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.

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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
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.

Commentary Sexual Health

Parents, Educators Can Support Pediatricians in Providing Comprehensive Sexuality Education

Nicole Cushman

While medical systems will need to evolve to address the challenges preventing pediatricians from sharing medically accurate and age-appropriate information about sexuality with their patients, there are several things I recommend parents and educators do to reinforce AAP’s guidance.

Last week, the American Academy of Pediatrics (AAP) released a clinical report outlining guidance for pediatricians on providing sexuality education to the children and adolescents in their care. As one of the most influential medical associations in the country, AAP brings, with this report, added weight to longstanding calls for comprehensive sex education.

The report offers guidance for clinicians on incorporating conversations about sexual and reproductive health into routine medical visits and summarizes the research supporting comprehensive sexuality education. It acknowledges the crucial role pediatricians play in supporting their patients’ healthy development, making them key stakeholders in the promotion of young people’s sexual health. Ultimately, the report could bolster efforts by parents and educators to increase access to comprehensive sexuality education and better equip young people to grow into sexually healthy adults.

But, while the guidance provides persuasive, evidence-backed encouragement for pediatricians to speak with parents and children and normalize sexual development, the report does not acknowledge some of the practical challenges to implementing such recommendations—for pediatricians as well as parents and school staff. Articulating these real-world challenges (and strategies for overcoming them) is essential to ensuring the report does not wind up yet another publication collecting proverbial dust on bookshelves.

The AAP report does lay the groundwork for pediatricians to initiate conversations including medically accurate and age-appropriate information about sexuality, and there is plenty in the guidelines to be enthusiastic about. Specifically, the report acknowledges something sexuality educators have long known—that a simple anatomy lesson is not sufficient. According to the AAP, sexuality education should address interpersonal relationships, body image, sexual orientation, gender identity, and reproductive rights as part of a comprehensive conversation about sexual health.

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The report further acknowledges that young people with disabilities, chronic health conditions, and other special needs also need age- and developmentally appropriate sex education, and it suggests resources for providing care to LGBTQ young people. Importantly, the AAP rejects abstinence-only approaches as ineffective and endorses comprehensive sexuality education.

It is clear that such guidance is sorely needed. Previous studies have shown that pediatricians have not been successful at having conversations with their patients about sexuality. One study found that one in three adolescents did not receive any information about sexuality from their pediatrician during health maintenance visits, and those conversations that did occur lasted less than 40 seconds, on average. Another analysis showed that, among sexually experienced adolescents, only a quarter of girls and one-fifth of boys had received information from a health-care provider about sexually transmitted infections or HIV in the last year. 

There are a number of factors at play preventing pediatricians from having these conversations. Beyond parental pushback and anti-choice resistance to comprehensive sex education, which Martha Kempner has covered in depth for Rewire, doctor visits are often limited in time and are not usually scheduled to allow for the kind of discussion needed to build a doctor-patient relationship that would be conducive to providing sexuality education. Doctors also may not get needed in-depth training to initiate and sustain these important, ongoing conversations with patients and their families.

The report notes that children and adolescents prefer a pediatrician who is nonjudgmental and comfortable discussing sexuality, answering questions and addressing concerns, but these interpersonal skills must be developed and honed through clinical training and practice. In order to fully implement the AAP’s recommendations, medical school curricula and residency training programs would need to devote time to building new doctors’ comfort with issues surrounding sexuality, interpersonal skills for navigating tough conversations, and knowledge and skills necessary for providing LGBTQ-friendly care.

As AAP explains in the report, sex education should come from many sources—schools, communities, medical offices, and homes. It lays out what can be a powerful partnership between parents, doctors, and educators in providing the age-appropriate and truly comprehensive sexuality education that young people need and deserve. While medical systems will need to evolve to address the challenges outlined above, there are several things I recommend parents and educators do to reinforce AAP’s guidance.

