To Have and to Hold: Consent and Intimacy for People With Alzheimer’s

There’s a strong cultural distaste for thinking about the elderly engaged in sexual activity, but we must if we’re going to protect an aging population.
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There’s a strong cultural distaste for thinking about the elderly engaged in sexual activity, but we must if we’re going to protect an aging population.
Henry Rayhons. (Photo: Public Domain)

Henry Rayhons. (Photo: Public Domain)

On April 22, a jury acquitted Henry Rayhons, a 78-year-old house representative in Iowa, of felony charges that he had sexually assaulted his wife, Donna Rayhons, who had Alzheimer’s and lived in a nursing home. The case, widely publicized and held up as emblematic of the problems with consent laws and patients with dementia, has a tragic backstory.

Henry and Donna Rayhons were wed in 2007—a second marriage for both. By all accounts, they were madly in love. For over six years, they enjoyed a happy marriage. Then, Donna was diagnosed with Alzheimer’s and became difficult to care for at home. On May 23, 2014, Rayhons visited his wife at the Concord Care Center in Garner, Iowa, where she was living. That day, Donna’s roommate told staff that she heard “sexual” noises coming from Donna’s side of the room. (Donna died in August of last year, one week before Rayhons’ arrest.)

“Having dementia is not automatically the same as lacking capacity to consent. Here, the issue is less whether someone can say ‘no’ than whether someone will be permitted to say ‘yes.’”

There was no physical evidence of any kind of intercourse, says Joel Yunek, Rayhons’ attorney. Rather, the charges seemed to rely on Donna’s roommate, who later changed her testimony when questioned at trial. In a meeting with Donna’s doctors eight days before the incident, Rayhons was reportedly told that Donna was not capable of consenting to sex. But, Yunek says, Rayhons did not leave the meeting with the impression that all intimate contact was disallowed. Other sources reported that the prohibition on “sexual activity” was at the bottom of a form and only briefly discussed.

Even further, no one disputes that Donna and Henry had an affectionate and loving relationship. Yunek says that Donna always recognized Rayhons even when she was unable to take care of herself. Court testimony indicated that Donna always “lit up” when Rayhons entered the room and was clearly fond of him. In an interview with the New York Times, a mournful Rayhons affirmed that Donna always knew who he was and that he did not engage in sex with her that day.


While Rayhons’ case was unusually public, the concern about how to think about the sexual desires of people with dementia and their partners is an increasing problem. As people live longer, more and more Baby Boomers are being diagnosed with dementia. The Alzheimer’s Association estimates that 5.1 million people age 65 and older have Alzheimer’s; this number is only expected to grow. Because the Baby Boomer generation grew up more accustomed to talking openly about sex, intimate relationships are more likely to be a topic of discussion as they age.

Medically and legally, it is challenging to determine consent for someone with Alzheimer’s. Two common tests for short-term memory, the Mini Mental Status Exam and the Brief Interview for Mental Status, are widely acknowledged by experts as well as the Alzheimer’s Association not to be sufficient to determine whether a patient with dementia can or cannot consent to sexual activity. Reportedly, Donna’s physician used the BIMS test to determine her ability to consent.

In contrast, Dr. Robert Bender, a Des Moines physician who specializes in geriatric medicine and memory and who testified at trial on behalf of Rayhons, says, “Neuroscience tells us that patients who have significant dementia can recognize their loves ones, and these relationships can be good for their overall sense of well-being and quality of life.” In his view, the determination should rely on new advances in neuroscience, which indicate that parts of the brain related to affection and love can still operate even when other functions decline.

Derek Beeston, an assistant professor at Staffordshire University who specializes in elder care issues, agrees that tests of short-term memory are not sufficient to determine whether someone is capable of consenting to sex. “Capacity fluctuates and may be different from day to day,” he says in a Skype conversation. “Even further, most experts agree that intimacy and touch helps people with Alzheimer’s.”

Elizabeth Edgerly, the chief program officer for the Alzheimer’s Association, agrees that there are benefits to closeness, like hugging, holding hands, and kissing. She points out, however, that there is a “general view of being more careful when it comes to consent,” but that some degree of intimacy is necessary for all people.

But the law doesn’t necessarily take into account the vagaries of neuroscience when it comes to prosecuting offenders. Katherine Pearson, a professor of law at Penn State's Dickinson Law and an expert on elder law, says that there is “no easy, bright line” in these cases to determine whether or not Donna was capable of consent. “Having dementia is not automatically the same as lacking capacity to consent,” she says. Pearson emphasizes that there was no evidence that Donna was unwilling to participate in intimacy. “Here, the issue is less whether someone can say ‘no’ than whether someone will be permitted to say ‘yes,’” she says.

Similarly, Edgerly points out that the situation is complex: “There is a lack of clear guidelines over consent.”


