The Myth of Alzheimer's: What You Aren't Being Told About Today's Most Dreaded Diagnosis

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9780312368166: The Myth of Alzheimer's: What You Aren't Being Told About Today's Most Dreaded Diagnosis

Dr. Peter Whitehouse will transform the way we think about Alzheimer’s disease.  In this provocative and ground-breaking book he challenges the conventional wisdom about memory loss and cognitive impairment; questions the current treatment for Alzheimer’s disease; and provides a new approach to understanding and rethinking everything we thought we knew about brain aging.
The Myth of Alzheimer’s provides welcome answers to the questions that millions of people diagnosed with Alzheimer’s disease – and their families – are eager to know:
Is Alzheimer’s a disease?
What is the difference between a naturally aging brain and an Alzheimer’s brain?
How effective are the current drugs for AD?  Are they worth the money we spend on them? 
What kind of hope does science really have for the treatment of memory loss?  And are there alternative interventions that can keep our aging bodies and minds sharp?
What promise does genomic research actually hold? 
What would a world without Alzheimer’s look like, and how do we as individuals and as human communities get there?
Backed up by research, full of practical advice and information, and infused with hope, THE MYTH OF ALZHEIMER’S will liberate us from this crippling label, teach us how to best approach memory loss, and explain how to stave off some of the normal effects of aging.

Peter J. Whitehouse, M.D., Ph.D., one of the best known Alzheimer’s experts in the world, specializes in neurology with an interest in geriatrics and cognitive science and a focus on dementia.  He is the founder of the University Alzheimer Center (now the University Memory and Aging Center) at University Hospitals Case Medical Center and Case Western Reserve University where he has held professorships in the neurology, neuroscience, psychiatry, psychology, organizational behavior, bioethics, cognitive science, nursing, and history.  He is also currently a practicing geriatric neurologist. With his wife, Catherine, he founded The Intergenerational School, an award winning, internationally recognized public school committed to enhancing lifelong cognitive vitality.

Daniel George, MSc, is a research collaborator with Dr. Whitehouse at Case Western Reserve University in Cleveland, Ohio, and is currently pursuing a Doctorate in Medical Anthropology at Oxford University in England.

“I don’t have a magic bullet to prevent your brain from getting older, and so I don’t claim to have the cure for AD; but I do offer a powerful therapy—a new narrative for approaching brain aging that undercuts the destructive myth we tell today.  Most of our knowledge and our thinking is organized in story form, and thus stories offer us the chief means of making sense of the present, looking into the future, and planning and creating our lives.  New approaches to brain aging require new stories that can move us beyond the myth of Alzheimer’s disease and towards improved quality of life for all aging persons in our society.  It is in this book that your new story can begin." -Peter Whitehouse, M.D., Ph.D. 

"synopsis" may belong to another edition of this title.

About the Author:

Peter J. Whitehouse, M.D., Ph.D., one of the best known Alzheimer’s experts in the world, specializes in neurology with an interest in geriatrics and cognitive science and a focus on dementia.  He is the founder of the University Alzheimer Center (now the University Memory and Aging Center) at University Hospitals Case Medical Center and Case Western Reserve University where he has held professorships in the neurology, neuroscience, psychiatry, psychology, organizational behavior, bioethics, cognitive science, nursing, and history.  He is also currently a practicing geriatric neurologist. With his wife, Catherine, he founded The Intergenerational School, an award winning, internationally recognized public school committed to enhancing lifelong cognitive vitality.

Daniel George, MSc, is a research collaborator with Dr. Whitehouse at Case Western Reserve University in Cleveland, Ohio, and is currently pursuing a Doctorate in Medical Anthropology at Oxford University in England.

