Sex and Alzheimer's: Love Stories, Sad Stories, and Lots of Questions

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Sexual urges don't stop just because Alzheimer's or another dementing illness invades the brain. Sometimes this is a blessing; some long-married couples say that the mind and body long remember the behaviors of sexual intimacy, even when short-term memory is on the fritz, which helps reinforce their closeness despite the disease-related adversity. Sometimes, on the other hand, sexuality coupled with dementia can cause big problems.

Few of us care to think about our parents having sex at any age or in any circumstances. But when the circumstances include dementia, certain issues might sidle up to a caregiver anyway. Reading this terrific legal overview in the Washington Post*** about an Alzheimer's rape case is a great reminder to family caregivers that sex is a fact of life (sometimes a thorny fact of life) all through life.

What are the most common minefields?

* A consenting couple, in which one party has Alzheimer's, but both enjoy the sexual relationship.

Potential minefields: Symptoms can ebb and flow, meaning a partner who seems like "her old self" one night might have a hard time with reading nonverbal body language and respond appropriately the next. As the ongoing demands of the disease take their toll on intimacy generally, a caregiver may feel more frustrated, less close, to the spouse, even when the sexual relationship persists.

Worth mentioning again: This is not universally true for all couples. But what is true is that the "balance of power" within the relationship is shifting in one direction, and the caregiver is more aware of these changes than the person with dementia, as time goes on.

Consensual sex between partners who live in assisted living situations is a hot button issue in long-term care. Whether one or both parties have dementia, who is to say when sexual activity should cease? Sexual communication is important to a relationship and worth respecting. And yet semi-communal living situations can afford little privacy, or make (often young) staffers who are mentally unprepared for this reality feel awkward.

* The person with Alzheimer's wants sex; the spousal caregiver, not so much.

Potential minefields: Changes brought by the disease as the person becomes more child-like and dependent can curb the spousal caregiver's desire. He or she may feel guilty about this reality. At the same time, disinhibition is a common side effect of Alzheimer's; the person may make aggressive sexual advances or strip as a function of the disease, rather than desire. It can be hard for a stressed caregiver to know the difference.

* The spousal caregiver wants sex; the person with Alzheimer's is past the point of consent (or isn't the object of desire).

Potential minefields: When within the bounds of marriage can intercourse be called rape? The definitions can get murky.

In the case of the spouse who no longer seeks the sexual companionship of his or her partner with dementia, weighing one's moral and practical appetite for an affair can become an issue. Given that people can live for a dozen years or more with advanced dementia, satisfying sexual needs can become a real issue for spousal caregivers.

* The person with Alzheimer's wants sex (or seems to) with oh, anybody.

Potential minefields: Sexual desire is a biological urge, but a hallmark symptom of dementia is a lack of judgment. So the person risks acting on perfectly natural urges -- though in ways that may or may not be appropriate. Or the person may embark on a sexual affair that, because of the disease's other effects, is otherwise an imbalanced one; for example, the father who wants to wed the nurse he becomes attracted to (who may be in love with him – or his money; how's a family to be sure?).

Disinhibition ties in, too; others may perceive disrobing or making sexual comments as advances whether they are or not. Hired or family caregivers around this hypersexual behavior can be very uncomfortable.

* A non-spousal caregiver or other person takes advantage of the person with Alzheimer's. (Or is it consensual?)

This is the crux of the fascinating case in the Washington Post feature. Sexual abuse is unconscionable, as in headline-making cases of nursing home workers accused of fondling or having intercourse with residents with such late-stage disease that it can't possibly be consensual. But what's rape in cases where the person can't exactly remember what happened and may or may not have been in agreement at the moment? What constitutes "taking advantage" of someone who's basically mentally impaired? Are the definitions different morally, ethically, and legally?

They're all tough questions nobody likes to think about. Spousal caregivers encounter them first, but so might any of us. They're potentially strange bedfellows, sex and Alzheimer's. Are you ready?

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*** http://www.washingtonpost.com/wp-dyn/content/article/2009/09/18/AR2009091801144.html


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Last updated: 22-Sep-2009
Paula Spencer, Caring.com senior editor