Alzheimer's / Dementia

4/27/2022 | By Terri L. Jones

In the third of our series on seniors and intimacy, we look at the realities of sexuality and dementia. Does desire fade? Is physical enjoyment a thing of the past? Can a person with dementia still enjoy physical closeness?

Sexuality can be uncomfortable to talk about, no matter how you slice it. But in the context of dementia, this subject really makes people uneasy. Many prefer to bury their heads in the sand rather than even acknowledge it. In fact, at a Caregiver Resource Centers of California conference, partners and caregivers of those living with dementia were asked if any professional or support group had ever addressed the issue of intimacy with them. Each said the subject had never even come up.

Even if you’re not the partner, caregiver, or loved one of someone living with dementia now, you may be in the future. That’s why it’s so important to understand how dementia may impact a person’s sexual needs and behavior and how to manage these changes.

The interplay of sexuality and dementia

When a person’s memory starts to decline, sexual desire doesn’t always go down with it. According to a 2018 study published in the Journal of American Geriatrics Society, 59 percent of men and 51 percent of women who had partners and were living with dementia were sexually active with their partners. These study participants viewed their sexuality as an integral part of their lives. In fact, many said that they wished they were intimate with their partners more frequently.

Although many people living with dementia continue to be interested in intimacy, their needs and behavior may change. The disease or the medications they are taking may affect their ability to perform. Similarly, fear, worry, depression, or low self-esteem may negatively impact their sex drive.

Conversely, particular types of dementia may cause them to become less inhibited, express their sexual interest more overtly and sometimes act inappropriately, like touching someone without consent or undressing in public. For some people with Alzheimer’s, this behavior is not always sexually motivated and can sometimes be satisfied with a hug, reassurance, or extra attention. Bottom line, it’s important to remain calm and not overreact to the behavior.

Often, partners of people with dementia will experience changes as well. As a result of fatigue and frustration from caregiving responsibilities, they may pull back physically and emotionally from their partners and not desire sex as often or at all.

“I became more of a caregiver and less of a romantic partner,” one woman told the Family Caregiver Alliance. “Itʼs very hard to be sexual when you are acting like the mother.”

As memory fades, a person living with dementia may forget the strong feelings they have for their partner. That absence of feeling can make the sex perfunctory and meaningless for the other person, explain the Alzheimer’s and dementia experts on BeingPatient.com. Or the spouse may feel they don’t know their partner anymore because of dramatic changes in personality.

Traveling different paths to intimacy

couple touching hands photo by Goldenkb Dreamstime. In the third of our series on seniors and intimacy, we look at the realities of sexuality and dementia. Does desire fade? Is physical enjoyment a thing of the past?

Partners say that working to maintain intimacy for as long as possible has its rewards: “It became a time of connecting, a time of reassurance, a time of pleasure; it was a time when things felt normal when nothing else felt normal,” one spouse told the Family Caregiver Alliance. “Our life was unraveling, and being sexual with each other was a time that felt good.”

However, when sexual interest or the ability to reciprocate intimacy declines for either party, couples may need to find new ways of sharing closeness. Family nurse practitioner Michelle Grigaitis-Reyes, who specializes in memory and cognitive disorders neurology, told BeingPatient.com that any form of touch, including hand or foot massages or simply holding hands, can be an effective way to connect with your partner. She also suggests activities like singing, dancing, and going for walks or car rides as ways to bring couples together.

One husband, whose wife had always been very meticulous about her appearance, went so far as to visit a department store cosmetics counter to learn how to apply his wife’s makeup for her. A seemingly small gesture like this is highly intimate and can create closeness.

The spouse of the person with dementia may also need to explore new avenues to fulfill their sexual needs. Many partners of those with dementia can satisfy themselves sexually. Some may seek companionship outside the relationship. Ideally, couples should have a conversation shortly after a dementia diagnosis to agree upon what is acceptable in their relationship, advises geriatrician Dr. Nicole Didyk, founder of the blog and YouTube channel The Wrinkle.

When new love blooms

The healthy partner isn’t the only one who might forge new relationships after a dementia diagnosis. In an uncomfortable twist on sexuality and dementia, the person with dementia, who may be living apart from their spouse in a care facility, forgets that they even have a spouse and may innocently pursue an emotional and/or physical relationship with someone new.

That’s what happened with Supreme Court Justice Sandra Day O’Connor’s husband, John. Years after his Alzheimer’s diagnosis, John O’Connor went to live in an assisted living facility and, “forty-eight hours after moving into that new cottage he was a teenager in love,” their son, Scott, told CBS. Rather than being jealous or trying to keep the new couple apart, John’s wife of 55 years was thrilled that he was happy. While Justice O’Connor visited, the new couple held hands on the porch swing.

While this situation can be a tough pill to swallow, experts say that accepting a new relationship can be invaluable for the person with dementia, who may not otherwise be getting the affection and touch they need in a nursing home or assisted living facility. (Before choosing a nursing home or assisted living facility, it’s important to learn its policy on physical relationships between residents.)

Caveats on sexuality and dementia

Whether between established partners or new ones, intimacy must be mutual for both parties. In the case of dementia, consent isn’t always clear-cut.

If you have been with your partner for a while, you may be able to recognize signs of discomfort, suggest the experts at the Alzheimer’s Association in the United Kingdom. “A person with dementia who cannot express their wishes verbally, may consent to sexual activity through non-verbal signs. Physical arousal alone is not consent. As their partner, you should feel confident that you can recognise non-verbal consent before you start any sexual activity.”

Between two partners with dementia, VeryWellHealth.com suggests questions that can help caregivers determine if the relationship is consent consensual. These questions include:

  1. Do both people try to find one another to spend time together?
  2. Do both express a desire for sexual intimacy?
  3. Do they seem happy together?
  4. Are they each able to say “no” (verbally or nonverbally) to sexual interaction and indicate activities with which they are comfortable/uncomfortable?
  5. Do they have the ability to report unwanted touching or contact, as to a supportive person?
  6. Does the relationship appear to improve both partners’ quality of life?

Navigating the new roads of sexuality and dementia can have its twists and turns, but it can also have great rewards. Be sure to have friends to talk to, but also professionals who can provide valuable advice and support along the way.

Check back soon as we explore nursing home and assisted living policies on sexual relationships between residents.

Terri L. Jones

Terri L. Jones has been writing educational and informative topics for the senior industry for over ten years, and is a frequent and longtime contributor to Seniors Guide. She also writes for many other local magazines and publications.

Terri Jones