Somebody to love.

At a national conference as recently as 1992, an administrator asked peers to indicate how many of their facilities had sexually active residents with dementia. No one raised a hand.

"Every administrator knows residents are sexually active, and our residents weren't any different," says Daniel Reingold, JD, MSW, executive vice president of The Hebrew Home for the Aged at Riverdale, a 1,100-bed multisite, multilevel facility and research center. "We weren't the only ones facing these issues, but nobody wanted to collaborate."

The Riverdale, N.Y.-based Hebrew Home's unique, innovative policy governs intimacy and sexuality for cognitively intact residents and those with dementias. But although providers today acknowledge resident sexuality internally, few speak publicly.

This past January an industry representative said, "That's not an issue in assisted living. Most of our residents drive, so if they want to do that, they can go somewhere else."

Residents are not going someplace else to "do that." They're doing it in private and in public, in beds and wheelchairs and sitting rooms, in continuing care retirement centers, assisted living facilities, and skilled nursing facilities. Whether "that" is social intimacy or sexual intercourse, the response of staff members, visitors, families, and other residents ranges from acceptance to abhorrence to accusations of abuse.

Sixties-generation baby boomers aren't clamoring for change: many are aghast at senior sexuality and worried about its impact on finances and family loyalties. Instead, residents in their seventies, eighties, and older are requesting everything from pornography to double beds.

Some are getting it. Instead of leading social change, baby boomers are lagging behind.

Touchy issues

Some facilities have quietly accorded couples privacy for decades, if not in their rooms, then in other areas of the facility, says Carol Ianuzzo, BSW, social services director at Penn Yan Manor (N.Y.) Nursing Home, a 46-bed SNF. At a Saratoga, N.Y., facility in 1975, one couple visited an unused unit's parlor several times weekly. "That was their private time, and staff didn't go in," she says.

"Today, by state law, facilities must accommodate privacy needs of consenting adults. Some people still think residents shouldn't have sex at their age. With education, they can get over the giggles and discomfort, and learn not to judge people according to their own values," says Ianuzzo.

The American Health Care Association is publishing a curriculum to help facilities develop policies. HCR Manor Care's medical director, Phillip Sloane, MD, developed a corporate intimacy policy, but a Manor Care spokesman couldn't determine its post-acquisition status.

The New York State Department of Health just awarded a $250,000, 18-month grant to The Hebrew Home to develop training modules, including a video, to train staff members and sensitize families at other facilities on sexuality and intimacy issues for residents with dementias. This pilot project "will help spark continued innovations in the way care is provided in nursing homes," said Gov. George E. Pataki in announcing the grant.

Increased sexual issues prompted John Luken, LCSW, a LaGrange, Ky., consultant for 17 LTC facilities, to develop staff education on intimacy and sexuality. "I used to get questioned by staff members twice a year," he says. "Now I get weekly calls. Administrators are indecisive because they're more cognizant of residents' rights to self-determination, privacy, and morals, but they've been burned so often by resident rights that they're unsure whether or not to encourage intimacy."

Sensitive issues include knowing which behaviors are and aren't staff business; dealing with a variety of moral and religious beliefs; providing privacy; protecting observers from potentially offensive behaviors; coping with families' opposition; and handling residents' needs for information and materials on all aspects of sexuality, diseases, and erectile dysfunction.

Conservatives or progressives both outside and inside facilities may ridicule providers who take a position. Since 85 percent of residents aren't married, legal issues and family concerns further complicate relationships that might otherwise be celebrated as last chances at love.

"Everyone's definition of 'sexually active' differs, and the intimate behavior continuum ranges from touching, hugging, and kissing to fondling, masturbation, and intercourse, "says Luken.

"In workshops, when I ask what's appropriate in nursing homes, some say none are, they're things you do in your own home. But these are their homes, and if anyone ever needed something mentally, physically and emotionally good for him or herself, it's the nursing home resident. We should do everything possible to promote relationships because they're dealing with such isolation and loss."

Sexual activity can relieve depression and physical pain, promote health and healthy self-images, provide safe exercise, and prevent social disengagement. "Residents who aren't sexually active have needs for love, touch, and intimacy," Luken says. "Often the only touch they get is something medical that hurts. We must be creative and innovative to provide opportunities for cherished moments."

"Caring never grows old, whether you're 50 or 90," agrees Nathan, an octogenarian resident at The Hebrew Home. In "the golden [years] of your life, it's wonderful to have someone you care for. Sex is beautiful under the right circumstances. But it's not just sex, it's everything else--movies, dinner, holding hands. It makes life more complete." He and his companion have been "keeping company" for six years, accepted as a couple by both families and residents.

