Sex and Dementia: Shrouded by Taboo

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Sex and Dementia: Shrouded by Taboo

Lara Riscol

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.

Editor’s Note: This is part of a series of articles on sexuality
and aging, co-produced by the National Sexuality Resource Center and RH
Reality Check. Read them all!

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.

Sex. Abortion. Parenthood. Power.

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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
, 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

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

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.”

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. “
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.

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