Excerpt. Reprinted by permission. All rights reserved.:

The Myth of Alzheimer's
PART ONETHE HISTORY OF A DISEASEINTRODUCTIONREVEALING THE MYTH OF ALZHEIMER'SIf at first the idea is not absurd, then there is no hope.--ALBERT EINSTEINWhen we think about myths, we usually think of timeless tales of gods, heroes, and monsters that entertain and enthrall. Since the Enlightenment, mythology has been regarded as the province of more primitive minds--something humanity has moved beyond in its embrace of scientific methodology. But has science been successful in purging contemporary civilization of all myths? I don't believe that it has or likely ever will.In fact, although we depend on the objectivity of science, scientifically influenced fields such as medicine are often rife with their own myths and misapprehensions. This is because, as the anthropologist Claude Lévi-Strauss 1 believed, every myth--whether it be about a god hurling a lightning bolt from a mountain, a hero undertaking harrowing adventures filled with sirens, storms, and ferocious beasts, or a generation of scientists trying to fight a peculiar disease of old age--is driven by the need to address the complexities of the human condition and to try to resolve paradoxes that perplex us. In our modern age, in which remarkable scientific and technological advances have both extended and brought quality to human lives, we find major challenges to our rationality and values as scienceattempts to understand our own mysterious organ of rational thought--the brain--and the very processes of brain aging. From out of the depths of this paradox, a hundred-year-old monster has risen; it is called "Alzheimer's disease."THE MYTH OF ALZHEIMER'SAlzheimer's disease represents our culture's attempt to make sense of a natural process (brain aging) that we cannot control. Just as past civilizations posited mythical explanations for natural events they could not explain, we have created an antagonist: a terrorizing disease of the brain that our scientists are fighting against. The pillars of the myth are as follows:AD is a singular diseaseDespite widespread belief that there is a disease called Alzheimer's against which science is waging war, what the public isn't told is that so-called Alzheimer's disease cannot be differentiated from normal aging and that no two illness courses are the same. As you will learn, there is no one biological profile of Alzheimer's that is consistent from person to person, and all the biological hallmarks of AD are also the hallmarks of normal brain aging.People "get" Alzheimer's in old ageIt seems as if more people fall victim to Alzheimer's each year. Newspapers and magazines would have us believe that Alzheimer's is spreading throughout human populations, and especially baby boomers, like an epidemic and claiming millions more victims.However, what you aren't told is that we don't even know how to diagnose Alzheimer's disease, let alone tabulate the numbers of disease victims. Because there is no single biological profile for AD, every clinical diagnosis is considered "probable"--and, frankly speaking, not even postmortem examination can differentiate a so-called AD victim from those who have aged normally. Hence, the claim that a diagnosis of "definite" Alzheimer's can be made after death is itself questionable. The gold standard of neuropathology is a bit tarnished. No one really ever "gets" a singular disease called Alzheimer's, and there is no evidence that Alzheimer's is spreadingthroughout the baby boomer population other than the fact that the world is aging and there are more middle-aged people at risk for brain-aging phenomena.We can cure Alzheimer's through the continued investment of our public and private dollarsThe myth that Alzheimer's is a disease separate from aging also carries the promise that science will one day win the "war" against this disease. But if Alzheimer's cannot be differentiated from normal brain aging, to cure AD we would literally have to arrest the natural process of brain aging. I am not alone in casting doubt upon this myth. As you will read, even scientists in the Alzheimer's research field will tell you that a cure is unlikely and that we need to invest our dollars more wisely by putting them toward prevention and care rather than predominantly in cure. However, like the myth of the Fountain of Youth, which captivated past civilizations, the promise of a panacea for one of our most dreaded "diseases" is a powerful cultural myth, and one purveyed by powerful pharmaceutical companies, advocacy organizations, and private researchers with much profit to gain. It is a myth we have been seduced by, and the combination of hype and fear it inspires has distorted our expectations and understandings about our aging brains.MY STORYFor nearly twenty-five years, I have served as a leader in the Alzheimer's field, and have helped international Alzheimer's organizations and pharmaceutical companies shape the rules, guidelines, diagnostic categories, and accepted clinical approaches to Alzheimer's disease. My experiences and relationships with other colleagues have endowed me with some influence and power and have enabled me to become what the science community calls a "thought leader" (or KOL--"key opinion leader")--one who guides our conventional thinking about a particular condition.In the beginning of my career, at a time when no medicines had been approved specifically for Alzheimer's and companies were unsure about how to proceed in drug development, the pharmaceutical industry reached out to me and listened to my thoughts and opinions about treatingpersons with memory challenges. Once drugs made their way to the market in the 1990s the relationship shifted. Rather than being interested in having my thoughts influence their views, it seemed as if industry wanted to change my mind and convince me that their drugs were worth giving to my patients. This focus on biological approaches to brain aging across our society has shifted the whole dynamic of the field away from caring for the aging patient and his family and toward drugs as the primary means of ensuring the quality of his life. Too often, aging patients and their families leave the doctor's office with little more than a pill prescription (often encompassing several pills) and fear generated by the Alzheimer's myth, knowing little about how to effectively care for the condition.This is inhumane and inexcusable.Now, upon the one hundredth anniversary of the first case of Alzheimer's, I feel obliged to share my stories and the insight I have gained, to inform the general public how I--a lifelong Alzheimer's disease researcher and clinician--have evolved to espouse a different ideological position that transforms a significant portion of what I've believed in as a professional carer for patients. Having spent my life within the scientific, political, economic, and social institutions of the AD field--universities, hospitals, pharmaceutical companies--studying and treating human aging and disease, I am ready to challenge the power that the mainstream "Alzheimer's disease" myth has over us and help people see what I have seen and to think critically about the evolution in thought that has occurred over the past several decades, which has shaped the way we see our aging bodies and minds and the way we act toward them. I want to articulate a story of brain aging that can be a starting point for helping us better cope with and prepare for the travails of cognitive decline.No longer can we safely assume that the march of progress in the "War against AD" is moving at the hoped for speed or direction; no longer can we maintain the mythical illusion that AD is a battle against a specific disease that we will eventually "win"; no longer can we keep looking at aging persons, however embattled, as somehow "diseased." Defining brain aging as a disease and then trying to cure it is at its root unscientific and misguided. In short, Alzheimer's is a hundred-year old myth that is over the hill. The entire scientific, technological, and political framework for aging needs to be reassessed to better serve patients and families in order to help people maximize their quality of life as they move along the path of cognitive aging.THE STORY OF FRANK AND FRANFrank J.68 years old6'2"186 lbs.Concerned about short-term memory lapsesFrank is a retired newspaper editor from Boston, whose short-term memory lapses have him frightened that he has Alzheimer's. Fearing the worst, he has explored the Alzheimer's Association Web site to learn more about his condition. "Alzheimer's disease," the Web site says, "is a progressive brain disorder that gradually destroys a person's memory and ability to learn, reason, make judgments, communicate and carry out daily activities." Frank gets the name of a local neurologist from one of his doctor friends and intends to set up an appointment. 
 
