Can an Alzheimer’s patient with dementia so severe she can’t remember her daughters’ names or how to eat a hamburger consent to have sex with her husband? That’s the stark question raised by the case of Henry Rayhons, the former Iowa state legislator who, as the New York Times reported yesterday, has been charged with third-degree felony sexual assault for allegedly raping his wife, Donna Lou Rayhons, in her nursing home.
Rayhons says the sex was consensual. Clinicians at the nursing home where she resided — she has since died — say that they had determined she didn’t have the capacity to consent, and that they had informed Rayhons of this. Charges of this sort are “possibly unprecedented,” as the Times put it, but the underlying questions “will become only more pressing as the population ages and rates of dementia rise.”
At first, the idea of a patient with dementia agreeing to engage in sex would seem to run counter to established notions of consent. If someone no longer even has legal control over their own care or certain aspects of their day-to-day life, how can they make a decision that requires two fully consenting partners?
But a growing number of advocates for the elderly and the cognitively impaired argue that the only humane approach is to have guidelines that do allow for intimate and sexual relationships involving members of these populations, at least in certain cases. “There’s nothing about being cognitively impaired that means that you wouldn’t necessarily appreciate being connected with other people through both nonsexual means and sexual means,” said Dr. Tia Powell, who directs the Montefiore Einstein Center for Bioethics at the Albert Einstein College of Medicine. It’s a view that’s gaining traction, even among larger organizations like the U.K.’s Alzheimer’s Society and the U.S.-based Alzheimer’s Association.
To John Portmann, a religious studies professor at the University of Virginia and the author of The Ethics of Sex and Alzheimer’s, this debate is part of a much broader array of difficult conversations society is going to have to have now that reaching old age — and, as a result, possibly developing dementia — is a normal occurrence in a large swath of the world.
“Alzheimer’s is really forcing us to think about sex and fidelity in a very new way,” said Portmann. “People didn’t live very long in the ancient world, so this problem never arose. And now people are living longer and longer, and until we find a cure for Alzheimer’s this problem is just going to get more and more urgent.” He raised the example of former Supreme Court Justice Sandra Day O’Connor’s husband, an Alzheimer’s sufferer who became close with another woman, who also had Alzheimer’s, in the nursing home where he resided. “Do we want to call that adultery?” asked Portmann.
“Everybody is talking about the gays and the lesbians and how they’re changing the morals in America,” he said. “I think actually a more profound kind of rebellion against traditional values is happening in the Alzheimer’s community.”
So what does this strange new landscape mean for the concept of consent? Everyone agrees that people with dementia need to be protected from predators, of course. But Powell said that outside these cases, she’d use a few criteria to determine whether a given activity is acceptable: She’d encourage facility administrators to allow any activity that doesn’t raise any flags for abuse, that seems to bring comfort or enjoyment to the individual with dementia, and that isn’t causing significant harm to others.
In theory, it sounds almost straightforward — a utilitarian approach to Alzheimer’s sex. But in practice, say Powell and others, a great deal of stigma and institutional lead-footedness are making this issue more complicated than it needs to be. “People don’t like to think of impaired people having sex or wanting sex,” said Powell — especially when the impaired person in question is their mom or dad. So when a nurse calls a resident’s daughter and says, “Hey, your mom has a new boyfriend in the nursing home. They seem to want to spend the night together — what do you think?’” as Powell put it, the daughter might blanch — and not as a result of a clear weighing of the pros and cons, but because she’s simply weirded out by the idea.
On top of that, many institutions might take a more conservative, or even punitive, approach to these issues simply as an excuse to not venture into such a fraught landscape. “The institution may be worried in some cases more about its own liability than promoting the autonomy and values and preferences of the person in their care,” said Powell.
As a result of all this messiness, there’s “mass confusion” about what should and shouldn’t be seen as acceptable behavior among facility administrators, said Daniel Kuhn, a licensed clinical social worker who has conducted trainings on dementia and sex for nursing homes.“Very, very few nursing homes have delved into this topic because it is so darn complicated,” he said. “It touches on the ethical and moral and legal areas, and there’s no hard and fast tools available to make a determination.”
Part of the problem in developing clearer guidelines, he said, is that no one has data on whether and to what extent workers in these settings agree with Powell (and Kuhn) that Alzheimer’s patients should be granted some level of agency with regard to sex. “I proposed doing a large scale survey of attitudes along ago but it got shot down,” he said in a follow-up email. Instead, he administers his survey — it asks participants to rank their level of agreement with questions like “Residents who have dementia are not capable of making sound decisions regarding participation in sexual relationships” — to staff at the nursing homes where he does his trainings.
“I’ve been talking and writing about these issues for 20-plus years,” he said, “and nothing has been done by any professional organization or government entity to offer any help to people at the local level who are involved in this difficult work.” Powell concurred: while she said she saw encouraging signs of some facilities taking these issues more seriously, “There’s a lot of work to be done.”
Kuhn said he saw the rape charges, whatever the outcome of the trial, as a tragic outcome, and clear evidence that society needs to overcome its squeamishness on this issue. “Most [facilities] have just sort of turned a blind eye until there is some kind of a crisis, and then they scurry around figuring out what to do, hoping it all goes away,” he said. “Except in this case it didn’t go away — it blew up.”