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Chapter 6 - Living with Dementia

Relationships, Intimacy, Sexuality and Care

Published online by Cambridge University Press:  26 May 2022

By
Frauke Claes ,
Nelle Frederix  and
Paul Enzlin
Edited by
Mathieu Vandenbulcke ,
Rose-Marie Dröes  and
Erik Schokkaert
Mathieu Vandenbulcke
Affiliation:
KU Leuven, Belgium
Rose-Marie Dröes
Affiliation:
Amsterdam University Medical Centre
Erik Schokkaert
Affiliation:
KU Leuven, Belgium
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Summary

Couples confronted with a diagnosis of dementia face many relational changes, including changes in their intimate and sexual lives. Dementia often requires a renegotiation of the roles between partners and creativity to find new ways to keep their sexuality alive. Although family members and healthcare providers are often concerned about (inappropriate and risky) sexual behaviour of persons with dementia, patients (and partners) may experience sexuality as a human need rather than a problem. This chapter covers the impact of dementia on partner relationships from a patient’s and partner’s perspective and describes different stages of change in their sexual relation during both the phase of home care as well as after admission to a residential care facility. After focussing on (the management of) inappropriate sexual behaviour from the perspective of the family and healthcare system, the chapter elaborates on ethical issues including sexual consent, capacity, privacy and sexual rights. The chapter ends with a plea for a better understanding of the relational and sexual consequences of dementia that enables to provide tailored care to persons with dementia, their partners and their broader network.

Keywords

early-onset dementialate-onset dementiapartner relationshipintimacysexualityhome careresidential caresexual consentsexual rightsprivacy
Type
Chapter
Information
Dementia and Society , pp. 105 - 128
Publisher: Cambridge University Press
Print publication year: 2022