"They recognize when people care for one another, and most don't object to affection and intimacy if you handle yourselves discretely. But some are narrow-minded, and others resent the affection," he explains.

Residents desiring privacy can lock doors or put stickers over locks to indicate their rooms are occupied--and the reason is nobody's business. "Where there's a will, there's a way, and our relationship was meant to be," says Nathan. "The policy offers another dimension: it makes intimacy and personal relationships more acceptable."

He continues, "Many residents come with resentment. I've found a new home and a new life. The more caring we get, the happier we are, and the better prepared to face whatever comes in the future."

Defining sex

The Hebrew Home defines sexually oriented expression as: "words, gestures, or activities [including reaching, pursuing, touching or reading] which appear motivated by the desire for sexual gratification." According to The Hebrew Home's policy respecting emotional and physical intimacy, residents have the rights to sexual expression among themselves or with visitors; access private space to the extent possible; obtain legal, sexually explicit materials for personal use; and receive professional counseling on sexual expression.

Designated representatives (adult children or spouses) for residents with impaired cognition/judgment participate in the Interdisciplinary Care Team's clinical judgments regarding potential harm, benefits, and appropriate sexual expression. Staff members are responsible for not intervening in sexual expression, except if it actually or threatens to infringe on the rights and sensibilities of The Hebrew Home's community, or involves non-consensual acts, minors, or cognitively or judgmentally impaired residents. The staff is responsible for helping residents obtain privacy and requested counseling, and reporting situations not covered by the policy.

The Hebrew Home is responsible for providing privacy, and offering orientations and sensitization training specifically tailored to a variety of staff positions. The Hebrew Home developed its 1995 policy to further the quality of life, but recognizes legal aspects, too.

Grown-ups will be grown-ups

Whether someone wants privacy or pornography, "It's not about our 'views or Orthodox Judaism, but about their civil rights," says Reingold. "We have an affirmative obligation. We're here to create an environment that allows grown-ups to do what grown-ups do. That's profoundly changed staff outlook. Instead of 'Isn't that cute,' they're sensitive to the beauty of two older people finding a soulmate. It's very poignant. What could be better?"

Empowering the staff contributes to low turnover, says Reingold. "It's no different than teaching them that when there's a fire, they shouldn't just call the fire department, they should take care of it," he points out. "We respect their intelligence and ability to identify behaviors and use protocols. They know when to intervene and when to involve the care team."

Three years ago, the nonsectarian Hebrew Home began operating the Baptist Nursing Home and found its staff, composed of 84 nationalities, equally accepting. Initial hour-long training sessions were conducted group by group, unit by unit. It took months to reach everyone. Of course, most staff members here remain 15 to 20 years, so other facilities with a higher rate of turnover may find training more labor intensive.

Orientation and regular in-services emphasize responsibility to ensure and enable residents' rights to sexual intimacy, and comradeship. Problematic case histories help staff members determine which require privacy and which require intervention.

From the beginning of implementing the new policy, managers recognized the need for position-specific training. Aides and housekeepers, who are most likely to encounter intimacy, discuss appropriate responses and bodily fluid issues. Professional staff members address concerns regarding documentation and planning.

Training also addresses values and morality. Staff members who are uncomfortable with resident intimacy (including non-marital or homosexual relationships) because of religious or personal convictions can transfer to other floors. "We're not looking to convert staff members, we're promoting residents' rights," explains Robin Bouru, CSW, social work supervisor.

Homosexual relationships occur, but usually aren't formally acknowledged by residents. Bourn says that today's residents might be progressive about advances in technology, but they are still very rigid and conscious of normative behaviors and their cohorts' societal expectations. Further, women's close relationships are based more in caring friendship than sexual intimacy, she says. "Women do gravitate to women, perhaps because there are more of them here," Bourn says.

Practical issues include finding space for privacy, particularly for unmarried couples who can't live together. The Hebrew Home tries to give a private room to one member of established couples. Residents don't have to be private pay to get private rooms, but because residents with medical needs get priority, those private rooms are in demand. Since all residents have equal privacy rights, staff members may meet with roommates to review activity schedules and determine when each is usually away. That gives both roommates a sense of equal time and control without explaining why one desires scheduled privacy. If roommates complain, then room changes are offered when available.

The family's role

One difficulty is reconciling family roles and resident rights. Even families of cognitively intact residents may feel betrayed and distressed after discovering a parent's sexually active or social involvement with a new partner, particularly of he or she is still married.

