When Dementia Is Involved, How We Balance Sexual Autonomy With Safety

As of late, it feels like discussions about sex aren't just acceptable—they're starting to be encouraged, whether with your partner, doctor or friends. Because everybody does it, right?

Well, maybe there's one group we tend to turn a blind eye to.

As the world mourns actress and comedian Betty White and celebrates her unapologetic reminders that sexual needs and expression don't diminish with age, it's unclear whether those progressive attitudes extend to the older adults in our own lives.

The concept of sex between older adults often serves as a punchline, a curiosity and a concern all in one. But when the concept of dementia is introduced, the conversation becomes even murkier. How can we balance sexual autonomy with safety?

A care need, not a punchline

Candace L. Kemp, Ph.D., is a professor at the Gerontology Institute of Georgia State University. The position facilitated her work with a student whose dissertation was about intimacy between older adults. In that paper, "We framed intimacy as a care need, thinking about intimacy as having various components, not just the sexual piece," Kemp said.

"I think that it's important to continue to pay attention to issues around sex and intimacy as people age, because there tends to be a lot of ageism and assumptions that the needs change or disappear, and that older adults are not seeking intimacy or interested in sex or sexual activity—and it's just not true," Kemp explained. "When you look at the data on engaging in sex and intimacy, older adults tend to have lower rates, but that often has to do with the fact that there may not be partners, that there's no support. There are a lot of social reasons why that's the case. It's not necessarily because of a lack of interest, although sometimes that can be true as well. But that can be true at any age."

Alisa Grigorovich, Ph.D., is an assistant professor in the Recreation and Leisure Studies Department at Brock University in Ontario, whose work includes a study on depictions of dementia and sexuality in the media and within public policy and professional literature. She says this representation of this population isn't only unfair, it's nonexistent.

"When we read about or see stories about older people and sexuality, and older people with disabilities in particular, it's often the same story over and over and over again," Grigorivich noted. "And it's a very simplified and very negative representation, where people with dementia are always shown as either sexual victims or aggressors. So there's really almost nothing else that exists in the popular imagination.

"When you look at, for example, newspaper articles that link dementia and sexuality, they are mostly really negative," she added. "That kind of singular story then really limits our possibilities of imagining and doing something different, of imagining how it's possible to both protect people living with dementia from the violence that they face, including sexual violence, while also supporting their sexual autonomy, or their right to positive sexual expression—that is, a sexual expression that is pleasurable and uncoerced and something which is voluntarily chosen and wanted."

'When we read about or see stories about older people and sexuality, it's a very simplified and very negative representation.'

As day-to-day function changes, and individuals transition into residential long-term care settings, the issue of balancing intimacy and safety becomes particularly important.

Daniel Reingold, M.S., J.D., serves as president and CEO of Riverview Health, which oversees the Hebrew Home for the Aged, located in the Riverdale section of the Bronx in New York City. He was instrumental in building the organization's Sexual Expression Policy, the nation's first sexual expression policy in long-term care settings.

"We lose some of our senses and we lose loved ones," Reingold explained. "We lose independence and touch is one of the last things we can hold onto. And it's one of the most glorious senses and it doesn't necessarily have to be sexual touch, just touch. So if we can, as a society, support and encourage touch as we grow older, especially when older adults face such a pandemic of loneliness and isolation, then I think we should do that. And so that's kind of the foundation upon which the policies are all premised."

Reingold noted there is more to consider than policy: An accepting mindset within the care setting is essential.

"It's something where they know that the staff will not be smirking, or bringing their own religious or moral values to it," he said. "And so, part of the idea behind it is to have a uniform standard of behavior that is not only expected but demanded of our staff to adhere to."

What is consent?

How do we know if someone can say yes to intimacy, whether in a care setting or in their own home, if their cognitive ability is failing?

"We ask people daily to make decisions," Reingold said. "It's interesting. Every day we'll ask a person who has a diagnosis of dementia whether they want fish, beef or chicken, and if they say beef, we don't second-guess their choice. We ask them if they want to go to a concert or to the museum, and we honor their decision. Why can't we also honor their decision to say, 'Yes, I'm enjoying the company of this person, and I want to be with them?'"

"Remember that people who have memory loss still can make decisions in the moment," he added. "I may not remember what I had for breakfast, but I do know right now that I want a glass of water or that I would prefer some orange juice to apple juice in this moment. And so, we need to be mindful that a diagnosis of dementia does not preclude people from being able to make decisions or to express consent."

Reingold emphasizes it is also essential to take note of unwanted touching or contact by listening to an individual when they express discomfort around another resident and accommodating their boundaries.

Kemp, who studied the negative impact of limiting physical contact between residents of long-term care settings and their families during COVID, found similar importance in maintaining connections in older adults.

"There were a lot of negative outcomes for folks, so I think COVID has really drawn attention to the need for social connection," she said. "And part of that, if you draw the line, make the leap of faith there, is that sex and intimacy are part of that, too."

It is essential to take note of unwanted touching or contact by listening to an individual when they express discomfort around another resident and accommodating their boundaries.

Kemp added that any caregivers involved play a critical role in encouraging positive consent expression.

"Some people who have cognitive impairment [or] different forms of dementia may have some confusion over time, place and context and who people are in relation to them [which impacts] being able to consent," Kemp said. "Even though there is capacity [to consent], I think that takes some training and acknowledgment on the part of whoever is providing care or whoever is supporting them and involved in their lives."

When assessing risk due to an external source (for instance a new romantic partner), Kemp advised being mindful of any behavioral changes or dramatic decision-making that may be out of character.

"Look for things that are not in keeping with how the family member or friend has been over the course of their life," she said. "Be observant and ask questions but also, this is an adult. And so [be] mindful of that as well, thinking about autonomy…an ability to have control over one's life is important."

While accepting that sex exists in the lives of older loved ones may be difficult, Reingold emphasized it is possible.

"I think a lot of adult children think their parents are virgins, which is interesting," Reingold said. "The idea that Mom or Dad had a sex life is very foreign to people and ultimately unpleasant. And so I think my advice would be to recognize that parents are sexual beings, that if there is the possibility for an older parent to have pleasure, we should absolutely encourage that. I remember, one of the greatest heroes of this initiative was the late Justice Sandra Day O'Connor, whose husband didn't recognize her anymore. [Her husband] was in a relationship with a woman in assisted living, and the Justice was all for it because her attitude was, 'He's happy. And he doesn't remember who I am, but he's happy with this other woman.'"

What to apply and how to apply it

Grigorovich recommends rethinking ideas about dementia in general but called for more specific work to be done.

"There's still very little research in this area, in terms of identifying what are more promising practices for how professionals and organizations can balance the need for protection with the support of positive sexual expression," she said. "Certainly all the stigma and the dominant cultural narrative around dementia as something that is extremely feared in our society needs to be challenged. And there are lots of misconceptions and stereotypes about the capacities of people living with dementia and what they can do and can't do, and also how important sexual expression is for quality of life and human flourishing. I think that that really should be the basis for thinking about how to support sexual expression."

Kemp advises adopting the mindset that most people are sexual beings while keeping in mind that the experience of aging varies greatly.

"That need for intimacy and connection continues, and that's a really important starting place," she explained. "It's also really important to think about heterogeneity and how different people are and how different aging is experienced. The older that we get, the more opportunity we have to become different."