May/June 2006

Sexuality in Nursing Homes — Preserving Rights, Promoting Well-being
By Jennifer Sisk, MA
Social Work Today
Vol. 6 No. 3 P. 16

Sexual desire does not disappear with age. Social workers play a key role as advocates for the rights of nursing home residents to express their sexuality.

For many older Americans, entering a long-term care facility means giving up their independence, their homes, their livelihood, and many of their favorite possessions. Often adding to these major losses is the perception that the freedom and privacy to express their sexuality has also been lost. Because society tells us that sex is for the young and healthy, it is mistakenly assumed that sexual desire dwindles after a certain age. Sexual expression by residents in long-term care facilities is often misinterpreted as a behavioral problem, but it may be a sign that an important basic need—the need for human touch, closeness, and intimacy—has been overlooked.

Legally, residents of long-term care facilities are entitled to express themselves sexually as long as sexual expression is not a public display, is consensual between residents, and does not harm the resident or others. However, barriers remain, and for many residents, appropriate sexual expression may be prevented by lack of privacy, physical and mental health status, lack of institutional policies and procedures, and staff or family intervention.

Responsibility for Residents’ Rights
In response to the often sensitive issue of geriatric sexual expression, some facilities have established firm policies and procedures to ensure that staff support residents’ rights. The geriatric social worker—the advocate for residents’ rights—often leads facilitywide efforts to standardize staff handling of sexual expression issues. In the early 1990s, the research department at the Hebrew Home for the Aged in Riverdale, NY, decided that it needed to formalize resident rights to sexual expression and created a sexuality workgroup composed of social workers, psychiatric nurses, therapeutic recreation specialists, researchers, residents’ family member representatives, and religious representatives to establish policies and procedures related to sexual expression and residents’ rights. The current policy specifically outlines residents’ rights to privacy, sexual expression, and intimate relationships, as well as delineates staff and facility responsibilities in upholding these rights. With the aid of a $250,000 grant from the New York State Department of Health, the Hebrew Home also produced a training video, “Freedom of Sexual Expression: Dementia and Resident Rights in Long-Term Care Facilities,” which presents both appropriate and inappropriate sexual expression and has since been sent to all long-term care facilities in New York State. The video introduces the importance of each facility having residents’ rights policies related to sexual expression and the responsibility of staff in upholding them.

The rights of residents in a long-term care facility to engage in appropriate sexual activities have not always been clear cut and supported by staff. According to Robin Dessel, LMSW, assistant director of social services at the Hebrew Home, supporting the sexual rights of geriatric residents is keeping with the relatively recent movement to deinstitutionalize long-term care facilities. This holistic movement involves changes in facility design, creative programming, and individualization of resident care. For example, at the Hebrew Home, a patient floor previously referred to as “The Alzheimer’s Unit” is now called a “Special Care Neighborhood.” The Hebrew Home recently constructed a new resident-centered pavilion with private rooms and bathrooms called households. This change in the culture and philosophy of long-term care has the ultimate goal of making the end-of-life experience more appealing, says Dessel, and the new attention to residents’ rights to sexual expression is part of the overall change in philosophy. “The facility is now viewed as the resident’s home. The term home implies a place of choice, a place of pleasure,” says Dessel, where appropriate sexual expression can occur.

Additionally, the health benefits of sexual expression and intimate relationships for geriatric residents are being realized. “As people age, they do not lose their need for intimacy, and in fact, because of losses due to nursing home placement, declining health, and lifestyle changes, the need for intimacy may even be greater,” notes Catherine C. Bradley, MSW, LCSW, ACSW, a long-term care social work consultant for nine years. “An intimate relationship with another resident can enhance self-esteem and well-being.”

The resident’s happiness and quality of life is important. Dessel adds, “Warmth, closeness, and touching with another resident can alleviate the profound loneliness that affects many long-term care residents.”

And, residents are not necessarily seeking only sexual gratification. “They are seeking comfort, companionship, and human touch to combat feelings of loss and isolation,” says Janis Lyons, LCSW, a geriatric social worker at the Motion Picture & Television Fund (MPTF) long-term care facility in Woodland Hill, CA. “This expression is vital for their emotional and mental health. It enhances the quality of the remainder of their life.”

As more facilities realize that sexual expression is essential to their residents’ quality of life, the role of the geriatric social worker has grown to include daily interaction about this issue with both nursing home residents and staff.

