Boomer sex with dementia foreshadowed in nursing home

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Mark Carter, left, and Ellen Carter, right, married residents of the Hebrew Home at Riverdale, hold hands while listening to a piano concert. The 870-resident home has had a written policy on sexual expression since 1995. Photographer: Michael Nagle/Bloomberg

At 8:30 p.m. on Christmas Day 2009, nurse Tiffany Gourley was called to a room at the Windmill Manor nursing home in Coralville, Iowa. She found a 78-year-old male resident who had just had intercourse with an 87-year-old woman. The man, a former college professor, was divorced. The woman, a retired secretary, 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 if residents with dementia have the mental capacity to consent to sex.

The Windmill Manor 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, many of whom grew up in the 1960s sexual revolution, will force more facilities and families to confront the sorts of legal, ethical and moral questions that arose at Windmill Manor.

Industry Growth

More than 40 million people are 65 and over in the U.S., 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 over with Alzheimer's to grow to 7.1 million by 2025.

Human touch

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 -- that is, having sexual contact such as kissing, fondling or intercourse with another person. 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, living longer and has access to drugs such as Viagra. (PFE) 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.

"You can get responses from people in the final stages of the disease by giving them a massage or a pedicure," said Beth Kallmyer, vice president of constituent services for the Alzheimer's Association.

Aging Boomers

Elderly care facilities already face changes related to sex as Boomers retire. Rates of chlamydia and gonorrhea among people age 55 and older -- while small -- rose from 2010 to 2011, according to the Centers for Disease Control and Prevention. The number of elderly living with HIV or AIDS is likely to grow as the younger population ages.

Nursing homes have long struggled with episodes of rape in which victims clearly didn't consent. Sex between the demented raises more-nuanced questions that make it difficult for facility staff to know whether they should report cases of potential abuse to authorities. In cases that are reported, facilities and residents often are anonymous because of state and federal privacy measures.

The story of what happened at Windmill Manor was assembled from hundreds of pages of documents filed with Iowa regulators and courts, as well as interviews. Bloomberg News is withholding the names of the man and woman involved out of respect for their privacy and that of their families.

Windmill Manor is a one-story, red-brick building set on a rise overlooking Interstate 80 in Coralville, a suburb of Iowa City. The 120-bed home is owned by Residential Alternatives of Iowa, part of RFMS Inc. of Galesburg, Illinois, which also runs nursing homes in Illinois and Nevada. Stacey Cremeens, Windmill Manor's current administrator, declined to comment for this story. RFMS officials didn't respond to interview requests.

Caring boss

In November 2009, Steve Drobot had been administrator of Windmill Manor for almost a year. Drobot, 51 years old, is a slight, plain-spoken man with a neatly trimmed beard and thinning gray hair. He began working in institutions that care for the elderly in 1993.

"I can honestly say that I loved every day working with the elderly," he said in a brief interview in Iowa in May. "They have great stories to tell."

In testimony to the Iowa Board of Nursing Home Administrators, a regulatory body, three staffers who worked with Drobot at Windmill Manor praised him as a caring, hard-working boss who helped out in the dining room and personally responded to resident call lights.

"He was wonderful," Etter, the former director of nursing, said in an interview.

Registered nurse

Etter became a registered nurse in 1991 in a career shift prompted by the end of her first marriage. She later moved to Iowa from Illinois to care for her father, who had Alzheimer's, and joined Windmill Manor as nursing director in July 2008.

She quickly gained a reputation as a no-nonsense boss. Several nurses told state regulators that Etter warned them they could be fired if they reported any resident incidents to state officials before first speaking with her or Drobot. Etter told Bloomberg News she was enforcing the nursing home's chain of command.

At about 3:30 a.m. on Nov. 17, 2009, nurse Starla Wheelock checked a woman's bedroom in Windmill Manor's unit for residents with dementia. The woman and a man from a room across the hall were in bed talking, naked from the waist down, according to documents filed with state regulators. The woman became upset when the nurse asked the man to dress and return to his room.