"In dementia, it's a double affront because a resident might not recognize a visitor as a child or spouse, but demonstrates the ability to love," notes Bouru. "It's difficult to be subject to the losses and ravages of the disease. It's egregious to deal with a bond to another person."

Some families ask staff members to intervene or move their relative. Others accept and even appreciate the happiness, security, and intimacy that some residents find together.

When one family learned their father/husband was involved with another resident, they asked the staff to separate the couple. A facility social worker helped the children and the resident's wife grieve their loss. Ultimately, they reconsidered removing the resident from the security, loving relationship, and sense of family he had found on his unit.

When a resident is mentally incapacitated, the family has the right to know. "It's not up to the staff to determine what to refer to families of residents with dementia," says Bouru. But even without legal roles as patient representatives, facilities may be obligated to tell regular family visitors about relationships and help them deal with feelings of anger, loss, betrayal, and fear. "We believe families should be informed because they're partners in care," she says.

Since cognitively intact residents are encouraged but can refuse to inform families about their relationships, Bouru was dismayed when a nurse wanted to inform their respective families that two residents had become a couple. It turned out to be a heartfelt desire to tell the families the twosome had found each other, so they could share and celebrate.

Family acceptance and acknowledgment enriches resident relationships. Some families visit the couple as a couple. For instance, one daughter regularly took her father out to dinner with his companion, who had early dementia, after the woman's daughter gave her consent.

Pillow talk

Many men in The Hebrew Home live on nursing and dementia floors, but have relationships with women on other floors. Some couples' nightly rituals include putting a partner to bed, remaining until he or she falls asleep, then returning to his or her own bed for sleep, care, medications, and supervision.

Dozing off together allows them to feel protective or protected while keeping their own space. But bedtime can be a lonely and vulnerable time, particularly for residents accustomed to the warmth, intimacy, and security of shared beds. Residents may fall asleep wondering if they'll see the morning or the condition they'll be in.

If residents ask to sleep together, The Hebrew Home will consider it. So far, they haven't asked, but they may simply accept single beds or separate rooms as institutional realities like scheduled meal and bath times. As more established and married couples require some level of care, cohabitation has become more frequent. But facilities can't make assumptions.

On admission, staff members should interview couples separately and together to ask about rooming together and dining room seating, advises geriatric care manager Anne Rosenthal, PhD, MFCC, director of community services at the Home for Jewish Parents, Danville, Calif. "Some couples see benefits to maintaining their marriage and care for each other, but don't get along and maintain separate social lives," she says. "It happens more frequently than we expect, and more often as we live longer."

Fulfilling needs

Others need respite from the demands of their spouse, cautions Deborah Sparks, social services director at Parkway Medical Center, a 252-bed skilled and intermediate care facility in Louisville, Ky. "We monitor couples for the role-playing they've done all their lives. One husband was wearing out his wife by asking her to get things and tend to his needs."

Parkway Medical Center has had as many as three sets of couples living in its rehab unit at the same time. Parkway has also seen sequential and concurrent relationships--one man had six female partners--but more residents seek companionship than sex, says Sparks.

"The next generation will ask for sexual rights more readily," predicts Sparks. "It's hard for residents now to discuss sexuality and needs; they're reserved. You have to see what they want."

Recently, one couple at Parkway wanted a double bed. June, 75, met fellow resident Charles "Chico" Byars, 65, last year while helping the former Golden Gloves boxer at Bingo.

"Thank God, he woke me up to love and desire, things I thought I put away forever," says June. "We're very proud of ourselves. We accept each other wholeheartedly."

"With our souls," Chico concurs. "We're very much in love."

Staff members and other residents followed their courtship with fascination and curiosity. "Our relationship turns some of them on," says June. "They assumed we were intimate."

They were, but it was challenging for June, completely paralyzed on one side since a stroke, and Chico, an amputee. "We spent 10 months kissing, fondling, and making love as best we could in our wheelchairs," says June. "But there wasn't enough room in my bed. Chico fell out twice."

After their facility wedding this past winter, the couple considered tying two beds together. In January they got a double bed, which brings them even closer, says Chico. [Most commercial laundry services provide double bed linens for hotel customers.]

"There's no code issues, because our rooms accommodate the bed and wheelchairs, and there aren't side rails because we're restraint-free," says Sparks, sounding as delighted as the couple. "I wouldn't be surprised to see more of it. Everyone likes to be close and say goodnight."

"When I try to talk to administrators, doctors, and children [of residents] about sexuality among seniors, they look like they're going to throw up," says William F. Fitzgerald, PhD, clinical psychologist at Silicon Valley Relationship and Sexuality Center, Santa Clara, Calif. He often speaks to seniors and long term care facilities on the importance of continued sexuality.