The Social Worker — A Pivotal Role
Geriatric social workers play a crucial role in ensuring that residents have the opportunity to appropriately express their sexuality in the long-term care setting and helping them develop and maintain intimate relationships with other residents. When an appropriate consensual relationship develops between two residents, the social worker can support the residents by monitoring the relationship to make sure that it remains consensual and residents do not become agitated or upset. In many cases, simply spending time together, holding hands, kissing, and hugging are the extent of sexual expression. When a relationship between residents progresses to sexual activities that require privacy, the social worker can help arrange private space and time for the couple. “It is important to make sure that both residents are able to consent and have been counseled on safe sexual practices and understand that sexual activity should be in private,” says Bradley.

In most nursing homes, rooms are double occupancy, and private room time is difficult with a roommate. “There are limited options for privacy in such a structured environment,” says Doreen Delgado, MSN, ANP, a nurse practitioner and educator at the MPTF. A social worker may be called on to help roommates work out private room time and resolve any conflicts regarding room usage. At the Hebrew Home, Dessel says, “When possible, we will find a private room for one member of the couple. If that is not possible, we can arrange private time in a shared room when the roommate is participating in a chosen recreational activity elsewhere.”

Social workers must also regularly interact with and educate staff members regarding sexual expression. When staff members are uncertain or uncomfortable with regard to residents’ sexual expression, Dessel emphasizes, “social workers have to be advocates for resident rights.” According to Bradley, a geriatric social worker’s most important duty is to educate staff about resident rights—that all residents have the right to privacy, confidentiality, and respectful treatment. These rights include private consensual sexual activity with another resident and private masturbation,” says Bradley.

Bradley, Dessel, and Lyons work with clinical nurse managers or psychiatric nurses to help resolve resident sexuality issues and how staff should handle sexual expression among residents. “We enhance the rights of residents by addressing issues from clinical staff members. We give guidance as to whether certain sexual expression is appropriate. We validate and educate staff about what sexual behaviors are ‘normal’ for the residents,” Lyons explains. An important part of Lyons’ job is working “behind the scenes” with the clinical care team to ensure that residents’ rights to sexual expression are supported and that sexual expression is appropriate.

Social workers can help clinical staff become more comfortable with sexual expression by geriatric residents through frequent interaction and by organizing comprehensive training and staff education sessions. “Ongoing staff education is needed to ensure rights to sexual expression in the geriatric population,” Bradley says. Clinical staff may view nursing home residents more as patients, focusing primarily on their medical needs rather than personal and emotional needs. “Clinical staff need to understand that elderly long-term care residents have very real sexual needs that might exceed what staff would consider their clinical needs,” Dessel observes. “These are people, not just patients,” she emphasizes at regular monthly orientation meetings for new staff.

Personal beliefs about sex can also influence how clinical staff deal with sexual expression. At the MPTF, staff members enjoy seeing companionship between residents, but they often find it difficult to deal with sexual expression, Lyons notes. “On a consistent basis, our staff are distressed about resident sexual behavior, even when it is appropriate. Their religious and cultural beliefs affect how they view sexual expression between residents,” says Delgado. Same-sex relationships and residents who are still legally married to a spouse outside MPTF are especially problematic for most staff members, even though residents have the right to engage in such sexual expression, according to Delgado. “Some staff members remain uncomfortable with residents’ sexual behavior,” she says, “mostly due to their own cultural issues related to sexuality.” In the Hebrew Home’s “Freedom of Sexual Expression” video, the narrator says, “A hundred staff members can have 100 different personal, moral, and religious approaches to sex, but there can only be one institutional approach.”

When the Hebrew Home introduced its policy on sexual expression, Dessel and a psychiatric nurse did multiple in-service trainings to introduce the new policy and its importance to all staff members—from nurses to housekeeping staff. “We explained that we were not looking to challenge or change a staff member’s personal beliefs or to offend them. We are simply asking them to uphold the rights of residents and not deny them appropriate sexual pleasures,” Dessel explains. At the in-service trainings, methods of dealing with different sexual expression scenarios should be discussed. Often, simple, non-threatening, and nonconfrontational actions—such as discreetly closing a resident’s room door or privacy curtain if they see a resident or residents engaged in appropriate sexual activity—are effective, says Bradley. However, in many cases, clinical staff cannot determine whether sexual expression is appropriate or beneficial to the resident(s). The geriatric social worker then acts as a resource for staff members.

