Is it important to understand and respect the sexual needs of people living with dementia? Dr. Douglas Wornell, author of the new book “Sexuality and Dementia”—the first comprehensive book of its kind—says “yes.” He addresses common challenges caregivers face when dementia affects intimacy or causes inappropriate behavior.
My mother, Judy, had vascular dementia from small strokes, and probable Alzheimer’s disease. One day she was found in her memory care assisted living facility in the room of a male resident, sitting down on the edge of his bed with her pants off and her Depends on. The man—a short, portly fellow I knew my mother had eyes for, a man we’ll call “Bill”—was standing in front of her with his pants and underwear off. The staff couldn’t tell what had occurred between Mom and Bill exactly, but the two were “redirected” to other activities, and I was asked to take my mother to the E.R. for an exam. Bill’s family, in turn, was required to hire private aides around the clock.
Many of us who care for a family member or friend with Alzheimer’s disease or another dementia are likely to encounter this kind of situation, or something similar. It can be challenging and upsetting, even if you believe, as I did, that your loved one with a cognitive impairment should be allowed to express their sexuality in safe ways.
Fortunately, family caregivers and health care professionals can now refer to a slim but comprehensive new book, “Sexuality and Dementia: Compassionate and Practical Strategies for Dealing with Unexpected or Inappropriate Behaviors,” by Dr. Douglas Wornell (Demos Health, 200 pages).
Wornell, a geriatric neuropsychiatrist who has treated over 20,000 elders in the past ten years, estimates that 75 percent of people with dementia and their care partners are affected by challenges related to sexual needs and behavior. Problems range from loss of intimacy and emotional connection to hyper-sexuality and inappropriate behaviors. Care partners often hesitate to share their concerns with their loved one’s doctor or with a caregiver support group. Family members caring for a person with dementia at home often put up with disturbing behavior for a long time because they don’t know that anything can be done about it. By sharing the personal stories of real families, Wornell shows how a wide range of challenging behaviors can be addressed successfully.
As Wornell points out, popular books about dementia usually “leap past” the sensitive subject of sexuality “as though it doesn’t exist.” Rarely is sex acknowledged as a natural part of a person’s sense of self, or is physical intimacy discussed as a way for a person with early-stage dementia to stay connected to a partner. As Wornell writes, “with all that these patients have lost, or will lose, isn’t it cruel to ignore their desire, as well as their partner’s needs, for connection and closeness?”
Rarely do we read in dementia care books about family caregivers either feeling pressured by a partner with dementia to engage in sex when they no longer wish to, or feeling devastated because they can no longer share that intimacy with their partner with dementia. Rarely do we read about the challenges faced by adult children advocating for their parents with dementia in situations involving sex and sexuality. A whole range of issues simply gets swept under the rug.
Sexually inappropriate or unexpected behavior, for example, can be dealt with effectively, Wornell says, if everyone who interacts with the person with dementia “listens carefully” to each other and has “a full understanding of the entire situation.” What often happens, however, is that families try to avoid the issue or they get defensive, and facility staff or other health care professionals may be “too busy” to talk to family members about the behavior that’s causing a problem.
My own experience with Mom’s memory care facility was mixed. While I appreciated that the director of the facility was willing to sit down with me and answer my questions about their rules and expectations around residents and sex, I was the one who initiated the conversation. The director and head nurse did not approach me; nor did they offer to include me in any staff discussion about the incident. When I was told that my mother would be required to go to the E.R. for an exam, including a pelvic exam, no one told me whether the pelvic exam was required by law, or whether Mom had the option to not go to the E.R. at all. The aides and nurse on duty did ask me if I wanted to file a police report (I declined).
When I arrived at the facility to drive Mom to the E.R. she seemed fine—perky and smiling, her hair a bit disheveled. I doubted that she had had intercourse, so when I took her to the E.R. I told the rape crisis counselor that I would allow only an external exam. I did appreciate that the doctor checked Mom for any discomfort around her pelvis, as she had osteoporosis and might have suffered a fracture if Bill had actually been on top of her, pressing down. (Later I learned that Bill had erectile dysfunction, making internal injuries further unlikely.)
