Dementia and its impacts on the intimate, sexual couple relationship: A systematic review of qualitative research studies

Abstract

Objective There is growing evidence for the need to recognize persons with dementia as sexual beings who wish to continue expressing their sexuality, including within their couple relationship. The aim of this literature review was to investigate empirical qualitative studies that examined sexuality and sexual intimacy in the couple relationship when one spouse has dementia. Method A systematic literature review was performed in January 2021, five data bases were searched: Pubmed, MedLine, Lilacs, Scopus, and SciELO. The references of articles included in the review were screened together with the references of other relevant reviews. Results Nine studies were identified that investigated sexuality and sexual intimacy from the perspective of the couple living with dementia or from the perspective of the spouse. The analysis identified four key themes: addressing dementia and sexuality; challenges to maintaining sexuality within the couple relationship; forms of sexual expression; and the desire to be seen as a sexual being. Conclusion Despite evidence of the importance of sexuality in later life and the positive effects it has on the quality of the couple relationship, research has identified the difficulty of destigmatizing sexuality and older persons, particularly when considering couples affected by dementia. Further research is required to better understand how living with the illness impacts sexual expression and the intimacy of the couple relationship.

In sickness and in health: Loneliness, depression, and the role of marital quality among spouses of persons with dementia

“…Thus, we hypothesize that those in good marriages have more to lose when their spouse develops cognitive limitations 14,15 . Our epidemiologic results complement prior qualitative studies 11,12 that identified close partners' sense of grief and anger at the loss of intimacy, both physically and intellectually or emotionally, in the face of dementia. We did not find a similar trend between marital quality and depression as related to spousal dementia.…”

“…Prior research details the large impact of dementia on the psychosocial health of spouses and caregivers, including themes of loneliness or loss, and sadness 11,12 . Moreover, extensive qualitative and sociology research demonstrates how the quality of the marital relationship, not just presence of the relationship, can influence psychosocial well‐being among spouses of PLwD 13–15 .…”

“…[4][5][6][7][8][9][10] Prior research details the large impact of dementia on the psychosocial health of spouses and caregivers, including themes of loneliness or loss, and sadness. 11,12 Moreover, extensive qualitative and sociology research demonstrates how the quality of the marital relationship, not just presence of the relationship, can influence psychosocial well-being among spouses of PLwD. [13][14][15] To our knowledge, however, no population-based estimates exist regarding the prevalence of both loneliness and depressive symptoms among spouses of PLwD and of those with milder cognitive impairment (CIND), and the role of marital quality in experiencing loneliness and/or depression.…”

Couples living with Alzheimer’s disease talk about sex and intimacy: A phenomenological qualitative study

“…A dementia diagnosis does not erase sexuality but may alter the way in which love and affection are given and received. Embracing persons with dementia as sexual beings, who have something to say about their own sexuality, and who have physical and intimate needs is essential for understanding their lived experience, in all its dimensions (Albert et al, 2022; D’Cruz et al, 2020).…”

“…The recognition that dementia is not experienced in isolation by the individual but within a relationship recognizes that couple intimacy is complex and paradoxical, and the expression of sexual intimacy often emerges as ambivalent and ambiguous (Albert et al, 2022; Youell et al, 2016). A significant proportion of people with dementia live in their own homes, and are often cared for by their spouses, which means the couple relationship is often sustained throughout the progression of the disease.…”