Abstract:
Although many older adults today came of age during the sexual revolution, outdated and ageist beliefs persist that sex does not or should not take place between residents in long-term care (LTC) communities. Baby Boomers have enjoyed greater sexual freedom than previous generations, including active LGBTQ+ lifestyles. The Hebrew Home at Riverdale in 1995 created the nation’s first sexual expression policies in LTC and has promoted and protected these rights since. This article shares the evolution of these policies and culturally sensitive staff training. It also addresses ethical issues protecting the safety and rights of residents with diminished cognitive abilities.
Key Words:
Sex, intimacy, long-term care, consent, dementia, Alzheimer’s disease, staff training, LGBTQ+
As we age, so much becomes about loss. We can lose our physical capabilities, our independence, our loved ones. Why should intimacy go as well? The sense of touch is one of the last pleasures that remains. At the Hebrew Home at Riverdale, we honor what remains in a person, not what is gone.
The idea that older adults are neither interested in, nor capable of sexual expression is out of date and ageist. Masters and Johnson proved that sexual activity can take place well into old age despite the health challenges of aging (Masters & Johnson, 1981). However, the staff/resident relationship is most commonly grounded in the traditional caregiver–care recipient model, operating on the premise that residents are frail and dependent. An understanding and acceptance of residents as sexual human beings does not easily follow in this context.
But people do have sex in LTC communities and that needs to be protected as a civil right. At the Hebrew Home, we believe that sexual expression is a human right. For all of us in the LTC field, it is our responsibility to protect and encourage intimacy in old age. We must be equally committed to protecting those who are not able to consent, or who do not want to be touched. In 1995, the Hebrew Home at Riverdale was the first LTC residence in the United States to create a formal sexual expression policy (American Sexual Health Association, 2022). It is troubling that we are still talking about this topic almost 30 years later. It illustrates the depths of ageism.
Almost three decades ago at the Hebrew Home, a nurse walked in on a couple having sex in a resident’s room. She asked how I suggested she handle the situation. “Tiptoe out and close the door quietly,” I said.
At that time, we left it to our staff to make these decisions, and they brought their own belief systems into it. But they should not be burdened with that responsibility. The chain of command is not around 24/7, and a lot of these situations arise during off hours. Sex doesn’t just happen between 9 and 5 on weekdays. Shortly after this encounter, we began the formal process of creating guidelines that were thoughtful, transparent, and would be shared with residents, families, and staff.
A lot has changed since we created our Resident Sexual Expression Policy and we have modified it several times. The 1.347 million older adults (National Center for Health Statistics, 2019) who live in American nursing homes today are different from the residents protected by our original policy. Baby Boomers, who began turning 65 in 2011, came of age during the sexual revolution and have very different attitudes toward sex than did previous generations. Many older adults have lived active LGBTQ+ lifestyles. (By nature, LTC should be more adaptable to housing same sex couples due to the same sex requirement for semi-private rooms.) And the Alzheimer’s Association estimates that more than half of residents in assisted living residences and nursing homes have some form of dementia or cognitive impairment, a much higher percentage than when we developed the original guidelines.
Developing the First Sexual Expression Policy for a Nursing Home
When we embarked on creating our policy, there was virtually no discussion in the literature of sexual expression in LTC communities. We surveyed hundreds of nursing homes, and many denied their residents were having sexual relationships. We knew this was not true. Believing that sexual expression is an intrinsic resident right and quality-of-life issue, we identified several key tasks:
- Create a formal policy that sanctioned resident sexual expression, including reference to residents with different levels of cognitive impairment.
- Develop an education program to help staff respond to situations and to provide a supportive social environment for appropriate resident sexual expression.
- Modify, where possible, the physical environment to facilitate and support resident sexual expression and intimacy.
- Implement a family orientation to address the needs and rights to sexual expression of older adults living in LTC communities.
To create the original guidelines, an interdisciplinary work group was formed that included a clinical member, residents, a social worker, and clergy. We defined sexual expression as “words, gestures, movements, or activities (including touching, flirting, proximity and physical contact, dressing up, or reading) which appear motivated by the desire for affection, relationship, intimacy, and/or sexual gratification.” The policy would clarify not only the residents’ rights, but also the staff’s responsibilities to respect and support these rights. This elevated the policy beyond the scope of behavior—residents’ or staff’s—onto the level of our organization’s mission and systems.
