When the Mind Falters, Is Sex a Choice?

/Home/Ethical Issues of Dementia/Ethical Issues of Dementia -- Sex and Intimacy

The 96-year-old woman with mild-to-moderate dementia pinned a piece of paper to her clothing each day to remind herself of the date. She posted scores of notes throughout the house to remember other details of life. "Cut toenails" and "take medication" read notes in her bathroom. And in the kitchen: "Cook the food [daughter-in-law] brought over."

But the notes that detectives later found in her home contained other, more complex reminders: Thur jan 8 2:40 pm sitting on side of bed. Thinking of [the gardener] and how I love him and it is returned. Friend love.

And: think it is Tues, Jan 12 9:15 PM can't think what has happened has happened. [The gardener] is unbelievable Is all a dream so much sex! sex! sex! Wonder what will happen next. Think he comes on Tuesdays. Help! . . .

For more than 20 years, the gardener had tended her yard. When he finished, she had often invited him in for a glass or two of wine. Each considered the other a friend. The woman's son and daughter-in-law lived nearby and helped her with finances, meals and transportation; the daughter-in-law said the woman often talked of the gardener, who was in his mid 50s, as if he were a long-lost son. But that changed Jan. 13 of this year when, according to a police report, she alleged that he had raped her.

Ulrey, the elder-abuse prosecutor in the King County prosecutor's office in Seattle, wasn't sure what she was looking at: Was it sexual assault, or consensual physical intimacy that hadn't worked out as intended? Was the woman capable of making a decision about intimacy? Was she a victim? Had a crime been committed?

The tension between preserving freedom and assuring safety is not the exclusive domain of old age, nor is it limited to matters of sex. The challenges of the teenage years, when independence waxes, are well-known: Driving, drinking, sex and curfews are just a few of the battlegrounds. The balancing acts at the other end of life, when independence wanes, are not so dissimilar: driving, living independently and making decisions about care.

But we are perhaps in greatest denial about issues that lie at the intersection of intimacy and dementia. Until a note on the wall, or a police report, or the surge in the number of people with dementia confronts us.

Already, 5.3 million Americans have Alzheimer's disease or other types of dementia, and the number will rise as the nation's population ages. At current rates, it's projected that 7.7 million people will have dementia by 2030 and 11 million to 16 million by 2050. A 2007 New England Journal of Medicine study confirms that for most older people, sex remains an important part of life. And some organic brain changes of old age are characterized by increasingly sexualized behavior. The disability rights community has grappled with issues of consent and intimacy. But issues relating to sex in old age, whether consensual intimacy, or sexual assault, or the nettlesome netherworld in between, receive scant attention. They should receive more.

Earlier this year, two teenage girls, whose newspaper photos looked less like mug shots than like glam yearbook pictures, were charged with physical, sexual and emotional abuse of seven Alzheimer's patients over four months at the Good Samaritan Society nursing home in Albert Lea, Minn., where they worked. Four other girls younger than 18 were charged with failing to report the conduct. The girls allegedly poked residents' breasts, hit their genitalia, stuck gloved fingers in their noses and mouths until they screamed, spit into their mouths, rubbed men until they became erect and laughed about their exploits later at school or driving around town. According to the detective's report, the girls saw their conduct as "something fun to do at work." They believed they wouldn't be caught, the detective wrote, because the "residents did not have their minds."

Elder sexual assault, although largely hidden, takes many forms: the Florida grandmother raped by her drunk grandson; the Wisconsin minister who regularly came to the nursing home to have sex with his comatose wife; sexual predators in facilities among the most vulnerable people; elder sexual homicides; and more.

Contrast these horrors with the situation at the Hebrew Home for the Aged in Riverdale, N.Y., where nurses and aides have grown accustomed to walking in on residents in flagrante delicto and respectfully excusing themselves. The facility is one of the few in the country to accept and facilitate consensual physical intimacy among residents. "Intimacy and sexual expression are fundamental human and civil rights, which must be encouraged and protected," says Daniel Reingold, the Hebrew Home's president and chief executive. "Sexual consent begins as an affirmation of these rights . . . . Our society must uphold these last vestiges of adulthood, rights and life pleasures."

Unlike most facilities, the Hebrew Home has rigorous procedures to determine consent. But there are challenges. For example, the resident who no longer recognizes her husband of 50-plus years but is physically intimate with a new (also demented) boyfriend in the facility. (Not all family members come to terms with new affections with the equanimity of former justice Sandra Day O'Connor.)

Between clear abuse and respectful deliberation lies the murkier terrain that Ulrey, the Seattle prosecutor, confronts. Previously, most prosecutors wouldn't go near cases involving witnesses or victims with dementia. According to a recent National Institute on Aging-funded study of sexual abuse in care facilities, police agencies nationwide declined to arrest 32 individuals even though state authorities had evidence, including positive rape kits, victim disclosures and eye witnesses, that they had committed sexual assault.

