People are still having sex well into their golden years. According to public health data compiled by Bloomberg News, 67 percent of men between the ages of 65 and 74, and 39.5 percent of women in the same age group, have had partner sex within the last 12 months. But at institutions and in organizations that ostensibly cater to seniors’ needs, the matter of older adults’ sexuality is often ignored altogether.

“It’s not like the gift shops in these long-term care facilities are providing condoms,” Melanie Davis, co-president and a founding member of Widener University’s Sexuality and Aging Consortium, told Rewire. The Consortium, which was formed in 2010, works with nursing home administrators around the country on educating their staff about addressing behavioral issues or day-to-day questions about privacy and sex. Though condoms are occasionally distributed at sex education classes at these facilities, Davis says, few even have policies addressing sexual expression, residents’ privacy, or sexual safety and consent, let alone ready accessibility to STI-prevention methods.

Robin Dessel, sexual rights educator at the Hebrew Home in Riverdale, New York, said the lack of resources for sexually active seniors is reflective of narrow public attitudes. “Society at large has not come to terms with older adult sexuality,” she said. The Hebrew Home was the first adult care facility in the country to draft a policy regarding residents’ sexual expression; it’s also created a set of guidelines to help care providers determine whether a person with dementia can consent to sex.

The consequences of failing to address senior sexuality are complicated: While sexually transmitted infection rates among seniors actually haven’t increased dramatically, seniors may not be getting adequate details about prevention or treatment. In addition, one in three seniors dies due to Alzheimer’s or another form of dementia, and the rate of Alzheimer’s diagnosis is projected to climb over the next few decades. Memory loss can change a patient’s sexual expression and complicate matters of consent. And, as Dessel argues, the rights to privacy, sexual expression, and intimate contact are fundamental human rights—ones that seniors can be losing out on due to a lack of good information and clear policies.

More Than STI Prevention

Much recent media coverage of older adults’ sexuality has been pegged to reports that some sexually transmitted infections are up among people older than 65—leading to suggestions from commentators and reporters that aging Baby Boomers are less likely to practice safer sex or to communicate with partners about their sexual history.

The data on seniors’ STIs come from the Centers for Disease Control and Prevention, but CDC officials interpret the data differently. A spokesperson for the agency told Rewire in an emailed statement that the CDC has not performed an analysis of sexually transmitted infection rates among adults older than 65 as a whole, and that the agency does not believe the uptick in chlamydia reports actually represents an increase in cases. For example, comparing 2008 to 2012, the rate of reported chlamydia among those older than 65 increased from 2.1 to 2.7 cases per 100,000 people—a tiny increase that could be attributed to population growth. For other STIs, such as gonorrhea, the rate of change among seniors is in keeping with that among other age groups.

While STI increases may not be as dramatic as sometimes reported, both Davis and the Sexuality and Aging Consortium co-president, Robin Goldberg-Glen, who is also an associate professor in the Widener University Center for Social Work Education, say seniors still often have a hard time accessing good information about how to protect themselves. Sex education classes in care facilities are far from common, for one thing; for another, there are no condoms designed specifically with older adults in mind.

“Physiologically, erections aren’t as firm when people get older,” Davis, who also runs a private practice as a sex educator, said. “They’re less firm, so it’s harder to get a condom to sit right. What are you supposed to do? Take it off, put it back on—it’s often easier just not to use it.” In facilities that do make condoms available during sex ed classes, she adds, seniors may feel shy about mentioning their difficulties using condoms.

Davis often recommends the female condom, FC2, to older clients. But it takes some time and education to learn to use FC2 properly, especially for older women who haven’t used tampons before.

In addition to these and other physiological concerns—such as erectile dysfunction, lubrication or lack thereof, chronic pain, or changes in mobility—caregivers must address issues of privacy, consent, and appropriate sexual expression that can affect older adults uniquely.

Many facilities are “sex-positive on the face of it,” Davis said; one facility that engaged her as a consultant, for instance, told her they have a private room clients can use for conjugal visits. In reality, however, she says available amenities are often lacking. One facility’s “private room,” for example, was actually a conference room, which staff used for meetings.