Rayhons’ case indicates that Alzheimer’s is changing the landscape of what it means to be in a committed, intimate relationship. “Legislation was never drafted with this situation in mind,” Beeston says. He also points out that there is a strong cultural distaste for thinking about the elderly engaged in sexual activity. But, in fact, many older people enjoy healthy sex lives, and people with dementia often suffer from the problem of having less inhibition when it comes to sex. “Doctors are trained to deal with situations that are personal and private,” Bender says.

Everyone I spoke with agrees that consent in the context of someone with Alzheimer’s is not the same as considering consent in the case of someone who is blacked out as a result of drugs or alcohol. People suffering from dementia are, in fact, capable of making some decisions, and preserving that sense of dignity is an important role for caregivers and nursing homes.

At the same time, though, everyone also agrees that it is important to have a limit. But where should that limit be?

Consent in the context of someone with Alzheimer’s is not the same as considering consent in the case of someone who is blacked out as a result of drugs or alcohol.

Take, for example, what took place in 2009 at Windhill Manor, another nursing home in Iowa. Two residents—a male and a female—were found having sex; both had dementia. (The man was a widow; the woman was married although her husband visited less frequently than her son.) According to an investigation by Bloomberg Business, when the administration and staff discovered the two having sex, they determined that the encounter was consensual even though both had diminished capacities. The guidelines and laws were vague on whether or not the home was required to report the incident; state laws guarantee the right to free expression and consensual relationships.

Later, however, an official inspector determined that the nursing home had violated the law and, consequently, the administrator and director of nursing were fired. Windhill Manor was fined, and the woman’s family sued, believing that she had been raped.

John Portmann, a professor of Religious Studies at the University of Virginia, says that both people in a marriage have rights to sexual satisfaction. In his book The Ethics of Sex and Alzheimer’s, he argues that Alzheimer’s is altering the landscape of sexual ethics. Portmann is particularly interested in examining the healthy spouses of Alzheimer’s patients, who are often tasked with taking care of someone who may no longer recognize who they are. Or, as in the case of Supreme Court Justice Sandra Day O’Connor’s husband, the spouse with dementia develops attachments to someone other than his or her spouse. Portmann points out that the much more common concern among couples enduring Alzheimer’s is desertion. Therefore, Rayhons’ desire to be with his wife can be seen as a display of commitment and devotion.

More than that, the case at Windhill Manor considered with the Rayhons case illustrates just how strange the territory is for most people and how infrequently the public discusses the sexual desires of individuals over the age of 65. What does it mean to be intimate with someone who is no longer the same person they once were? How can society balance the legitimate need for intimacy and compassion with the firmer requirements that the law protect those who cannot protect themselves?

All of this is further complicated by the regulatory requirements of nursing home facilities, which sometimes seem at odds with the autonomy of the patients, as discussed by Albany Law School professor Evelyn Tenenbaum in her law review article, “To Be or to Exist: Standards for Deciding Whether Dementia Patients in Nursing Homes Should Engage in Intimacy, Sex, and Adultery.” Elder care facilities are required under law to report instances of potential abuse, and patients with dementia cannot always make their desires clearly known. Pearson also points out that what Rayhons did would not have been illegal had he done it in his home rather than in a nursing care facility. If nursing homes limit people’s rights to intimacy, then some may be reluctant to place their loved ones in facilities.

One care facility, the Hebrew Home in Riverdale, New York, distinguishes itself by explicitly allowing residents to engage in intimate relationships, even those with dementia. The idea is to allow residents the same freedoms they would have at home, and Hebrew Home maintains sufficient staff and trains them to watch out for signs that a relationship is non-consensual.

As people’s mental facilities decline with age, it is important to allow their autonomy to remain intact. As Edgerly says, “People should be able to be as individual and autonomous as long as possible.” The idea, she says, is to know when to intervene and the appropriate amount of intervention.

Everyone agrees that the Rayhons’ case is a signal that more research and guidelines need to be issued as to how people with dementia should be treated in terms of consent to engage in sexual activity. Pearson explains that she would like to have seen both Rayhons and his wife counseled better. “Certainly, we can hope that in the future, better counseling and support for the entire family coping with dementia, including the step-children, will lead to a less traumatic experience,” she says.

Beeston says that criminalizing intimacy may have a chilling effect on couples who are trying to maintain a connection. “People would be afraid to love their spouses,” he says. Beeston adds that sex in the context of a loving couple is what help makes people feel human. Bender agrees: “We should consider the individuals with compassion and an effort to help them enjoy as full a human life as we can.”

As more people become attuned to the issue, perhaps it will become a part of advanced directives, like other areas where the law intersects with morality and individual beliefs. “Should we have advanced directives about what we want our sex lives to be like?” Beeston asks. It’s possible that this would be the easiest way to avoid another such case.

But for now, the issue appears to be one where the courtroom is uniquely unsuitable—stringent laws and the threat of punishment do not leave room for people to ask earnest questions and for medical experts to make the most suitable individualized decisions. Rather than a climate of fear, choices about sexuality and intimacy should be made in a climate of understanding and acceptance.