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References

Benbow, SM, Tsaroucha, A, Sharman, V. ‘It is not the same’: Relationships and dementia. Educ Gerontol 2019; 45(7): 454–68.Google Scholar
De Boer, ME, Hertogh, CM, Dröes, R, Riphagen, II, Jonker, C, Eefsting, JA. Suffering from dementia: The patient’s perspective. A review of the literature. Int Psychogeriatr 2007; 19(6): 1021–39.Google Scholar
Braun, M, Scholz, U, Bailey, B, Perren, S, Hornung, R, Martin, M. Dementia caregiving in spousal relationships: A dyadic perspective. Aging Ment Health 2009; 13(3): 426–36.Google Scholar
Ablitt, A, Jones, GV, Muers, J. Living with dementia: A systematic review of the influence of relationship factors. Aging Ment Health 2009; 13(4): 497–511.Google Scholar
Pozzebon, M, Douglas, J, Ames, D. Spouses’ experience of living with a partner diagnosed with a dementia: A synthesis of the qualitative research. Int Psychogeriatr 2016; 28(4): 537–56.Google Scholar
Youell, J, Callaghan, JE, Buchanan, K. ‘I don’t know if you want to know this’: Carers’ understandings of intimacy in long-term relationships when one partner has dementia. Ageing Soc 2016; 36: 946–67.Google Scholar
Sanders, S, Power, J. Roles, responsibilities, and relationships among older husbands caring for wives with progressive dementia and other chronic conditions. Health Soc Work 2009; 34(1): 41–51.Google Scholar
Meuser, TM, Marwit, SJ. A comprehensive, stage-sensitive model of grief in dementia caregiving. Gerontologist 2001; 41(5): 658–70.Google Scholar
Evans, D, Lee, E. Impact of dementia on marriage: A qualitative systematic review. Dementia 2014; 13(3): 330–49.Google Scholar
Lindauer, A, Harvath, TA. Pre-death grief in the context of dementia caregiving: A concept analysis. J Adv Nurs 2014; 70: 2196–2207.CrossRefGoogle ScholarPubMed
Herbert, R, Schulz, R, Copeland, VC, Arnold, RM. Preparing family caregivers for death and bereavement. Insights from caregivers of terminally ill patients. J Pain Symptom Manage 2009; 37(1): 3–12.Google Scholar
Colquhoun, A, Moses, J, Offord, R. Experiences of loss and relationship quality in couples living with dementia. Dementia 2019; 18(6): 2158–72.CrossRefGoogle ScholarPubMed
Eloniemi-Sulkava, U, Notkola, IL, Hämäläinen, K, Rahkonen, T, Viramo, P, Hentinen, M, et al. Spouse caregivers’ perceptions of influence of dementia on marriage. Int Psychogeriatr 2002; 14(1): 47–58.CrossRefGoogle ScholarPubMed
Wadham, O, Simpson, J, Rust, J, Murray, C. Couples’ shared experiences of dementia: A meta-synthesis of the impact upon relationships and couplehood. Aging Ment Health 2016; 20(5): 463–73.CrossRefGoogle ScholarPubMed
Davies, HD, Newkirk, LA, Pitts, CB, Coughlin, CA, Sridhar, SB, Zeiss, LM, Zeiss, AM. The impact of dementia and mild memory impairment (MMI) on intimacy and sexuality in spousal relationships. Int Psychogeriatr 2010; 22(4): 618–28.Google Scholar
Wolverson, E, Clarke, C, Moniz-Cook, E. Living positively with dementia: A systematic review and synthesis of the qualitative literature. Aging Ment Health 2016; 20: 676–99.Google Scholar
Enright, J, O’Connell, ME, Branger, C, Kirk, A, Morgan, D. Identity, relationship quality, and subjective burden in caregivers of persons with dementia. Dementia 2018; 0: 1–17.Google Scholar
Rousseaux, M, Sève, A, Vallet, M, Pasquier, F, Mackowiak-Cordoliani, MA. An analysis of communication in conversation in patients with dementia. Neuropsychologia 2010; 48(13): 3884–90.Google Scholar
Holdsworth, K, McCabe, M. The impact of younger-onset dementia on relationships, intimacy, and sexuality in midlife couples: A systematic review. Int Psychogeriatr 2018a; 30(1): 15–29.Google Scholar
Holdsworth, K, McCabe, M. The impact of dementia on relationships, intimacy, and sexuality in later life couples: An integrative qualitative analysis of existing literature. Clin Gerontol 2018b; 41(1): 3–19.Google Scholar
Mitrani, VB, Czaja, SJ. Family-based therapy for dementia caregivers: Clinical observations. Aging Ment Health 2008; 4(3): 200–9.Google Scholar
Hartmans, C, Comijs, H, Jonker, C. Cognitive functioning and its influence on sexual behavior in normal aging and dementia. Int J Geriatr Psychiatry 2014; 29(5), 441–6.CrossRefGoogle ScholarPubMed
Bauer, M, Nay, R, Fetherstonhaugh, D, Wellman, D, Beattie, E. We need to know what’s going on: Views of family members toward the sexual expressions of people with dementia in residential aged care. Dementia 2013; 13(5): 571–85.Google ScholarPubMed
Scherrer, KS. Images of sexuality and aging in gerontological literature. Sex Res Soc Policy 2009; 6: 5–12.Google Scholar
Traeen, B, Hald, G, Graham, C, Enzlin, P, Janssen, E, Lundin Kvalem, I, et al. Sexuality in older adults (65+) – an overview of the literature, part 1: Sexual function and its difficulties. Int J Sex Health 2017; 29(1): 1–10.CrossRefGoogle Scholar
