Alzheimers sjukdom, intimitet och sexualitet – en studie av den intima parrelationen vid demenssjukdom
This has study has explored experiences of sexuality and intimate relations among heterosexual couples where one of the partners was diagnosed with Alzheimer’s disease (AD). A particular focus of the study was gender, how AD impacted on men and women’s gendered identities and how this in turn influenced sexual and intimate relationships. In total 19 participants were interviewed for the study. Among these, 14 participants were part of couples where both the person with AD and the partner were interviewed. In addition, interviews were conducted with five partners of a person with AD, but where the ill spouse could not partake due to inability to give informed consent.
All in all, 23 interviews were conducted within the project. Participants were married, aged between 55 and 87 and in the majority of the couples it was the male spouse who had an Alzheimer’s-diagnosis. Findings show that experiences of the sexual and intimate relationship varied between couples.
Age and different expectations on sexual activity and health in varying parts of the life course seemed to influence the different experiences. Older couples, in their seventies and eighties, had often experienced age-related changes to the sexual and intimate relationship already before the onset of AD. Among the older couples both the person with AD and the partner expressed that they were ”happy for what had”. In these couples the partner also perceived the person with AD as the same, the illness impacted on everyday life but not on the perception of the ill spouse as a person.
Among the younger couples, in contrast, Alzheimer’s disease was to a greater extent perceived as a disruption to a previously sexually active and passionate relationship. The partners in the younger couples also experienced the person with AD as different to a greater extent. Findings from the study also suggest that overall changes in the relationship after the onset of dementia, such as increasing responsibility for the partner and loss of communication and reciprocity influenced in particular non-ill female spouses sexual desire and wish to continue a sexual relationship.
This resonates findings from previous research. In cases where the female partner experienced the husband as different/another person as result of the illness, this also impacted on her experience of her gendered identity; she experienced herself as more as a “mother” than a sexually desiring/desirable woman.
In the cases where problems emerged in the sexual and intimate relationship, as a result of the illness, there were evident differences between the experiences of the person with AD and those of the partner. The person with AD expressed overall life dissatisfaction, conflicts, not being recognized and loss of autonomy and self-confidence as impacting on sexual desire and the sexual relationship. The partner, in contrast, emphasized increasing responsibility, loss off reciprocity that the partner was different and childlike and no longer affirmed them as things that influenced the sexual relationship negatively.
All in all, the findings of the study show that sexuality and intimacy could be a positive aspect of everyday life after an AD-diagnosis, as a source of well-being, comfort and as sustenance of the relationship and identities. But sexuality and intimacy is also sometimes experienced as a problem. In these cases gender and age/life course position seemed of particular significance.
The younger couple had been more sexually active at the time of the diagnosis and there seemed to be greater expectation on a continued sexual relationship. Older couples had more often negotiated and changed their sexual relationships due to embodied ageing and other illnesses and understood changing in memory as well as sexual relationships as expected parts of later life.
In terms of gender the asymmetry that emerged in the relationship due to the illness influenced the identities and sexual desire of female spouses to a greater extent than men’s. This could be analyzed as expressions of how women’s identities and sexualities are shaped through desires for men as cognitive subjects.