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Dementia, sex worrisome mix

Nursing homes grapple with proper response

– On Christmas Day 2009, nurse Tiffany Gourley was called to a room at the Windmill Manor nursing home. She found a 78-year-old male resident who had just had intercourse with an 87-year-old woman. The man was divorced. The woman was married. Both had dementia.

What followed illustrates one of the most complex and unexamined issues facing elderly care facilities as the baby boom generation enters old age: How to determine whether residents with dementia have the mental capacity to consent to sex. The incident and its lengthy aftermath also show that nursing homes, regulators and families are not prepared to deal with that question.

“It ruined my life,” the director of nursing at the time, Karen Etter, said in an interview.

She was fired.

“It’s the most difficult thing I’ve ever had to live through,” said Steve Drobot, the former Windmill Manor administrator.

He was fired, too.

Sex among the elderly, especially those with Alzheimer’s or other types of dementia, is a subject that many of the nation’s 16,000 elderly care facilities have largely been able to ignore. The aging of the baby boomers will force more facilities and families to confront the sorts of legal, ethical and moral questions that arose at Windmill Manor.

More than 40 million people are 65 and older in the United States, according to the Census Bureau. Baby boomers, those born from 1946 to 1964, began moving into that group in 2011. That shift will help the $120.6 billion U.S. nursing home industry grow by an annual average of 3.6 percent to about $144 billion by 2018, according to industry research firm IBISWorld. The growth might be stronger if not for reductions in Medicare and Medicaid reimbursements and increased use of in-home services.

More than 5 million in the U.S. have Alzheimer’s, the most common form of dementia, the Alzheimer’s Association says. Barring medical breakthroughs, the association expects the number of those 65 and older with Alzheimer’s to grow to 7.1 million by 2025.

The craving for human touch doesn’t vanish with age. A 2007 study published in the New England Journal of Medicine said 53 percent of people 65 to 74 years old and 26 percent of those 75 to 85 reported being sexually active. Half of those active in the older group reported having sex two to three times a month.

These proportions are likely to grow with the aging of a generation that is sexually freer. For those with dementia, intimacy and sex can be a comfort as they gradually lose comprehension of family and friends, research has found.

In Alzheimer’s patients, touch is often the last sense to deteriorate.

Sex between those with dementia raises questions that make it difficult for facility staff to know whether they should report cases of potential abuse to authorities.

In the Iowa case, Windmill Manor took steps to discourage the man following earlier encounters with female residents. Early on the evening of Christmas, two nurses reported they’d seen the man and woman engaged in intercourse.

It was up to administrator Steve Drobot to decide whether to notify state regulators. Drobot had to determine whether they had the capacity to consent. He wasn’t required to report consensual sex if there were no physical injuries or other threats to either resident’s safety.

Many facilities broadly believe residents have the right to anything they’d be guaranteed outside the facility, as long as it doesn’t impinge on the rights or safety of others.

Laws and guidelines on how to make such decisions vary widely, where they exist at all, according to experts on elderly sex.

“In dementia, especially of Alzheimer’s type, the continuum constantly changes,” said Ed McMahon, national director of quality for Golden Living, a Plano, Texas, company that operates more than 300 nursing homes. “A person can be more high-functioning in the morning than they are in the evening.”

Drobot concluded he didn’t need to report the episode because there was no injury or evidence of force. He also thought the woman was aggressive and vocal enough that she would have made it clear if she were unwilling, state documents show.

Windmill Manor still took steps to avoid more sexual encounters between the two.

In early 2010, investigators were looking into another matter at Windmill Manor when they heard about the sex. Investigators then spent about two weeks interviewing Drobot and his staff.

On March 12, an official at Inspections and Appeals called Drobot. The official said that, because it had failed to protect the woman from the man, Windmill Manor was in “immediate jeopardy” of being disqualified from caring for residents whose stays were underwritten by Medicaid or Medicare. That amounted to a death threat because the government programs accounted for most of Windmill Manor’s revenue.

The home immediately acted to have the man discharged. He left Windmill Manor on March 17 for another facility.

Within a week, both Drobot and director of nursing Karen Etter were fired. The reasons weren’t made public. Six weeks later, the Department of Inspections and Appeals concluded the woman had been “sexually assaulted” and Windmill Manor had failed to report it. The agency fined the home $47,000. The home later agreed to pay a $14,500 fine without admitting to wrongdoing.

The woman died in September 2010 at another facility. Hours before her death, her son told his father for the first time about the Christmas incident. The woman’s husband told her he forgave her and “there was nothing she could have done,” according to a lawsuit filed by the woman’s family in January 2011.

The lawsuit said the woman had been raped and that Etter, Windmill Manor and its corporate affiliate, RFMS, were responsible. The defendants’ lawyers responded that the woman had engaged in sex voluntarily. For more than a year, arguments in the case focused less on whether a rape occurred than whether RFMS could be held liable. Attorneys for both sides declined to comment.

The man died in December 2010.

Ten months after leaving Windmill Manor, Drobot landed a job at an assisted-living facility in Cedar Rapids, Iowa. He left in June 2012 after the Iowa Board of Nursing Home Administrators accused him of professional incompetence, negligence and other infractions related to the sexual incidents at Windmill Manor.

He faced the possibility of losing his administrator’s license. Drobot, several nurses, three experts and a state investigator testified at a July 2012 hearing that was closed to the public. Once again the crucial question was whether the woman had the capacity to consent.

In September, almost three years after the incidents, the Iowa nursing home board essentially acquitted Drobot, saying it couldn’t conclude that he should have reported the incidents or that he’d been incompetent. The board said testimony that the sex was consensual was “more persuasive.” The board cited Drobot for not following proper procedures in discharging the man from Windmill Manor.

Two months later, the woman’s family settled the rape lawsuit. The terms weren’t disclosed.