Parents and Caregivers: 

  • When selecting a pediatrician for your child, ask potential doctors about their approach to sexuality education. Make sure your doctor knows that you want your child to receive comprehensive, medically accurate information about a range of issues pertaining to sexuality and sexual health.
  • Talk with your child at home about sex and sexuality. Before a doctor’s visit, help your child prepare by encouraging them to think about any questions they may have for the doctor about their body, sexual feelings, or personal safety. After the visit, check in with your child to make sure their questions were answered.
  • Find out how your child’s school approaches sexuality education. Make sure school administrators, teachers, and school board members know that you support age-appropriate, comprehensive sex education that will complement the information provided by you and your child’s pediatrician.

School Staff and Educators: 

  • Maintain a referral list of pediatricians for parents to consult. When screening doctors for inclusion on the list, ask them how they approach sexuality education with patients and their families.
  • Involve supportive pediatricians in sex education curriculum review committees. Medical professionals can provide important perspective on what constitutes medically accurate, age- and developmentally-appropriate content when selecting or adapting curriculum materials for sex education classes.
  • Adopt sex-education policies and curricula that are comprehensive and inclusive of all young people, regardless of sexual orientation or gender identity. Ensure that teachers receive the training and support they need to provide high-quality sex education to their students.

The AAP clinical report provides an important step toward ensuring that young people receive sexuality education that supports their healthy sexual development. If adopted widely by pediatricians—in partnership with parents and schools—the report’s recommendations could contribute to a sea change in providing young people with the care and support they need.

Culture & Conversation Abortion

With Buffer Zones and Decline of ‘Rescues’ Came Anti-Choice Legal Boom, Book Argues

Eleanor J. Bader

University of Denver's Joshua Wilson argues that prosecutions of abortion-clinic protesters and the decline of "rescue" groups in the 1980s and 1990s boosted conservative anti-abortion legal activism nationwide.

There is nothing startling or even new in University of Denver Professor Joshua C. Wilson’s The New States of Abortion Politics (Stanford University Press). But the concise volume—just 99 pages of text—pulls together several recent trends among abortion opponents and offers a clear assessment of where that movement is going.

As Wilson sees it, anti-choice activists have moved from the streets, sidewalks, and driveways surrounding clinics to the courts. This, he argues, represents not only a change of agitational location but also a strategic shift. Like many other scholars and advocates, Wilson interprets this as a move away from pushing for the complete reversal of Roe v. Wade and toward a more incremental, state-by-state winnowing of access to reproductive health care. Furthermore, he points out that it is no coincidence that this maneuver took root in the country’s most socially conservative regions—the South and Midwest—before expanding outward.

Wilson credits two factors with provoking this metamorphosis. The first was congressional passage of the Freedom of Access to Clinic Entrances (FACE) Act in 1994, legislation that imposed penalties on protesters who blocked patients and staff from entering or leaving reproductive health facilities. FACE led to the establishment of protest-free buffer zones at freestanding clinics, something anti-choicers saw as an infringement on their right to speak freely.

Not surprisingly, reproductive rights activists—especially those who became active in the 1980s and early 1990s as a response to blockades, butyric acid attacks, and various forms of property damage at abortion clinics—saw the zones as imperative. In their experiences, buffer zones were the only way to ensure that patients and staff could enter or leave a facility without being harassed or menaced.

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The second factor, Wilson writes, involved the reduced ranks of the so-called “rescue” movement, a fundamentalist effort led by the Lambs of Christ, Operation Rescue, Operation Save America, and Priests for Life. While these groups are former shadows of themselves, the end of the rescue era did not end anti-choice activism. Clinics continue to be picketed, and clinicians are still menaced. In fact, local protesters and groups such as 40 Days for Life and the Center for Medical Progress (which has exclusively targeted Planned Parenthood) negatively affect access to care. Unfortunately, Wilson does not tackle these updated forms of harassment and intimidation—or mention that some of the same players are involved, albeit in different roles.

Instead, he argues the two threads—FACE and the demise of most large-scale clinic protests—are thoroughly intertwined. Wilson accurately reports that the rescue movement of the late 1980s and early 1990s resulted in hundreds of arrests as well as fines and jail sentences for clinic blockaders. This, he writes, opened the door to right-wing Christian attorneys eager to make a name for themselves by representing arrested and incarcerated activists.

