A few days ago an article was posted in the NPR health blog Shots, titled "Dementia Complicates Romance in Nursing Homes". The piece was primarily about a new report out of the Australian Centre for Evidence Based Age Care that looked at how sexuality plays out in nursing homes or long term residential care facilities (basically places where people end up living out the rest of their lives for a variety of reasons).
The article highlights many of the obstacles that people living in nursing homes face as they try to live their lives, day-to-day, with as much enjoyment and dignity as possible. The obstacles, mostly, are structural and systemic; rooms don't have locks on the doors, most everyone has a single bed, older people are infantalized, ignored, de-sexualized, and many experience sexual violence while living in nursing homes. None of things have to do with dementia of course. Well except you could say that dementia is what got them into the nursing home and the fact that they have dementia is what makes it easy for the rest of us to treat them (or forget about them) the way we do.
If the headline of the article truly described what was in the article, it would have read "Nursing Homes Complicate Romance In Nursing Homes". But for whatever reason it's the dementia that gets the blame. And that's not right.
Which isn't to say that living with dementia doesn't make human interactions more complicated. It's not uncommon for someone with dementia living in a nursing home who may have been in a 50 year relationship, whose spouse is still alive, to forget that they even have a spouse and want to hook up with someone new. And living with dementia sometimes does mean that one becomes aggressive or violent, without control. I guess my point is that there's plenty of blame to go around.
But the thing is that if we want to make things better, we need to focus less on who (or what) to blame, and on what we can do about it. And the first place to look is the nursing homes themselves and the policies that govern them.
That's what this report was about. The authors point out that people living in nursing homes are often denied the right to express or explore their sexual desires because it is assumed that having dementia means they can't consent to sex.
There's a lot to unpack here, but for now I want to highlight what the authors propose, which I think is both accurate and radical.
The authors are quoted by NPR suggesting that being able to consent to sex should not be thought of as requiring the same kinds of cognitive capacity as, say, being able to make changes to one's estate:
"Sexuality shouldn't be categorized as a high-stakes decision, like, say, a will or a major financial decision where you really need the capacity to consent to things," says Tarzia, "We're saying that sexuality is different and the way to establish consent should be different."
This is not an idea that is widely adopted among those who often get to make decisions about capacity to consent in institutional settings. It's ironic, because sex IS treated differently in these settings in other ways. In theory, and on paper, nursing homes are meant to allow residents to live with as much autonomy and dignity as is possible. And there are plenty of rules, regulations, and even laws, that are meant to protect individuals access to activities of daily living in nursing homes. Sex is almost always left out. Sex is singled out by its absence in discussion of what makes for a life worth living.
And yet, when it comes to determining who can consent to what, nursing home staff (and professionals who are called in to make assessments) are often willing to extrapolate from one kind of thought process to another. If Ms. Smith is unable to bathe herself, and requires someone to help her take daily medication, then the assumption is that she would be unable to have sex on her own, or that she would require someone else to determine whether a sexual partner she desires is an appropriate one.
The authors of this report are suggesting that it's more complicated than that. And they propose a different way of determining one's ability to consent to sex.
They aren't the only ones.
In 2009 a group in British Columbia, Canada developed a document titled "Supporting Sexual Health and Intimacy in Care Facilities: Guidelines for Supporting Adults Living in Long-Term Care Facilities and Group Homes in British Columbia". It's not a document without flaws, but it is a pretty good place to start re-imagining how we might support sexual health and sexual expression in nursing homes. If you're interested you can access the Guidelines through the Vancouver Coastal Health website (just scroll down to the Guidelines section to download a PDF).
Having worked in and around issues of disability and sexuality for many years it's clear to me that issues of capacity to consent to sex - and specifically who gets to decide when someone is able to say yes to sex - are among the most complicated and most painful. It's also a highly fragmented social issue that would benefit greatly from new ways of thinking and feeling about sex that began with the premise that we all have much more in common than we think.
Read More - NPR.org: Dementia Complicates Romance in Nursing Homes
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