Sex Among Dementia Patients Spurs Call for Policies
By Bryan Gruley; Bloomberg; 10/28/13
An association of experts who work at hundreds of elderly-care facilities in the U.S. is calling on the homes to reconsider their guidelines or, in most cases, lack of guidelines on geriatric sex.
AMDA, formerly known as the American Medical Directors Association, said it took the steps following articles released by Bloomberg News uncovered the under-examined challenges and consequences of sex involving the demented at U.S. facilities.
A number of nursing home companies are already reviewing their policies in light of the stories. Hebrew Health Care, a non-profit owner of a wide variety of elderly-care services in West Hartford, Connecticut, began creating a policy and training in September, stated Pamela Atwood, its director of dementia-care services.
“What our company would love to see is assuming that intimacy and sexuality is normal, because it is,” Atwood said. “We’re looking at taking good care of the baby boomers. These folks burned their bras and created the pill. Do we really think they’re not going to be sexual?”
Nursing homes and various other long-term care facilities are commonly unprepared to deal with sex among expanding populations of residents with dementia, partially because directors, employees and family members are reluctant to discuss or even acknowledge elderly sexuality, AMDA concluded after a survey of medical professionals and other healthcare professionals who work with elderly care facilities throughout the U.S.
As the baby boom generation ages, “there is a rising need for change in policies and institutional practices focused on intimacy and sexual behavior,” Columbia, Maryland-based AMDA said. “While the mandate is clearly identified, silence and invisibility with regards to this matter seem the prevailing paradigm.”
The latest AMDA survey and interviews with caregivers suggest the issue is a very low concern for most facilities. Just thirteen percent of survey participants said they work with facilities that provide workforce training on sexual behavior, which the AMDA said suggests personnel are “considerably undertrained.” Fewer than 1 in 4 respondents said their facilities have guidelines addressing the issue, based on the survey. Nearly half of the respondents didn’t know whether or not their facilities have policies.
‘Intimacy and Dying’
“Sex and death, no one wishes to talk about them,” said one particular health-care specialist commenting anonymously in the survey. “We have to discuss them.”
AMDA represents 5,500 doctors, nurse practitioners and various 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 group commissioned the survey of 121 senior and 54 younger affiliates in response to the Bloomberg News reports, released in July. Quite a few of those who were surveyed work at a number of 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 very first of the Bloomberg News stories concerned a 78-year-old divorced gentleman with dementia who was discovered having sex with an 87-year-old married female with dementia at an Iowa nursing home. The home’s manager determined the encounter was consensual. State regulators disagreed and cited the home for not reporting the event. The manager and nursing director were terminated, and the male resident was forced to transfer to a different facility nearly two hours away.
The second report focused on the Hebrew Home at Riverdale, New York, a nursing home that has had a policy on sex since 1995. The home isn’t connected to Hebrew Health Care in West Hartford.
According to the survey’s outcomes, AMDA is recommending elderly care facilities to look at setting up formal training programs and guidelines.
“Undoubtedly as dementias increase, I would really encourage all nursing homes to at least commence the dialogue,” AMDA Executive Director Christopher Laxton stated in an interview. “It doesn’t help to hide your head in the sand.”
More than 40 million individuals are 65 and above 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 likely to get to 56 million by 2020. Over 5 million individuals in the U.S. have Alzheimer’s, the most prevalent form of dementia, the Alzheimer’s Association says. The organization expects those 65 and over with Alzheimer’s to number 7.1 million by 2025.
Men and women are sexually active well into their 70s and 80s, analysis has found. For those with dementia, intimacy and sex can be a wholesome comfort as they lose comprehension of loved ones and friends. Federal government and state regulations require care facilities to respect residents’ rights to privacy, including that for kissing, fondling, intercourse and other sexual activity.
In interviews, physicians and other caregivers relate myriad situations necessitating difficult judgements by facility staff and family members: individuals with dementia who have forgotten who their spouses are and seek out intimacy with others; a husband who demands sex from his demented wife, despite her level of resistance; a demented female who has passionate sex with her husband, then attacks him for having an affair.
Juniper Communities of Bloomfield, New Jersey, operates eighteen nursing, assisted living and memory care facilities in four states. Juniper founder and Chief Executive Officer Lynne Katzmann said she’s analyzing guidelines from various other homes and plans to create a proposal that can be offered to focus groups at Juniper properties.
“It might not be the least difficult thing for us to deal with, but we’ll try,” she said.
Katzmann and others said installing guidelines is fraught with regulatory and legal risk, partially due to the fact there are no broadly accepted means of determining demented residents’ ability to consent. Many states call for elderly-care facilities to record potentially harmful sexual occurrences and –- as happened in the Iowa event –- can penalize those who neglect to do so by fining them or threatening to stop Medicaid and Medicare reimbursements.
“When it gets to dementia, there are so many parts of the puzzle, folks are terrified,” said Teepa Snow, a dementia care professional in North Carolina who works with dementia education and care providers. “Irrespective of what you do, somebody’s going to see you as incorrect.”
A lot of facilities are stretched in financial terms on account of cuts in government aid, leaving scant time for instruction.
“I spoke to an administrator who explained it was fine for me to come in and discuss sex policy, but I’d have to teach individuals in a half-hour between shifts,” said Melanie Davis, a sexuality training consultant in Somerville, New Jersey.
Douglas Wornell, a Tacoma, Washington, geriatric mental health expert who works with 23 facilities, said state government bodies likewise could benefit from education.
“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 teaching materials would be a big help, in part to teach staff to distinguish their personal religious, ethnic and other biases from their responses to sexual encounters.
Appropriately taught employees will adapt, said Gayle Appel Doll, director of the Center on Aging at Kansas State University. After developing training plans for Kansas facilities, “we were simply astonished” at the response, Doll stated. Staffers who recently had walked in on people having sex started knocking and waiting before coming into a room, she said. Staff also provided “Do Not Disturb” signs and set up mattresses on floors to help residents cuddle.
“The big picture is that modern society doesn’t see the sexual needs of the aging population as being worth their time,” said Patricia Bach, a neuropsychologist in Roseville, California, who helped put together the AMDA questionnaire. “Why is it ALL RIGHT 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 wonderful.’”
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 exact same emotional desires we all have. We have to find out how to meet them in the correct settings, with self-respect and respect to all the parties involved.”