“Love is everything,” said a widower during a study on love, sexuality, and intimacy among people with dementia in care homes and their spouses, before he began to cry. Other respondents revealed dilemmas, such as the conflict between the desire to protect their spouse with dementia and their own intimate needs.
Residents of nursing homes are dependent on care and can no longer make independent decisions in many areas. This is especially true for people with dementia. How do the conditions in nursing homes affect their experience of love, intimacy, and sexuality? Tineke S.M. Roelofs and her team from Tilburg University in the Netherlands investigated this, also including the perspective of the spouses of people with dementia.
In their study, the researchers first identify various factors that can influence the experience of intimacy in nursing homes. These include the attitudes of caregivers, some of whom would classify sexual behavior as problematic and forbidden. Additionally, negative stereotypes regarding sexuality in old age generally existed. However, the World Health Organization (WHO) has emphasized the lifelong importance of sexuality and intimacy. An increasing number of studies also show that these needs are not tied to an age limit.
Perspective of those affected previously little researched
Previous research on sexuality and intimacy of nursing home residents with dementia, according to Roelofs, has focused on aspects such as the range of sexual behaviors and the perspective of nursing staff, who have at times lamented the tension between care responsibilities and residents' need for autonomy. These studies clearly indicated the importance of staff training and guidelines regarding residents' intimacy and sexuality. However, according to Roelofs, the perspective of those affected has been little researched so far, although it is becoming increasingly important in the context of increasingly personalized care.
Against this backdrop, the research team wanted to investigate the experiences of nursing home residents with dementia and their partners regarding love, intimacy, and sexuality. For their study, they conducted in-depth interviews with 12 women and men. Four couples and four individual residents were interviewed. Three couples were married; one couple had been together for a long time but was not married. In one of the couples, both partners had dementia and lived together in the nursing home. Of the four individual residents, none were in a relationship at the time of the interview; three were widowed, and one had been single her entire life.
All respondents wished for more privacy
The interviews showed that all respondents considered love, intimacy, and sexuality to be a very important part of their lives, and had done so for a long time. The desire for togetherness, connection, and love was repeatedly mentioned. At the same time, physical distance due to living in a nursing home and emotional distance due to the progression of dementia stood in the way of this desire. This clearly made both the residents with dementia and their partners sad, even if they did not explicitly express it or even downplayed it.
Overall, the significant impact of dementia on the lives of the respondents became clear. As a result of the illness, the conditions in the nursing home, and other factors, profound dilemmas arose regarding intimacy: the desire for privacy, physical and emotional needs, physical and mental limitations, loyalty to one's partner, and the desire to protect each other are some of the factors within this complex situation. Only one couple reported experiencing physical sexuality within the nursing home. The other respondents stated that love and intimacy were the most important aspects of their relationship. They missed being intimate with someone and cited various reasons for this deficit, including physical reasons such as impotence and non-physical reasons (being old in general). All wished for guaranteed privacy in the nursing home to fulfill their needs but reported missing it at the time of the survey.
Caregivers should initiate open conversations about the topic.
The diversity of stories told underscores, according to the authors, how important it is to give both residents and their partners a voice on this topic. Based on their findings, the researchers recommend, on the one hand, finding solutions for practical obstacles in nursing homes. Above all, open conversations between residents and their partners should be initiated and guided by nursing staff. Knowledge about intimacy and sexuality in old age in general, and specifically about the dilemmas identified in this study, are of great importance.
The authors also point out some limitations of their study. For instance, the interview method only allowed for limited generalization of the results to the wider population. This was further exacerbated by the small, exclusively white, Dutch, and heterosexual sample size. According to the research team, one reason for this was the difficult legal situation regarding the participation of people with dementia in studies.
The full study can be found here:
Love, Intimacy, and Sexuality in Residential Dementia Care: A Client Perspective September 2019
