Social Constructionism Meets Aging and Dementia

January 27, 2020
Awais Aftab, MD
Awais Aftab, MD

A Conversation in Critical Psychiatry with Peter J. Whitehouse, MD, PhD.

A Conversation in Critical Psychiatry with Peter J Whitehouse, MD, PhD.

CONVERSATIONS IN CRITICAL PSYCHIATRY

Conversations in Critical Psychiatry is an interview series aimed to engage prominent critics within and outside the profession who have made meaningful criticisms of psychiatry and have offered constructive alternative perspectives to the current status quo.

Peter Whitehouse MD, PhD-neurologist, cognitive neuroscientist, and bioethicist by formal training and transdisciplinarian in practice-is Professor of neurology, psychiatry, cognitive science, neuroscience, and organizational behavior at Case Western Reserve University, with additional past appointments in the departments of psychology, bioethics, history, and nursing. He is also a Professor at University of Toronto, honorary research fellow at University of Oxford, and the founding president of Intergenerational Schools International. He has served in national and international leadership positions in neurology, geriatrics, and public health. He has authored numerous academic, peer-reviewed research publications. His current main foci are on ecopsychosocial models of brain health and aging, as well as the role of the arts and humanities in health. He considers himself a wising-up, intergenerative, transdisciplinary, action-oriented scholar, and an emerging artist. He is the author of The Myth of Alzheimer’s: What You Aren't Being Told About Today's Most Dreaded Diagnosis(co-written with Daniel George, published in 2008, St Martin’s Press) in which he criticized the conceptualization of Alzheimer disease as a disease distinct from the aging process.

I became acquainted with Dr Whitehouse and his ideas during my geriatric psychiatry fellowship as I explored conceptual and philosophical issues related to aging. Up to that point I had considered dementias to be relatively immune to social constructivist ideas given that the underlying neurodegeneration had been convincingly demonstrated. What I had not accounted for, however, was the complexity of the relationship between aging and AD, and to what extent these two constructs-the former considered a natural, universal feature of human existence, the latter a horrendous disease-are enmeshed with each other. There is a provocative side to Dr Whitehouse’s ideas, and it is easy for some to get distracted by that-but the underlying arguments are well-constructed and backed by scientific evidence. It helps that Dr Whitehouse has the stellar academic credentials that he has, along with the experience of working with pharmaceutical companies in the development of acetylcholinesterase inhibitors, because his views cannot be summarily dismissed as a product of lack of expertise. Dr Whitehouse forces us to challenge our preconceived notions and to think anew about aging from a very different perspective.

Aftab: Let’s talk about The Myth of Alzheimer’s. It’s a very well-written and provocative book that challenges conventional wisdom in how we understand this condition. Some themes that stood out to me in your arguments:

• We tend to think of Alzheimer disease (AD) as a single entity, but it is actually highly heterogenous and is an umbrella term for many different conditions.

• We think of AD as a “disease” but its status as a disease is questionable because it is a consequence of “natural” aging processes; seeing it as related to aging still acknowledges that the individuals diagnosed with AD do suffer, can be highly impaired, and are in need of help.

• We have focused so much of our efforts in trying to “cure” this “disease” with a medication that we have forgotten the issue that really matters: how do we create social conditions in which the aging members of the community-including those with dementia-can flourish and have some measure of well-being.

Do you agree with this characterization? Have your views changed much since this book was published in 2008?

Whitehouse: Thanks, Awais, for your positive comments and the opportunity to speak with you. My writing and academic collaboration with Danny George has been a productive joy and is manifesting in a second coauthored book tentatively called Brain Health in an Unhealthy Society (forthcoming Johns Hopkins University Press) that addresses exactly your first questions. We do believe time has supported the claims of The Myth that AD is heterogenous and intimately related to aging processes, although I might argue with the label “natural” for all the changes that occur with aging or dementia.

In this new book, we argue that the potentially more modifiable causes of dementia lie in economics, politics, and ecology, not only in aging processes themselves. Eleven years have passed since our first book was published and income inequity and environmental deterioration are increasingly deadly forces affecting health. In Brain Health we present further evidence, not available in 2008, that the excessive emphasis on medicalized approaches is harmful to individuals and society, and once again argue for broader public health and more fundamental cultural responses to the challenges of age-related cognitive decline.

