Does Love-Making Stop When Dementia Starts?

I was giving a menopause talk the other day and as it often happens when I talk to small groups of women, the lecture morphed into a conversation. That is to say, that people in the audience shared their own stories—low libido, vaginal dryness, hot flashes, to name a few.

We had spent the better part of the hour talking about the history of hormone replacement therapy and the current guidelines—most it was research reported in my recent book, AROUSED: The History of Hormones and How They Control Just About Everything. (The book covers more than menopause, but that was the topic for the afternoon.)

But here’s what struck me: As I was walking out of the conference room, a 78-year-old woman—the oldest in the audience by far—approached me to say that her sex life was nearly as good as ever. She and her husband still have intercourse at least once a week—not as active as they were a half-century ago but going strong enough. The flames of attraction are flickering.

And yet, for an increasing number of elderly couples, the issue is not so much about sex drive or partnership, but whether to maintain a physical intimacy when a partner shows signs of dementia.

Until now, this has been a topic considered taboo.

“The lack of basic information about sexual behavior, function and desires in this growing population is a problem,” said Stacy Lindau, a professor of obstetrics and gynecology at the University of Chicago and director of WomanLab, a web-based platform for information about sex and aging that offers resources about sex and dementia.

Because of the dearth of information, Lindau’s team conducted one of the first nationally representative sex surveys of the elderly, including 3,196 adults. The latest results, published in the September issue of the Journal of the American Geriatrics Society found that more than half of home-dwelling people with dementia and who also had a partner were still having sex.

Dr. Monica Christmas, a gynecologist who works with Lindau and directs the Menopause Program at the University of Chicago, told me that years ago an elderly couple came to see her regarding painful intercourse. The wife was showing signs of Alzheimer’s disease; she often didn’t recognize her husband. Christmas worried about the ethics of it all: Was the husband forcing himself on his wife? After a lengthy discussion, she didn’t think so.

“You have this man taking care of his wife, someone he was married to for 40 years, and she’s not the same person as she was but he’s accepting her for who she is,” said Christmas. “In an innate sense, somehow the intimacy brought her back to the wife he loved, for a brief moment you feel like you’re the couple you used to be.” And she added, would there be something in the intimacy of the moment, something innate, that resonated with the patient?

For now, many of these questions are unanswered—and may continue to be unanswerable. But they are ones that need to be addressed. Lindau’s study is a step in the right direction. Or as she added, “Our study does point to the potential value of adding sexual life planning to advance directives. The idea of sexual advance directives would enable a person to both say what they'd want in terms of a sex life with dementia and to say what would be acceptable in terms of a spouse having an extra-marital sexual relationship.”