But the lawyers’ efforts did not stop there. Instead, they set their sights on FACE and challenged the statute on First Amendment grounds. As Wilson reports, for almost two decades, a loosely connected group of litigators and activists worked diligently to challenge the buffer zones’ legitimacy. Their efforts finally paid off in 2014, when the U.S. Supreme Court found that “protection against unwelcome speech cannot justify restrictions on the use of public streets and sidewalks.” In short, the decision in McCullen v. Coakley found that clinics could no longer ask the courts for blanket prohibitions on picketing outside their doors—even when they anticipated prayer vigils, demonstrations, or other disruptions. They had to wait until something happened.

This, of course, was bad news for people in need of abortions and other reproductive health services, and good news for the anti-choice activists and the lawyers who represented them. Indeed, the McCullen case was an enormous win for the conservative Christian legal community, which by the early 2000s had developed into a network united by opposition to abortion and LGBTQ rights.

The New States of Abortion Politics zeroes in on one of these legal groups: the well-heeled and virulently anti-choice Alliance Defending Freedom, previously known as the Alliance Defense Fund. It’s a chilling portrait.

According to Wilson, ADF’s budget was $40 million in 2012, a quarter of which came from the National Christian Foundation, an Alpharetta, Georgia, entity that claims to have distributed $6 billion in grants to right-wing Christian organizing efforts since 1982.

By any measure, ADF has been effective in promoting its multipronged agenda: “religious liberty, the sanctity of life, and marriage and the family.” In practical terms, this means opposing LGBTQ inclusion, abortion, marriage equality, and the right to determine one’s gender identity for oneself.

The group’s tentacles run deep. In addition to a staff of 51 full-time lawyers and hundreds of volunteers, a network of approximately 3,000 “allied attorneys” work in all 50 states to boost ADF’s agenda. Allies are required to sign a statement affirming their commitment to the Trinitarian Statement of Faith, a hallmark of fundamentalist Christianity that rests on a literal interpretation of biblical scripture. They also have to commit to providing 450 hours of pro bono legal work over three years to promote ADF’s interests—no matter their day job or other obligations. Unlike the American Bar Association, which encourages lawyers to provide free legal representation to poor clients, ADF’s allied attorneys steer clear of the indigent and instead focus exclusively on sexuality, reproduction, and social conservatism.

What’s more, by collaborating with other like-minded outfits—among them, Liberty Counsel and the American Center for Law and Justice—ADF provides conservative Christian lawyers with an opportunity to team up on both local and national cases. Periodic trainings—online as well as in-person ones—offer additional chances for skill development and schmoozing. Lastly, thanks to Americans United for Life, model legislation and sample legal briefs give ADF’s other allies an easy way to plug in and introduce ready-made bills to slowly but surely chip away at abortion, contraceptive access, and LGBTQ equality.

The upshot has been dramatic. Despite the recent Supreme Court win in Whole Woman’s Health v. Hellerstedt, the number of anti-choice measures passed by statehouses across the country has ramped up since 2011. Restrictions—ranging from parental consent provisions to mandatory ultrasound bills and expanded waiting periods for people seeking abortions—have been imposed. Needless to say, the situation is unlikely to improve appreciably for the foreseeable future. What’s more, the same people who oppose abortion have unleashed a backlash to marriage equality as well as anti-discrimination protections for the trans community, and their howls of disapproval have hit a fever pitch.

The end result, Wilson notes, is that the United States now has “an inconstant localized patchwork of rules” governing abortion; some counties persist in denying marriage licenses to LGBTQ couples, making homophobic public servants martyrs in some quarters. As for reproductive health care, it all depends on where one lives: By virtue of location, some people have relatively easy access to medical providers while others have to travel hundreds of miles and take multiple days off from work to end an unwanted pregnancy. Needless to say, this is highly pleasing to ADF’s attorneys and has served to bolster their fundraising efforts. After all, nothing brings in money faster than demonstrable success.

The New States of Abortion Politics is a sobering reminder of the gains won by the anti-choice movement. And while Wilson does not tip his hand to indicate his reaction to this or other conservative victories—he is merely the reporter—it is hard to read the volume as anything short of a call for renewed activism in support of reproductive rights, both in the courts and in the streets.