Aftab: How was the book received by the medical community? Did it have the impact you were hoping it would?

Whitehouse: The dominant power players either rejected it with uncritical anger or more commonly ignored it. Prominent lay organizations (and their “experts”) locally and nationally publicly rejected the book as irresponsible and inaccurate apparently before reading our gift copies. The title was too provocative for them. Their livelihood is based on, in our view, an irresponsible and inaccurate social construction of “Alzheimer’s.” Many of my friends and other dementia experts would privately agree with us. So, I think we did serve to get people thinking about different ways of framing AD and related conditions. Slowly we are moving more toward prevention and care rather than sticking with our obsession with drugs, biologics, and cure.

Aftab: Was the title of your book The Myth of Alzheimer’s in any way a hat-tip or nod to Thomas Szasz’s infamous The Myth of Mental Illness?

Whitehouse: Yes, it was. Szasz influenced me during my training in neurology and psychiatry at Johns Hopkins. As my mentor Jerry Frank said to me “the medical model is not even good for medicine.” So, I extended the ideas of social construction into neurological conditions and beyond biopsychosocial to ecopsychosocial, especially in the new book. This latter term emphasizes that health is imbedded in ecosystems and that often biomedicine gets the biology wrong by focusing too much on reductionistic and static models rather than systemic and evolutionary conceptions. We wanted to call the book The End of Alzheimer’s to mimic other concept-based books like The End of History and The End of Nature, but the publisher wisely thought that would imply promising a cure. The Myth title rightly emphasized the power of grand stories.

Aftab: Even if we accept that AD is a form of brain aging, one may argue that AD should nonetheless be seen as a disorder of brain aging. This could be in a qualitative sense, such that some aging process has gone awry (for instance, genetic mutations in pre-senile dementias) or quantitative sense, such that AD is at the extreme end of the spectrum of biological aging.

Whitehouse: First, we must keep the plural in mind. AD includes various forms of brain aging and a panoply of biological processes we may never fully understand. Each person’s “AD” is unique to them because of the personal nature of their own genetic makeup and their life circumstances over time. Since both AD and brain aging are heterogenous, it is very difficult to define the boundaries between them. Yes, we think it better to call AD a “disorder,” “condition,” “illness,” or “syndrome” rather than well-defined disease. Eventually it is all about economic and political power surrounding who gets to control the labeling process. Do we want the often self-serving professional purveyors of false hope and profit-at-any-cost Big Pharma to control our brains (and minds) and our aging or do we want to embrace our collective responsibility to create opportunities for and with each other in community?

Aftab: You’ve had a hard, unforgiving look at AD. What about other dementias, such as frontotemporal or Lewy body? Do you approach them with the same sort of skepticism that you do AD? Or do you accept the standard biomedical narratives of these dementias?

Whitehouse: Awais, this is a fundamentally important question. After our new chair of neurology praised (excessively I thought) our book in a department meeting for the second time, I tongue-in-cheek suggested we need a series of books emanating from our department-the Myth of Parkinson Disease and the Myth of Stroke! What I say is that every disease is socially constructed, and everyone has a biology (however complex). Lewy body dementia was controversial in the beginning as to whether it was a variant of AD or a separate entity with UCSD and Newcastle advocating different views.

Similarly, we can take a look at how the labels arteriosclerotic, multi-infarct, and vascular dementia have evolved over time. What of studies that show some decline in executive functions with “normal” aging? The essential issue is how do we help people at risk for or who suffer from brain conditions that impair quality of life. Yes, I am skeptical of essentially all claims from modern medicine which has lost a bit of its soul in my view, no thanks to the proliferation of bioethicists who do not in my opinion adequately challenge the incessant claims of progress in medicine.

Aftab: Every disease is socially constructed in the sense that there is a particular inter-subjective way in which we describe it, classify it, treat it, understand its relationship with other conditions, and these particular ways are influenced by a host of social-historical-political factors. I would like to think that different conceptualizations of disease differ in the degree to which they capture the objective reality or “carve nature at its joints.” “Neurasthenia” and “tuberculosis” may both be socially constructed but their correspondence to nature is likely very different. I guess what I’m trying to say is that if we are not careful, we are at risk of trivializing the notion of social construction and what it may have to offer medicine. If everything-whether Parkinson disease, or stroke, or glioblastoma multiforme-is a “myth,” then calling something a “myth” (such as AD) doesn’t possess much of a significance or sense of alarm that something is amiss.