In 1995, the Hebrew Home adopted a Resident Sexual Expression Policy, which recognizes and respects the importance of emotional and physical intimacy without regard to sexual orientation or gender. The statement of rights today says: “residents have the right to seek out and engage in consensual sexual expression with other residents or visitors. Residents have the right to access and/or obtain for private use, materials with sexually explicit content: books, magazines, film, video, audio, pictures, or drawings. To the extent possible, residents also have the right of access to a private space in support of sexual expression.” The policy also sets rules for guarding against non-consensual sex and public displays.
Culturally Sensitive Staff Education
Our policy states: it “is the function and responsibility of the staff to uphold and facilitate resident sexual expression, and the responsibility of the facility to provide comprehensive and culturally sensitive staff training and resources to the extent possible to ensure the resident’s right to privacy and safe and healthy sexual expression, and to protect residents from sexual harassment and abuse.”
The staff educational sessions are organized by residential neighborhoods so that interdisciplinary professionals including nurses, physicians, social workers, aides, dietitians, and therapeutic activities specialists who work together are trained together. Meetings are held in every household in the facility. Sessions focus on a range of vignettes based upon actual cases at the Hebrew Home. Particular focus is placed on protecting residents with memory loss and diminished capacity to consent.
We help staff determine if a sexual relationship is consensual within the resident’s cognitive parameters. They are taught to monitor people known to be in an intimate relationship and to look for signs of discomfort. Observed disruptions in eating, sleeping, or bathroom patterns could prompt a staff member to ask if a resident is unhappy in a relationship. When touching appears to be unwanted, staff will take immediate steps to help end it. Overall, staff education has been received very positively, and most employees express relief at having clear guidelines on how to respond to situations.
“Employees are taught to leave their culture at the gate when it comes to judgmental behavior,” says Sharon Praigrod, RN, palliative care manager, nursing at the Hebrew Home. “We aren’t asking our staff to accept a resident’s lifestyle choices; we are asking them to accept the resident as they are.”
The Role of the Family
“There isn’t a child of any age who wants to think of their parents as sexual beings,” says Anne Weisbrod, director of social services at the Hebrew Home. Our Sexual Expression Policy is posted prominently on our website. We consult families on a case-by-case basis, and we work with them to accept the resident’s desires.
When a resident is married to someone outside the facility and has sex with another resident, the Home supports the relationship, as long as it’s healthy and consensual. For example, we had a married male resident with severe dementia. His wife came almost daily even though he didn’t recognize her. Our staff told her he had a girlfriend at the Home with whom he would kiss and hold hands. The staff was nervous the wife would be upset. But she requested that the pair not be separated, explaining she wanted to preserve anything that provided her husband pleasure and love. “That was so selfless of her,” says Weisbrod. “She wanted him to have that intimate feeling again, even if it was not with her.”
Privacy and Environmental Supports
Privacy can be difficult to find in an LTC environment. Residents may live in semi-private rooms and locks are limited for safety reasons. However, the right to privacy, and the right to have visitors of one’s own choosing, is the foundation of our policy. We ask ourselves how we can support the resident’s right and address his or her needs, not how we can control the behavior.
‘We surveyed hundreds of nursing homes, and many denied their residents were having sexual relationships. We knew this was not true.’
We have a “Please Knock” policy at all times throughout the facility and we will put up a “Do Not Disturb” sign. We can direct a roommate to an activity outside of the room or find a temporary private room for the couple. We had one couple who wished to be intimate and the male requested erectile dysfunction medication. He is in a wheelchair, so we made sure to move him to a bed before the medication took effect and then gave them their privacy. “Another time a gentleman fell off the bed,” recalls Eileen Dunnion, RN. “So, we provided pillows and floor mats next time. Single beds are not great for sexual activity.”
“We had a male and female resident in their late 80s who were not married who wanted to share a room,” adds Weisbrod. There was no rule against that and both residents were able to consent. The couple wanted their beds together, so we got our engineering department involved. “The couple’s physical safety was our only concern. These are the extents we will go to help people be together.”
Sexual Expression and Cognitively Impaired Residents
According to the Centers for Disease Control and Prevention (CDC), approximately 5.8 million Americans were living with Alzheimer’s disease and related dementias in 2020 (CDC, 2022). That number is projected to nearly triple by 2060, with minority populations expected to be most affected. Residents with dementia can raise moral, ethical, and legal issues for caregivers, and place greater demands on staff to make accurate and sensitive assessments when it comes to determining the capacity to consent to sex.
While we recognize that residents with Alzheimer’s and other dementias have compromised decision-making capacity, we ask people with cognitive impairments to make decisions every day concerning activities, food preferences, and clothing to wear. And we honor those decisions, even though they may not remember an hour later. So why can’t we say to someone with cognitive impairment, “How do you feel about Mr. Jones kissing you?”
