Dementia and Sex

How Your Sex Life May Change When a Partner Has Dementia
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For many people, dementia remains an uncomfortable subject to talk about. Sex is another. Put the two together in a sentence -- like, What happens to my sex life when my partner has dementia? -- and the silence is deafening.

"There are a lot more questions than answers," says Ken Robbins, a geriatric psychiatrist at the University of Wisconsin who's also board-certified in internal medicine and a Caring.com senior medical editor. "But it's a significant issue for couples, and one that will continue to grow."

Here are some of the most common dilemmas that come up for caregivers of mates who have Alzheimer's or another form of dementia:

"My wife has dementia. Is it ethical to have sexual relations even when she's not quite sure what's happening?"

The "right" answer depends on each individual situation, Robbins says. Someone in the early stages of dementia is likely to be well aware of his or her sexuality and continue to experience desire and arousal. Many couples find intimate time to be a source of mutual comfort and reassurance at a turbulent time. Even as the disease progresses, emotional memories associated with sex may endure and cause the person to seem like his or her "old self."

SEE ALSO: Find Memory Care Near You

Or not. Eventually the disease progresses to a stage where the person is increasingly dependent and childlike, and your partner may indeed have little understanding about what's happening. She may even be frightened or upset by sexual advances. For some caregivers, cognitive changes are a turnoff, leading to guilt or sexual frustration.

Knowing how to proceed lies in the realm of ethics: Is it fair to either party to continue sexual activities under such circumstances? Is it still a marital "duty" when the spouse doesn't understand? What would the person think if the situation were reversed? What does your conscience tell you?

What to Do When a Partner With Dementia Has Erectile Dysfunction (ED)

The inability to perform sexually often (not always) accompanies dementia. The net result -- looking at years of living with a mate but not a sexual partner -- is the same as for those who decide to cease sexual relations with a partner who has advancing dementia. In other words: Now what?

"This becomes a time when people often have affairs," Robbins says -- including devoted spouses who would never have considered such a thing when their partner was healthy. "They feel free of the marital commitment because the person they're with is not the same person anymore."

Again, one is left weighing his or her individual moral and sexual appetite for an affair. People can live 5, 10, 20 years or more with dementia. In cases of early-onset Alzheimer's, for example, the caregiver is often still in his or her sexual prime. Many caregivers have hooked up with a fellow caregiver in the same situation (with or without an emotional commitment), given their parallel physical needs.

SEE ALSO: Find Memory Care Near You

What to Do When a Partner With Dementia Accuses You of an Affair

Paranoid delusions -- irrational beliefs -- are an extremely common complication of dementia. The person may become suspicious of all kinds of things, from a nurse stealing to a partner having an affair. "There's a tendency to blame others for any difficulty they're experiencing," Robbins says.

The more you protest, the more fixed this belief may become. So whether the accusation is true or untrue, it makes little sense to spend a lot of energy trying to "prove" innocence. "The best strategy is to let the person say what's on his mind and listen attentively. Then let him know you're sorry he feels this way, and try to gently change the subject," Robbins says.

Agreeing with the accusations or confessing transgressive behavior opens up a different set of potential problems with little upside, given that the person with dementia is unable to process the meaning of what you're saying (or may quickly forget and/or return to accusing mode).

What to Do When a Partner With Dementia Requests Frequent Sex

Sexual desire is a biological urge, but a hallmark symptom of dementia is a lack of judgment. Disinhibition is a common dementia effect; the person may make advances or start to disrobe at inappropriate times, for example, purely as a function of the disease. So the person acts on perfectly natural urges -- though in ways that may or may not be appropriate or welcomed by the spouse.

One should never feel pressured to do something if it feels uncomfortable. Some couples enjoy moments of reconnection in spite of dementia, but for others it can be a source of dismay.

SEE ALSO: Find Memory Care Near You

You can try to explain your perspective, but the person with dementia may lack the ability to understand, and only feel rejected. Caring.com's family advisor, Carol O'Dell, recommends diversion, telling a fib about why you can't right now, or trying to substitute nonsexual forms of intimacy, such as hand-holding.

Dementia and Sex in Assisted Living: What to Know

Layered on top of ethical considerations is the not-so-small matter of privacy, when one or both members of a couple lives in a communal facility. But sexual communication is important to a relationship, and it's worth preserving if possible.

