Why We Need to Understand the Perspectives of Seniors on Dementia and Decisionmaking

elderly woman's hand in young woman's hand

By James Toomey

After his wife died, Tom, 83, lived with a caretaker. His daughter was worried. Tom wasn’t his old self. He was getting slower, repeated himself, didn’t seem to remember things that mattered. But when Adult Protective Services interviewed him, they thought he seemed fine. Later, when his daughter finally managed to get him into court to appoint a guardian, they discovered that the caretaker had made off with most of his savings.

Meanwhile, Patricia, 85, lived alone. She had some mild cognitive impairment, that was obvious. She didn’t get jokes the way she used to, seemed withdrawn, and her memory wasn’t as sharp. But she could get around on her own. She managed her finances and made her own decisions. A nephew disagreed. He referred her case to a doctor who found that her impairment had progressed to mild dementia, and a court declared the nephew her temporary guardian. If she hadn’t by chance run into an old friend who was an elder law attorney, the nephew would have stolen the tens of thousands of dollars he planned to.

These anecdotes were recently related to me by Professor Peter Lichtenberg of Wayne State University, a clinical psychologist and national expert on the financial exploitation of seniors. We met at last April’s conference “Our Aging Brains” at Harvard Law School, where panelists demonstrated the challenges—and profound stakes measured in human suffering—involved in a legal ruling that an individual with dementia either has or lacks legal capacity.

If a judge rules that someone has capacity when they don’t in fact, they are left vulnerable to exploitation, abuse, poverty, and, at a certain point, a bona fide inability to live independently. If judge rules that someone doesn’t have capacity when they do in fact, the ruling takes from them fundamental rights to make decisions—and similarly leaves them open to abuse or exploitation by their guardians.

This isn’t a hypothetical problem. Loses from senior financial exploitation in the U.S. alone totals somewhere between $2.9 and $36.48 billion annually, somewhere between 2% and 10% of American seniors are abused, and some studies indicate that as few as 1 in 44 cases of instances of financial exploitation are reported. As the American population ages, these figures are only likely to get worse.

But figuring out when a senior, who might have some mild cognitive impairment, or might be increasingly different in some ways than she was for most of her life, has, or should be legally considered to have, capacity to make her own decisions can be challenging.

Faced with byzantine legal doctrine, highly subjective expert testimony, and Shakespearean family politics, it is no surprise that judges often get it wrong. For these reasons, there have been active discussions and efforts over the past few decades about reforming and improving the legal treatment of those with dementia.

A promising avenue of reform is to better use modern neuroscience to improve the consistency and accuracy of legal capacity assessments. The challenge with this approach, however, as was emphasized at the April conference, is that “capacity” is not a scientific concept. You can’t scan a brain for it; it doesn’t have a biomarker.

Rather, capacity is a cluster of normative assertions about the essential elements of persons and the human mind that we care about in affirming that the will of persons is entitled to legal respect. A diagnosis of Alzheimer’s (if this were even definitively possible before death), without some normative grounding, can’t tell us why Alzheimer’s is a good proxy for legal capacity, and, more importantly, when and how in the development of the disease the law ethically ought to intervene.

Making these kinds of normative claims can be difficult. The answers are not obvious. Is short term memory necessary for capacity? How much? Long term memory? Some specific long term memories? Do values matter? Does IQ? Should capacity assessments be relative to who the person was previously or assessed on an absolute scale? It isn’t enough, of course, to say that we are concerned only with those changes that are caused by underlying neurological changes. They all are. Instead, we must, to some extent, answer the questions that go to the normative core of what it means to be a person. We must not forget that when we talk about dementia we are talking about nothing short of the incomprehensible, inevitable calamity of unbecoming.

I, for one, have no idea how to begin to answer these questions, in general. I’m not sure anyone does. But if we could define with precision which of these specific things we really cared about in the legal doctrine of capacity, science may be able to help us measure it better. Capacity is not a thing that can be measured, but short term memory, for example, is.

Moreover, we need a legal doctrine that works for people, one that supports those who need it, and respects those who don’t. Pending philosophical epiphany, what we can do is talk to and understand the perspectives of the people most affected by this legal doctrine, the people who, out of necessity, think about these issues the most: seniors.

This year, I will be interviewing seniors in the Boston area for my Student Fellowship research project, and supplementing these interviews with a nationwide online survey, asking seniors specifically when, how, and why they would want the law to intervene if they were to develop dementia.

I don’t know what I will find—there may be consensus, but there might not be; there may be common themes, or not—but this endeavor will certainly provide insight into what people who face these questions in concrete ways are thinking about them. Hopefully, my project will fill a gap in a literature too often based on assumptions and generalizations about what other people want, and help guide the reform of legal doctrine in ways that accord with the understandings and aspirations of the people it will affect.

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About James Toomey

James Toomey is a third-year law student at Harvard Law School. His fellowship project seeks to understand the perspectives of seniors on when and how the law should intervene in their decision-making if they were to develop dementia. Previously, he worked on issues related to the financial exploitation of seniors with Professor Francis Shen and at SIFMA. James graduated from Cornell University in 2016 with a B.A. in Government and English. In law school, he traveled to Switzerland in January 2018 with the Cravath International Travel Fellowship to study the Swiss constitutional regulation of biotechnology. His research interests include bioethics, regulation of biotechnology, elder law, and law enforcement.

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