Whitehouse: I would not want to trivialize social construction! All diagnostic labels are words first that we agree (with varying degrees of controversy) to use that signal something about patterns that we think we see in nature. Before we understood the role of bacteria in disease, the clinical phenomenology of diseases such tuberculosis and syphilis and so on were socially constructed in different ways. Social construction is informed by biology-but the real issue for me is how dis-ease and suffering are viewed and who gets the power over attempts to relieve them.

Aftab: One of the things that was most fascinating to me about your book was the history of AD. I don’t think even most clinicians in the dementia field are properly aware of this history. For that reason, I want us to walk through this history a little bit here. Alois Alzheimer is supposed to have discovered "AD," even though "senile dementia" was already a well-recognized entity. So, what did Alzheimer actually discover?

Whitehouse: Arguably, Alzheimer found plagues and tangles together in the brain of a woman in her early 50s with dementia and psychosis (followed by some other similar cases). The reason this and subsequent cases captured his attention was because of the exceptionally young age of the patients. Alzheimer himself wasn’t sure if this constituted a distinct disease or if it was a variant of senile dementia. Some historical evidence suggests that Alzheimer and Kraepelin did not consider senile dementia to be a disease, since such deterioration of the brain and cognitive faculties was considered to be “normal” for old age in those days.

Over some objections from Alzheimer, Kraepelin “invented” “AD” by labeling it as such in his influential textbook of psychiatry, Psychiatrie: Ein Lehrbuch für Studirende und Aerzte, describing it as a pre-senile dementia with characteristic neuropathological features. He may have been in a rush to claim the discovery of the disease by his department, perhaps competing for disease creation fame in the politics of early 20th century brain psychiatry in Germany. Just like modern biological psychiatrists today with their PET and MRI brain scanning, the early “brain psychiatrists” were seduced by then new methodology, specifically brain imaging with neuronal stains and photomicroscopy.

Aftab: Researchers are increasingly targeting mechanisms of aging in an effort to delay and prevent chronic age-related conditions. There is an increasing call to think of aging itself as a disorder. I am inclined to think that there is no objective, fact-based answer to this, and that complex human values determine what condition counts as a "disorder." That is, it is not science that will determine whether aging is a disorder (although science will help illuminate relevant facts) but rather our social and historical context and our pragmatic concerns. Your thoughts?

Whitehouse: Absolutely agree. And this is a fundamental wisdom about health and disease. He/she/they that control language also control resources and manipulate the sources of hope. Culture at large, not doctors alone, should define normal and hopefully celebrate many variants of it. Psychiatrists were late to depathologize homosexuality, for example. Interprofessional empowerment is key in health care. Give more power to clients, families and communities as well as to nurses and social workers (and other providers) and less to those who think our genes and biologies define our humanity rather than our stories and our relationships.

Aftab: You describe your professional identity as a "transdisciplinarian." What does that mean? Why should we aspire for transdisciplinarity?

Whitehouse: I was born an interdisciplinarian and am working to die a trans! I have had academic training and appointments in a dozen fields in six universities. I have lived the creation of bioethics, neuroscience and cognitive science as fields and eventually disciplines. Most fundamentally for me transdisciplinarity argue for the need to go “between to go beyond.” Transdisciplinarity asks us to explore the dynamic boundaries among disciplines more than just interdisciplinarity does. If we are to have any hope for flourishing future as a species in an era of climate change and social inequity caused by neoliberalism, we need to “Wise up and design a course for the future” (the title of my intergenerational and transdisciplinary course at Case Western Reserve University). Ultimately, we need to transform the structure and processes of our institutions of so-called higher learning to address the growingly wicked problems of the world today and tomorrow. Transdisciplinarity is a part of that transformation and translation efforts.

Aftab: Philosophers talk of interactive loops: medicine creates diagnostic constructs, which shape how public understand these conditions, which influences their health concerns and associated health anxieties, which influences their clinical presentations, which end up solidifying the diagnostic constructs, and everyone ends up convinced that there is more reality to these constructs than is really warranted. There are a lot of examples from psychiatry, but right now I'm thinking of how the dementia field conceptualizes subjective cognitive decline and mild cognitive impairment (MCI) as being the early clinical manifestations of AD, and how much anxiety this generates in the aging public, and how this drives more and more people seeking evaluation for memory complaints and getting diagnosed.

