En español | A nursing home aide discovers a Kentucky couple, who aren't married to each other, naked in the same bed together.
A woman in Iowa complains when her roommate's husband, who doesn't live in the facility, climbs in his wife's bed to snuggle and, she claims, have sex.
A man likes to fondle fellow residents in his Minnesota dementia-care unit; nobody assesses whether the women invite or welcome the touch or are being assaulted.
As if moving aging parents into a long-term care facility wasn't painful enough, now comes this uncomfortable twist: getting calls about their sex lives there. (Remember when roles were reversed when it came to fretting about sex drives?)
In the wake of several high-profile cases, facilities — eager to avoid liability — have begun to develop guidelines that preserve residents' right to pursue sexual pleasure in privacy, while protecting them from unsafe, unwanted or abusive situations. So far only about a quarter of facilities have policies on intimacy and sexual behavior, according to a 2013 survey by AMDA — the Society for Post-Acute and Long-Term Care Medicine. Almost half said that developing a policy was "planned" or "uncertain."
"The nursing home field is more highly regulated than any other, but there are almost no rules regarding sexuality," says Gayle Doll, director of the Kansas State Center on Aging and author of Sexuality & Long-Term Care. She defines sexual expression as anything from compliments to touch to sex. "More facilities are becoming enlightened to the fact that this is something people are thinking about, and maybe they should find ways to help people become comfortable."
Indeed, attraction, hugging, flirting, fondling and, yes, sexual relations know no expiration dates. "This is a time of life where many people return to a certain romance of what they were like in their 20s. You can no longer jump out of planes, but you can still generate excitement in your life," says geriatric psychiatrist Ken Robbins, a clinical professor at the University of Wisconsin-Madison. Social connections and human touch help ward off the depression and loneliness that old age and institutional living can bring, he adds.
Many shades of gray complicate sexual issues in nursing homes
More than half of nursing home residents have Alzheimer's disease or another form of cognitive impairment, according to the Alzheimer's Association. "Some people with dementia may become disinhibited," Robbins adds. "And in one type, frontotemporal dementia, disinhibition shows up before other cognitive issues, so the person can still think reasonably well. In a place that's not very exciting, he or she may be looking for ways to have fun and have something to look forward to each day." Like suggestive banter with the new gent in the dining hall, for example, or flirting with the lady in room 206.
Are people able to consent to sex if they can't balance a checkbook, or if they can barely speak? Or is sex more an impulse akin to eating, a pleasurable appetite that one retains the ability to indulge? Who gets to decide what's safe and appropriate?
Couplings in a nursing home seldom involve just two people. Nonresident spouses and adult children often make decisions for the person. Many simply don't like to think about Mom's sexuality, or family members might disagree about what's best. "Usually the family members are the ones who make a fuss if they don't like what's going on," Doll says.
From any angle, one of the sadder recent cases unfolded at the Concord Care Center in Garner, Iowa. In 2014, former state representative Henry Rayhons, now 79, was charged with third-degree sexual abuse — for having sex with his wife, Donna Lou. The facility said her Alzheimer's made her incapable of giving consent — a claim echoed by her daughters from a previous marriage. (Donna Lou died the week before her husband was charged.) In a statement his family said, "Accusing a spouse of a crime for continuing his relationship with a spouse in a nursing home seems to us to be incredibly illogical and unnatural, as well as incredibly hurtful." In April a jury found Rayhons not guilty.
Institutional and personal bias
Staff members sometimes disapprove or are repelled by the idea of sex among older adults, Doll says. Administrators often decide it's easier to ignore or actively discourage sexual expression. In a 2011 case, a man in a Keystone Communities memory-care unit in Minnesota fondled six women. Rather than launching an assessment to determine whether any cases were consensual, all kissing, caressing and nudity in public areas was banned. The state cited the facility for failure to report possible abuse and for not having staff training or policies in place.
"It's inappropriate to decide you're just not going to allow anything to happen," says Robbins. "But it's also inappropriate to say it isn't complicated. You have to have some way to evaluate each situation."
Guidelines are warranted even for behaviors as innocuous as kisses on the cheek. "If the person kissed feels uncomfortable, we have a problem," says Rhonda Simmonds, senior vice president of customer service for Trilogy Health Services, a Kentucky-based care chain.
What's changing: Compassion, creativity and lots of conversation
Many administrators are finding inspiration in the Hebrew Home at Riverdale in New York, which was the first to create a sexual expression policy in 1995. Its pioneering ideas are leading changes like these:
A broader definition of "whole person care"
Compassionate policies start with acknowledging that older adults still have sexual needs, including the very basic human need for touch.
The Hebrew Home's guidelines distinguish between crime, sexual abuse, inappropriate sexual activity (such as hypersexuality in someone with dementia) and a real relationship. Cognitive impairment isn't considered an automatic reason to deny a relationship.
Homes usually apply one of two principles when deciding the appropriateness of sexual contact for someone with dementia, says Evelyn Tenenbaum, a professor at Albany Law School and Albany Medical College who specializes in health law, bioethics and civil rights. Using "substituted judgment," the most widely used standard, you look at the person's previously held values and decision-making in determining what they'd choose now, such as an extramarital affair. Using "best interests," preferred by ethicists and dementia experts, you consider what's good for the person as he or she is now, ignoring past values and taking into account that personalities can change dramatically in dementia.
It's not unusual for someone with Alzheimer's to develop a comforting, beneficial attachment to a fellow resident and forget the nonresident spouse, for example (see sidebar). But conundrums abound. Tenenbaum gives the example of a gay man who has lived his life in the closet and begins a gay relationship with a fellow resident after developing dementia. He seems happy, but his wife and children are confused and withdraw. What happens when the interests of a cognitively-impaired resident collide with the interests of his or her family?
"Unfortunately, we have to go with what the family says," says Simmonds of Trilogy Health Services. "Maybe it's not right for the resident, but the family has the final say if they're the responsible party and have power of attorney."
At the Hebrew Home, the same staff consistently cares for a small number of residents. This way, they get to know them and can act as their advocates, Doll says. They can tell distress from happiness even in someone who's nonverbal, for instance, and better determine consent.
Privacy accommodations and assistance
Examples have included offering a double bed, rather than two singles, to a married couple; placing mattresses on the floor; and using "do not disturb" signs. Aides tell of filling Viagra prescriptions and providing personal lubricants, porn magazines or Fifty Shades of Grey. Staff members are taught to knock and pause before entering a room.
More staff training
Just an hour's exposure to this once hush-hush topic "works miracles," Doll says. After a recent presentation at a Mennonite-run home, she says she was surprised to hear a staffer say, "I wish you'd come back and cover LGBT issues because we'd like to be more enlightened about that area."
Among the staff training topics recently begun at Florida-based Sonata Senior Living is a decision tree to help determine whether someone has the ability to consent to and participate in a relationship.
More family education
Looping families into the conversation helps, too, even if they don't want to hear it. "Orienting families in advance [about sexual policies] helps to plant the seed if it comes up later," Simmonds says. "It doesn't mean it always helps when it occurs. It can still be a shock. But that's the ideal."
Paula Spencer Scott is the author of Surviving Alzheimer's: Practical Tips and Soul-Saving Wisdom for Caregivers.