People living with Alzheimer’s disease and other forms of dementia have the same basic human needs as anyone else. This includes sexual expression, which may be uncomfortable to discuss, but cannot be ignored.
The need for sexual expression is not as simple as others—such as food, drink, companionship, and activity—to enable a senior to fulfill. Every situation is different and depends on a person’s preferences, behaviors, personality, relationship with loved ones, stage of memory loss, and other factors.
This National Alzheimer’s Disease Awareness Month, we’re providing some tips on how caregivers and partners of people with dementia can navigate situations involving sexuality in ways that preserve freedom of choice and dignity and are respectful to all parties.
Dementia and Sexuality
First, it’s important to acknowledge that sexuality is a fundamental part of human existence, and dementia does not change that.
In fact, in a study from the University of Chicago Medicine, published in the Journal of the American Geriatrics Society, researchers surveyed over 3,000 older American adults living at home across a range of ages and cognitive capacities. They found that among people with romantic partners, 59 percent of men and 51 percent of women were sexually active. This included 40 percent of partnered people with dementia aged 80 to 91 years.
But, as the need for sexual expression remains, the way we express that need can evolve over time as someone’s cognitive state changes. Understanding the reasons for these developments and knowing a few strategies for responding can help you to validate your loved one’s feelings and meet them where they are on their journey.
The Alzheimer’s Society gives suggestions for some of the scenarios that partners of people with dementia often encounter:
Decreased sexual interest: “Decreased sexual desire may tend to occur during the early stages of memory loss, when the couple is struggling with accepting the diagnosis and the individual with memory loss might be experiencing depression,” says Rita Altman, Sunrise’s senior vice president of Memory Care & Program Services.
Increased sexual interest: Other times, some forms of dementia can cause a person to express an increased sexual appetite. A partner may not feel comfortable engaging in sexual activity with a loved one who has changed in this way, or they may feel worn out or lose physical attraction due to the duties of caregiving. Do not feel guilty.
Here, make sure to provide affection in a way that acknowledges the person’s needs, validates their feelings, but is comfortable for both of you. Again, you may try other ways of sharing intimate moments, such as sharing a meal, dancing, or reminiscing together while flipping through photo albums.
Disinhibition: Sometimes, a person with dementia will do things that seem to indicate a desire for sex, but are actually entirely unrelated. For instance, when a person with dementia attempts to take off their clothes in public, this might in fact be an indication that they are hot and uncomfortable, or need to use the bathroom. Try to think like a detective and use nonthreatening questioning to discern what unmet need your loved one is communicating. Then, use the Validation Method so that your loved one feels heard, rather than judged.
“It's extremely important to understand that these types of behaviors are caused by the disease and not the person,” says Altman. “Loved ones should try to remain nonjudgmental, not take the behavior personally, and establish a very empathetic and consistent and person-centered plan of care.”
New relationships: One particularly difficult situation for families is when a loved one with Alzheimer’s develops a new relationship at a memory care community with someone who is not their partner. Sometimes, a fellow resident may remind a person with dementia of their longtime partner.
In this situation, try to recognize that this is a result of the disease rather than an act of betrayal. If the relationship is safe and consensual and enables your loved one to feel connected and loved, then it is usually best to try to accept the relationship and support your loved one. Set up a meeting with the leadership at your loved one’s senior living community so that you can talk through your thoughts and feelings and form a plan for moving forward.
Consent: Dementia does not necessarily preclude a person from having the mental capacity to make decisions for themselves and consent to sexual activity. If a loved one with dementia is to partake in any type of physical intimacy, it’s essential to confirm that they are able to consent and that they do so.
This means that they understand the situation, make a decision, and communicate this decision, whether verbally or nonverbally by their body language. Consent is specific to each situation and must be communicated clearly each time.
Every person, family, and situation is different, and there is no single correct way of navigating this very personal issue. For additional support, we encourage you to talk to friends, family, and doctors, and join a caregiver support group to discuss this issue and other dementia topics. For more information on sexuality and dementia, see these resources from the National Institutes on Aging.
Source: Sunrise Senior Living