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!