Assisted-living facilities struggle with this issue every day. Staff, often relatively young aides, have little training or experience in dealing with it and may actively discourage time alone for married couples.

For starters, your spouse needs a private room and not a semiprivate one; asking roommates to leave is too much. One option is to discuss the situation directly with management. Ask about its policy for private time for couples, the best times for conjugal visits, and how to ensure you won't be disturbed (a locked door? A sign?). Use words like "privacy" or "private time" if you're uncomfortable talking about sex.

For this and every sexual situation, Robbins recommends dementia caregivers look into joining a support group of those in similar straits. "These groups aren't just for empathy and emotional support -- they excel at being strategy sessions where others share practical advice about what worked for them."

SEE ALSO: Find Memory Care Near You


2 months ago, said...

I have now come across this article and see that many responses are a year old. For what it is worth to anyone,,here's my story. There is a 25 year age difference in my husband and me. I'm 65 and he is 90. We have been married 37 years. He has vascular dementia, delusions of my infidelity, other health problems, and we haven't had intercourse in several years--actually can no longer can remember the last time. Given his age, he can no longer perform sexually. However, he feels compelled to satisfy me in other ways, which he always does, but his need to do this is constant. He simply wears me out and if I push him away, his delusion that I am getting sex elsewhere always bubbles out. I have tried every technique available but nothing works nor have I found absolutely any article that deals with my problem. After being on Alzheimer's message board for the past 2 years,,this topic is almost "forbidden.." The only time I have heard anyone approach the topic is when I watched the documentary about Glenn Campbell and his wife said that Glenn was like being on Viagara 24/7. I believe I know exactly where she was coming from. When I became my husband's caregiver, I put sex on the back burner. Dealing with incontnence issues--both urinary and bowel, dressing, undressing, medications, delusions, and so many daily tasks that a caregiver has to perform, I, at least, find sex now burdensome. At the end of the day, I am simply tired. Sex is just one more task that is added on.My husband and I had robust sex life for many years, but the romance and desire is gone from me now. Perhaps there is no solution to my dilemma but I sure wish people weren't so afraid to,discuss this subject which is a very intimate topic to say the least.


over 1 year ago, said...

My husband is only in his early 50's and not yet diagnosed, but suspicions are high here with loss of capability of work, confusion over familiar words, forgetting to do what used to be routine chores, etc. and the problem that I have is that I just don't find this new man physical attractive - at all. After spending the evening reminding him to clean up the kitchen after dinner and how to do it, making him hang up his jacket and put his wallet in the right place so he can find it the next day and finally - scolding? I'm not sure that's right, but close - him to get off the computer shooting games and go to bed, I'm angry and tired. I still have two teenagers at home and I'm trying to shelter them at least until we visit the neurologist in six weeks - an appointment my husband feels must be to set a baseline as he is sure he is fine. It's hard to respond to his interest when it comes - and honestly, he's not very good in bed anymore. Ugh.


over 1 year ago, said...

Like to know more please.


over 1 year ago, said...

wife of 62 years suffers with dementia. I have adjusted to the lack of physical intimacy but long for intellectual conversation and prefer talking to ladies, they bring another dimension into the discussion. It seems an online discussion group would be great for people like me, is there such a group?


almost 3 years ago, said...

I'm just grateful that my husband with dementia doesn't seem to want sex with me. He still says I'm beautiful & he loves me, and is very dependent on me, we get in hot tub & shower together, but he doesn't initiate anything sexual. (When I used to crawl in bed with him & put my arms around him he'd try to get me to touch him but I think that was just a reflex--I don't approach him when he's sleeping anymore.) He was such a sex maniac before that it's a relief, really. As far as having an affair, or even flirting with someone, even if I WANTED to, which I don't, I don't know when I could possibly find the time to pull it off! Sometimes I feel judgmental of those who do seek outside relationships because my husband still lives with me and knows me and we spend time together. But I've wondered how I'll feel when he doesn't know me at all--I think it may happen because he's started to lose track of exactly who I am sometimes lately. I don't think of putting him in a facility but I'm gradually seeing that it could come to that if he becomes much worse; if he strikes up a relationship with another dementia patient I don't think I'd mind. I might then seek more emotional help "outside" the marriage, but having a steamy affair is just about the last thing I want! It may seem cold, but I'm looking forward to NOT being in a "one-on-one" relationship.


about 4 years ago, said...

