Sex and Alzheimer’s: A Tangled Web

No conversation about dementia is easy, especially when it regards someone you love. Talking about sex is no piece of cake, either. But any conversation about Alzheimer’s or dementia ought to include sex.

Because sex will very likely be an issue that caregivers have to deal with at some point. A recent patient told me that sex remains a very special connection with her husband, who is in the early stages of Alzheimer's; she looks to preserve that connection as long as possible.

We are sexual creatures all our lives. Alzheimer’s doesn’t change that fact, although it will alter the experience and expression of sex in a relationship—both for the person with dementia and for the partner. It’s better to be emotionally prepared and to have your resources in place than to be taken by surprise by loss or uncharacteristic or embarrassing behavior.

So, let’s talk.

A diagnosis of Alzheimer’s disease is heartbreaking. Its progression is long and unpredictable. There is no cure, although some drugs slow its advance. As one daughter said, “It’s like my father was taken away, little bits at a time.”

Unfortunately, it’s also becoming more common. In 2014, 5 million Americans over 65 were living with Alzheimer’s disease, two-thirds of whom were women. With the graying of America, those numbers will only increase.

You can’t predict the course of the disease or how it will affect your partner’s sexuality. Sex may be something that brings you both comfort, as my patient found. The body has its own memory, and the familiar movements and routines, the physical contact, may be reassuring and helpful to both of you.

But your partner may also become cold and withdrawn, confused and clumsy, or aggressive and uninhibited as the disease progresses.

He or she may lose interest in sex or become unresponsive—neither resisting nor responding nor initiating physical contact. This hurts, and it feels like rejection, even though you know it’s the disease talking. It may help to remember that intimacy comes in many and varied forms—as simple as brushing his hair behind his ears or a reassuring squeeze.

For all of us, touch remains a primal and powerful form of human connection. Your partner may be comforted by gentle, loving touch, and it may be an important way for you to stay connected as well. Hold hands, hug, cuddle, rub his or her back.

As your partner becomes more dependent and childlike, or the burden of physically caring for him or her becomes more demanding, you may lose interest in sex as well. Or you may lose interest in sex with your partner. You may feel guilty about this, but you may also feel frustrated or even turned off by your partner or by the intimate tasks of daily care.

This is normal and understandable. It’s tough to cope with daily life, with the grief of witnessing the transformation and ultimate loss of a lover and life-partner.

But there is another moral and legal morass to be aware of as well as you juggle your own sexual and emotional needs with the changing and sometimes ambiguous needs of your partner. Marital sex has to be consensual, but what happens if your partner no longer has the capacity to consent? Laws against marital rape at that point become murky, as this unsettling story illustrates.

At the other end of the spectrum, people with diseases like Alzheimer’s may lose inhibitions, especially sexual inhibitions. They may strip or fondle themselves in public; they may become sexually aggressive or make inappropriate comments to family, caregivers, and strangers. They may want to have sex, and then forget they just did. They may ask who you are while you’re having sex.

These actions are embarrassing, painful, frustrating, exhausting, and even scary. It’s hard to know how to respond and keep your cool.

Sometimes, your partner may not be acting out sexually at all, but may simply need to go to the bathroom or be wearing clothes that are hot or uncomfortable. You’ll need to assess these needs quickly, while both reassuring your partner, deflecting his or her confusion or embarrassment and dealing with the reactions of others.

Did I mention that you’ll need physical and emotional resources in place before the disease gets too advanced?

You may need help figuring out how to engage and reassure your partner, how to shield others, like grandchildren and caregivers, from inappropriate behavior, and how to maintain your own equilibrium during it all.

To comfort and engage your partner and to maintain intimacy and connection, you could

• Go through old photo albums together and reminisce about the past
• Play music—the tunes you used to listen to together or quiet, soothing melodies
• Take walks together (exercise is incredibly important for both of you)
• Keep children and animals in your lives
• Do simple cooking or gardening projects or maintain hobbies your partner used to love. One woman with dementia can no longer drive, shop, or cook, but she finds release and comfort in the physical activity of caring for her garden. Are there similar activities that could continue to engage and soothe your partner?

And please don’t neglect your own health and emotional well-being. Alzheimer’s disease is long-term, and you’ll have to seek out long-term ways of coping.

• Arrange for regular respite care
• Find a support group of people who are also caring for loved ones with Alzheimer’s. You need to talk with people who understand what you’re going through.
• Find stress-relievers of your own. What soothes and relaxes you?
• Don’t neglect exercise, particularly if you can get outdoors.

After all the years together, you are the one most familiar with and comforting to your partner. The one who knows him or her best. You want to be there for the one you love, but don't forget to put your own oxygen mask on first.