of Sexual Behavior, 20(2), 199–204.CrossRefPubMedGoogle Scholar
  57. 57.
    Neville, S., & Henrickson, M. (2010). ‘Lavender retirement’: A questionnaire survey of lesbian, guy and bisexual people’s accommodation plans for old age. International Journal of Nursing Practice, 16, 586–594.CrossRefPubMedGoogle Scholar
  58. 58.
    Nys, T. (2013). The wreckage of our flesh: Dementia, autonomy and personhood. In Y. Denier, C. Gastmans, & A. Vandevelde (Eds.), Justice, luck & responsibility in health care: Philosophical background and ethical implications for end-of-life care (pp. 189–203). Dordrecht: Springer.CrossRefGoogle Scholar
  59. 59.
    Philo, S. W., Richie, M. F., & Kaas, M. J. (1996). Inappropriate sexual behavior. Journal of Gerontological Nursing, 22(11), 17–22.CrossRefPubMedGoogle Scholar
  60. 60.
    Phinney, A., & Chesla, C. A. (2003). The lived body in dementia. Journal of Aging Studies, 17(3), 283–299.CrossRefGoogle Scholar
  61. 61.
    Ricoeur, P. (1991). Narrative identity. Philosophy Today, 35(1), 73–81.CrossRefGoogle Scholar
  62. 62.
    Roach, S. M. (2004). Sexual behaviour of nursing home residents: Staff perceptions and responses. Journal of Advanced Nursing, 48(4), 371–379.CrossRefPubMedGoogle Scholar
  63. 63.
    Rosen, T., Lachs, M. S., & Pillemer, K. (2010). Sexual aggression between residents in nursing homes: Literature synthesis of an underrecognized problem. Journal of the American Geriatrics Society, 58(10), 1070–1079.CrossRefGoogle Scholar
  64. 64.
    Simonelli, C., Tripodi, F., Rossi, R., Fabrizi, A., Lembo, D., Cosmi, V., et al. (2008). The influence of caregiver burden on sexual intimacy and marital satisfaction in couples with an Alzheimer spouse. International Journal of Clinical Practice, 62(1), 47–52.CrossRefPubMedGoogle Scholar
  65. 65.
    Stubbs, B. (2011). Displays of inappropriate sexual behaviour by patients with progressive cognitive impairment: The forgotten form of challenging behaviour? Journal of Psychiatric and Mental Health Nursing, 18(7), 602–607.CrossRefPubMedGoogle Scholar
  66. 66.
    Tabak, N., & Shemesh-Kigli, R. (2006). Sexuality and Alzheimer’s disease: Can the two go together? Nursing Forum, 41(4), 158–166.CrossRefPubMedGoogle Scholar
  67. 67.
    Tarzia, L., Fetherstonhaugh, D., & Bauer, M. (2012). Dementia, sexuality and consent in residential aged care facilities. Journal of Medical Ethics, 38, 609–613.CrossRefPubMedGoogle Scholar
  68. 68.
    Tsai, S.-J., Hwang, J.-P., Yang, C.-H., Liu, K.-M., & Lirng, J.-F. (1999). Inappropriate sexual behaviors in dementia: A preliminary report. Alzheimer Disease and Associated Disorders, 13(1), 60–62.CrossRefPubMedGoogle Scholar
  69. 69.
    Tucker, I. (2010). Management of inappropriate sexual behaviors in dementia: A literature review. International Psychogeriatrics, 22(5), 683–692.CrossRefPubMedGoogle Scholar
  70. 70.
    Vanlaere, L., & Gastmans, C. (2007). Ethics in nursing education: Learning to reflect on care practices. Nursing Ethics, 14(6), 758–766.CrossRefPubMedGoogle Scholar
  71. 71.
    Villar, F., Celdrán, M., Fabà, J., & Serrat, R. (2014). Staff attitudes towards sexual relationships among institutionalized people with dementia: Does an extreme cautionary stance predominate? International Psychogeriatrics, 26(3), 403–412.CrossRefPubMedGoogle Scholar
  72. 72.
    Visker, R. (2005). The strange(r) within me. Ethical Perspectives, 12(4), 425–441.CrossRefGoogle Scholar
  73. 73.
    Walker, B. L., & Ephross, P. H. (1999). Knowledge and attitudes toward sexuality of a group of elderly. Journal of Gerontological Social Work, 31(1–2), 85–107.CrossRefGoogle Scholar
  74. 74.
    Ward, R., Vass, A. A., Aggarwal, N., Garfield, C., & Cybyk, B. (2005). A kiss is still a kiss? The construction of sexuality in dementia care. Dementia, 4(1), 49–72.CrossRefGoogle Scholar
  75. 75.
    White, C. B., & Catania, J. A. (1982). Psychoeducational intervention for sexuality with the aged, family members of the aged, and people who work with the aged. International Journal of Aging and Human Development, 15(2), 121–138.CrossRefPubMedGoogle Scholar
  76. 76.
    Zeiss, A. M., & Kasl-Godley, J. (2001). Sexuality in older adults’ relationships. Generations, 25, 18–25.Google Scholar
  77. 77.
    Zeiss, A. M., Davies, H. D., & Tinklenberg, J. R. (1996). An observational study of sexual behavior in demented male patients. Journal of Gerontology: Medical Sciences, 51A(6), M325–M329.Google Scholar

Copyright information

© Springer Science+Business Media New York 2014

Authors and Affiliations

  1. 1.Centre for Biomedical Ethics and LawKU LeuvenLouvainBelgium
  2. 2.Centre for Ethics, Social and Political PhilosophyKU LeuvenLouvainBelgium

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