The situation wasn't entirely a surprise. The two had been friendly, holding hands and telling stories, since the man was admitted the week before. The dementia unit coordinator told regulators that the two "gravitated toward" each other, and that the woman called the man by her husband's name and was calmed by his presence.

"˜Sexually assertive'

The man was a retired college professor and author who loved University of Iowa sports. He had dementia, colon cancer and arthritis. Two documents filed with the state described him as "sexually assertive." Etter, 52, called him "a ladies' man," adding, "I never thought he was inappropriate, just very friendly." She said his family, including two daughters and three sons, liked having him at Windmill Manor because it was convenient for visits.

The woman was a former school district secretary who liked to garden. She was admitted to Windmill Manor in early 2009. Her husband lived nearby. Her son, now 59, had her power of attorney and visited more often than her husband, Etter said.

The woman's dementia was more severe than that of her male friend. One state document said her "behavioral issues" included "physical aggression, yelling, refusing medications, and pinching and hitting staff." A care plan devised by the nursing staff suggested soothing her by chatting and offering Oreo cookies.

Normal need

The day of the November incident, Etter informed Drobot, then called one of the man's daughters and the woman's son and told them what had happened. The daughter was worried her father would be kicked out of the facility. Etter told her the sexual encounter reflected "a normal human need," and there was no plan for him to leave.

Iowa law requires nursing homes to notify the state Department of Inspections and Appeals of potential physical or sexual abuse. Windmill Manor had a similar written policy. No such notification was made in this case because Drobot concluded there was no evidence of force or that the couple actually had intercourse.

Windmill Manor nevertheless took steps to discourage the man, including checking on him every 15 minutes. Etter said the periodic checks ended after a week because she didn't have sufficient staff. Nurses hadn't had much, if any, training in dealing with resident sex, Etter said. A few training sessions followed the November incident.

Untrained caregivers

The lack of such training is widespread, said Andrew Rosenzweig, a geriatric psychiatrist who works with dozens of elderly care facilities. Untrained caregivers tend to rely on their own religious, ethnic and other personal beliefs to decide what's right for residents, he said. A 2012 study by two Kansas State University researchers found sex among nursing home residents is often viewed "as a behavior problem rather than an indication of an unmet need."

Greg Crist, a spokesman for the American Health Care Association, an industry trade group, said the organization offers no formal training or guidelines for dealing with elderly sexuality, relying on individual homes to respect the rights and needs of residents on a case-by-case basis.

"These are institutions that under Medicaid cuts are trying to provide basic service," said Mark Lachs, professor of medicine at the Weill Cornell Medical College in New York City. "Sexuality is probably not first on their list of basics."

Engaged in intercourse

Early on the evening of Christmas, two nurses approached nurse Gourley to report they'd seen the man and woman engaged in intercourse in the man's room, according to documents filed with the Iowa Board of Nursing Home Administrators. The nurses, who weren't named in the filings, said the man had an erection and was standing behind the woman, who was naked on all fours on the bed. One nurse described the man as "going to town."

As Gourley entered the room, she saw the man pulling up his pants. When she and another nurse tried to remove the woman from the room, she screamed and bit and kicked them.

A nurse examined the woman. Her vaginal area appeared reddened and she had bruises on her lower shins. Gourley called Etter, who was home with holiday company. Etter called Drobot, the administrator, and later contacted the families of the man and the woman.

Mutual act

She told the woman's son that his mother had had intercourse and asked if he wanted her examined at a hospital. He declined because he thought it had been "a mutual sexual act," according to testimony the son gave the state. The son didn't tell his father what had happened. Etter told the man's daughter only that he'd been caught naked again with the woman, according to regulatory filings.

It was up to Drobot to decide whether to notify state regulators. He'd never faced such a decision before. While there was little doubt that the demented couple had had intercourse, Drobot, whose formal training is in health administration and sociology, had to determine whether they had the capacity to consent to it. He wasn't required to report consensual sex if there were no physical injuries or other threats to either resident's safety.

Federal and state laws require elderly care facilities to respect residents' rights to privacy and safety. Married couples in Iowa and 17 other states have legal rights to share rooms or have conjugal visits; Colorado goes as far as to allow "private consensual activity" without stipulating a couple be married, according to the Long Term Care Resource Center at the University of Minnesota.

