When a spouse, parent or other loved one has dementia, their ability to make reasoned choices might vary from one day to the next.
Family members may be used to stepping in when the topic involves finances or medical care. But what about sex?
A few years ago, a court case in Iowa raised serious issues around the idea of sexual consent between spouses when one spouse has dementia. In this case, the wife was in a nursing home and the husband, former state legislator Henry Rayhons, visited her often. What may have happened behind a privacy curtain became a matter debated in court in intimate detail after he was charged with felony sexual abuse. (He was ultimately acquitted.)
Is someone with dementia able to consent to sexual relations? And at what level should family, clinicians or nursing home staff — or for that matter, the courts — be involved in such decisions?
“Research clearly shows that older adults as a whole retain a strong interest in sexual activity,” said Dr. Daniel Marson, director of the Alzheimer’s Center at the University of Alabama at Birmingham. “It may not be expressed in the same way as when they were younger, but that doesn’t mean the desire to be intimate goes away.”
Elizabeth Edgerly, chief program officer for the Alzheimer’s Association of Northern California and Northern Nevada, said it’s very common for people in long-term care facilities to develop close friendships and even intimate relationships.
Levels of expression vary greatly, she said. “How do you define intimate relations? Hugging, holding hands, kissing, expressing warmth, and even sexual intercourse” are all common in nursing home or long-term care settings, she said.
Get Involved – Or Not?
“It’s very challenging for facilities to know what’s the right thing to do. There is no regulation on it — and I don’t know that we want legislators regulating intimate contact between people,” said Edgerly. “I am seeing more nursing homes crafting policies or guidelines for when these situations arise.”
Research clearly shows that older adults as a whole retain a strong interest in sexual activity.
— Dr. Daniel Marson
For adult children already dealing with the stressful transition of a parent to a nursing home, Edgerly noted, “they might not want to deal with, ‘Gosh, we’re moving mom in, she might end up in relationship with someone.’ It can bring up a lot of issues for families.”
Marson said adult children naturally want to make sure their older mother, for example, is protected and not putting herself at risk for sexually-transmitted diseases or potentially aggressive behavior. That attitude is well intended, he said.
“But as in all things, there’s a balancing. You want the older person to have a residual level of autonomy. Perhaps their ability to assess risk or make good decisions is compromised. But how compromised is it? As an older person begins to cognitively decline, their own desire may not be credited at the same level as if they were living independently and age 50, when the children would have little or nothing to say about it.”
‘Sexual Expression Policy’
One nursing home is known as a pioneer in establishing a policy and training staff on how to react to intimate relationships among residents. The Hebrew Home at Riverdale, N.Y., has had a sexual expression policy in place since 1995, said its CEO, Daniel Reingold
“We were aware there were sexual relationships going on, and intimacy is something we wanted to encourage. After all, touch is one of the last pleasures we want to give up,” he said.
“We saw a lot of holding hands, romantic relationships that may not have had sex as a part of it. So we developed parameters for how the staff would deal with it, and protections for those who wanted to be left alone.”
“Obviously, we’ve adapted it along the way as we become more knowledgeable,” Reingold said. Today, staffers there are confronted with situations such as same-sex relationships when the resident might have been heterosexual before.
Technology has also changed the picture. “Years ago we might have been dealing with the right to receive pornography in the mail,” Reingold said. “Today, residents can get it on their iPad.”
Medical advances, too, have influenced the policy. “At one time there was no Viagra, no Cialis to aid sexual performance. There is a whole lot more capability than there was back then,” noted Reingold. “It’s not a stagnant, but a living document that reflects the changing values of our residents.”
Nothing New About Intimacy
Like Reingold, Dr. Cheryl Phillips has been dealing with such issues for years. A geriatric physician who worked in long-term care facilities, she is now Senior Vice President of Public Policy and Advocacy for Leading Age, an elder advocacy group.
“With our growing population of people with dementia, nursing homes are trying to deal with sex issues,” she said. “But this is not a new thing.”
She shared an anecdote from more than a decade ago. “A nursing home called me after encountering a husband and wife having sex in their room. The staff member ran out and said, ‘What should we do?’ I told them, ‘First, close the door.’ These were two mentally-capable people. I said, ‘I think they’ve worked out the issue of consent — they’ve been married for 64 years.’ ”
The consent challenge is muddled for a number of reasons, Phillips said. A chief one is that people with dementia may not remember their spouse.
She recalled a case of a male and a female dementia patient who were in a relationship while both of their spouses were still healthy and living. “Their families didn’t know what to think about it,” Phillips said. “So the providers took the opportunity to talk to the families together. To the husband we said, ‘Your wife thinks he’s you.’ We talked about what the families were and weren’t comfortable with.”
Such conversations can be easier for the healthy married partner, Phillips said. “The spouses can often get past it, but the adult children don’t want to think about their mom holding hands or kissing another man,” she added.
Protocols vs. Privacy
Few care facilities have anything as evolved as the sexual expression policy at the Hebrew Home. Marson said nursing homes “probably need to come up with at least general protocols specific to this kind of activity. With our aging population and the number of people who will be in long-term care going forward, we need guidance for staff, residents and their family members.”
Edgerly also credited the Riverdale home for blazing a trail, saying: “The Hebrew Home was wise to recognize that the facility is their home, and you have a right to privacy in your home. People desire intimacy, and you’re not a weirdo for wanting that.”
Her sense is that staffs “are very concerned about consent.” But there are no experts in the field of ascertaining consent, she said. “Psychologists will help with a capacity evaluation, physicians will weigh in and staffs and families are going to do what makes sense to keep a person safe,” noted Edgerly.
She sees changes coming as a new generation starts to enter long-term care and believes facilities will have to back off from policies that limit privacy and sexual expression.
“That’s all going to change with baby boomers,” she said. “Because they are not going to stand for that.”
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