Sex and Dementia: Shrouded by Taboo

A man with Alzheimer’s and his wife of many years finish lovemaking when he rolls over and tells her, “You’d better hurry up and get your things because my wife will be home soon.”

Sounds like a joke, but it’s at least one woman’s jarring reality relayed by the education director of Alzheimer’s Association Colorado Chapter. Whenever I mentioned writing a sex and Alzheimer’s story, many reflexively joked, “You mean there’s a link?” Even a nationally renowned sexologist with expertise in chronic illness responded to my request for his take on the topic with: “I like one and not the other.” Other jokes ranged from a gag about a wife’s Alzheimer’s or syphilis diagnosis to a proposed headline of “Honey, Did We Do It Yet Today?”

The funny thing is some people with Alzheimer’s do forget their randy romp, immediately pressuring their partner for another round—which might be fun in another time and place, say the exhilarating days of lusty romance when your lover didn’t call you by another’s name, forget to wipe himself or brush her teeth, or forget how to pleasure you or even that he should. Maybe before your life partner began slipping away from all that bound her to work, community, identity, and to you. Before you morphed into caretaker or parent to your heart’s desire.

With Alzheimer’s dementia, a brain disease of loss and loneliness, your only certainty is now, and that ground can shift at any moment. Talk about learning to Zen it. Really, you have no other choice if you’re the one afflicted, dropping pieces of your mind and daily functioning until the entirety of your needs—mundane and essential—rests on the tug of another’s goodwill and baggage.

As liberated as Americans appear given today’s hyper-sexualized culture, it’s the baggage of retro myths that looms scariest to those of us who choose the dignity and respect of sexual personhood no matter how ravaged our memory. Clinical sexologist Judith Steinhart says, “We all fear loss of control as we age or become ill and wonder who will make decisions for us, with whose needs in mind.” Spanning some three to twenty years, Alzheimer’s strips away all you’ve built over a lifetime down to your moment-to-moment core needs. Being dependent on others, who may choose to protect you from yourself as they would a horny teenager, can be the ultimate assault.

Another funny thing about sex and Alzheimer’s is that it touches upon so many hot button issues: the right to privacy and pleasure, sex outside of marriage, homosexuality, gender stereotypes, monogamy versus infidelity, sexual exploitation versus consent, masturbation, pornography, and icky denial over our parents, the elderly, or those with disabilities desiring or doing it. If we’re sexual beings from cradle to grave and the brain is our biggest sex organ, could “Alzheimer’s sex” be a cultural flashpoint? Ground zero, who wins when the absolute of religion and tradition clashes with the continuum of sexual sovereignty and human rights?

As we live longer and baby boomers creep into old age, long-term residential care is changing the American landscape. Most admitted to such facilities have dementia, with Alzheimer’s being its commonest cause. Alzheimer’s Foundation of America board member Donna Cohen reminds us in an advice article for caretakers: “Individuals with dementia have lived a lifetime with their sexuality, many years longer than they have lived with their dementia.” She adds that we all vary widely in our sexual experience, as does the way dementia affects that experience. So varies our response to Alzheimer’s intimacy.

In the film Away From Her, Julie Christie’s character withers in an Alzheimer’s care unit after her new beau and fellow patient is taken away and her cogent husband works through his pain to reunite them. Real life stories of extramarital “coupling” are remarkably common. In 2006 Justice Sandra Day O’Connor left the Supreme Court to care for her Alzheimer’s stricken husband, ultimately blessing his love affair with a resident who drew him back from deep depression. Though a relatively young woman I interviewed is supportive of her husband’s new sweetie, she’s still raw from friends asking, “How did you feel when you saw him holding hands?”

Author Melinda Hennenberger reports a different, devastating response in her 2008 Slate feature An Affair to Remember. An adult son tore his virile ninety-five-year-old dad, Bob, away from his eighty-two-year-old girlfriend, Dorothy, after finding them in bed—“She had her mouth on my dad‘s penis! And it’s not even clean!”—and after the vigilant assisted-living staff failed to keep the two Alzheimer’s patients from pleasuring each other. Sexual bonding had sparked new life in Bob and Dorothy, charmingly improving each other’s appearance, spirits, even memory. And forced separation would’ve killed Dorothy—who had become depressed, lost massive weight and was hospitalized for dehydration—if it weren’t for merciful memory loss, according to her doctor who calls their story a “twenty-first century Romeo and Juliet.”

“Family can be a big barrier to a person being able to lead a life that they would choose,” says Amelia Schafer, who teaches caretakers, including spouses, adult children and nursing home staff, as education director for the Colorado chapter of Alzheimer’s Association. Concerns over consent when a disease compromises the mind are real, but can be assessed by caretakers through communication or observation. Though the pros of sexual connection overwhelmingly outweigh the cons—evidenced by dramatic changes in behavior and demeanor, such as a person going from screaming out to serene—it’s hard to get past the biases and assumptions of what’s best for someone else.