Capacity to decide

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, AHCA spokesman Crist said.

Some facilities, such as the Hebrew Home at Riverdale, New York, presume that residents with dementia have the capacity to decide whether to have sex. The 870-resident home has had a written policy on sexual expression since 1995.

"Yes, we need to make Solomon's decisions at times, but we need to err on the side of what the resident wants," said Robin Dessel, the Hebrew Home's sexual rights educator. "Relationships are totally personal matters of the heart."

Guidelines vary

Laws and guidelines on how to make such decisions vary widely, where they exist at all, according to experts on elderly sex. That's partly because each case must be weighed individually, said Lachs of the Weill Cornell Medical College.

Someone with dementia who lacks the clear-headedness to parcel out her estate might still be able to decide whether to become sexually involved. Said Lachs: ""˜Do you want to have sex with this person?' One could argue that requires very little capacity."

"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."

No injury

After reviewing state regulations, Drobot concluded he didn't need to report the Christmas 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.

Margo Schilling, an expert on geriatric medicine at the University of Iowa Hospitals and Clinics, reviewed the Christmas incident as part of her duties as an outside adviser to Windmill Manor. Schilling, who declined to be interviewed for this story, consulted a psychiatrist and they concluded that "patients with dementia can still have the ability to consent," so the relationship was "okay," according to a state document.

Drobot didn't report the incident. Windmill Manor still took steps to avoid more sexual encounters between the two. These included keeping them apart and prescribing drugs to curb the man's sexual urges. No more sexual episodes were documented.

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

Resident discharged

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. One of his daughters cried because she now had to drive almost two hours to visit her father, according to documents filed with the state.

Within a week, both Drobot and 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.

Lawsuit filed

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.

License revoked

Etter was removed as a defendant in the rape lawsuit in 2012. By that time, she had lost her car and the home she was renting. The Iowa Board of Nursing had revoked her nursing license, concluding that she had failed to provide adequate care for the woman and man at Windmill Manor. The board also found that she had not accurately reported the sexual episodes in resident records and to the families. Separately, Etter was acquitted of a criminal charge of interfering with a state investigation.

After two decades as a nurse, Etter didn't appear at a hearing about the future of her Iowa license because she was depressed, she said.

"I didn't do my hair, didn't do my makeup. I felt like everything I believed in fell apart," she said. She said she followed all state laws and rules and didn't believe the couple's sexual relations were forced.

Today, she runs children's day care out of her home. She said she misses the elderly residents.

"We forget that they've had a life," she said. "I don't think, unfortunately, they get treated with the dignity they should."

Feeling "˜belittled'

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. The charges appeared in local newspapers. He said he felt publicly "belittled."

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.

A state investigator and John Doughty, a veteran Iowa nursing home administrator, told the board Drobot should have reported both the November and Christmas encounters. In an interview, Doughty said the woman was "confused to the extent that I don't feel she was maybe realizing what was happening to her or she thought maybe it was her husband."

Two other outside experts testified on Drobot's behalf. Robert Bender, a Des Moines, Iowa, geriatrician, told the board he thought the woman was capable of telling the man if she didn't want sex, regardless of whether she called the man by her husband's name.

"The whole area of geriatric sexuality is an area we need to learn a lot more about," Bender said in an interview. "I don't think we should be pointing blame when people are expressing themselves in natural ways."

Consensual, beneficial

Law professor Evelyn Tenenbaum of Albany Law School in Albany, New York, who has written about sex among the demented elderly, agreed. After reviewing the Windmill Manor case, she said in an e-mail that the couple's relationship appeared to be "consensual and beneficial to their well-being. It appears that everyone would have benefited if the nursing home supported the relationship."

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.

Drobot was ordered to pay $572.50 in court fees.

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

Drobot now is the administrator of a pediatric care center in Iowa. When a reporter dropped in on him in May, the animated film "Finding Nemo" was playing on a television in a waiting room filled with colorful toys. Drobot said he, like Etter, misses working with the elderly.

"I guess maybe I sympathized with people whose life has thrown them curveballs," he said.

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