Whitehouse: Yes, indeed MCI was problem enough as a term that the experts could not agree upon and yet foisted on an often confused public. But subjective cognitive impairment or sometimes also called subjective cognitive decline (SCI or SCD), concern about memory or other cognitive decline without evidence on objective test, is a potentially worse social construction. Is our goal to have practically everyone suffering from this label? And if we look at our human memories, executive functions, attentional capabilities, and activities of daily living, maybe we all not only have subjective cognitive impairment but a degree of objective cognitive impairment or maybe collective dementia. Yet despite the vagueness of SCD, prominent AD associations have been prompting “ethical” “appropriate use” guidelines to use CSF (spinal fluid) tests in some people with SCD and encouraging the use of the term in public health. You know humility (an essential aspect of wising up) cures a lot of human ills, but we have all too little in the Alzheimer field.

Aftab: Modern medicine in the US appears plagued by a certain disingenuity: we want to spend public resources only on treating "disorders," and this incentivizes labeling many forms of human aging and suffering as disorders so that insurances can be billed, grants can be obtained, academic careers can be built, and medications can be developed and sold. I find this quite troubling, and it's difficult to talk about this with other colleagues in medicine, because as Upton Sinclair remarked: “It is difficult to get a man to understand something, when his salary depends upon his not understanding it!”

Whitehouse: The Alzheimer field has probably helped the “experts” more than patients or caregivers. Moreover, it has neglected what we should be doing – prevention and public health. I guess we humans are like fish not being able to perceive the dominance of the ubiquitous water in their lives, but in our case, it is money that provides our fluidity. Next to wisdom we need courage. I am tenured and also an emerging elder and with those liberations comes greater responsibility. Those that “have” (power, influence, etc.) must for their own self-interest and those of their descendants and the species rise up and lead a necessary revolution.

Aftab: What are your hopes for the future regarding how we approach and understand health and aging?

Whitehouse: True hope exist today-as it always has-in individual authenticity, community relationships, and empowering stories built of the past to draw us into the future. Hope never left Pandora’s box of evils but we need to claim it now, not as an evil cause of delusion but as an antidote to the pathologies of modernity. For me working intergenerationally (and transdisciplinarily) is a way to commit to creating a healthy future. I see the emergence of the feminine spirit (in both women and men, as I aspire to seek this in myself) with its focus of caring and relationship as critical. I do see more action in the dementia field around improving care and public health.

I continue to believe that such rethinking and revaluing around AD can be a lever for larger culture change. I have seen in my life the landing on the moon, the mapping of genomes, and AI win at Go. We are a remarkable species that can and has changed culture dramatically over an evolutionarily short period of time-but our biggest challenge is ahead. Let’s use our brains/minds and inspire elders to lead the way. If we do not listen to Mother Nature, she will increasingly switch from the carrot to the stick and we will not like it.

Aftab: Thank you!

Dr Aftab is a psychiatrist in Cleveland, Ohio. He completed his psychiatry residency at Case Western Reserve University/University Hospitals and trained in geriatric psychiatry at University of California San Diego. He is a member of the executive council of Association for the Advancement of Philosophy and Psychiatry and has been actively involved in initiatives to educate psychiatrists and trainees on the intersection of philosophy and psychiatry. He is also a member of the Psychiatric Times Advisory Board. He can be reached at awaisaftab@gmail.com.

The opinions expressed in the interviews are those of the participants and do not necessarily reflect the opinions of Psychiatric Times.

Previously in Conversations in Critical Psychiatry

Relentless Warrior for Mental Health: Allen Frances, MD

The Structure of Psychiatric Revolutions: Anne Harrington, DPhil

Skepticism of the Gentle Variety: Derek Bolton, PhD

Explanatory Methods in Psychiatry: The Importance of Perspectives: Paul R. McHugh, MD

Chaos Theory With a Human Face: Dr Niall McLaren

The Rise and Fall of Pragmatism in Psychiatry: S. Nassir Ghaemi, MD, MPH

Integrating Academic Inquiry and Reformist Activism in Psychiatry: Sandra Steingard, MD, and G. Scott Waterman, MD

Disclosures:

Dr Aftab and Dr Whitehouse have no relevant financial disclosures or conflicts of interest.