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.

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Forgetting Defines Us

If, as is often claimed, Alzheimer’s disease is “the disease of the century,” or at least one of the peculiarly emblematic diseases in America at the turn of the twenty-first century, it is not just because of its rising prevalence and  devastating symptoms, but because it has a  strong  resonance with some of the deepest concerns of contemporary culture. This is one of a series of occasional posts that will explore this  cultural resonance. 

One of the most salient concerns in contemporary culture is memory, and it is clear that the prominence of Alzheimer’s is in large part a result of the prominence of memory failure among its many symptoms. But the authority of medicine in popular discourse on Alzheimer’s has fostered a reductive  approach to memory, regarding it essentially to the ability to store and recall information. In this post, I want to gesture toward the broader meanings of  memory and memory by considering how they are used in two important songs in the oeuvre of   one of my heroes — indie music  goddess Ani Difranco. The songs are the title tracks to Dilate (1996) and Little Plastic Castle (1998).

“Dilate” (complete lyrics)  is essentially a song about love gone wrong, but it is lifted above the banality of countless songs on that theme by its images of  memory failure and confusion that reach toward a characterization of the human condition in late modernity.

Lifted out of the context of the song, the imagery of memory failure and confusion could be taken as  a fairly standard description of  nightmarish memory failure in dementia:

i wake up in the night 
and i don’t know where the bathroom is 
and i don’t know what town i’m in 
or what sky i am under 
and i wake up in the darkness and i 
don’t have the will anymore to wonder 

….

and i learn every room long enough 
to make it to the door 
and then i hear it click shut behind me 
and every key works differently 
i forget every time 
and the forgetting defines me 
that’s what defines me” 

But in the  context of the song, these images have a quite a different meaning.  Though the song is meticulously evasive about what is actually going on in the narrator’s life, nothing in it  suggests that the forgetting which defines the narrator is a literal inability  to recall information, or that the problem is a defect in her brain. Nor is she simply using memory loss and confusion as a metaphor for the feelings that accompany a bad love affair. Rather, the song suggests that the banality of life has come to defy her ability to render it meaningful, and that this  disruption of meaning has come to define her. The song concludes by embracing this situation, painful as it may be.

“Little Plastic Castle” (complete lyrics) is a celebration of unorthodox sexuality, articulating the joy to be experienced and the social price to be paid for for violating heterosexual norms of femininity, for simply being different.

But the song begins with an evocation of  quotidian memory failure. The problem is not  with the narrator’s mind or brain, but with  a mass culture that replicates experience endlessly so that location and time are blended together into an undifferentiated now.

in a coffee shop in a city
which is every coffee shop in every city
on a day which is every day
i picked up a magazine
which is every magazine
read a story, and then forgot it right away”

The next verse goes further to suggest that this sort of forgetfulness is not an accident, but a structured, imposed feature of  a modern social life that is full of little plastic castles.

they say goldfish have no memory
i guess their lives are much like mine
and the little plastic castle
is a surprise every time
and it’s hard to say if they’re happy
but they don’t seem much to mind”

This is the trap, the false promise of late modern consumer culture that leads the narrator to to forget where she is, to forget the hostility that she will inevitably have to endure and that she describes in the remainder of the song.

In these songs, memory  is not merely the ability to recall information and be oriented in time and place. It is the ability to make meaning, to connect the past, the present and future together into a meaningful life story. And memory failure is not caused only by something gone wrong in an individual body and brain, but also by the oppressive banality and social contradictions of contemporary experience in late modern consumer culture.  Keeping these broader meanings of memory and forgetting in mind can deepen the way we think about the experience of confusion and memory loss in dementia.

Marginalizing the Psychiatric in Dementia Treatment

I recently came across an interesting  post written by Allen Power that raised the question of whether dementia is better thought of as a psychiatric or a neurological problem. Power argues that dementia is increasingly viewed as a psychiatric illness, with symptoms of distress and analogous to mental illness. Psychiatrists are brought in as “expert pill jockeys” to control behavioral problems with antipsychotic drugs. Power thinks this approach is wrong:

Dementia is not a psychiatric illness. It is a change in one’s experience of their surroundings and how they process information, based on structural neurologic changes. It is as much a psychiatric illness as would be a stroke. And people’s interpretations of the world around them may seem confused to us, but they are nothing like the symptoms of an organized psychosis.”

According to Power, the tendency to psychiatrize dementia leads us to overlook non-pharmacological interventions, which he argues have been shown to be the safest, most efficacious and most enduring ways to manage the behavioral problems associated with dementia. He concludes that it would be much better to view dementia as “a neurological disability with secondary psychological challenges,” and that psychiatry’s role should not be simply prescribing pills to control behavior  but helping with the broader psychosocial challenges that dementia entails.

I follow and admire Power’s work as a geriatrician and one of the leading critics of the dominant drug-based approach to treating dementia. But I think that there is an important historical issue that structures the problem he raises. Without understanding and explicitly confronting this issue, efforts to change the dominant approach are not likely to have much traction.