Traeen, B, Carvalheira, A, Lundin Kvalem, I, Štulhofer, A, Janssen, E, Graham, C, et al. Sexuality in older adults (65+) – an overview of the recent literature, part 2: Body image and sexual satisfaction. Int J Sex Health 2017; 29(1): 11–21.Google Scholar
Benbow, SM, Beeston, D. Sexuality, aging, and dementia. Int Psychogeriatr 2012; 24(7): 1026–33.CrossRefGoogle ScholarPubMed
Gott, M. Sexuality, Sexual Health and Ageing. Berkshire, Open University Press, 2005; 176.Google Scholar
Youell, J, Callaghan, J. An investigation into the changes in intimacy in long-term relationships when one partner has dementia. Ageing Soc 2016; 35(5): 946–67.Google Scholar
Sandberg, LJ. Too late for love? Sexuality and intimacy in heterosexual couples living with an Alzheimer’s disease diagnosis. Sex Relatsh Ther 2020; 1–22.Google Scholar
Alzheimer’s Society. How can dementia affect a person’s sexual behaviour? (Internet). UK: Alzheimer’s Society; (date unknown). Consulted on 1 April 2021, available from www.alzheimers.org.uk/get-support/daily-living/how-dementia-affects-sexual-behaviour.Google Scholar
Baikie, E. The impact of dementia on marital relationships. Sex and Relatsh Ther 2002; 17(3): 289–99.Google Scholar
Rheaume, C, Mitty, E. Sexuality and intimacy in older adults. Geriatr Nurs 2008; 29(5): 342–9.CrossRefGoogle ScholarPubMed
Harris, PB. Intimacy, sexuality, and early-stage dementia. The changing marital relationship. Alzheimer’s Care Today 2009; 10(2): 63–77.Google Scholar
Ballard, CG, Solis, M, Gahir, M, Cullen, P, Georges, S, Oyebode, R, Wilcock, G. Sexual relationships in married dementia sufferers. Int J Geriat Psychiatry 1997; 12: 447–51.3.0.CO;2-5>CrossRefGoogle ScholarPubMed
Nogueira, MM, Neto, JP, Sousa, MF, Santos, RL, Lacerda, IB, Baptista, MA, Dourado, MC. Perception of change in sexual activity in Alzheimer’s disease: Views of people with dementia and their spouse-caregivers. Int Psychogeriatr 2017; 29(2): 185–93.CrossRefGoogle ScholarPubMed
Tsatali, M, Tsolaki, M. Sexual function in normal elders, MCI and patients with mild dementia. Sex Disabil 2014; 32(2): 205–19.CrossRefGoogle Scholar
Abdo, CH. Sexuality and couple intimacy in dementia. Curr Opin Psychiatry 2013; 26(6): 593–8.Google Scholar
Roelofs, TS, Luijkx, KG, Embregts, PJ. Intimacy and sexuality of nursing home residents with dementia: A systematic review. Int Psychogeriatr 2015; 27(3): 367–84.CrossRefGoogle ScholarPubMed
Simpson, P, Wilson, CB, Brown, LJ, Dickinson, T, Horne, M. ‘We’ve had our sex life way back’: Older care home residents, sexuality and intimacy.Ageing Soc 2018; 38: 1478–1501.CrossRefGoogle Scholar
Tabak, N, Shemesh-Kigli, R. Sexuality and Alzheimer’s disease: Can the two go together? Nurs Forum 2016; 41(4): 158–66.Google Scholar
Simonelli, C, Tripodi, F, Rossi, R, Fabrizi, A, Lembo, D, Cosmi, V, Pierleoni, L. The influence of caregiver burden on sexual intimacy and marital satisfaction in couples with an Alzheimer spouse. Int J Clin Pract 2008; 62(1): 47–52.CrossRefGoogle ScholarPubMed
Dourado, M, Finamore, C, Barroso, MF, Santos, R, Laks, J. Sexual satisfaction in dementia: Perspectives of patients and spouses. Sex Disabil 2010; 28: 195–203.Google Scholar
Hayes, J, Boylstein, C, Zimmerman, MK. Living and loving with dementia: Negotiating spousal and caregiver identity through narrative. J Aging Stud 2009; 23(1): 48–59.CrossRefGoogle Scholar
Sanders, S, Osterhaus, J. Birth of a stranger: Intimacy, sexuality and dementia. In DeFord, B, Gilbert, R, eds. Living, Loving, and Loss: The Interplay of Intimacy, Sexuality and Grief. Amityville, NY, Baywood, 2013; 121–49.Google Scholar
Nilsson, E. Facing dementia as a we: Investigating couples’ challenges and communicative strategies for managing dementia (PhD dissertation). Linkoping University Press, Linkoping University, 2018.Google Scholar
Shavit, O, Ben-Ze’ev, AA, Doron, I. Love between couples living with Alzheimer’s disease: Narratives of spouse care-givers. Ageing Soc 2017; 39(4): 488–517.CrossRefGoogle Scholar
Donaldson, C, Tarrier, N, Burns, A. Determinants of carer stress in Alzheimer’s disease. Int J Geriatr Psychiatry 1998; 13: 248–56.Google Scholar
Roelofs, TS, Luijkx, KG, Embregts, PJ. Love, intimacy and sexuality in residential dementia care: A spousal perspective. Dementia 2019; 18(3): 936–50.Google Scholar
Elias, J, Ryan, A. A review and commentary on the factors that influence expressions of sexuality by older people in care homes. J Clin Nurs 2011; 20: 1668–76.Google Scholar
Tucker, I. Management of inappropriate sexual behaviors in dementia: A literature review. Int Psychogeriatr 2010; 22(5): 683–92.Google Scholar
