UC Berkeley UC Berkeley Electronic Theses and Dissertations Title Without Thinking: An Ethnography of the Diagnosis of Dementia in an American Clinic and in a French Clinic Permalink https://escholarship.org/uc/item/6974v23h Author Tessier, Laurence Anne Publication Date 2014 Peer reviewed|Thesis/dissertation eScholarship.org Powered by the California Digital Library University of California Without Thinking: An Ethnography of the Diagnosis of Dementia in an American Clinic and in a French Clinic. by Laurence Anne Tessier A dissertation submitted in partial satisfaction of the requirements for the degree of Doctor of Philosophy in Anthropology in the Graduate Division of the University of California, Berkeley Committee in charge: Professor Xin Liu, Chair Professor Charles Hirschkind Professor Barry Stroud Fall 2014 Abstract Without Thinking: An Ethnography of the Diagnosis of Dementia in an American Clinic and in a French Clinic by Laurence Anne Tessier Doctor of Philosophy in Anthropology University of California, Berkeley Professor Xin Liu, Chair This dissertation describes the building of knowledge about dementia in two renowned clinics in the world of neuroscience: one situated in America, the other in France. How do these teams of neuroscientists distinguish the demented person from the reasonable person? Drawing on 18 months of ethnographic research, I analyze how the understanding of frontotemporal dementia (FTD), a neurodegenerative disease that is defined in opposition to Alzheimer’s disease (AD), allows neuroscience to explore, from the destruction of our brain, our emotional and social being. Well equipped with contemporary and American cerebral theories on “empathy” and “sociality”, I then examine how teams of neuroscientists diagnose the pathology of the social and emotional being in an individual patient. How do they reach a diagnosis in a context at times marked by uncertainty? I lay out these uncertainties that point to the weakness of an exclusive positive definition of knowledge and I study how medical expertise can be conceived as connoisseurship, bringing to light the “feelings” and “tastes” of these doctors for the disease as a decisive tool for the making of a diagnosis. I conclude on the differences I observed in the understanding of FTD in the French clinic versus in the American clinic. 1 A ma grand-mère, Geneviève Bernad (1921-2007) A mon père, Paul Tessier (1917-2008) i Acknowledgements My deepest thanks to the patients and their family for letting me stay with them during the many interviews and tests that they are going through. I am very grateful to the directors of the American and French clinics who, without reserve, opened the doors of their worlds to me. Thank you to all the neurologists, research coordinators, neurospychologists, psychologists, residents and nurses who participated in this research and without whom this work couldn’t have come into being. I am also indebted to Aaron Cicourel for initiating this project as well as to the funding organizations for aiding to its accomplishment: the Wenner-Gren Foundation for Anthropological research (#8512), the Graduate division at Berkeley and the Berkeley Anthropology department. Thank you to Liu Xin for supporting my endeavor since the beginning and for his instruction and guidance until the end. Thank you to Barry Stroud for teaching me the philosophy of Ludwig Wittgenstein, for always raising insightful questions and suggestions; the descriptive form that I claim I gave to this work owes all to our conversations. Thank you to Charles Hirschkind for supporting this project, for the kind words of encouragements, for being there. I am also grateful to my friends for their interest, their criticisms and the discussions we had in San Francisco, Paris and Héric: Anthony Stavrianakis, Bharat Venkat, Lyle Fearnley, Emily Chua, Graham Hill, Ruth Goldstein, Bruno Reinhardt, Leticia Cesarino, Lara Migliaccio, Nicolaï Johnson and Arnold Pasquier, thank you. Finally, I thank my mother, Mireille Tessier and my brother, Jean-Paul Tessier, for their encouragements and I do owe a special thank to Anthony Stavrianakis for his unconditional support, for correcting the English of this dissertation (if mistakes remain they are mine of course), for his generous comments and for his enthusiasm, for his love and for taking care of our son, Marcel, while I was writing. ii Contents Glossary Introduction............................................................................................................. 1 I. The Science of Frontotemporal Dementia................................................... 15 1. A story of Behavioral Neurology’s birth and thrive................................... 17 1.1 Geschwind’s Disconnection theory: homecoming to Localizationism, splitting from Holism .......................................................................................... 19 1.2 The paradigm at work in Geschwind’s disconnectionism ..................... 22 1.3 The cycles of Behavioral Neurology: birth, thrive, and reign?...............24 2. “What if it’s not Alzheimer’s?”: FTD and AD in a paradigmatic relationship .......................29 2.1 “The dark ages of dementia”: aging, memory and Alzheimer’s disease .. .............................29 2.2. Dementia now: the youth, American football and war ........................ 32 2.3 Social norms and values at work in the knowledge about frontotemporal dementia.........34 II. The Social Brain ............................................................................................... 39 1. Knowledge of the frontal lobe from 1848 until 1994 .............................. 41 1. 1 “Gage was no longer Gage.”(1848) ......................................................... 41 1.2 Lobotomy: Are the frontal lobes really necessary? (1871-1953)...........43 1.3 Escourolle, Brion, Delay (1958): the first systematic studies of Pick’s disease..................... 45 1.4 François Lhermitte: the frontal and the constraint of the social (1986).. .............................47 1.5 Antonio Damasio and colleagues: emotion, the frontal and the social... .............................51 1.6 A chart to conclude.........................................................................................57 2. The behavioral variant of frontotemporal dementia at the Memory clinic 2.1 Lack of punishment and emotional deficit................................................59 2.2 To care or not? The philosopher at the Memory clinic ...........................63 The Home................................................................................................................76 iii III. Uncertainties................................................................................................... 77 1.Certitudes.................................................................................................. 79 Scene 1.”MMS at three.”....................................................................... 79 Scene 2. “Mortified.”.............................................................................. 83 Scene 3. “Ninety-nine years old. ” ...................................................... 87 2.Mild Cognitive Impairment (MCI) .................................................... 91 Scene 4. “To be continued...” ............................................................... 91 Scene 5. “MCI-ish” ................................................................................. 93 Scene 6. The struggle.............................................................................. 96 3.The genetics of neurodegenerative diseases..................................... 101 Scene 7. High uncertainty................................................................... 101 4. Certitudes that fails.............................................................................. 110 Scene 8. A somatoform disorder........................................................ 111 Scene 9. “Munchausen”... “Scary.”.................................................... 114 The Test............................................................................................................. 122 IV. The Diagnosis........................................................................................... 128 1. Smell and nostalgia........................................................................ 128 2. Experience and Art ....................................................................... 132 3. Dr. K: “Actually I love tests.”....................................................... 136 4. Cheryl Joe: “I feel strange.”.......................................................... 143 5. Eugène Minkowski: “Feeling is a tool for our knowledge.” . 166 6. The dog sign .................................................................................... 168 7. “Diagnosis by feeling.”.................................................................. 171 8. “I’m dumb, I am a phenomenologist.”...................................... 173 9. “I’ve never been wrong.”.............................................................. 175 Conclusion........................................................................................................ 182 Bibliography...................................................................................................... 191 iv GLOSSARY Alzheimer’s disease or Alzheimer disease (AD) is the most common form of dementia. It was first described in 1906 by the German psychiatrist and neuropathologist Aloïs Alzheimer. The most common early