In arguing that that dementia is a neurological rather than a psychiatric condition, Power follows the dominant modern medical approach to dementia in placing cognitive symptoms, attributed to “structural neurological changes,” at the center and relegating emotional and psychological changes  to the periphery — mere epiphenomenal reactions to the primary cognitive damage. This is somewhat arbitrary since, for patients and family members at least, the emotional and psychological symptoms are often as prominent and disturbing as the cognitive ones. But it follows a deep historical tendency in modern medicine to view psychiatric symptoms and mental disorders as less legitimate because they are not clearly attributable to pathological structures in the body.

This bias emerged clearly, in the United States at least, in the late nineteenth century as the development of germ theory and microbiology created a more scientific approach to medicine. Acute, infectious diseases which could be attributed to a particular pathological agent and effectively treated with a specific drug increasingly became the paradigm of modern medicine, especially as antibiotics emerged in the twentieth century. Chronic illnesses, especially psychiatric ones, seemed less legitimate, and the medical specialties that focused on them lost prestige in the era of “the magic bullet.”

Psychiatry was further marginalized during this period by its overlap with the other medical specialty claiming expertise over the brain and mental phenomena, neurology. Though the distinction between the psychiatric and the neurological has perhaps always been somewhat arbitrary, neurologists during this period, especially in the United States,  were generally successful in associating their specialty with cutting edge science while psychiatrists struggled under the stigma of their historic association with asylums and chronic, incurable madness.

The history of psychiatry since the late-nineteenth century can be interpreted as trying to compensate for this marginalization. Leading psychiatrists of the period, especially in Germany, sought to put their field on a scientific basis commensurate with the advance of medicine as a whole by showing that mental illness could be linked to specific brain pathologies. When this approach failed, Emil Kraepelin turned toward a quantitative assessment of clinical symptoms as a more scientific means of defining psychiatric disorders. Freud and his followers meanwhile sought to provide a scientific basis for psychiatry by turning away from the intractable problem of psychosis and developing a unified, expansive theoretical framework to explain and treat the mind. In recent decades, armed with new insights into genetics and neurochemistry and new technologies for exploring the brain, psychiatry has returned to the dream of anchoring psychiatric symptoms and disorders firmly in the brain. But apparent progress in understanding the brain only perpetuates the marginalization of psychopathology that cannot be clearly associated with something specific that is wrong with the brain. Psychiatric symptoms and clinical disorders continue to have an ambiguous status unless they are clearly associated with specific pathological processes in the brain.

While Power provides a strong critique of psychiatry’s reductionist approach to managing the “problem behaviors” of dementia with antipsychotic drugs, in this post at least he ironically appears to endorse much of the mainstream medical concept of dementia that historically produced such reductionism. So long as a reductionist model of dementia as simply a brain disorder retains a near exclusive grip in medicine, so long as pathology is considered more real than psychiatric symptoms, let alone social and cultural factors, medical practitioners of all kinds are much more likely to respond with a prescription pad than with the agenda for  social and cultural change that Power calls for.

History and the Will to Power in the Alzheimer’s Field

It is a strange time to be a historian interested in Alzheimer’s disease.

On the one hand, since the putative one hundredth anniversary of Alzheimer’s disease, which was confusingly celebrated in both 2006 and 2010, the Alzheimer’s field seems completely enamored with its storied past. Virtually every major book, conference or news articles on contemporary Alzheimer’s research contains at least a brief account of the origins and development of the basic concepts of the Alzheimer’s disease field. On the other hand, as history, these accounts are typically superficial at best, and are often distorted and misleading. The Alzheimer’s field remains so distressingly unaware and uninterested in its actual past that one could wonder about whether it is afflicted with some sort of memory disorder—except that this alienation from a meaningful engagement with history is  quite typical of  contemporary society.

My quarrel with the way the Alzheimer’s field represents its history is grounded in what I see as the core value of historical scholarship. If being a historian means anything, it is a commitment to the complexity of the past. Our interest in history comes from questions and concerns we have in the present and the patterns we see in the past are inevitably shaped by this. But we must remember that the people of the past,  whose experiences we would try to understand and learn from, had lives fully as complex as our own, and did not necessarily know and share the concerns we have in the present. When we attend to the complexity of the past it can serve as a source of rich human experience to interrogate and learn from. But if we impose the concerns of the present too strongly, we silence the individual and collective voices we could learn from and produce a self-serving narrative that can only reinforce our own biases. Historians cannot accept facile, reductive accounts of the individual and collective lives of people in the past in order to serve our purposes in the present.

A recent infographic on the history of Alzheimer’s disease research has begun circulating that distills the field’s warped history of itself into a viral nugget. It’s a nice design that pulls together information on the prevalence and financial burden of Alzheimer’s, the growth in funding for biomedical research, a list of drugs that have been approved for treating Alzheimer’s, and a timeline of “breakthroughs in research” drawn from standard sources: the websites of the Alzheimer’s Association and other major organizations in the Alzheimer’s field and mainstream media sources like CNN and Consumer Reports. As a whole, the infographic makes it clear that this is, or soon will be, a history of  medical triumph:

It has been called incurable, and its diagnosis comes as a death sentence. But as research accelerates, new breakthroughs become the norm, and donations come pouring in, sufferers of Alzheimer’s and their families are finding new hope in the possibility of future research and treatment options. See the history behind Alzheimer’s disease, the milestones in its research, and the global push for a cure.”