"When they sit it on my discussions with residents, they're amazed by the ease of participation. Women are particularly direct, practical, candid, and amazingly open if you validate their feelings that it's okay to continue to be sexual. One trio of ladies in their 80s discussed [sexual aids]. It's a tremendous relief for them to be able to talk honestly," Fitzgerald says.

Unfortunately, that type of candor rarely extends to providers or sexual partners, and repercussions can be severe. "For sexually functional men, the higher ratio of women can be an adolescent dream," says Fitzgerald. "Physicians call them 'condo cowboys.' You'd expect seniors to be mature, but they're like teenagers. They don't dare ask to use condoms, fearing it accuses partners of sex with others, or STDs, and they don't want to be cut off from having sex. Yet, when frail ladies having unprotected sex have sudden pneumonia or die, we don't test for HIV. Instead of making assumptions about the cause of death, we should order blood tests."

It's also possible that vaginal and urinary tract infections plaguing some residents result from the resumption of sexual activity. "Continuing sexuality, alone or with a partner, decreases the thinning of vaginal mucosa and loss of lubrication," he says. "When women who haven't had sex for five years have intercourse, the tissue tears, allowing infection. Asking if infections are more frequent after intercourse relieves their embarrassment, and proactively asking them to try vaginal lubricants decreases their sense of shame."

Despite reading more than 20,000 histories and physicals, consultant Luken has never seen one discuss sexual activities. "It's one thing to ask [about their sexuality], its another to know what to do," he says, referring to how it might affect other aspects of their health, or how other aspects of their health care might affect their sexual activities. At least staff members should know how medications and medical conditions affect sexuality.

The real challenges

The biggest challenges are dealing with dementias and determining competence. "Even people with advanced Alzheimer's can make some choices," says education director Daniel Kuhn, MSW, of the Mather Institute on Aging, Evanston, ill.

Facilities worry that those suffering from dementia "are easy marks for sex," he continues, "but why shouldn't we enable loving, monogamous relationships to flourish? If we believe in OBRA '87, rights to privacy, and free association, then they apply to dementia care as well."

Past behaviors provide clues, but don't constitute rules. "Nobody can tell if past values are important if we have dementia," he points out. "Perhaps we have different needs, or accept partners who would've been unacceptable before."

Residents who don't willingly consent to sexual or marital relations need the same protection as any rape victim. But once someone relinquishes the care of a spouse over to a facility, he or she rarely engages in sexual intercourse with that spouse because it's no longer the loving act that they once enjoyed, Kuhn found. "It's tragic if they try to deny changes or recapture something lost," he says. However, "They may find satisfaction in walks, dancing, massage, and non-sexual activities," he says.

Recognizing behaviors

Rosenthal cautions facility staff members to avoid misreading behaviors as sexual. Residents' ongoing needs for nonsexual touch and relationships with staff members and visitors may be blocked by facilities that are excessively afraid of intimacy, some experts agree.

While it's appropriate to set limits, provide redirection, and tell residents when staff members don't like their behavior, it's not appropriate to withdraw to avoid exciting them, Kuhn says. Caregivers need to identify ways to address boredom, loneliness, and the need for intimacy and physical touch.

"Men may unzip their trousers because they need the toilet, women may unbutton their shirts because they're hot, and they lack vocabulary to express themselves," she says. "Fidgeting results from boredom, and handling genitals can signal urinary tract infections." Since disoriented residents may mistake staff members for their spouses, or engage in sexual behavior publicly, staff members must know how to distract them, redirect them, and provide privacy.

"Caregivers need humor and sensitivity to decline requests to climb in the tub or bed with residents," says Allison Watson, social services director at New Mercer Commons, Fort Collins, Colo., a 112-bed ALF specializing in dementia care. "After sleeping 65 years with a spouse, it's not surprising they climb in with other residents." Residents are usually gently redirected to their rooms. With family consent, couples who repeatedly seek each other may remain together. One unmarried couple shared a room and spooned together in twin beds.

Even when residents desire intimacy, it's difficult to determine competence. "Objective reasoning doesn't mean residents have good judgment, and some with sound judgement lack short-term memory," notes Watson. (Currently, Texas is struggling to define consensual sex, inappropriate sexual behavior, and abuse. See State News, page 16.)

New Mercer's handbook addresses sexuality right along with television services and salon prices. "Intimacy is a basic level of respecting humanity, like church services and meals," says Watson. "If you're serving residents with integrity, you can't excise it from who they are."

Contributing writer Wendy L. Bonifazi, RN, APR, covers health and aging from Fort Collins, Colo.