But as a handful of prosecutors around the country, such as Ulrey, have shown a willingness to deal with these difficult issues, more cases have emerged that previously would never have come to light.
In another case on Ulrey's docket, a nursing home aide found an 87-year-old woman with serious dementia in bed, underwear partially down, while her much younger gentleman caller hastily pulled up his pants and washed his hands. When interviewed, the woman said that she enjoyed having the man visit and called him her boyfriend. She said that the man told her she was beautiful and kissed her but that she would not have sex with him and denied any other sexual contact. The rape kit revealed evidence of intercourse.

While the nursing home staff might correctly have assessed that the woman's gentleman caller took advantage of her, she might have viewed his visits differently. And she would not be the first person in the history of the world to have had an unrealistic perception of a suitor's intentions. But how do we discern her state of mind? Did she want to have sex but was ashamed to admit it? Was she traumatized by non-consensual sex but reluctant to acknowledge that she had been abused? What duty did the man have to determine her capacity to provide consent, especially if she appeared to willingly engage in sex? Should dementia confer an absolute prohibition? And what is a facility's obligation to protect her from harm? (In this case, the facility banned the man from visiting. Is this what she would want?) Often, the more you know, the harder these issues get. This was so in the case involving the woman and her gardener.

The police report said that the alleged rape had occurred Jan. 13, 2009. On Jan. 14, the woman told her daughter-in-law that the gardener had "taken liberties" with her the previous day; on the evening of Jan. 15, she said he had raped her. On Jan. 16, she told authorities that he had thrown her on the floor of her house and raped her and that she had fought for her life. She forgot who the detective was three times during a 15-minute interview.
In addition to the notes detectives found in the woman's house discussing how much she liked her gardener, a note directly addressing the incident states:

Wed 1/14 it's 11:30 -- I called and it is Wed. am upset about [the gardener]. I want the regime to go back the way it was. Don't know should I call him or not think about it and call some time today. 2:15 sitting by phone I am so full of remorse I couldn't sleep. I want things to go back to it the was every was in the beginning. You just came in for a glass of wine after cleaning up the yard mowing etc. Things got way out of hand & I feel terrible.

A medical examination revealed evidence of sexual activity but otherwise no bruising or sign of physical struggle. Her home also showed no sign of a fight.

The gardener told detectives that the woman had been telling him for weeks that she was attracted to him and desired to be with a man. He alleged that on Jan. 13 they held hands, talked, drank some wine; that she said she wanted to have sex with him; that they tried to have intercourse but were not able to, "engaged in some touching" and "fumbled around a bit." The physical contact he described in detail to detectives appears consistent with her physical condition. He said that he considered her a close friend and a healthy person with short-term memory problems but that "a lot of times she remembers things she thinks she'll forget." He said that he had exhibited poor judgment but that he hadn't pressured her. The gardener had no previous criminal record. But a polygraph test he took about the event indicated "deception," Ulrey said.

For the woman, the events of Jan. 13 crystallized solidly into the memory of a rape. In the wake of the incident, she no longer lived independently, and her health deteriorated quickly. "Everyone who hears about this case is shocked," Ulrey said. "But the question we had to confront was: Did we think a crime had occurred? And if so, did we have the evidence to prove it?"

Ulrey agonized about how to proceed. After a number of hard conversations with colleagues, her office declined the case. "We asked ourselves whether our reaction would have been different if the alleged perpetrator had been a 90-year-old friend. And we realized that by prosecuting this case, we would in effect have to take the position that the woman was incapable of providing consent."
Ulrey went in person to tell the woman's family that her office would not press charges. "It was totally heart wrenching," she said. "They were devastated. The woman had lost so much."

To what extent can someone with dementia consent to sex? The answer is: It depends. Not all dementias and decisions are equal. In different stages of the disease, dementia might incapacitate certain types of decision-making but not others. So, for example, a person might no longer have the capacity to handle financial affairs but might retain the capacity to make decisions about with whom to engage in physical contact.

My fully lucid, opera-loving, physician, single-mother-of-four aunt who drove a red sports car into her 70s, referred to the vicissitudes of aging and intimacy this way: "When I turned 50, I had a young lover. When I turned 60, I got a fast car." She died of sudden heart failure in her 70s skiing a black diamond slope.

No one wants to take away car keys, skis or the right to make decisions about sex. But when people live longer and capacity declines, more and more of us will be called on to face these difficult and often heartbreaking decisions. The broader challenge is to increase our awareness and understanding of elder abuse and to better protect elders while honoring their wishes for intimacy and dignity. But it's slow going: The only comprehensive federal bill ever to address elder abuse, the Elder Justice Act, has languished since 2002.

For now, we mainly ignore these issues. Our response to sex in old age echoes the archetypal reaction that kids have to parents -- or worse, grandparents -- having sex: revulsion and denial. The result is that we are ill-equipped to prevent sexual abuse, allow for intimacy or distinguish between the two.


By Marie-Therese Connolly
Sunday, September 20, 2009
Washington Post

connollymt@gmail.com

Marie-Therese Connolly previously coordinated the Justice Department's Elder Justice and Nursing Home Initiative. She is now a senior scholar at the Woodrow Wilson International Center for Scholars, where she is working on a book about elder abuse.