While the staff of a nursing home may consider certain sexual behaviors to be aberrant or perverted, as long as the behaviors are safe for the resident or others and are not performed in public areas, residents have the right to engage in those behaviors. These rights are no different from those of older individuals who live in their own homes and engage in such sexual expression privately. For example, a staff member may be personally offended by homosexuality or masturbation while viewing sexually explicit materials. However, staff members do not have the right to impose their sexual preferences and views on any resident. Frequently, male residents, especially those with dementia, can become less inhibited in public. How does a staff member handle a situation where a male resident begins masturbating while watching television in a public area with other residents? Moving the resident to his own room, where he can view pornographic materials and masturbate in private, supports the resident’s right to sexual expression without offending other residents. “The sexual expression is not wrong, only its public display,” says Dessel.

Dementia — An Added Dimension to Sexual Expression
The increasing number of residents entering the Hebrew Home with some form of dementia was a primary factor in the decision to establish a sexual expression policy and produce the “Freedom of Sexual Expression” video. Issues of sexual expression among residents with dementia are portrayed in the video, which notes that “since a substantial portion of the elderly have some form of dementia, sexual expression can cross the boundaries of Alzheimer’s and other afflictions.”

Between two residents who are cognitively functional, engaging in an intimate relationship is an unquestionable right, says Dessel, and the facility has no role in the relationship unless the residents request support. However, sexual relationships become much more complicated when residents have dementia and cognitive functioning is impaired. “A diagnosis of dementia adds another dimension to sexual relationships among residents,” she asserts. Staff members must determine whether sexual expression is driven by the dementia—for example, repeated fondling of others without discretion—and requires behavior management; or whether the resident is trying to express a need for affection and companionship. Lyons believes that sexual “acting out” behaviors may be caused by feelings of anger and frustration that arise when sexual needs are not being addressed appropriately.

The task of distinguishing inappropriate dementia-related sexual behavior from a true need for sexual expression may fall on the geriatric social worker. There must be a careful distinction between applying behavior management and interference with the rights and needs of dementia patients, Dessel says. “Residents with dementia still have the basic human need for touch and intimacy.”

Sexual expression issues become even more complex when one resident is cognitively functional and the other is not, or when both residents have Alzheimer’s disease or other dementia. “When an elderly individual loses functional competence, they are legally deemed incompetent and lose their decision-making rights,” Dessel explains. However, they do not lose the basic human drive to seek out intimacy and closeness and to express themselves sexually. According to Dessel, it is possible for an alert, cognitively functional resident to enter into a relationship with a resident who may have mild to moderate dementia. “Cognitive loss does not equal loss of feelings,” Dessel emphasizes. Residents may be drawn to each other for reasons that transcend cognitive function, such as common recreational interests, religious or cultural background, or life losses. For example, two residents who have lost their spouses may become close as they share feelings of grief and loneliness, and the fact that one may suffer from mild dementia may not matter.

When two residents with different levels of cognitive function enter a relationship, the social worker assesses the benefits vs. harm of the relationship. “We operate using the ‘do no harm’ policy. When one resident is cognitively intact and one is not, as long as the relationship adds to quality of life, we do not discourage it,” says Delgado. Although one resident may not be considered competent to make medical or financial decisions, they may be quite capable of expressing their happiness in the companionship of another. Dessel says, “A dementia diagnosis should not preclude the resident’s personal happiness. Sexuality is a basic human need at any point in life, and certainly should not be denied someone with a diagnosis of dementia.” Denying the ability of a resident with dementia to act on a fundamental human need for closeness and intimacy with another can be detrimental to an already fragile mental state. “It’s not just a clinical care imperative, it’s a quality of life imperative,” says Dessel.

“We have seen remarkable improvements in the daily quality of life and demeanor of residents with dementia who have a meaningful relationship—sexual or not—with another resident,” Dessel observes. However, staff and family members may object to such a relationship, particularly if one resident still has a spouse living outside the facility. In many cases, the resident with dementia may no longer recognize his or her spouse. “You cannot assign the term adulterer to someone with dementia who no longer recognizes his or her spouse [and] has not willingly dismissed that previous relationship,” Dessel says. In communicating with the adult children or spouses of residents with dementia, Dessel stresses that current actions should not violate memories of their past lives. “Dementia patients live in the moment and have real needs in that moment,” she says.

Still, some family members may continue to object. How is such a situation handled? At the Hebrew Home, sexual expression and relationships that improve the resident’s quality of life are encouraged. “Unless there is a very compelling rationale for breaking up a resident relationship, the residents’ rights and the relationship are foremost,” Dessel says.