It’s not black and white. Given a choice between allowing unwanted touching and encouraging intimacy, we will always err on the side of depriving someone of intimacy to eliminate the risk of sexual assault. That’s where we involve our staff. It starts and stops at the front lines. Our policy includes staff making an immediate intervention with an emphasis on diversion in instances where the sexual expression does not appear to be consensual. It also stipulates developing a care plan and updates on a quarterly basis or when there is a significant change in circumstances.
“We had a woman come to us with mild dementia,” says Praigrod. “Her husband requested intimate time, and she consented. However, as her dementia advanced, our staff determined that she no longer was able to consent, so we no longer allowed this private time. We explained it to the husband, and he understood.”
A 2015 legal case of People v. Rayhons cast a national spotlight on the complex intersection of sexuality, aging, and dementia (Leys & Rodgers, 2015). It also called attention to the lack of clear guidelines regarding sex and consent in most nursing homes. Henry Rayhons was a former Iowa state legislator who was charged with sexual abuse in 2014 after being accused of having sex with his wife, who suffered from Alzheimer’s disease, in the nursing home where she resided. A jury found him not guilty. The media coverage sparked a national conversation about intimacy within LTC settings.
Twenty-one years after the Hebrew Home at Riverdale established these policies, The Society for Post-Acute and Long-Term Care Medicine addressed these complexities in a 2016 White Paper, Capacity for Sexual Consent in Dementia in Long-Term Care. It stated that “the right to engage in intimate sexual activity is a basic right for all older adults, including those with cognitive impairment.” It also recognized the need for “an authentic process by which professionals evaluate capacity for consent by individuals with dementia in LTC engaging in sexual activity” (The Society for Post-Acute and Long-Term Care Medicine, 2016).
Dementia patients can become oversexualized—disrobing or touching themselves in public. First, we look for a medical explanation. If we determine it is not an infection, the staff immediately goes into protective mode. “We had a female patient who became overly sexually aggressive to male visitors,” Praigrod remembers. “Staff would monitor her closely, redirect, and distract.”
A State Grant Helps Our Policy Spread
In 1999, the Hebrew Home received a $250,000 grant from the New York State Department of Health to develop staff training materials. We created a video called “Freedom of Sexual Expression: Dementia and Resident Rights in Long-Term Care Facilities,” and distributed at no cost to all LTC communities in New York. State surveyors started asking if staff understood the residents’ rights to sexual intimacy. This was proof that the American mainstream had begun to recognize sex in later life.
Supporting LGBTQ+ Residents
As Praigrod says, “We make it a priority to allow our residents to see who they want to see and have any kind of relationship they want as long as both are in agreement.” The Hebrew Home at Riverdale was the first long-term care community to organize a regular support group focused on the issue of sexual identity among older residents. It was co-founded by a social worker and a resident who both identify as LGBTQ+.
“One of our residents has a same sex partner who comes to visit,” says Weisbrod. “The partner thanked us for providing the LGBTQ+ group because it made the partner feel more comfortable visiting and being a couple. There are so many opportunities for learning and teaching for both residents and staff. We help our residents be their authentic selves.” Our efforts in supporting older LGBTQ+ were and are a critical first step at addressing and rectifying the repeat stigma—first as younger people and again as older adults—this population continues to face.
Health Benefits of Sex
Many residents of long-term care facilities are single, having lost a partner to death or divorce. Numerous studies show that older adults who have strong social networks and high levels of social activity show less cognitive decline. An intimate relationship can be a non-pharmaceutical approach to mood elevation, and correlates to a greater quality of life. But it’s not just about sex. Warmth, closeness, companionship, and touching can alleviate the loneliness pervasive in long-term care.
We don’t need a perfect body; we just need one that works. And if it doesn’t, modern medication—including erectile dysfunction drugs and lubricants to alleviate vaginal dryness—can help today’s older adults enjoy sex and intimacy. If a resident requests pharmaceutical aid for sexual intimacy, our medical professionals work with them to accommodate that request.
Some Things Never Change
Regardless of age, sexual relationships can be tricky. “We have had to step in and help a resident understand that a relationship is over,” Praigrod says. Weisbrod adds, “I never thought as a geriatric social worker I would be comforting a 90-year-old woman who slept with a man and got dumped the next day. Jealousy, different levels of interest, mourning a lost relationship … it doesn’t end because you’re living in a long-term care community.”
‘We aren’t asking our staff to accept a resident’s lifestyle choices; we are asking them to accept the resident as they are.’
