Monday, August 9, 2010

Sexual Life and Alzheimer's Disease

Besides memory loss and impaired thinking, Alzheimer's disease can produce daunting changes in behavior and personality. It is impossible to say how the disease will unfold for a given individual, but in some cases, it brings about unwelcome sexual -- or seemingly sexual -- behaviors.

For spouses and loved ones, such changes underscore the impact of the disease on even the most intimate of relationships. It is vital, though, to remember that this behavior is a result of the disease -- or possibly other health issues or medications -- not an intentional choice of the individual.

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Yes, the sexual urges don't stop just because Alzheimer's or another dementia 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?

1. 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.

2. 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.

3. 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.

4. 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.

5. 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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Managing Behavior Without Drugs

In a 2007 article in Geriatric Nursing, Ethel Mitty and Sandi Flores noted that people with Alzheimer's increasingly communicate through behavior instead of speech, and as the disease deprives them of cultural norms and personal history, their behavior can become jarringly uncharacteristic.

The Alzheimer's Association advises family and friends of individuals with Alzheimer's to:
  • Avoid becoming angry at, arguing with or embarrassing the person; try to be gentle and patient.
  • Seek a reason for the behavior; for example, someone who disrobes in public may simply be hot or tired or may find their clothing uncomfortable.
  • Gently but firmly remind the individual that the behavior is inappropriate.
  • Try distracting or redirecting the person's attention, or, if necessary, take him or her someplace private.
  • Try increasing the level of appropriate physical attention, hugs, stroking the hair, massage, etc.; sexual advances may reflect a need for reassuring contact.
  • Consider practical solutions; for inappropriate disrobing, try putting trousers or dresses on backward or carrying extra (more comfortable) clothing with you during outings.
  • Keep in mind the possibility of depression, medication side effects or interactions, which can reduce interest in sex or trigger inappropriate behavior.
  • Consult a specialist in Alzheimer's or dementia or a geriatric psychologist.

Urgent intervention is needed if the person becomes physically aggressive or violent. Have a plan of action in place, whether it be calling on family members, friends or the police for help. It may also become necessary to move the individual to a care facility better equipped to handle such behavior.

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Balancing the Sexual Rights of People with Alzheimer's and Their Partners

Sexuality is a fundamental part of human existence, and sex is an important way of sharing closeness and expressing love. Many people, though, have difficulty accepting that older adults or those who have serious illnesses still have sexual needs and the right to express them.

In long-term care facilities, sexual needs can endure even after people no longer recognize their spouses or remember that they are married. Occasionally, this results in extramarital nursing home relationships, which can raise awkward issues. Most long-term care facilities have established policies regarding relationships and sexual behavior. Major concerns include avoiding any sexual exploitation, abuse or assault and determining the individuals' ability to give meaningful consent.

The impact of Alzheimer's on awareness and rational thinking ultimately destroys the ability to consent. A partner seeking sexual intimacy with someone at this stage of dementia can face difficult ethical questions and may decide to forgo sex altogether -- or seek it outside the relationship.

On the other hand, caregivers may experience a loss of desire. It is hard to feel attractive or aroused when providing day-in, day-out care for someone with dementia. Guilt about placing one's spouse in a nursing home can also dampen sexual desire.

Therapists, particularly geriatric psychologists, can help make sense of these issues and how to resolve them. Religious or spiritual advisers may be another source of counsel. The Alzheimer's Discussion Forum can be a solid source of support and suggestions in these situations. In addition, the Family Caregiver Alliance offers valuable resources, and the Alzheimer's Association has local chapters and more than 1,500 support groups nationwide.

Sources and Additional Reading:

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