Richard Taylor: Humanity Unleashed

Last weekend, the dementia care and advocacy community lost one of its most unique and powerful voices with death of Richard Taylor.  A few years after being diagnosed with probable Alzheimer’s-type dementia, Richard Taylor emerged as a passionate, uncompromising advocate for people living with dementia. He challenged stigma wherever he found it, and was often a harsh critic of the Alzheimer’s establishment, which he argued over-emphasized the search for a future cure at the expense of programs to support people struggling with dementia today. Anyone with an interest in dementia should know his remarkable book, Alzheimer’s from the Inside Out.  

I wish I had gotten to know Richard much better. I met him through email and then at a conference about five years ago, and continued to stay in touch with him from time to time.  The interest he took in my work on dementia has been an important motivation for me to keep going.

Many of those who knew Richard well have written tributes to him, some of them gathered in a post on Truthful Loving Kindness. Kater Swaffer wrote a particularly moving post about how Richard inspired other people with dementia to become advocates. Geriatrician Al Power’s tribute included a remarkable quote which I think captures the radical challenge Richard Taylor posed:

“I believe that as people progress with dementia, their humanity increases. People have to get ready for that humanity to be unleashed.”

In Memory of Joseph M. Foley, a Great Humanizing Voice in Neurology

I was saddened recently by the news that Dr. Joseph M. Foley died in Cleveland at the age of 96. Joe was a leading figure in neurology, serving as president of the American Neurological Association in 1974-75, a legendary teacher at Case Western Reserve University where I did my doctoral work, and a genuine hero in the community.  His rule of life was to “make sure you love people and behave in a way that you can be loved.” As the many published tributes to him attest, he was deeply beloved.  In 2011, Foley was interviewed for the American Academy of Neurology’s oral history project, and his warmth, humility, humor and considerable gifts as a storyteller shine through the transcript of the interview.

I wish I’d had the opportunity to get to know Joe better, but I am indebted to him for a conversation we had about my research very early in my career that quite literally turned me around. Though his primary scientific research never concerned dementia, he became interested in it and gerontology in general toward the end of his career and into his retirement. He was a co-founder of the Cleveland Chapter of the Alzheimer’s Association. Thus, when I settled on the history of the concept of Alzheimer’s disease as a topic for my MA thesis in history, I thought it would be good to contact him for advice and he generously invited me to lunch to talk about my project. He spent most of our time drawing me out and listening to my ideas. At the time, I was hopelessly captive to sources in the recent history of the Alzheimer’s field, and accepted the conventional wisdom that little of consequence had happened before the 1970s.

He approved of the critical questions I wanted to raise about the current period, but at the end of our conversation he told me that I really needed to take a look through the American Journal of Psychiatry and the Annals of Neurology and Psychiatry during the 1930s and 1940s for the work of a guy he remembered called David Rothschild. He didn’t say more, and I couldn’t imagine it would amount to much, but I dutifully followed up on this lead and what I found profoundly changed my assumptions about the history of dementia. Rothschild was a Boston area psychiatrist who developed an approach to dementia, grounded in the psychobiology of August Meyer, that was radically different than the approach of the present. Though his work has been virtually forgotten by the current generation, at the time it was widely influential in American psychiatry and even more so in the emerging field of social gerontology, where it had important consequences for the history of aging and the eventual emergence of Alzheimer’s as a major public issue.

So this nudge from Joe drove home for me the fundamental ethos of history: never take the past for granted – always look and be open to the ways in which it may be richer and more complicated than those in the present would like to believe.

From the AmericanAcademy of Neurology’s oral history interview, I gather that a young Joe Foley was disenchanted with the “mish-mash of psychoanalytic jargon” that Rothschild’s work was grounded in and turned to a biological study of the brain. But later in his career as a clinician he wrote of dementia in a way that reminded me of the best, most humanizing aspects of Rothschild’s work. Foley believed that the physician had an obligation not merely to dispense cures but to provide care: “Even when the dementia is neither arrestable nor reversible, it is still possible to guide the family and aid the patient. There are still many incurable diseases; there are no untreatable patients.”

He also shared my profound discomfort with the idea, widely circulated in the public discourses of the Alzheimer’s movement, that selfhood was destroyed by dementia, and he was committed to understanding the experience of the patient:

It is important to identify functions that are lost, but even more so to identify functions that are preserved…. In the formulation of public and institutional policy we must beware of simplifications and generalizations; we must recognize that individual demented persons have their own unique attributes and that, despite metaphors loosely thrown around, they each remain a person, with their own gratifications and frustrations, their own unique background, and their own unique destiny.”

As neurology and the neurosciences pursue the brave new worlds of biological understandings of the brain and human behavior, I hope there will remain a place for the humanizing concerns of a Joe Foley.