Published research on sex and dementia is scarce and mostly centers on “inappropriate” sexual behavior. But Schafer suggests what causes problems is not the patient but those around them acting on myths and misinformation about what place sex holds in our lives. “Alzheimer’s strips away your protective filters until all that’s left is the person’s essence and core and pure reactions of that core,” says Schafer, who as part of a pioneering state task force helped create investigative guidelines for resident intimacy and sexual behavior. “Often you see someone hug a perfect stranger because they’re happy and they want to share that joy. I always say, ‘Don’t bend over in the Alzheimer’s unit because you’ll get goosed.’ People are so in the moment.”

Seeing how sex remains a taboo topic, Schaefer distinguishes between sexuality and intimacy in her certification curriculum for health professionals, which pushes them to see beyond personal values to patient needs. “Many think that parents in your care, like children, are not sexual. They can’t go there,” she says. Focus groups show that health providers “don’t see themselves as being part of someone else’s sex life, that the need to complete a sex act, versus the need for intimacy, is ‘beyond the realm of my job.’”

However, policy at the Hebrew Home for the Aged at Riverdale, New York, foundationally links intimacy and privacy to sexual experience and awareness, stating it is “the function and responsibility of staff to uphold and facilitate resident sexual expression.” Sex here clearly means more than “penis in the vagina” and is not seen as a behavior but as an expression of need and quality of life. The staff officially embraces the language of “pleasure” and “sexual gratification” as central to the larger rights and needs that make us human, including the dignity of sexual autonomy and self-determination.

“You don’t stop being human because of a diagnosis. We cannot deny basic human rights and needs because of a brain disease,” says Robin Dessel, Director of Memory Care Services at Hebrew Home, who speaks nationally on consent and capacity as being decision-specific versus a general domain. “An Alzheimer’s diagnosis isn’t a blanket verdict of incompetence. You don’t lose your rights and ability to make choices. For a lot of staff it’s a huge leap, especially with dementia when patients have lost the ability to toilet themselves…yes, you’re responsible for toileting needs, but they have choices with intimacy needs,” she explains.

“Dementia is so foreboding and insidious, it’s critical to uphold rights, pleasures, and life’s choices, especially so that everything you worked for in your life to build does not fall away,” Dessel says. “Memory impaired means out of context, no sense of person, place, time; you’re very lost. Those with dementia struggle to live in this world as we struggle to understand and reach them in theirs. Sexual expression is often the last gasp, connection, lifeline.”

Dessel jokes, “We don’t have a Woodstock going on. But we have an awareness that human needs don’t fade away when placed in a home.” That respect extends with oversights to all exclusive (for assessing consent) bonds, homosexual as well as heterosexual, within or outside of marriage. It also includes privacy for masturbation and access to porn. “There’s a very real and rising need to integrate sexual rights within the realm of healthcare,” says Dessel, who coproduced the nationally acclaimed DVD Freedom of Sexual Expression: Dementia and Resident Rights in Long-Term Care Facilities, which portrays diverse Alzheimer’s couples whose lives blossom in sexual bonding, consummated or not, plus a husband denied privacy with his wife because of her alarmed response to his overtures.

The Hebrew Home leads today’s industry movement from clinical to person-centered care, but its progressive sexual culture can still astound, given its grounding in Orthodox Judaism. Dessel explains that their rabbinical influence puts foremost the rights, needs, and life pleasures of anyone in the later phase in the continuum of life. “We’re blessed by that sanction. If you don’t support the human spirit, that’s gone whether or not you’re walking or sitting at a table. If the human spirit dies, we lose the battle. You can keep physiology alive, but personhood is lost.”

A year and a half ago Sol Rogers, now ninety, was losing his wife of sixty-one years to advanced Alzheimer’s and himself to depression and shakes. He was on the verge of a nervous breakdown. Rita, now eighty-six, could barely move her arms or legs. She couldn’t talk or recognize him and would scream and yell in agitation. Sol says he got an idea and believes the idea came from God: though most nursing homes don’t allow even spouses privacy for fear of exploitation or other prejudices, he asked the staff at Briarwood Healthcare and Rehabilitation Center in Needham, Massachusetts, to move Rita over to one side so he could get into bed with her and “love her up.”

Sol says he enjoyed it so much he immediately lost his depression and shakes and became a new man. Everyday since he closes the curtain and for two hours he cuddles, kisses, sings, and constantly tells Rita how much he loves her. And Rita, “other than her memory, acts like a normal person.” Both Sol and Rita recovered dramatically, so much so that his doctors and Alzheimer’s Association have called it a miracle. “She began to understand every thing I said,” Sol explains. “I told her jokes and she began laughing. She doesn’t remember anything so I’m able to tell her the same jokes over and over again to get her laughing. My wife is now a happy woman and I’m a happy man.”

Though Sol’s story has made The Boston Globe and CNN, he’s frustrated that he knows of no one following in his footsteps. He yearns to leave the legacy of healing touch, to know that other people have done what he has done. “I just can’t understand when knowing that it does so much good why others don’t want to do it,” he says. “Male or female, it’s something everyone should try.”

Call it intimacy or sexuality, but the giving and receiving of affection, affirmation, pleasure is a needed legacy no matter what our age, mental or physical ability, marital status, sexual orientation or gender identity. Funny how so many could find that threatening.

Author’s note: This piece was originally published on RH Reality Check in 2009.