This month, the Petrie-Flom Center collaborated with the Center for Law, Brain & Behavior to host a panel entitled “Dementia and Democracy: America’s Aging Judges and Politicians.” The panelists, Bruce Price, MD, Francis X. Shen, JD, PhD, and Rebecca Brendel, JD, MD, elucidated the problems, as well as potential solutions, to the challenges of America’s judiciary and elected politicians getting older. Reconciling dementia with democracy is a pressing matter. As Dr. Price explained, age is the single largest risk factor for dementia, a risk that doubles every five years after the age of 65, and America is a country with five of the nine Supreme Court Justices over the age of 67, a 71-year-old president, a 75-year-old Senate Majority Leader, and a 77-year-old House Minority Leader.
In his talk “Dementia in Judges and Elected Officials: Challenges and Solutions,” Dr. Shen defined the complex problem. While most other jobs are not retaining workers into old age, many judges and elected officials continue to serve well into their 80s. To complicate matters further, without widespread regulations or metrics to identify how dementia impedes one’s work, the media assumes the position of speculating the cognitive statuses and fates of judges and elected officials. Dr. Shen’s key point was, “Surely we can do better than speculation.”
Dr. Shen proposed several solutions to address dementia in elected officials and judges. Currently, we leave the open market and colleagues to regulate individuals, which remains a valid approach as we consider other options. Another default position is to diagnose based on publicly available data, a solution that introduces the specific ethical concerns that Dr. Brendel addressed in her talk (discussed below). There are, however, novel solutions. We could consider requiring cognitive testing and disclosure (which could be overseen by an internal review board), or we could simply impose an age limit for service. For judges, if such an age limit were imposed, we could create a rebuttable presumption in which a judge can continue to serve by completing an evaluation. Alternatively, perhaps judges can be limited to adjudicating specific cases based on their cognitive status.
In “Capacity and Competency: Psychiatric Considerations in the Public Sphere,” Dr. Brendel delved into the ethical implications of diagnosing dementia based on publicly available data through a discussion of the “Goldwater Rule.” This ethical guideline, adopted by the American Psychiatric Association in 1973 specifies, “it is unethical for a psychiatrist to offer a professional opinion unless he or she has conducted an examination and has been granted proper authorization for such a statement.” This rule came into effect after Fact magazine distributed a survey to 12,356 psychiatrists, of whom 1,189 said that Senator Barry Goldwater was unfit to run for president in the 1964 election. Embarrassingly for the credibility of the profession, psychiatrists provided a wide range of diagnoses. Goldwater sued the magazine for libel.
The Goldwater Rule has been under fire over the past year, with over 60,000 mental health professionals and citizens joining the movement “Duty to Warn,” which advocates for Trump’s removal from office under the 25th Amendment on the basis of his psychological unfitness. Last month, the book “The Dangerous Case of Donald Trump: 27 Psychiatrists and Mental Health Experts Assess a President” was released; controversial for its collection of mental health professionals’ opinions under their disregard for the Goldwater Rule.
Dr. Brendel explained that the rationale for the Goldwater Rule stems from three factors. First, individuals should have the right to decide if/how to disclose information about their health, even if they work in the public sector, so their consent should be respected. Second, the psychiatric profession has norms and established methodological approaches, and proper evaluation in the context of a physician/patient relationship is one such method that cannot be invoked by offering a diagnosis of an individual from afar. Finally, circumventing the Goldwater Rule can exacerbate the stigma associated with mental illness by suggesting that mental illness precludes one’s capacity to contribute to society. I would now like to expand upon this final point, exploring how stigma relates to dementia, and with this consideration, offer my support for the Goldwater Rule.