We also have spouses who live here together. “I’ve had male patients who had a girlfriend here at the Hebrew Home, and one outside the Home at the same time,” says Dunnion, an RN who has been at the Hebrew Home for 31 years. “This is their home; they are consenting adults.”
What Other Long-Term Care Communities Can Do
While there is growing acknowledgement that sexual expression is a lifelong need and can greatly contribute to quality of life, our field is still lagging with formal policies to protect these rights. A 2013 survey by AMDA estimated that less than 25% of long-term care facilities have policies on intimacy and sexual behavior (AMDA, 2013).
To quote our training video, “A hundred staff members can have 100 different personal, moral, and religious approaches to sex, but there can be only one organizational approach.” When we designed our policy and then expanded the program to include other nursing homes, we recognized the need to define and establish positive organizational sanctions to guide staff. As the residents’ chief advocate, the social workers are key players. They can help the rest of the staff separate moral judgment about sexual behavior. But this begins with development of a formal policy, protocol, and education program for staff, residents, and families.
Conclusion
Sexual expression among older adults is a complex issue, especially as we emphasize the role of capacity and consent, which is not always clear when there is cognitive decline. Despite a growing recognition of sexuality in older adults, the majority of LTC communities do not have policies and procedures to address this, which ultimately constitutes a disservice, if not a violation, of residents’ rights. AMDA has urged the long-term care field to develop and implement policies [Healy, 2020], identifying resources like ours upon which others can be modeled. We are proud to have been pioneers promoting and protecting the rights of residents to express their sexuality freely and without judgment. Our policy has measurably promoted increased levels of comfort, understanding, and acceptance by staff and families.
One of the Hebrew Home’s octogenarian male residents feels that the guidelines are so accepted there, that it’s a non-issue. “I’ve been here for 10 years,” says Mr. D. “I never had a problem. If I had an overnight guest, I brought them in, closed the door. I didn’t need permission. I’ve always had overnight guests from the area and from residents, too. I never involved the staff. It’s my business.”
A recognition of the importance of sexual expression in LTC is also indicative of the field’s trend toward making long-term care communities more home-like. This holistic movement involves a change in the culture and philosophy of long-term care. A long-term care community is, above all, a person’s home. It must be a place of choice, and a place of pleasure, where appropriate and safe sexual expression can occur.
Daniel Reingold, MSW, JD, is President and CEO of RiverSpring Living, the parent organization of the Hebrew Home at Riverdale in New York. He can be reached at Daniel.reingold@riverspring.org.
Photo credit: Bohbeh/Shutterstock
References
American Medical Directors Association. Elder care sex survey finds caregivers seeking more training. (2013). Elder Care Sex Survey (bloomberg.com).
American Sexual Health Association. (2022). Sexual Intimacy: A Human Right. www.ashasexualhealth.org/sexual-rights-for-seniors/
Centers for Disease Control and Prevention. (2022). Alzheimer’s Disease and Related Dementias. www.cdc.gov/aging/aginginfo/alzheimers.htm
Healy, E. (2020). Intimacy and Dementia: The Challenge of a Generation. In K. J. Doka & A. S. Tucci (Eds.) Intimacy and Sexuality During Illness and Loss. Hospice Foundation of America.
Leys, T., & Rodgers, G. (2015). Rayhons: ‘Truth finally came out’ with not guilty verdict. Des Moines Register, April 22. www.desmoinesregister.com/story/news/crime-and-courts/2015/04/22/henry-rayhons-acquitted-sexual-abuse/26105699/
Masters, W., & Johnson, V. (1981). Sex and the Aging Process. https://agsjournals.onlinelibrary.wiley.com/doi/abs/10.1111/j.1532-5415.1981.tb02375.x
National Center for Health Statistics. (2019). Long-term Care Providers and Services Users in the United States, 2015–2016. Vital and Health Statistics, 3(43). www.cdc.gov/nchs/data/series/sr_03/sr03_43-508.pdf
National Institute on Aging. Retrieved June 6, 2022 from www.elderneedslaw.com/blog/how-many-older-adults-will-wind-up-in-skilled-nursing-homes#:~:text=According%20to%20the%20National%20Institute,nationwide%20with%201.8%20Million%20beds
The Society for Post-Acute and Long-Term Care Medicine. (2016). Capacity for Sexual Consent in Dementia in Long-Term Care. https://paltc.org/?q=amda-white-papers-and-resolution-position-statements/capacity-sexual-consent-dementia-long-term-care#:~:text=Any%20policy%20on%20sexual%20consent,capacity%20is%20unclear%20or%20diminishig
