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.
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.