Shorn of any clarifying or qualifying context, all of the information in the graphic is grossly oversimplified. But  the distortion of history is simply outrageous. The timeline begins with the early twentieth century work of Alois Alzheimer’s associating plaques and tangles in the brain with dementia, and Emil Kraepelin’s creation of the term “Alzheimer’s disease” in 1910. This is all true, but ignores the fact that their concept of dementia was quite different, reserving the term Alzheimer’s  to distinguish the rare cases of early onset dementia from the much more common form of senile dementia, which they seemed content to view as an extreme form of normal aging. Moreover, Alzheimer and Kraepelin did not view dementia  as a major public health issue, and they showed no interest in developing therapeutic interventions; rather, their interest in dementia was aimed at advancing the intellectual power and social authority of psychiatry.

Remarkably, the only “breakthrough” mentioned between 1910 and the 1980s is the  invention of the electron microscope that allows  “deeper study of the brain.” Inclusion of this in a timeline on Alzheimer’s research is inexplicable since its inventors had no interest in Alzheimer’s disease, and Alzheimer’s researchers would not use the electron microscope in their work until the 1960s.

But to anyone who has systematically studied the history of Alzheimer’s disease , even more inexplicable is that a major body of research on the dementias is ignored. From the 1930s through the 1950s, American psychiatrists wrote extensively about age associated cognitive deterioration from a psychodynamic perspective. While this work goes against the grain of more recent research on brain pathology, as I showed in my first book, it was highly influential at the time, challenging  the therapeutic nihilism that had characterized medical approaches to senility and contributing to a broader transformation in social expectations for old age without which the emergence of Alzheimer’s as a  major public issue would be impossible.

The creation of the National Institute on Aging n 1974 and the Alzheimer’s Association in 1980 are noted, but there is no explanation indication of  the  political machinations behind them. They are, it seems, the straightforward and inevitable  institutional forms that emerge to deal with a dread disease. These have indeed been important organizations, but suffice it to say the reality is a good deal more complex than this.

The remainder of the timeline is devoted to breakthroughs in drug treatment or that contribute directly to dominant trends in current research, such  as the identification of the beta amyloid and tau proteins, the discovery of gene associations, or  the development of the transgenic mouse model of Alzheimer’s disease. Each of the drugs that have been licensed in the United States for treatment of Alzheimer’s is noted, but the now out-of-date  “cholinergic hypothesis” on which they were based is ignored, as is the controversy that surrounded tacrine and the fact that all of these drugs have proven to provide little if any benefit to patients. The 1999 success of an Alzheimer’s vaccine in transgenic mice is noted, though not the fact that initial human trials proved a disastrous failure when it caused fatal swelling of the brain. The timeline culminates with the  use of a cancer drug to reverse Alzheimer’s in mice earlier this year.

Those not  afflicted with the sensibilities of the professional historian might wonder why this is so bad. Is oversimplification of the past really so bad if it encourages public support for research and provides hope for people who are struggling with Alzheimer’s disease?

My response is that an oversimplification of history encourages naive thinking about our present situation. This is a winner’s history, in which scientific developments in the past are included only if they contributed directly to the  research agenda that is dominant in the present. It is a history that serves the interest of the leaders in the Alzheimer’s field today, suppressing contingency, complexity, and uncertainty so that the discovery of a prevention or cure seems inevitable if only we will make the necessary investment  in their work. On this account,  a crude version of Nietzsche’s will to power not Alzheimer’s research on plaques and tangles in the brain, seems to be the real foundation of the Alzheimer’s field.

Such history inevitably leads to an inflated sense of the efficacy and importance of dominant social institutions like medicine, and ignores or marginalizes the importance of other social and cultural resources like art or spirituality that can and should be part of our understanding of the problem and part of our response. In the case of Alzheimer’s, this distorted history helps to rivet  attention on faulty molecules in the brain and to foster a desperate hope in the power of biomedicine to produce a cure.

We need to create richer, more profoundly optimistic understandings of dementia and how we might respond to it. Attending to the complexities of the history of Alzheimer’s research is a good place to begin.
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NOTES:

Confusingly celebrated in both 2006 and 2010. Alzheimer described the case of Auguste Deter at a small, regional conference of German psychiatrists in Tübingen in 1906, and Kraepelin created the eponym Alzheimer’s disease based largely on this case in the eight edition of his influential textbook Psychiatrie, published in 1910. 

Nietzsche’s will to power. The nuanced version of the will to power, which can be found in Nietzsche’s original work, did not condone a simplification of history  to fit the wishes of those seeking to exert power and remains an important concept in history and theory.