For Mom’s sake, I hoped that the facility staff would react calmly to further incidents. And part of me hoped that she would still get to spend time with Bill, under supervision. Although consent can be murky between two people with dementia, Mom clearly got a lot of enjoyment out of being with Bill. I just wanted Mom to be happy and safe.
As Wornell points out, policy and procedures around such incidents should be transparent, discussed openly between family members, health care providers, professional caregivers, and facility administrators. Federal and state regulations concerning safety and sexual incidents in elder care facilities should be clear, and discussed with family members when necessary. Whenever family caregivers, aides, and other staff are left out of the discussion, anxiety increases. Wornell’s book—short and readable—is an invaluable resource for anyone preparing for such a discussion.
Types of Dementia and How Sexuality is Affected
“Sexuality and Dementia” covers a lot of ground in a few pages. Wornell offers an overview of different types of dementia (from the most common type, Alzheimer’s disease, to dementias caused by conditions such as traumatic brain injury and AIDS), and how each can affect sexual behavior.
Temporary Conditions that can Cause Delirium and Sexually-Inappropriate Behavior
Wornell also explains treatable conditions that can cause behavior similar to that of dementia, such as delirium that begins over hours or days from a urinary tract infection (UTI), high blood sugar, or drug interactions. A UTI, for example, can cause the person to pay more attention than usual to their genitals.
How Certain Medications Affect Sexual Behavior
Wornell includes a comprehensive overview of how several classes of medication can affect sexual behavior, from medications to lessen the symptoms of Alzheimer’s disease (Aricept and Namenda, for example), to antidepressants and anti-anxiety medications. I learned, for example, that when Mom was diagnosed in her late 60s with “hypomania” (characterized, in her case, by rapid speech), the hypomania might have resulted from taking antidepressants while entering the early stages of dementia. Wornell also explains how certain drug interactions can result in heightened or decreased sexual interest, or inappropriate behavior.
Protecting Safety While Allowing Sexual Behavior
When Mom lived in her memory care facility, I wanted her to be able to enjoy Bill’s company; I felt glad to see the spark in her eyes. At that time I would have agreed with Wornell that “residents should have as much access to the full spectrum of human existence as possible, including sexual activity, if that is their desire.” He says that “a good question to ask upon a visit, when considering placement of a family member, is ‘do you allow your patients to have sexual activity if the appropriate channels and considerations have been addressed?’ ” Staff members should receive training on how to deal calmly with sexual behavior.
Looking back, however, I sympathize more with the director of Mom’s memory care facility, a professional and compassionate woman who told me that she had to balance Bill and Mom’s interest in each other with their safety and the safety of other residents. She shared, for instance, that Bill “had eyes” for six other women, a loosening of sexual inhibition which is quite common with dementia.
“We all love to have someone to crawl into bed with,” she said, “but we can’t have Bill approaching the women here for sex. Even if your mother was not traumatized, even if she welcomed it, other women may not. They may have never been married, may have a different sexual orientation, or may not want to be touched. We just can’t take a chance.” Facilities must on guard against sexual abuse, protecting residents who may be more vulnerable because they are confused. According to Wornell, elder sexual abuse “commonly involves genital injury, as well as fracture and injury to other parts of the body.”
In retrospect, I think Mom was better off having a private aide with Bill whenever they were in the same room. After a few weeks they seemed to forget about each other. I’m not so sure that anyone should have gone out of their way to allow the two of them to engage in sexual activity.
To all of this Wornell would say that each situation is unique, and should be discussed thoroughly and transparently with everyone involved. State and federal regulations related to resident safety should be explained, and a plan of action agreed upon. In addition, any sudden change in sexual behavior should trigger a thorough medical evaluation.
“After all is said and done,” Wornell writes, “hopefully a balance will have been struck between treating an illness, protecting those in harm’s way, and allowing the [person with dementia] to continue on with the fullest access to his or her humanness.”
To learn more about Wornell’s book “Sexuality and Dementia,” visit his website.
As a caregiver or elder care professional, have you encountered these kinds of situations? What do you wish was handled differently?