The topic of sex and dementia is one I have been thinking about writing on for some time, and now seems the right time to post something about it. Many have written and talked about people with dementia and sexuality, including writing articles and books about it, but so far, I have not found very much actually written by the cohort it relates to, that is, people with dementia.
I suspect it is time people with dementia speak up, and when I did speak up about the exclusion of people with dementia on a panel about sex and dementia at Risky Business, the HammondCare conference in 2014, I was not treated well (by some) for speaking up about it. But, it is right we are involved, and have a voice on this topic. After all, it is the most intimate part of our lives.
There is a conference coming up soon in Melbourne, sponsored by COTA and Alzheimer’s Australia Victoria on sex and dementia, and still, after much prompting, there has been no announcement of a speaker living with dementia, invited as a plenary speaker on this topic. Of course, I will keep advocating for one to be invited.
It seems unreasonable that people without dementia write and speak about this topic, with including us. It is one that is intimate, deeply personal and very private, and a topic that so many assumptions have been made about it and us.
Just because we have dementia does not mean we don’t want to have sex, although many people with dementia can stop wanting to have sex due to things such as losing their sense of self or the changed relationships brought on by the symptoms of dementia. I suspect my BUB wishes I had a type of dementia where I wanted sex more often, and perhaps was less inhibited… who knows!! This is a blog that is trying to talk about a very personal topic, and hence, is probably going to ramble on rather a lot. There is much to think about… and writing about it here, impacts him, so I have to be sensitive and careful.
I came across this article Better sex-and-dementia care call some time ago, and it is a useful read particularly as it highlights the lack of training of staff in this area, and how difficult it is for adult children of people with dementia to accept their parents may still want to have sex or be intimate in some way. Of course, if it is the husband or wife of a person in residential care, who has dementia and is being intimate with someone other than their partner, this is painful and challenging, and needs to be dealt with very sensitively.
But it is a hugely personal topic, and when it comes to sexuality and dementia, the only people who really can talk authentically about it are people with dementia and their (sexual) partners, married or otherwise. They [we] must be included in these conversations. It is a basic human right, and no organisation can be dementia friendly if they don’t include us in everything that matters to us, or affects us.
Without including us, the isolation, stigma, discrimination and the many myths of dementia simply continue…