Family Matters
Communicating the importance of resident sexual expression to family members who may be embarrassed or even outraged is another important aspect for the social worker.

Lyons says, “The geriatric social worker is not only a staff educator and supporter of resident rights, but also a family liaison.” She refers to helping the family of residents with dementia deal with feelings of hurt or embarrassment resulting from a resident’s sexual expression as “fall-out therapy.” Family counseling sessions to explain how dementia affects mental capacity and sexual behavior can help spouses and adult children better understand the disease and the benefits of human touch and companionship. “It is our job as social workers to support the resident no matter what the diagnosis is, no matter what physical or cognitive toll it has taken on the individual. We have to support their choices. It’s our job to help their families understand,” Dessel says.

Usually, social workers are only required to involve family members when the resident has dementia. “Interaction with a resident’s family depends on the situation. If both residents are competent and the relationship is consensual, then the family is informed only with the resident’s request and permission,” says Bradley.

Some residents keep relationships with other residents a secret from family members because they may worry the family will not approve or will be upset. This is especially true when the resident has lost a spouse and has not had another relationship until finding companionship at the long-term care facility. “We can help the resident ‘neutralize’ this information with the family and communicate the value of the relationship,” says Dessel.

Progress for the Future
Based on communications and questions from staff at other facilities, Dessel believes there is a greater recognition of geriatric sexuality, and a move toward understanding that sexual expression is a reality in long-term care. “It is prudent to acknowledge resident sexuality to plan for these situations,” she says.

Bradley says most facilities she works in do not have specific policies for residents’ sexual expression. Delgado and Lyons both note that there has been a rise in consciousness about residents’ rights to sexual expression at MPTF, but there is also continued embarrassment and discomfort among the clinical staff. “We are not anywhere close to actively promoting sexual expression,” says Delgado. “For residents to thrive in long-term care, we do need to look at every aspect of well-being, and that includes intimacy with other residents,” she adds.

As our aging population continues to increase, so too will issues related to freedom of sexual expression. At a recent conference where she presented information on the Hebrew Home’s policies and procedures, Dessel was faced with objections from some participants, who mistakenly view her facility as promoting sex among residents. “We are supporting and upholding resident rights. We are not promoting sex,” Dessel emphasizes. “Why deny or dismiss a relationship at a point in their life when so little is left that is meaningful, when the joys in life are so limited?”

— Jennifer Sisk, MA, is a suburban Philadelphia-based freelance writer with 15 years of experience as a writer and a research analyst in the healthcare field. She has written on depression, attention-deficit/hyperactivity disorder, schizophrenia, mental wellness, and aging.

Resources:
Ginsburg, T. B., Pomerantz, S. C., Kramer-Feeley, V. (2005). Sexuality in older adults: Behaviours and preferences. Age and Ageing. 34(5):475-480.

The Hebrew Home of the Aged at Riverdale. “Freedom of Sexual Expression: Dementia and Resident Rights in Long-Term Care Facilities” video. 2002.

Kamel, H. K. (2001). Sexuality in aging: Focus on the institutionalized elderly. Annals of Long-Term Care. 9(5):64-72.

Wallace, M. (2003). Sexuality and Aging in long-term care. Annals of Long-Term Care. 11(2):53-59.

For some residents, a same-sex relationship may develop for the first time in the long-term care setting. For example, two widows may be drawn to each other as they grieve and reminisce about their departed husbands, and progress to what some may perceive as a lesbian relationship. Sleeping together, hugging, and holding hands can bring the comfort of human touch and affection, regardless of whether there is sexual consummation. At the Hebrew Home, such positive same-sex relationships are supported. “There is no distinction in rights for same sex relationships. It’s a universal policy,” says Robin Dessel, LMSW, assistant director of social services at Hebrew Home for the Aged in Riverdale, NY.

According to the recently formed Gay & Lesbian Association of Retiring Persons, Inc., older gay and lesbian individuals are more likely to live alone and lack support from friends and families as they age. Being forced into isolation as they age can lead to depression and decreased quality of life. In response to the aging gay and lesbian population and their desire to age in a setting where they do not feel obligated to hide their sexual orientation, retirement communities and long-term care facilities dedicated to serving aging gay men and lesbians are being established.

— JS

Resources:
Edwards D. J. (2001). Outing the issue. Nursing Homes. Available at: http://www.nursinghomesmagazine.com/Past_Issues.htm?ID=387

Senior Action in a Gay Environment Web site: www.sageusa.org