Alzheimer Disease: The Changing View: The Changing View / Edition 1

by Robert Katzman, Katherine Bick

Overview

This book details how "Alzheimer Disease" went from being an obscure neurologic diagnosis to a household word. The words of those responsible for this revolution are the heart of this book. Dr. Robert Katzman and Dr. Katherine Bick, leaders in Alzheimer research and policy making, interview the people responsible for this awakening of public consciousness about AlzheimerDisease from 1960 to 1980. They speak with the scientists, public health officials, government regulators, and concerned relatives and activists responsible for taking this neurodegenerative disease out of the "back wards" through the halls of Congress, and on to the front page. The reader will learn how the explosive increase in research funding and public awareness came about, how physicians and psychiatrists established diagnostic criteria, how drugs were developed that offer hope for sufferers, and how the Alzheimer's Association was born.

Product Details

ISBN-13:	9780124019553
Publisher:	Elsevier Science
Publication date:	04/24/2000
Pages:	387
Product dimensions:	6.00(w) x 9.00(h) x (d)

About the Author

Robert Katzman, M.D., a member of the Institute of Medicine of the National Academy of Sciences, is the recipient of numerous scientific awards. He has enjoyed a long career as a physician, neuroscientist, and policy maker, serving on the faculty at Albert Einstein University in New York and currently at the University of California, San Diego. His research has centered on the epidemiology of aging and Alzheimer disease, and his seminal editorial in 1976 sparked the NIH to hold the first conference on the subject. Dr. Katzman has been a catalyst in the formation of the Alzheimer's Association.

Katherine Bick, Ph.D., worked in academia for 20 years before joining the National Institutes of Health in 1976. At NIH she became a major figure in U.S. research and health care funding policy, serving as deputy director of the NINDS and later deputy director of NIH for extramural research. She has an avid interest in the history of Alzheimer disease and is one of the editors of the field's foremost text on the subject.

Read an Excerpt

Chapter 6: Improving the Accuracy of Diagnosis

Victor had set up a program at the Cleveland Metropolitan Hospital with a very distinguished faculty, including Dick Johnson, Ken Johnson, and Betty Banker, along with Maurice, of course. I went there for a residency and, as is well known, Maurice was always interested in the mental state. When I asked him about his ideas and a couple of sources, he mentioned George Talland, a psychologist at the Mass General who was one of the early investigators of memory disorders in relation to the brain. He wrote several small, very lovely monographs on memory and learning. The American Psychological Association has a lectureship named after him now. He was one of the early neuropsychologists. So that was one influence on Maurice.

I didn't learn until 25 years later that an important influence on his teaching was Mandel Cohen (a psychiatrist at Massachusetts General Hospital). I'll tell you that story later because Maurice never told me about that. That style of teaching was not really a historical style, like so-and-so said this or that, which wasn't really the way they did it. They taught you to look at a case, to look at the method, and do your own examination.

During that residency, I was introduced to psychological testing because, contrary to most other places, the neurology residents were required to do intelligence tests on the patients. This was against all the rules-if you had asked any real psychologist if they should do that, the answer was no. (As a matter of fact, in later days, I tried to have my students taught to do the intelligence tests. The psychologists said it would be terrible and it shouldn't be done -that they weren't really trained properly and couldn't do it.) So the fact was that he went off on his own and bought the kit and I asked, "How do you do this anyway?" He said, "Just read the manual, and go and do it." So there I was giving intelligence tests to the patients and also learning the rudiments of the mental state examination, which eventually ended up in the Mini-Mental.

While I was in Cleveland, Paul McHugh called to find out what I was doing. I told him I was getting ready for my third year, to do my year of neuropathology. Paul said, "You don't want to do that. What you want to do is to come here now. I've got this program and you want to be a psychiatry resident under me." Maurice and Betty were not too happy about that but I packed up and went from Cleveland to New York, the Westchester Division of Cornell, where I started a psychiatry residency. That was where the Mini-Mental came about.

I had 2 years of a neurology residency and a year of medicine, so I was a bit senior to the other first-year residents there. I was more confident in my ability to examine a patient and figure out what was going on. I would wander around the hospital to see what was happening and noticed that they had about three wards of geriatric patients. Each ward must have been about 20 beds but nobody was doing anything with them-they were just there. There was an attending who would go around and minister to their needs, but there were no students, no residents, no research going on. I told Paul that as soon as I could do something, I wanted to do those geriatric wards.

After 2 years in the Navy, where I did straight neurology, I returned to the Westchester Division of New York Hospital. The first thing we did was to bring medical students and residents onto the geriatric service. One of the early people, the first or second rotation, was Susan Folstein. She was a good student who wasn't afraid to tell me to do something different. That's how the Mini-Mental came about. We would be on rounds and I would ask her how the patients were doing, and she would say they were doing better or not. Then I would start to grill her about what she meant, how better, e.g., is their memory better, is their attention better? She had never been taught any of this stuff before so she said, "Don't give me a lot of trouble, just write down the questions you want me to ask. I'll do it and that way we'll be able to have rounds and not squabble over this." So that's what happened and I went back and wrote the Mini-Mental questions. I think there were two drafts with no patients involved, just listing the questions and trying to organize them, which we did in the evenings. Because this was for a resident to use, the aim was to construct a series of questions that a resident could remember when examining the case and that didn't require a lot of equipment (as it was to be done on rounds). It also had to be at an appropriate level of difficulty for very sick people. That was the rationale.