Stigma, according to a seminal work by Goffman, is an “attribute that is deeply discrediting,” which reduces a “whole and usual person to a tainted, discounted one.” The notion of stigma is pervasive in discussions of dementia. In a 2013 report by Alzheimer Europe titled “The Ethical Issues Linked to the Perceptions and Portrayal of Dementia and People with Dementia,” the authors contend, “So much has been said and written about the stigma of dementia that it might sometimes be considered as a fact that dementia is a stigma.” Citing a number of sources, the report highlights the metaphors with which dementia has come to be associated: a “natural disaster,” a “soaring epidemic,” as people with dementia having “scrambled,” or “short circuit” brains, as people with dementia being “victims,” “empty shells,” “vegetables in a parallel world,” “ghostly/ disappearing” or “zombies.” Though metaphor can be helpful in contextualizing the unknown, it can also be harmful by leading to negative stereotypes and reducing complex individuals to something that warrants fear. Indeed, Alzheimer’s was found to be the second most feared disease after cancer in most countries of international study. Such perceptions have led to dementia being equated with a “social death,” a term that threatens the personhood and dignity of individuals with dementia, and contributes to their societal exclusion. Beyond this, stigma is harmful because it can discourage individuals from seeking a diagnosis, and thus compromises one’s ability to receive early intervention or to plan for the future, as well as to enroll as much-needed participants in research studies.
Despite the challenges presented by cognitive decline, individuals with dementia are not zombies or shells and they deserve respect. While we should be sensitive to their condition and the various ways in which it affects memory and executive function, we must understand that these individuals have valuable insights and the ability to contribute meaningfully to society. Nonetheless, the media do not perpetuate such a holistic view. Baldwin Van Gorp et al. found that the media focus mainly on the terminal stage of dementia, which becomes representative of the whole illness, and that individuals with dementia are rarely given the opportunity to speak to the media for themselves, with someone else typically speaking for them. The Goldwater Rule is helpful here by addressing both of these concerns. First, the rule prevents perpetuating mental illness narratives that can result in misunderstandings of a complicated, progressive, and individualistic illness. It restrains the public from equating dementia to total incapacity or a social death. Second, the rule enables individuals to speak for themselves, rather than being silenced through analysis, exposition and labeling by third parties who have not obtained consent.
In light of the Goldwater Rule, Dr. Brendel’s talk raised the important question: how can the medical profession still engage meaningfully with democracy? One place to start is by acknowledging the missing voices of these discussions. Perhaps the efforts of experts can be diverted from publically speculating about specific individuals, to engaging the voices of those with dementia to better understand their lived experiences and hopes. What sorts of regulatory structures would an individual experiencing signs of dementia want as a judge or politician? Does the current default, self-regulatory system suffice? What constitutes functional capacity for a job in politics or the judiciary? After Karen Williams, who was named to the 4th Circuit at the age of 40, was diagnosed with Alzheimer’s at 57, she gave a rare public account of her diagnosis to Propublica, explaining:
I questioned how and who would determine when I reached the stage that my mental processes truly were affected to such a degree as to make me unfit to remain on the bench. Would it require daily, weekly, monthly testing? What kind of testing? What test result would be needed to equate with ‘unfitness’?
These are exactly the sorts of questions that experts such as psychiatrists and psychologists can help a patient, as well as the public, answer. We need mental health professionals to contribute to the development of methods to evaluate functional capacity and the degree of cognitive decline that is incompatible with work as a politician or judge. Here, I see another solution to be added to Dr. Shen’s potential list of answers to the dementia and democracy problem: Creating the space to ask those in the politics and judiciary spheres who actually experience dementia what sorts of structures they would like to see to accommodate their conditions, and engaging these discussions with the expert opinions of mental health professionals.
Dementia as stigma, explain the authors of the Alzheimer Europe report, “is only the case to the extent that it continues to be socially constructed as such and that this is reflected in the way that people with dementia are perceived, portrayed and treated by others, as well as in the way that they perceive themselves as having a stigma.” The ways in which the medical and legal professions construct dementia in relation to the aging politicians and judiciary will either amplify dementia stigma or work to counter it. The Goldwater Rule serves as a safeguard against the harmful consequences of stigma, ones that can be isolating, distressing and prevent appropriate interventions for individuals with dementia. But this is not to say that healthcare professionals should remain silent and absent from contributing their expertise for the public good. The mental health profession has the tools to address many of the challenges presented in entrusting America’s leadership to those whose health can affect their very ability to make careful decisions. Mental health experts should engage individuals who are themselves experts in politics or the judiciary, and have dementia, and work together to reach solutions that respect the dignity, wisdom and experiences of people living with dementia.