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."
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.
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.
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."