How do we balance freedom and safety for those with dementia, particularly in the risky domains of sex, driving and money?
In 2014, Henry Rayhons, a 78-year-old Iowan, was arrested because he allegedly had sex with his wife.
The Rayhonses, both previously widowed, met while singing in a church choir. Over time, Mrs. Rayhons developed dementia and went into a nursing home. At one point, a roommate reported hearing sounds of sex coming from behind the curtain while Mr. Rayhons was visiting; he was then arrested. But why an arrest? This public and humiliating step put the frailties of two older people on worldwide display. Surely there was a better way.
You’d think all nursing homes would have good plans for dealing with sexual behavior, but they do not. Some facilities have long had thoughtful policies and trained staff. The Hebrew Home at Riverdale in New York posts its policy on its website. That policy describes the rights of residents to privacy and sexual expression, and outlines a process for assessing decision-making capacity for sexual behavior, which requires a careful, individualized evaluation. Other facilities have no policy and are squeamish about the whole idea.
In a statistically invalid experiment, I assigned my bioethics masters students to visit nursing homes, where they asked, among other questions, about policies regarding sexual behavior. The answers varied remarkably. One place claimed with horror that the issue had never come up―an eyebrow-raising statement. Another facility took the opposite tack, noting that older adults were not children and that their rights and dignity deserved respect. The facility had a policy permitting residents to room together and use the same bed, and even noted that this applied to same-sex as well as heterosexual couples. This level of openness is unusual. Same-sex older couples have an even tougher time than straight ones in finding acceptance for sexual expression in nursing homes. The Rayhonses’ case did have the positive impact of making facilities and scholars think more about how to handle sexual behavior among residents.
Now, let’s move to a second issue. People with dementia have many more traffic collisions than people without it. If you have a relative with dementia, it’s likely that driving is, was or will be a problem. Who can help you find out when driving is no longer safe, and help you get someone to stop? Unfortunately, there is no single widely accepted method for assessing driving competence in people with dementia. Many families ask doctors to help, but find that their physicians have no training in this area. For now, the best plan is to request referral to a specialist who assesses driving; some departments of motor vehicles either do this or can recommend agencies that do so. Some families ask a physician to play “bad cop” and tell a family member with dementia not to drive, and that may work. Many families resort to subterfuge. Keys may be “lost”; a car may be “sent for repairs.” Though this may be uncomfortable, they prefer that twinge to the risk of a loved one doing real harm to themselves or another person.
Losing the capacity to make your own decisions about sex and driving is bad enough, but losing the right to control your money is, for some, far worse. Yet loss of financial judgment may mean that a lifetime’s savings disappear just when they are needed for long-term care. The amount of financial abuse of the elderly in the U.S. is estimated at $3 billion annually. Sadly, most financial abuse is carried out by family members or others well known to the victim.
Clinicians generally have limited expertise in assessing financial incapacity. One helpful set of recommendations urges clinicians to educate patients and family members about the risks of lost financial capacity, and to identify warning signs of exploitation. As with sex and driving, there is no single, simple tool for assessment. Making wise financial choices requires many skills, such as judgment about who is trustworthy, basic math and a notion of reasonable prices for goods or services.
One promising approach includes an assessment of both cognitive and social skills, such as the judgment needed to spot a likely scam, but this requires a specially trained administrator and the assessment takes roughly half an hour to complete.
Guardianship can protect financially challenged elders, but only once they are fully incapacitated. Attorney and bioethicist Jalayne Arias recommends an intermediate step of limited guardianship for those who still retain some insight; it permits some oversight but includes the affected person in financial decision-making.
The Consumer Financial Protection Bureau has developed recommendations for the banking industry to identify unusual banking behavior, such as large money orders sent overseas. Joint accounts are one commonly used tool, but they permit exploitation by letting the joint holder use the incapacitated person’s funds for any purpose. The bureau also recommends “read-only” access, in which a third party can monitor banking activity and alert the bank about suspicious behavior. New technical innovations help, such as automatic utility payments and third-party notification of credit card use. Having relatives you can trust has always been the best plan, though sadly this is not available to all of us. Consumer groups, government and the banking industry are working on the problem. But so are those who exploit financially vulnerable elders, and they will continue to rob vulnerable people of vast amounts unless we can stop them.
Sex, cars and money—these are things that call up a sense of freedom and danger. But dementia can rob us of the ability to weigh risks or even honor our lifelong values, and can lead to far greater danger for this vulnerable group. Finding the fine line between respecting autonomy and abandoning those with dementia is a crucial task that deserves more attention.