Cipriani, G, Ulivi, M, Danti, S, Lucetti, C, Nuti, A. Sexual disinhibition and dementia. Psychogeriatr 2016; 16(2): 145–53.Google Scholar
Alagiakrishnan, K, Lim, D, Brahim, A, Wong, A, Wood, A, Senthilselvan, A, et al. Sexually inappropriate behaviour in demented elderly people. Postgrad Med J 2005; 81(957): 463–6.Google Scholar
Wallace, M, Safer, M. Hypersexuality among cognitively impaired older adults. Geriatr Nurs 2009; 30(4): 230–7.CrossRefGoogle ScholarPubMed
De Medeiros, K, Rosenberg, PB, Baker, AS, Onyike, CU. Improper sexual behaviors in elders with dementia living in residential care. Dement Geriatr Cogn Disord 2008; 26(4): 370–7.Google Scholar
Chapman, KR, Spitznagel, MB. Measurement of sexual disinhibition in dementia: A systematic review. Int J Geriatr Psychiatry 2019; 34(12): 1747–57.Google Scholar
Nagaratnam, N, Gayagay, G Jr. Hypersexuality in nursing care facilities: A descriptive study. Arch Gerontol Geriatr 2002; 35(3): 195–203.Google Scholar
Golander, H, Raz, A. The mask of dementia: Images of ‘demented residents’ in a nursing ward. Ageing Soc 1996; 16(3): 269–85.CrossRefGoogle Scholar
Mahieu, L, Gastmans, C. Sexuality in institutionalized elderly persons: A systematic review of argument-based ethics literature. Int Psychogeriatr 2012; 24(3): 346–57.Google Scholar
Gott, M, Galena, E, Hinchliff, S, Elford, H. ‘Opening a can of worms’: GP and practice nurse barriers to talking about sexual health in primary care. Fam Pract 2004; 21(5): 528–36.Google Scholar
Davies, HD, Zeiss, AM, Shea, EA, Tinklenberg, JR. Sexuality and intimacy in Alzheimer’s patients and their partners. Sex Disabil 1998; 16: 193–203.CrossRefGoogle Scholar
Miller, BL, Darby, AL, Swartz, JR, Yener, GG, Mena, I. Dietary changes, compulsions and sexual behavior in frontotemporal degeneration. Dementia 1995; 6(4): 195–9.Google ScholarPubMed
Mendez, MF, Shapira, JS. Hypersexual behavior in frontotemporal dementia: A comparison with early-onset Alzheimer’s disease. Arch Sex Behav 2013; 42(3): 501–9.Google Scholar
Wilkins, MJ. More than capacity: Alternatives for sexual decision making for individuals with dementia. Gerontol 2015; 55(5): 716–23.Google Scholar
Kennedy, CH, Niederbuhl, J. Establishing criteria for sexual consent capacity. Am J Ment Retard 2001; 106(6): 503–10.Google ScholarPubMed
American Bar Association/American Psychological Association. Assessment of Older Adults with Diminished Capacity: A Handbook for Psychologists. Washington, DC, American Bar Association/American Psychological Association, 2008.Google Scholar
Tarzia, L, Fetherstonhaugh, D, Bauer, M. Dementia, sexuality and consent in residential aged care facilities. J Med Ethics 2012; 38(10): 609–13.Google Scholar
Reynolds, P. Seksuele toestemming ontrafeld (Sexual consent unravelled), Ethiek & Maatschappij 2010; 13(1): 68–90.Google Scholar
Frederix, N, Boerjan, S, Verelst, C. Als Amor de draad kwijtraakt: Over seksualiteit en intimiteit bij personen met dementie (If Amor Is Lost: About Sexuality and Intimacy in Persons with Dementia). Leuven, Acco, 2017.Google Scholar
Kotter, JP, Akhtar, V, Gupta, G. Change. How Organizations Achieve Hard-to-Imagine Results in Uncertain and Volatile Times. Hoboken, NJ, Wiley, 2021.Google Scholar
White, MC. The eternal flame: Capacity to consent to sexual behavior among nursing home residents with dementia, Elder Law J 2010; 18: 133–58.Google Scholar
International Planned Parenthood Federation. Sexual rights: An IPPD declaration (Internet). London (UK): International Planned Parenthood Federation, 2008. Consulted on 2 April 2021, available from www.ippf.org/sites/default/files/sexualrightsippfdeclaration_1.pdf.Google Scholar
Swinnen. Seksualiteit van ouderen: Een multidisciplinaire benadering (Sexuality in Elderly: A Multidisciplinary Approach). Amsterdam, Amsterdam University Press, 2011.Google Scholar
Mahieu, L, Anckaert, L, Gastmans, C. Intimacy and sexuality in institutionalized dementia care: Clinical-ethical considerations. Health Care Anal 2014; 25: 52–71.CrossRefGoogle Scholar
Bauer, M, Fetherstonhaugh, D, Tarzia, L, Nay, R, Beattie, E. Supporting residents’ expression of sexuality: The initial construction of a sexuality assessment tool for residential aged care facilities. BMC Geriatr 2014; 14: 1–6.Google Scholar
Sensoa and Child Focus. Raamwerk seksualiteit en beleid (Sexuality and policy framework). Belgium: Sensoa and Child Focus, 2012. Consulted on 2 April 2021, available from www.sensoa.be/sites/default/files/digitaal_materiaal/2012j047raamwerkseksualiteitenbeleidprintable.pdf.Google Scholar
Makimoto, K, Kang, HS, Yamakawa, M, Konno, R. An integrated literature review on sexuality of elderly nursing home residents with dementia. Int J Nurs Pract 2015; 21(2): 80–90.CrossRefGoogle ScholarPubMed

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