Further comment: In re-reading the article, and prior comments, and from my own experience as a spousal caregiver of a woman who did _not_ lose her marbles at all... it seems to me the article raises good points but they are largely academic... What I mean is that for a spousal caregiver, whatever the chronic illness, the sexual compatibility and intimacy is one of the first, not the last things to go. When your partner is no longer responsive, you lose the urge to have sex with him/her... So the only people I could see who would want to have sex with their partner who has Alzheimer's are possibly a partner who also has Alzheimer's (or as in the case of Justice Sandra Day O'Connor, another AD patient, who falls in love with your ill spouse with AD... and both forget that they are already married.) In other words, both partners are incompetent. It would seem to me that a competent person who has sex with a person who is incompetent with AD, whether or not they are spouses/partners, would have serious psychological problems over his/her sexuality, that are not related to love and intimate concern for the partner; and that person would benefit far more by having counseling/therapy -- not to mention the added danger of inflicting psychological distress on the AD patient.


about 4 years ago, said...

My Heart goes out to ALL of you! I Do SO Understand! N.


about 4 years ago, said...

I now feel better about seeking a Lady Care-Giver, who may be in a similar situation as myself (sexually speaking) with whom, to possibly form a Compatible "Relationship". Thank you. N.


over 4 years ago, said...

My husband has been diagnosed with beginning dementia almost a year ago. He is approaching any of my friends who visit me with comments like "I like your boobs" or " come sit on my lap and give me a kiss". I am losing all my friends even though I try to explain about him. He doesn't remember ever doing or saying anthing pertaining to sex but I am sick over all this. My life has been reduced to taking care of him and I am in such depression I don't know what to do. Most important what do I do about the sex fixation? Pat


over 4 years ago, said...

All of the doctors and nurses sweep an 82 year old man's sexual urges under the table with a bit of a chuckle. We had some vardenafil and have used them up. It is a proven fact to me that for him to reach a climax it will relax him for several days and he requires less medication. Believe me this has nothing to do with me - I just lay there and snuggle! During our next doctor's visit I plan to present this case strongly to them.


over 4 years ago, said...

This article represents well the complex sexual relationship between a partners who has dementia and the partner who is providing care. The Alzheimer's Association encourages the healthy partner to find and form another intimate relationship outside the marriage. In my case I found others extremely judgmental (friends and family, even potential partners) as a serious block to finding love and feeling guilty. Also, the level of energy to develop another relationship was difficulty to muster for me as being a family caregiver 24/7 except for a few hours when I had aids-in-attendance prevented me from pursuing such an alternative to living alone. I wonder if others have found similar problems.


over 4 years ago, said...

yes. very information and useful.


over 4 years ago, said...

The answer is connect with someone else for sex. Nothng to feel guilty about. Its like going with someone else to a movie then coming back home.


over 4 years ago, said...

Just saw this today. Very good article. A number of members of the Well Spouse â"ž¢ Association are in this situation. We offer peer emotional support. There are no easy answers...


almost 5 years ago, said...

Well written article and good comments.


almost 5 years ago, said...

As far as sexual relations are concerned, I felt it was immoral to make love to my husband because he was out of his mind with Alzheimer's. I just accepted the fact that my sex life was over in my 50s. I was also so busy with managing everything by myself for so long, it really was not possible for me to think about a sexual relationship with him or with someone else. Instead I used a vibrator when I needed to release the sexual energy instead of using my husband. Hope this makes sense.


almost 5 years ago, said...

I have not seen this topic discussed. Real life issues need to be discussed by those of us going thru these life altering changes with our spouses. Caregiving for a spouse with dementia is a bummer even when done in love.


about 5 years ago, said...

SCGail, some drugs may increase libido and/or cause disinhibition. Aricept is one of them. If your husband is taking that, talk with his doctor about switching to one of the other cholinesterase inhibitors (Exelon, Razadyne/galantamine). To check his other meds for possible side effects, my favorite website is: http://www.rxlist.com Side effects are given in the 3rd page of each drug listing.