Federal guidelines don’t require nursing facilities to allow residents a private room. According to Bloomberg, a handful of states give married couples the right to private visits. And only Colorado’s regulatory language explicitly grants residents and their non-married partners the right to consensual sexual visits. In the 2012 textbook Sexuality and Long-Term Care, Kansas State University Center on Aging Director Gayle Doll suggests care facility staff can support a patient’s right to sexual privacy in several ways—such as helping residents rent a hotel room, moving twin beds together, permitting use of a double bed, or hanging do-not-disturb signs when a resident’s sexual partner visits. The Hebrew Home’s policy, for example, requires the facility to ensure residents’ privacy and, when possible, to make arrangements for sexual expression, such as allowing a private room for one member of a couple.

Consent Is Key

The issue of sexuality becomes even more complicated, advocates say, when memory loss or other forms of dementia come into play. Before Dessel developed the Hebrew Home’s sexual expression policy, she worked in memory care at the facility. There, she found a crying need to address sexuality in an appropriate way.

Many forms of dementia will cause patients to make inappropriate comments or act out sexually, Dessel says. She points out that staff need to be trained to address those behaviors appropriately.

Oftentimes, Dessel says, facilities take a “parochial attitude,” as she put it, toward residents’ sexual expression. Goldberg-Glen, too, said in a joint interview with Davis that it’s not uncommon for families or facilities to deny—or offer and then remove—residents’ access to private spaces and visits without fully assessing whether a resident can consent to sex.

“It’s very challenging because it’s not formulaic,” Dessel said of determining whether a person with dementia is able to consent to sex. The Hebrew Home’s guideline sheet for consent among memory patients suggests asking questions like, “What are your wishes for this relationship?” and “Do you enjoy sexual contact?” It also suggests caregivers check residents’ body language while asking these questions. Dessel adds that caregivers should communicate frequently with residents to observe whether their feelings or capacity are changing.

According to Dessel, it’s usually best to involve a “collective of clinicians and family” and to check in with the resident frequently.

The issues of consent and memory have recently resurfaced among advocates, caregivers, and media outlets with last week’s Bloomberg report on the case of Henry V. Rayhons, a Republican Iowa legislator and retired farmer who will be tried in January on charges that he raped his wife, who had Alzheimer’s disease and was in a care facility. The charges refer to an alleged sexual encounter in the shared room of Rayhons’ wife, Donna Lou Young. Young’s roommate made the complaint; Young has since died. Rayhons told investigators he couldn’t remember if he had sex with Young on the day in question, and forensic evidence is so far unclear. Rayhons has said that he had many sexual encounters with Young after the onset of her dementia.

The Hebrew Home’s director, Daniel Reingold, is quoted in the story as saying, “This was not a rape,” contending that Rayhons and his wife had a loving relationship. Dessel, when contacted by Rewire for a comment on the Rayhons case, wrote in an email, “This is a tale with a sad and demoralizing last chapter … where is the humanity when vilifying a gentleman for sharing cherished and final intimate relations with his wife?  A fatal error occurs when we presume guilt based on the notion that Alzheimer’s has stolen not just mind but heart.”

She continued, “Consent is a fluid state of awareness in the context of all decision-making, whether in the presence or absence of Alzheimer’s. I am hopeful that the takeaway is one of enlightened understanding and regard for older adults with Alzheimer’s and, in spite of this fate, that we give credibility and honor to their life choices.”

Young’s facility, Concord Care, did not have a policy regarding sexual matters specifically, but after her family raised concerns about visits with Rayhons, a provider gave her a 15-question mental capacity test—the Brief Interview for Mental Status (BIMS), often used to diagnose dementia—to decide whether she could continue to consent to sex.

The assessment is pretty basic: It asks clients to repeat back common words to the tester, like “sock.” A score of 15 on the test indicates high mental capacity, and zero is the lowest score possible. Young scored a zero on the test the second time it was offered, ten days before the assault is said to have occurred. After the second assessment, Concord Care staff moved Young to a room with a roommate and told Rayhons his wife was no longer able to consent to sex. According to Bloomberg, Rayhons said that he understood.