Fran W.57 years old5'6"135 lbs.Memory problems and spatial disorientationFran is a retired children's librarian who has been experiencing memory problems that have thrown her world into disorder. She frequently forgets the time and date and has become anxious, and even obsessive, about her bills and mail, which she's been stowing in shoeboxes underneath her bed in an elaborately organized system. Three weeks ago, she became disoriented behind the wheel and drove into a nearby Baltimore suburb, where she was given a ticket for nearly causing an accident by turning left from the right-hand lane. Fran's family has been worried about her, especially because her father died twenty-five years ago with severe dementia. Her family has convinced her to make an appointment with a neurologist recommended by a friend.Fran and Frank both visit their doctors with family members--Frank with his son Patrick, and Fran with her daughter Beth.Frank's doctor enters the room in a harried manner and offers quick handshakes to him and Patrick. Opening up Frank's chart, he asks Frank to describe his memory problems and then conducts a physical examination. They cycle through hearing, vision, and strength-and-sensation tests, and the doctor silently jots notes in his chart. He then gives Frank a brief memory test, during which Frank curses out loud because it's clear that the fog is in his head today."You know, Doctor, I was a journalist, and I'm used to boiling a story down to the basic facts," Frank says. "I may not like what I hear, but when you tell me what I have, I want you to tell it to me straight. If it's Alzheimer's, tell me it's Alzheimer's."The doctor nods and tells him, "It may in fact be a case of Alzheimer's. I'm not going to make that diagnosis until we get the results of your tests back."He arranges several procedures for Frank--a lumbar puncture to measure amyloid and tau proteins in the cerebrospinal fluid (CSF), along with two brain scans (an MRI and PET) and a neuropsychological examination. He also orders a blood test to find out whether Frank has the ApoE-4 gene. Frank tries to maintain his composure, but the prospect of undergoing multiple tests and the fear about what they might show make him feel nauseated and scared.On the return appointment two weeks later, the neurologist enters the exam room carrying Frank's patient record and the results of his tests. After a quick exchange of pleasantries, he gets right to the point:"Your neurological exam showed the patterns of problems with naming and memory that we associate with Alzheimer's. In addition, your brain imaging and CSF tests are consistent with this diagnosis, and we have identified that you are a carrier of the ApoE-4 gene. This puts you at a higher risk for developing Alzheimer's disease than the normal person. So, in short, Frank, I can tell you that you have Alzheimer's disease."Frank shifts uncomfortably in his chair, a fog of nausea merging with the fog of his confusion. There is a brief pause, and then the doctor continues, directing his attention to Patrick."It's not the end of the world. We have safe and effective drugs called cholinesterase inhibitors, which I'll put your father on right away. I presume that's okay with you?"Frank looks down at his hands, and then glances at Patrick, who fixes his gaze at the floor and nods his consent."Well, Doctor," says Frank hoarsely, gathering himself. "I can't say this comes as a shock, but it's certainly hard news to take. I just don't want to be a burden." He pauses. "Doctor ... can you tell me I'm not just going to fade away like my mother did? Can you tell me I'm not going to just lose myself to Alzheimer's?"Fran's visit starts more auspiciously than Frank's. She and her daughter Beth meet the doctor and are pleased to find that he's a personable man. All of them strike a quick rapport. The doctor listens as Fran talks about her days as a librarian, her hobbies, her family--about when she last felt herself to be sound of mind. Though Fran is having trouble speaking today, mostly because of nerves, the doctor encourages her to tell the story of her memory problems and how they've affected her daily life and her relationships with the rest of her family.Without speaking, she pulls out her purse and passes the doctor a small framed photograph.It's a picture of her father dressed in his Navy uniform."My dad had dementia. He died twenty-five years ago. Watching him fade away was ... just ... just ... well, worse than you could ever imagine. But now my mind is dimming just like his did. I'm so afraid I'm going to be a burden on my family," she tells him.The doctor nods reassuringly. He asks Fran whether she has consulted with anyone outside the medical community about her condition, or sought help from a complementary and alternative medicine provider, or talked with someone in the religious community. He encourages Fran to maintain hope rather than fear.The doctor proceeds to tell Fran that she will be given a neuropsychological test, which will measure her intellectual strengths and her creativity in addition to her weaknesses. Otherwise, she will not be subjected to any invasive tests, which comes as a great relief to Fran. They will meet again in a week's time to follow up.The next week, the doctor invites Fran and Beth to accompany him to his office. He asks how Fran is doing and listens as she talks about the reading she has been doing. Recently, she has returned her books on Alzheimer's and borrowed two self-help books on successful aging: The Creative Age by Gene Cohen, and Finding Meaning in the Second Half of Life by James Hollis."Well, Fran," he tells her, "I think this is an opportune time to review the results of your test, which were actually quite positive. What theyshowed me was that though your visual-spatial capacity may be relatively weak, you are still very strong in verbal performance, which I would fully expect from someone who has spent her life around books."Fran nods, and then looks the doctor in the eye."But you need to tell me, Doctor: Do I have a disease? Do I have Alzheimer's like my dad?""Well, Fran, you have what other people might label as 'Alzheimer's disease,' but I don't believe that type of label applies well to ...

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