Couples experiences with Alzheimer s Disease, Sexuality and Intimacy

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Jocelin Rodgers
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1 Couples experiences with Alzheimer s Disease, Sexuality and Intimacy Linn Sandberg, PhD Gender Studies, Stockholm University and Södertörn University, Sweden.

2 The problematic sexuality in dementia?

3 But how do couples experience sexuality and intimacy when living with Alzheimer s disease? Feminist work pointing to the pleasure and danger associated with sexuality for women (Vance 1984), to be applied to people living with dementia (PwD). Acknowledging the vulnerability of PwD, how sustainment or undermining sexual selves are highly dependent on others. While also highlighting pleasure, joy and assurance that sexuality, touch and intimacy enable.

4 Previous research Research primarily in the medical literature focusing on problematic sexual behaviours. Nursing literature on how to handle in care homes. A minor literature on experiences of the couple relationship, sexuality and intimacy. Gendered differences Role of care burden impacting on (female) partners experiences of desire and sexual satisfaction, male partners concern with consent. Negative changes on relationships associated with decreased satisfaction /sexual dissatisfaction. Noguiera et al spousal caregivers more dissatisfied than PwAD and couples without dementia. Voices of partners, Often quantitative. Meaning of sexuality not clear.

5 How to understand sexuality, how to understand intimacy? Sexuality as denoting activities, practices, desires and feelings related to the erotic life of people in the study. Sexual subjectivity. Foucault sexuality as made intelligible through discourses regimes of knowledge. Normative dimensions of how sexuality is expressed. Sexuality as gendered how we become intelligible as gendered subjects. Intimacy and touch as denoting bodily experiences on the borderlands of the sexual and non-sexual. Associated relationships, feelings, embodiment in a wide sense (cf. Sandberg 2011).

6 Alzheimer s disease, intimacy and sexuality: a study of dementia and the intimate partner relationship Qualitative interview study with (presently) seven heterosexual couples, where one partner diagnosed with AD. (five men, two women). Separate interviews. Diagnosis between two months to seven years prior to first interview. Mild to moderate stages, Experiences of disorientation and memory loss. Some speech impediment. Couples aged between All couples married (average years). Aim of study to explore experiences of the intimate and sexual relationship prior to and after the dementia diagnosis. Sexuality, gender and AD. Questions on sex/sexuality, intimacy touch as well as relationship biographies. Methodological and ethical issues involving couples with AD

7 Sexual and intimate relationships with Alzheimer s disease diverse narratives beyond binaries of tragedy/loss and living well Diversity of experiences, differences both between and within couples Older couples: Understanding dementia and sexuality through the lens of normal ageing. Changes in sexual and intimate relationship not disrupted from AD. Younger couples: AD more understood through the lens of psycho-pathology- disruption to sexual and intimate relationship. Previous relationship biographies impacting on experiences of intimacy after onset of AD.

8 This is not a marriage anymore- the impact of responsibility, loss of reciprocity and experiences of changing/loss of self in AD. Christina This is not a marriage anymore. Linn: What has happened then that makes you say this is not a marriage anymore?. Christina: I take all responsibility. All responsibility. [ ] Christina: I push him away in all respects. Physically I ve pushed him away. But just the other week we had a real row, and then both of us became sad. And I became really sad. Sat there crying and he then came and touched me in a way that, well a caring way. This makes me cry. Cause it was like in the past, a support, he was a support for me. He is not a support anymore. I cannot rely and lean on him.

9 Anna One thing that was very apparent when I first met Anders, I felt so beautiful. And this has been the case all these years. I felt so beautiful. I was THE Woman in the World. I was the woman and Anders was the man. [ ] And now this spring when I start summarizing how things have been since the diagnosis. What s happening to us, who are we and where are we going? All these things appearing. I love Anders I want to be with him, but who is he? How am I gonna live with? Anders is not the person I am passionately in love with simply. Like I said earlier, I fell for his brain, his intellect. And suddenly there is another person in front of me, who is not meeting me intellectually if you see what I mean. I m not saying it s bad. I am saying it is different. I can t have conversations beyond a few sentences with Anders. And of course that is different.

10 This ill health [throughout our life course] maybe made us to try different paths, both in our intimate relationship and or everyday life. Negotiating ableism/disability, gender and sexuality earlier in life. Frida: Well Folke s been considerate. I was ill for many years and then he was considerate and we ve complemented eachother and maybe had to do things differently. Folke: We ve had to, because of these accidents we experienced, that meant that our entire life was a bit different. Living with a woman who ahd almost no mobility in her hips, that means working with your hands in a different way than what you ve normally learnt.

11 She s a damn fine lady : affirming masculinity in dementia through sexual practices Henning: I was always a really ugly man. So being intimate with women was a way for me to become more confident. Lucky enough we can continue being sexually intimate today, having intercourse.

12 Some final notes Lack of reciprocity and experiences of responsibility, different partner different relationship, shape partners experiences of sexual desire and experiences of intimacy with partners. Impact on gendered self. Reorientations to sexuality and adaptations prior to AD, from ageing, illness, disability less disruptions of the sexual and intimate relationship. PwAd not experienced as that different/strange. Sexuality and intimacy as continued performance of gendered self in dementia. But whose sexuality matterpower and sexuality. Need for further feminist engagement in dementia studies. The role of gendered and sexual selves.

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