March/April 2014

Sexuality and Dementia

By Douglas P. Wornell, MD
Today’s Geriatric Medicine
Vol. 7 No. 2 P. 26

Sex and dementia? No pun intended, but for many, these may sound like very strange bedfellows. Yet for me, and anyone else familiar with issues encountered in geriatric and neurological psychiatry, they are a familiar couple.

Sexuality, of course, is an inherent aspect of our humanness. It is necessary for all animal species to survive, and for humans, it is deeply ingrained in each of our identities.

While the degree and nature of expressing sexuality may vary among individuals, there always remains a cultural sensitivity surrounding sexuality in society at large. Rape and sexual assault are among the most egregious crimes. Sexual discrimination and same-sex relationships are at the forefront of current events. Dating websites and advertisements for erectile dysfunction drugs are pervasive on television. In fact, romantic relationships remain among the most psychologically challenging engagements we face.

Whether or not individuals are in relationships, older adults are living longer—and longevity is better in a relationship. Increasing longevity has resulted from advances in health care and nutrition as well as from expanded knowledge of safety and devices. Older adults, along with aging baby boomers, comprise the huge demographic that has been predicted for years. But who could have guessed the implications? A billion-dollar industry promoting health, vitality, nutrition, relationships, and sexuality has emerged as a result.

Pervasive Dementia
Dementia affects a frightening proportion of older adults. Age is the No. 1 risk factor for the many illnesses that are forms of dementia, including Alzheimer’s disease, Lewy body disease, and Pick’s disease. They all involve a progressive loss of brain cells and function. Memory loss is most common initially but mood disorders, psychosis, agitation, or any number of inappropriate behaviors may occur. These changes and the possible need for long term care gradually may change the course of an individual’s, a couple’s, or a family’s lives forever.

For sure, sexuality tends to diminish as dementia progresses, but that alone can be devastating in a relationship. Beyond that, there are some dementia patients whose psychosis, mood disorder, or aggression will take on a sexual theme.

By its very nature, dementia often occurs in relationships that are of a 40-, 50-, or even 60-year duration. Many such couples have experienced one or the other’s heart attacks, cancer, or stroke. Yet little compares to the gradual loss of a partner’s mentality. Over time, intimacy and sexuality become a challenge for both partners but from increasingly different points of view in terms of trust, forgiveness, needs, and desires. As the memory of one fades away, the other is left with only memories.
As already suggested, sexual desire often diminishes as dementia progresses, but aggressive behavior, malignant jealousy, and publicly inappropriate behaviors can and do occur.

Sexual Fallout
When a spouse is affected by dementia, moral and ethical views eventually can come into play. Healthy partners, more and more frequently, are going outside of marriage as the unmet emotional needs begin to increase. In addition to their own feelings of guilt, disapproving family members, friends, or physicians with little awareness of how to deal with this sensitive aspect of life with dementia may exacerbate the problem.

For dementia patients’ partners, family members, and health care providers, I would suggest becoming familiar with the following list when dealing with sexual issues in an individual with dementia:

• Familiarize yourself with dementia, its causes and symptoms, and what to expect over the course of its progression. It will help all involved to better appreciate and respect the stricken individual for who he or she is.

• Sexuality can continue in the face of dementia. In fact, in many cases, intimacy is the only form of communication left in a relationship.

• Learn to adapt to the situation because symptoms such as disinterest or even too much sexual interest will arise as memory loss progresses. The partner must examine his or her own reactions and responses to understand when anger, discomfort, or even fear arise so as to respond and react appropriately.

• Reach out for help. Intimacy, especially in the elderly, often remains private, but dementia may present problems that require guidance and assistance from others.

Long Term Care Considerations
If relationships are the private arena in the struggle with sexuality and dementia, then long term care is the public arena. With increasing frequency, assisted-living and skilled-care nursing facilities as well as older adults’ family homes are walking a blurring line between guarding against neglect and abuse of residents, particularly those with dementia.

