Sex among demented sparks call for policies
AMDA, formerly known as the American Medical Directors Association, said it took the action after articles published by Bloomberg News exposed the under-examined issues and consequences of sex between the demented at U.S. facilities.
Some nursing home companies are already reviewing their policies in light of the stories. Hebrew Health Care, a non-profit operator of a variety of elderly-care services in West Hartford, Conn., started developing a policy and training in September, said Pamela Atwood, its director of dementia-care services.
"What our organization would love to see is assuming that intimacy and sexuality is normal, because it is," Atwood said. "We're looking at taking care of the baby boomers. These folks burned their bras and developed the pill. Do we really think they're not going to be sexual?"
Nursing homes and other long-term care facilities are widely unprepared to deal with sex among expanding populations of residents with dementia, partly because administrators, staff and families are reluctant to discuss or even acknowledge elderly sexuality, AMDA concluded after a survey of physicians and other medical professionals who work with elderly care facilities across the U.S.
As the baby boom generation ages, "there is a growing need for change in policies and institutional practices focused on intimacy and sexual behavior," Columbia, Md.-based AMDA said. "While the mandate is clearly recognized, silence and invisibility regarding this issue seem the prevailing paradigm."
The recent AMDA survey and interviews with caregivers suggest the issue is a low priority for most facilities. Only 13 percent of survey respondents said they work with facilities that provide staff training on sexual behavior, which the AMDA said means employees are "significantly undertrained." Fewer than one in four respondents said their facilities have policies addressing the problem, according to the survey. Almost half of the respondents didn't know whether their facilities have policies.
"Sex and death, no one wants to discuss them," said one health-care professional commenting anonymously in the survey. "We need to talk about them."
AMDA represents 5,500 physicians, nurse practitioners and other professionals who provide medical care to nursing homes, assisted living facilities, hospices and other elderly care institutions. Each of the nation's 16,000 licensed nursing homes is required by law to have a medical director.
The organization commissioned the survey of 121 senior and 54 younger members in response to the Bloomberg News stories, published in July. Many of those who were surveyed work at multiple facilities, with all states represented. At AMDA's request, Bloomberg News made suggestions for the survey that were reflected in three of the 14 questions.
The first of the Bloomberg News stories concerned a 78-year-old divorced man with dementia who was found having sex with an 87-year-old married woman with dementia at an Iowa nursing home. The home's administrator decided the encounter was consensual. State regulators disagreed and cited the home for not reporting the episode. The administrator and nursing director were fired, and the male resident was forced to move to another facility almost two hours away.
The second story focused on the Hebrew Home at Riverdale, N.Y., a nursing home that has had a policy on sexuality since 1995.
Based on the survey's results, AMDA is urging elderly care facilities to consider installing formal training programs and policies.
"Certainly as dementias increase, I would encourage all nursing homes to at least begin the conversation," AMDA Executive Director Christopher Laxton said. "It doesn't help to hide your head in the sand."
More than 40 million people are 65 and over in the U.S., according to the Census Bureau. As the baby boomers, those born from 1946 to 1964, move into that population, that number is expected to reach 56 million by 2020. More than 5 million people in the U.S. have Alzheimer's, the most common form of dementia, the Alzheimer's Association says. The association expects those 65 and over with Alzheimer's to number 7.1 million by 2025.
People are sexually active well into their 70s and 80s, research has found. For those with dementia, intimacy and sex can be a healthy comfort as they lose comprehension of family and friends. Federal and state laws require care facilities to respect residents' rights to privacy, including that for kissing, fondling, intercourse and other sexual activity.
In interviews, doctors and other caregivers relate myriad situations requiring difficult decisions by facility staff and families: people with dementia who have forgotten who their spouses are and seek intimacy with others; a husband who demands sex from his demented wife, despite her resistance; a demented woman who has passionate sex with her husband, then attacks him for having an affair.
Juniper Communities of Bloomfield, N.J., operates 18 nursing, assisted living and memory care facilities in four states. Juniper founder and Chief Executive Officer Lynne Katzmann said she's analyzing policies from other homes and plans to develop a proposal that can be presented to focus groups at Juniper properties.
"It may not be the easiest thing for us to address, but we'll try," she said.
Katzmann and others said installing policies is fraught with regulatory and legal risk, partly because there are no widely accepted means of determining demented residents' capacity to consent. Many states require elderly-care facilities to report potentially harmful sexual incidents and -- as happened in the Iowa case -- can penalize those who fail to do so by fining them or threatening to cut off Medicaid and Medicare reimbursements.
"When it gets to dementia, there are so many pieces of the puzzle, people are terrified," said Teepa Snow, a dementia care specialist in North Carolina who works with dementia education and care providers. "No matter what you do, somebody's going to see you as wrong."
Many facilities are stretched financially because of cuts in government aid, leaving scant time for training.
"I talked to an administrator who said it was fine for me to come in and talk about sex policy, but I'd have to train people in a half-hour between shifts," said Melanie Davis, a sexuality education consultant in Somerville, N.J.
Douglas Wornell, a Tacoma geriatric psychiatrist who works with 23 facilities, said state regulators also could benefit from training.
"I'm not so sure it's just a problem with the facilities," said Wornell, whose book, "Sexuality and Dementia," will be published in December.
Seventy-one percent of those polled by AMDA said training materials would be a big help, in part to teach staff to separate their personal religious, ethnic and other biases from their responses to sexual encounters.
Properly trained staff will adapt, said Gayle Appel Doll, director of the Center on Aging at Kansas State University. After developing training programs for Kansas facilities, "we were just amazed" at the response, Doll said. Staffers who previously had walked in on residents having sex started knocking and waiting before entering a room, she said. Staff also supplied "Do Not Disturb" signs and arranged mattresses on floors to help residents cuddle.
"The big picture is that society doesn't see the sexual needs of the elderly as being worth their time," said Patricia Bach, a neuropsychologist in Roseville, Calif., who helped assemble the AMDA survey. "Why is it OK for Hugh Hefner to have babes crawling all over him at the Playboy mansion? If you were 87 in a care facility behaving like that, nobody would be saying, 'That's nice.'"
Thomas Lehner, a physician and medical director whose practice works with more than 60 long-term care facilities in Ohio, said, "We have to remember that these are human beings that have the same emotional needs we all have. We have to figure out how to meet them in the right settings, with dignity and respect to all the parties involved."
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