For her part, Doll writes in Sexuality and Long-Term Care that facilities can use several means of determining whether adults with dementia can consent to sexual activity. One path involves using a different cognitive assessment—the Mini-Mental Status Exam—as a first step. On that test, the highest score is 30, and people with Alzheimer’s usually score a 26 or less. Doll’s text describes a “decision tree” where a person with a score 14 or higher on the test goes through further assessment. Someone with a lower score would automatically be deemed unable to consent.

Based on her BIMS score, it’s likely Young would automatically have been disqualified from progressing in the decision tree. But a study published earlier this year does note that although BIMS works well for determining the presence of dementia, it does not consistently assess the severity of impairment.

Doll goes on to say that clinicians and facilities may prefer to use “functional competency” rather than a cut-and-dried test—a model that recognizes that people with dementia may be incapable of making some decisions for themselves and capable of making others.

“No matter how an organization chooses to go about determining consent, there are a few basic things to remember,” the book says. “The capacity to decide to have an intimate relationship should not be based on a one-size-fits-all concept. While some people affected by dementia will not be capable of handling their finances, they might have very clear ideas of what they want in a relationship. Cognitive memory may be affected while emotional memory is not. Feelings remain long after the ‘facts’ have disappeared.”

Doll also notes that literature from the field of developmental disabilities care has addressed consent in ways that could apply to senior care since at least the 1990s. In their various works on the subject, Dr. Thomas-Robert Ames, the now-deceased former president of the Coalition on Sexuality and Disability, and Perry Samowitz, senior director of education and training at the YAI Network, recommend examining relationships based on safety, voluntariness, lack of exploitation and abuse, ability to say no, and ability to choose a socially appropriate time and place for sex.

Beyond Long-Term Care

The fact that Young’s facility, Concord Care, lacked a clear policy on residents’ sexual rights is not unusual. Dessel said she’s regularly contacted by nursing care facilitators all over the country either to consult on specific clients’ cases, or to help them develop a sexual expression policy.

Other than pioneers in the field like Dessel, there are very few resources when it comes to improving attitudes toward sexual education and expression in long-term facilities. Sexuality in Long-Term Care is one of the few textbooks that addresses sex among older adults. Older, Wiser, Sexually Smarter—written for staff at senior centers or long-term care facilities—is another.

In a broader sense, the majority of older adults do not live in facilities—in fact, just 4.1 percent of Americans older than 65 do. So far, few sex ed curricula exist for older adults, and media covering older adults’ lives are often vague on the issues that affect their sexuality, says Davis. With that in mind, she led a team of sex educators and therapists in the creation of a website, Safer Sex for Seniors, intended as a clearinghouse for people looking for information about older adult sexuality.

The site is also there for young adults who may find themselves having to have a variation of “the talk” with their aging parents, and it includes information for grandparents who are caring for their grandchildren and aren’t sure how to talk to them about sex. In conjunction with the site, the advertising agency DDB NY created a PSA campaign urging seniors to practice safe sex.

Davis is also working to develop a sexuality curriculum not geared to adults living in facilities, which will be published by the Unitarian Universalist Association and the United Church of Christ. Separate from that effort, the Consortium offers continuing education to agencies on aging, family care providers, geriatricians, and sex educators about the best ways to address education for their older clientele.

Independent of the Consortium, other provider organizations are beginning to talk to their members about older adult sexuality as well. Joan Baird, director of pharmacy process and product development for the American Society of Consultant Pharmacists, says that her organization has started holding continuing education sessions for pharmacists on older adult sexuality, because pharmacists play a special role in working with patients on a regular basis.

“More and more clinicians are realizing [seniors’ sexuality] has to be part of the conversation about safer sex,” Baird said.

Davis says her interest in sexuality and aging stems from the fact that she herself is aging, and she has led workshops on, as she said, “age-related sexual privilege—this idea that sexuality, sexual expression is in the realm of younger people.”

“People automatically assume you’re talking about intercourse,” Davis said. In mainstream discussions, she said, “there’s nothing about sexual identity, gender, orientation.” Plus, she pointed out, “There’s intimacy that may or may not be physical. If all you think about of sex is having an erection, once that goes away, you’re done. While the sexual activity may change, your essence may not change.”

UPDATE: This article has been updated to clarify that the advertising agency DDB NY created the “Safe Sex for Seniors” campaign in conjunction with Safer Sex For Seniors.