The first section was rather obvious, all doctors always ask patients about their orientation. The second part I had learned from Maurice Victor; it came from George Talland. I knew that you had to give people something to remember and have a delay, then ask them to recall it. There were different forms of memory, so you had to do that. Then for the last section, I thought that there ought to be something in there about aphasia. The problem was that I could never figure out what aphasia was. Everybody who taught me, including some very good people, such as Claude Ghez who was senior resident, gave lectures about aphasia that were so complicated that I couldn't figure it out. I decided to boil it down to the simplest possible questions that I could remember.

Paul McHugh had taught me quite a lot about the mental state examination during the course of my training with him, so I went to him and said that this aphasia part is very difficult. And he said it's really very simple, just find out if they can name, if they can follow instructions, and can write a sentence, and that's how you do it. So I put that section in.

Now, I didn't learn until 25 years later that many of those items were actually taught to both Maurice and Paul by Mandel Cohen. He never wrote it down or got credit for it. Recently, I was with him and I said, "Tell me how you do a mental state examination." And he said, "Well, you know, I ask them if they're oriented and I ask them to remember a few things, see if they can do serial Ts, and . . ." He essentially went down the whole Mini-Mental as being the way that he did a mental state examination. And be said the most important thing is to see if they can write a sentence.

So, clearly, that is at least one source where this style of examining patients came from, and he probably learned it from Adolf Meyer. He was a medical student under Adolf Meyer and also was very active at the Boston City Hospital with Denny-Brown, who was interested in doing a thorough mental state examination. In fact, as I think about it, Denny-Brown wrote a little spiral-bound handbook that the residents used to carry around in their pocket called the neurological examination. In it, there were some detailed questions about the mental state examination. Like most other sources, however, there was just too much material, and it was in no particular order. You just couldn't remember it all.

Anyway, there we were, at New York Hospital, we had just written down these questions and Susan started to give them to the patients on the wards. We thought this could be a test, we could make a test out of this. But, of course, we didn't know how to make a test. We didn't have a grant. We didn't have anything. We were just piggybacking this in our spare time, and we needed some help.

The person that I went to for help was the head psychologist at the Westchester Division, Armand Loranger, who went on to be a very distinguished investigator primarily in the realm of the measurement of personality. Across the hall from his office at the Westchester Division, there was a little room that he had made into a psychological library where he had all the standard books of the time. He had been trained by Anne Anastasia at Fordham who, at the time, wrote the standard textbook on psychological testing, which is still used. He said to just go read Guilford and figure out how to do it. That was it, basically, he pointed me in the direction and I started reading this stuff. I didn't know anything about statistics, about validity or reliability, or anything. We got out the single book on nonparametric statistics, I can remember.

Finally, we figured out what we had to do. We had to find out whether if two shifts of nurses gave these questions, would they get the same answer? That would be reliability. Then we have to figure out what this thing is measuring...

Table of Contents

Preface.Setting the Stage.The Pioneers.The Need for Care.Understanding the Biology of AD.The Cholinergic Story: Hope for the Patient and Family.Improving the Accuracy of Diagnosis.The Impact of AD and Society's Response.The Next Act.

Preface

In 4977, the editors of this volume, in collaboration with our colleague Dr. Robert Terry, organized a 3-day workshop /conference in Bethesda, Maryland, on Alzheimer disease and related disorders under the sponsorship of three of the National Institutes of Health: the National Institute of Neurological and Communicative Disorders and Stroke, the National Institute on Aging, and the National Institute of Mental Health - a conference that was highly successful. We had two goals. The first was to reach consensus that Alzheimer disease (AD) was not just a relatively rare neurodegenerative disorder of the presenium, but was the major cause of dementia in the elderly in developed countries. The second quite different goal was to bring together investigators who had already made important contributions to the field and others whom we sought to recruit to the field in order to help jump-start" research in AD.

Twenty years later, the two of us, gratified by the explosive success of the field of AD research and in the growth of the Alzheimer's Association initially formed shortly after the workshop/conference - thought we should document the work and views of the pioneers whose efforts in the 20 years preceding this conference had brought the subject into modern biology. The tool we use is oral history. We have interviewed 23 of the major participants in the scientific and health care advances that occurred in the period between 1960 and 1980. This series of interviews - interviews that touch both on the human and on the scientific aspects of the advances that each has made - constitutes this volume. Because the words of our interviewees will be of interest to a broad audience of scientists, clinicians, and family members, we have tried to provide help from time to time in editors' notes, selected references, and reading lists, but the words are those of the interviewed. We hope that our readers will enjoy the stories that are told.

