Sexetiquette.

In the last few months, the subject of sex has come up a lot in my discussions with caregivers, so when I saw a book about sexuality and dementia pop up on my Amazon list I was happy, hoping it would help me answer some of the concerns and questions I’d been presented with. It is an interesting topic because sex in normal life is a private, somewhat taboo topic; sex in dementia life can be even more difficult to talk about! But I’ve had several caregivers present different sexual situations involving their loved ones, and it seemed like a good thing to explore.

The desire for sexual intimacy doesn’t just stop when someone is diagnosed with dementia. Sometimes, sexual contact continues between caregiver and loved one late into the disease and that’s great, as long as everyone is fine with it. I’ve also talked to caregivers who wanted suggestions for how to avoid the sexual inclinations exhibited by their loved one; either toward themselves or towards the other parent, if the caregiver is an adult child of someone with dementia.

I gave the best answers I could to these requests for solutions to a delicate problem, but it made me realize that in all the books I’ve read on dementia, there hasn’t really been much discussion about how to deflect sexual advances carefully and tactfully. Some of the books cover sexual behaviors in facilities and how professional caregivers should handle it, but there wasn’t much for the family caregiver.

I had no problem with Dad having sex, as long as it was consensual (and I didn’t know about it!); in fact, when I toured facilities the first time, I asked all of them what their policy was on sexual relations between residents, whether they allowed them, and how they handled it. Since I knew that relationships in facilities between residents were possible, I wanted Dad to be in a place where it was okay to experience as much of the relationship as possible, should it happen. The subject of a relationship between Dad and a resident never came up - however, he did have a relationship with someone else.

A few years after my mom died, my father started dating a woman named Janet, who was a lovely individual, although she had some personal issues. I imagine they had an intimate relationship, not that I wanted to know about it, but they eventually broke up. After I moved in with Dad, unaware of his physical situation, she began sending him letters suggesting a renewal of their relationship. I met with her and told her about Dad’s illness, then we all had lunch together, which everyone enjoyed. Eventually, I hired her to be one of Dad’s informal caregivers; a few days a week she would take him out to lunch, or to her house, or on a walk with her dogs, etc.

The situation worked for a few years, until her mental issues began to intrude, making me concerned for Dad’s safety and my own sanity, and I fired her. (This story is detailed in my new book!) Until that time, I know that they enjoyed spending time together, and I suspect they resumed their intimate relationship, which I was fine with. Eventually, I suspect he lost that drive since he never really exhibited any sexual behavior to his caregivers or to me.

As a family caregiver, it is important not to ignore the question of your loved one and sexuality. Think about various scenarios and decide how you feel about them and what you think is best for you and your loved one. If they are your spouse, it is up to you whether you want to continue to have a sexual relationship; if not, there are ways to deflect and redirect that energy. Sometimes, what comes out as a desire for sex is actually a desire for touching or affection or connection.

Sometimes, dementia sufferers who are living close to each other in facilities make the reasonable assumption that the man they sit with at dinner every night, or the woman they take walks with is actually their spouse, or that they are in a relationship, even though their spouse may still be alive! Some families have a problem with this, some don't. Personally, I think as long as everyone is safe and happy, who cares if they find comfort with someone else? In any case, it is up to the family to make the decisions, but try to open your mind to the possibilities somewhat since your care receiver's well-being is what really matters, not your own feelings.

Make sure everyone is safe and comfortable and not doing something they don’t want to do. If you are placing them, find out the facility’s policies on sex between residents, what they do with inappropriate sexual behaviors, etc. Sexuality is a natural part of being an adult, and it doesn’t just go away with the onset of dementia. Don’t be embarrassed or uncomfortable, and find a good support group or peer who can discuss options and normalize it for you.

Sexuality and Dementia, by Douglas Wornell: I recommend this as the first book I’ve read directly addressing dementia and sexual behaviors. He covers reasons for sexual impulses in those with dementia, as well as medication issues, and the possible issues with sexuality in facilities. I wish he gave a few more strategies for how to disarm a situation between a family caregiver and loved one, for example, but he does suggest some, such as redirection. A quick, informative read!