For a society in which the topic of sex is anything but taboo, we are shockingly silent on an aspect of sexuality that touches millions of lives. It has to do with sexuality and dementia, a condition that currently affects nearly seven million Americans and is expected to affect more and more in the future.
For some patients, dementia robs them of all sexual desire, leaving their partners feeling frustrated and bereft. For other dementia patients, sex becomes an obsession, so partners feel harassed or even afraid—or perhaps guilty, because one has to ask the question of whether there’s any such thing as “consensual” sex when one partner has dementia. And unfortunately, there’s very little help available for people facing these quandaries.
“Patients and their partners have been virtually abandoned by an entire medical system that has provided little to help them with sexuality as it relates to dementia. That’s appalling,” I heard from Douglas Wornell, MD, medical director of the Behavioral Wellness Center at Auburn Regional Medical Center in Auburn, Washington, and author of the new book Sexuality & Dementia: Compassionate & Practical Strategies for Dealing with Unexpected or Inappropriate Behaviors.
Dr. Wornell, who has participated in the treatment of more than 20,000 dementia patients in the past 10 years, gave me straight and insightful answers to some difficult and delicate questions…
Q. Many dementia patients lose interest in sex. Why does that happen and what is the likely effect on the healthy partner?
A. Sexual appetite is regulated largely by testosterone in both men and women. Testosterone decreases for everyone as part of normal aging. But when there is a decrease in brain cells, as occurs with dementia, testosterone levels are even further diminished—causing a double whammy. For most dementia patients, this brings a reduction in sexual desire. In addition, certain drugs commonly used to treat dementia can reduce libido even further.
Of course, this can be very frustrating for the healthy partner who still loves and is attracted to the person with dementia. I find that once the physiological connection between dementia and loss of libido has been explained, that hurtful sense of rejection lessens and the healthy partner is better able to appreciate more subtle types of togetherness and emotional connection.
Q. Some dementia patients instead become hypersexual. What is the reason for that?
A. An estimated 7% to 20% of dementia patients do develop problematic sexual behaviors. Some patients experience normal sexual drives but at inappropriate times or places, while others experience hyperarousal. They become fixated on the act and can’t be redirected, so they constantly try to get their partners to have sex or make inappropriate advances toward others. The reason is that, despite the decrease in brain cells and testosterone levels, there are other issues that can override that. The most common is the disintegration of the frontal lobe, which takes away inhibition. Also, lesions that develop in the pleasure centers of the brain can create a hypersexual state. And in some cases, antidepressant medication contributes to hypersexuality.
Q. What can the healthy partner do if the partner with dementia becomes too sexually demanding?
A. It’s understandable that the healthy person may feel intensely uncomfortable with the situation because, even when love and attraction are still strong, he or she may not want sex nearly as often as the hypersexual partner does. And sometimes, given the personality changes that accompany dementia, the healthy partner may feel as though sex is happening with a stranger. It helps if the healthy partner can come to understand that physical intimacy and other expressions of closeness are among the very few ways that a dementia patient has left to communicate. Although the higher-level cognitive capacities necessary for communication of ideas are gone, the patient’s emotional needs and physical desires remain.
That said, safety is number one. If a patient becomes sexually aggressive to the point of using physical force to get what he wants, the partner needs to do whatever is necessary to stay safe, even if it means calling 911 or considering whether it’s time to place the patient in a care facility.
Q. What if the dementia patient behaves in an overtly sexual way toward an outsider—for instance, when out in public?
A. Generally the best approach is to try to calm the patient down, briefly and discretely explain the situation to the outsider (“Ed has Alzheimer’s and cannot understand that his behavior is inappropriate, so please excuse us”), then remove the patient from the situation. Unfortunately, there is no specific treatment or therapy that can reduce the likelihood of such episodes. However, when the healthy partner understands the nature of the disease and the underlying personality changes it brings, it’s easier to plan ahead and avoid the types of situations that might trigger episodes.
Q. Is it ethical to have sex with a person who has dementia? Can a cognitively impaired patient truly be considered a “consenting adult”?
A. I would never discourage sex if physical intimacy has been a regular part of a couple’s routine. For one thing, changing a patient’s routine sometimes can make the dementia worse. Also, sex can be a comfort to both partners as they navigate the unfamiliar emotional terrain of dementia. On the other hand, if the healthy partner finds it disturbing to have sex under such circumstances, there’s no reason to feel guilty about bringing the sexual aspect of the relationship to a close.
Q. What are the ethics of the healthy partner turning to another healthy person for sex and love outside of the marriage?
A. That question is very personal, and each individual needs to answer it for himself—but that’s not to say the decision should be made in isolation. I encourage healthy partners to speak with those they trust about their feelings. Friends and family are one option, but they may have a biased view or be too close to the situation to be objective. Joining a dementia support group and/or seeking counseling from a therapist with expertise in dementia issues can provide invaluable insight, perspective and support.
