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The experiences of sexuality and intimacy among persons diagnosed with Alzheimer’s disease (AD) will finally be understood first hand from persons coping with the disease themselves, said Trent University post-doctoral fellow Dr. Linn Sandberg.

“Later life sexuality must be understood from a broader perspective on intimacy, rather than narrow focus on intercourse,” she said while presenting her latest work, “Sexuality, Intimacy and Gendered Subjectivity in Couples with Alzheimer’s Disease”, in a seminar at Trent on November 19.

Dr. Sandberg’s work explores the experiences of sexuality and intimacy of persons living with AD and their partners. The aging embodiment, ailments from aging, erectile changes and other bodily changes directing men to intimacy and touch, will be the focus of her research.

According to her, the sexualities of people with dementia are viewed as being grotesque and problematic— “inappropriate sexual behaviour”— which is termed either ”hypersexuality” or ”disinhibition”. And, Alzheimer’s on the other hand, is also considered a major cultural anxiety that needs to be treated, often through medication.

However, those experiences of intimacy, sexuality, and touch continue to be important aspects of life for people suffering from Alzheimer’s and their partners, pointed out Dr. Sandberg.

She explained that the onset of Alzheimer’s disease often entails considerable changes in a people’s lives, but it does not decrease the significance of embodied intimacy and sexual activity. Instead, these things become a central aspect of the relationship and the maintenance of identity when memory, language, and communicative skills are deteriorating.

“The major outcome of the study is to identify the significance of intimacy and touch, and way of shaping desirable sex as more mature and considerate, hegemonic narratives of becoming a better lover and man,” said Dr. Sandberg.

Not to mention re-experiencing gendered and sexual subjectivity through intimacy and touch. For instance, the performing and un-performing of gender and sexuality in relation to AD, she added.

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Her research is based on the understanding that being continuously sexually active is now generally considered to be an important aspect of healthy and successful aging. But there are limitations and problems of today’s successful aging discourses, which exclude the fact that there are many seniors who cannot or do not want to live up to expectations of active later lives.

According to Sandberg, during any discussion of sexuality as a positive part of aging, older persons with chronic illnesses or disabilities are largely invisible. Furthermore, even though there is a fair amount of previous research conducted on dementia and sexuality, it is mainly from the perspectives of staff in health care and residential homes.
Consequentially, there are few studies dealing with the sexualities and intimate relationships of people with dementia based on the experiences of couples.

Another limitation on previous research into this area is that the research is almost exclusively based on the experiences and perspectives of the partner without dementia, therefore the voices of people afflicted with the disease remain unheard.

Not to mention how the existing research is mainly quantitative, measuring the frequency of sexual activity and the satisfaction.

Very few studies focus on an individuals’ own sense of sexuality and intimacy from a qualitative perspective. So those are the lines of areas her current research will address, she informed.

The main challenges of the research, she noted, are the ethical issues such as, negative aspects of sexuality or experiences of abuse in research with couples. And also, the power relations between participants with AD and partners, and between participants and herself as a researcher, is another challenge.