We grouped the interviews to begin with the pioneer work of the 1960s that applied modern biology to the AD brain and developed a prospective clinical-neuropathological approach that demonstrated the identity of AD and senile dementia. During the seventies, further advances occurred with the development of experimental approaches, studies of the role of genetics, culminating in the discovery of the major role of cholinergic deficits in the AD brain. Again in the sixties, as the numbers of AD victims -- patients and their families increased, innovative care arrangements were introduced. Clinicians began to standardize diagnostic approaches. As it became understood that AD was the most important cause of dementia in the elderly, epidemiological studies took on new meaning, and the extent of the public health impact of AD was recognized. These societal changes served as a major impetus for the formation and success of the Alzheimer's Association. The changing views in medical thinking over this time span become evident when one contrasts the description of the term "chronic organic brain syndrome" used for dementing diseases in the 1952 Diagnostic and Statistical Manual of the American Psychiatric Association (DSM 1) with the appearance of a straightforward definition of dementia in the 1980 version (DSM III).

Readers will discover that the authors prefer the term "Alzheimer disease" but have used "Alzheimer's disease" whenever the interviewee or organization used that term. We have used British spelling in the interviews with our British colleagues and American spelling elsewhere.

We wish to call the reader's attention to three accounts that overlap aspects of our narrative but from different perspectives: Patrick J. Fox's 1989 detailed article, "From Senility to Alzheimer's Disease: The Rise of the Alzheimer's Disease Movement" [Milbank O 67(1), 58-102 (1989)x; Daniel A. Pollen's intriguing book, Hannah's Heirs: The Quest for the Genetic Origins of Alzheimer's Disease, Oxford Univ. Press, New York, 1993; and Peter J. Whitehouse, Konrad Maurer, and Jesse E Ballenger (eds), Concepts of Alzheimer Disease: Biological, Clinical and Cultural Perspectives, Johns Hopkins Univ. Press, Baltimore, 2000.

With regard to the current status of Alzheimer disease, the reader may wish to consult the following general reading:

Katzman, R., and Fox, P. (1999). The worldwide impact of dementia in the next fifty years. In "Epidemiology of Alzheimer's Disease: From Gene to Prevention" (R. Mayeux and Y. Christen, eds.), Springer-Verlag, New York.

Terry, R. D., Katzman, R., Bick, K. L., and Sisodia, S. (eds.) (1999), "Alzheimer Dis ease," 2nd ed., Lippincott-Williams & Wilkins, Baltimore.

Acknowledgments

We thank our interviewees for their cooperation and patience. We are indebted to our editor at Academic Press, Jasna Markovac, Editor in Chief of Biomedical Sciences, for her enthusiasm and encouragement in our undertaking. Marge Lorang, our Editorial Coordinator, has been an especially sensitive interpreter of our goals for the project. Working with her has been a pleasant and profitable experience. We are grateful to Sue Johnson, Dr. Katzman's administrative assistant, for cheerfully keeping us organized during the flow of the many iterations of the interviews and for faciliating the retrieval of historical information. Robert Katzman thanks Nancy Katzman for her constant support in this as in so many other ventures.

In dedicating this book, Katherine Bick pays tribute to the inspiration of the late professor Luigi Amaducci, who sparked her historical interests. Robert Katzman dedicates this book to Nancy's mother, Elsie Anderson Bernstein, who so dearly loved life, but who lost the last decade of her own life to Alzheimer disease. This experience with the reality of Alzheimer disease played a major role in shifting his career focus to the dementing illnesses.

Editorial Reviews

"The authors are imminently qualified to write on this subject...their first-hand knowledge of the period in question and of the individuals they interview enriches the book's content considerably." —Norman R. Relkin, MD, PhD in NEUROLOGY (April 2001) "Katzman and Bick demonstrate considerable interviewing skills, and their respondents provide remarkably generous and candid material. This book will therefore fascinate students of the history of science, regardless of their interest in Alzheimer's disease. For those who have such interest, it is a rare treat." —John C.S. Breitner, MD, MPH, ANNALS OF NEUROLOGY (March 2001)

From the Publisher

The authors are imminently qualified to write on this subject...their first-hand knowledge of the period in question and of the individuals they interview enriches the book's content considerably.

Norman R. Relkin

Katzman and Bick demonstrate considerable interviewing skills, and their respondents provide remarkably generous and candid material. This book will therefore fascinate students of the history of science, regardless of their interest in Alzheimer's disease. For those who have such interest, it is a rare treat.
—Annals of Neurology

John C.S. Breitner

Interviews with 23 pioneers in the field document the progress in research on Alzheimer's disease during the period from 1960 to 1980. Interviews touch on both the human and scientific aspects of the advances that each researcher has made. Because the material is of interest to a broad audience of scientists, clinicians, and family members of patients, the editors have added notes, selected references, and reading lists to supplement the interviews. Interviews are in sections on early research, the need for care, the biology of the disease, the role of cholinergic markers, diagnosis, and the impact of Alzheimer's disease and society's response. Katzman is affiliated with the University of California-San Diego. Bick is affiliated with the National Institutes of Health. Annotation c. Book News, Inc., Portland, OR (booknews.com)

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