Specifically, when it comes to sexuality in long term care, not permitting residents to express their sexuality constitutes neglect, while failing to protect residents from unwanted sexual expression by another constitutes abuse. Abuse may range from criminal predation of a staff member or resident to a simple case of mistaken identity in a confused dementia patient.

Practically, in my opinion, avoiding abuse remains the elephant in the room and generally is addressed by most facilities; otherwise they will be shut down. That is not to minimize the fact that elder abuse does occur, particularly in dementia patients. However, avoiding sexual neglect—allowing for sexuality in a group setting—presents the silent and perhaps most difficult challenge.

How do you allow for sexuality in dementia patients? Where and when can they masturbate? Where does flirting stop and inappropriate behavior begin? Which other patients may they have sex with if they establish a relationship? These are real issues and concerns that are becoming increasingly prevalent.

Consider also the broad range of ethical and moral views as well as administrative views on sexual behavior in demented patients. Many of the staff members are young and may have little experience that prepares them for sexual behaviors in confused patients. Families may have differing religious or cultural backgrounds, giving way to differing views. The demand to fill nursing home beds may exert pressure from corporate mandates on facility administrators, encouraging the admission of prospective new residents with known inappropriate sexual behaviors that are likely to create difficulties.

Administrators and medical directors in long term care facilities should consider the following list to address concerns related to sexual behaviors in dementia patients:

• Train the staff about dementia and what to expect behaviorally, especially when it comes to sexuality. This will help to quickly identify problematic behavior. Sexual behaviors can be spontaneous and unprovoked. Potential victims often are more confused, physically limited, or wander unknowingly into a sexual encounter.

• Patients with a known tendency toward sexual behaviors should be managed with that in mind. This should be reflected in observational quantity and quality, roommate selection, and avoidance of potentially provocative situations.

• Staff members should become aware that while many patients with dementia experience diminished sexuality, it can manifest as flirtation, the desire to masturbate, or the desire to have a romantic relationship.

• Staff members potentially can find themselves in sexual situations in long term care. As with all medical staff, they should be taught appropriate boundaries that allow for compassion without provocation. This especially is important in dealing with confused residents.

• Facility administrators should work with their regulatory agencies to understand state guidelines and develop a well-designed policy and procedure manual regarding sexual behaviors for both staff and residents in the facility.

• While individuals’ emotional reactions vary based on background and experience, appropriate responses to sexual behaviors require professionalism. Any indication of inappropriate behavior on the part of a resident or staff member needs to be addressed immediately to ensure the safety of those involved, after which incidents must be reported to supervisors.

• All new or evolving sexual situations should be reported to responsible family members as soon as they begin. This is not only appropriate but will help avoid a crisis later. Many facilities even front-load potential sexual scenarios at new residents’ admission to prepare families for such a possibility.

In Conclusion
As I see it, the growing buzz surrounding the subject of sexuality and dementia is a testament to the acknowledgment of and respect for older adults in general. In the Seattle area, dementia cafés—public places for patients, families, and caregivers to gather and socialize—are becoming more common. Who would have dreamt of such a thing even 10 years ago?

So what is in store for older adults? Longevity has been extended so that elderly aspects of the human condition, including sexuality, are all around us. Only recently my healthy 91-year-old mother had a knee replacement because we are confident she will live another 10 years. She became a little frisky in the middle of the night from the confusion of the strange environment and narcotics. Although she doesn’t have dementia, the lines of reality can easily blur in advanced age.

It seems that our own lines of reality may be blurring as the landscape changes regarding the elderly, dementia, and sexuality. In time, this combination will become less a matter of strange bedfellows and more a matter of familiar health care as well as social and ethical concern, moving us forward in our understanding of ourselves and possibly even our own strangeness. 

— Douglas P. Wornell, MD, is the medical director for the Auburn MultiCare Geriatric Psychiatry Center in Auburn, Washington, and author of Sexuality and Dementia: Compassionate and Practical Strategies for Dealing With Unexpected or Inappropriate Behaviors.