Read an Excerpt
The Myth of Alzheimer's
THE HISTORY OF A DISEASE
REVEALING THE MYTH OF ALZHEIMER'S
If at first the idea is not absurd, then there is no hope.
When 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 mindssomething 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 mythwhether 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 ageis 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 thoughtthe brainand 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'S
Alzheimer'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 disease
Despite 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 age
It 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 dollars
The 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.
For 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 Ia lifelong Alzheimer's disease researcher and clinicianhave 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 fielduniversities, hospitals, pharmaceutical companiesstudying 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 FRAN
68 years old
Concerned about short-term memory lapses
Frank 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.
57 years old
Memory problems and spatial disorientation
Fran 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 membersFrank 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 Franka 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 familyabout 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 your situation. All people have brains that age over time, and all of our brains age in different ways. Some people lose some spatial abilities and some lose verbal abilitiesno two cases of brain aging are ever the same. There is remarkable variability in the clinical course of what people used to call Alzheimer's disease. The trajectory of every aging person is unique.
"It's important that you know that you're not alone in your memory problems and that you're not diseased, even though your memory loss may be more pronounced than others your age. Almost everybody gets memory problems to one degree or another as they grow olderunfortunately, some people are more affected than others."
"But will I end up like my dad?"
"I am afraid no one can predict your pattern of change over time. But you are not going to fade away, it's never that simple," the doctor says.
"This does not have to be a tragedy," he goes on. "Even though you're aging, you are still a vital human being with cognitive strengths who can contribute to your family and to society and explore your creative potential. Think of your brain as an old book. Even though it may be a bit tattered, a little worn around the edges, it still possesses wisdom, knowledge, and value that can be given to others."
"Thank you, Doctor," Beth says. "But I still would like to know what my mom has."
The doctor nods. "Beth, after all my years as a neurologist, I have become convinced that we need to break free from the mind-set that memory loss is some sort of a 'disease' that someone 'gets.' Your mom's memory loss is part of what my colleagues and I are coming to understand as the variable results of brain aging. Though it may sound a bit strange, Alzheimer's disease cannot be diagnosedit's a construct that science doesn't fully understand, which I don't believe is very helpful in situations like yours. There is a better framework we can use to explain your mom's condition."
The doctor turns to Fran.
"I think that it's better to think of this as a challenging condition thatputs you and your family in difficult circumstances you must adapt to. Now, obviously, the next logical question to ask is, What can you do? This is the most important part of successful aging."
The doctor spends the next ten minutes talking to her about making dietary changes, eating more fruits and vegetables, as well as foods high in antioxidants, B vitamins, and fish, which is high in omega-3 fatty acids that also seem to have cardio-protective benefits in addition to cognitive ones. He explains the importance of diet in keeping cholesterol and blood pressure low and reducing the risk for diabetes.
"But what's even more important than what you eat is with whom you eat," he says.
With that, he urges her to stay socially and physically active and recommends walking outdoors in warm weather and then in indoor malls when it gets cold; he also emphasizes the importance of continuing to play bridge with friends and meeting them for dinner every week. He suggests taking classes through the adult education program in the community building on the other side of town where she can paint, write, put together an ethical will, play cards, learn calming meditation techniques"anything that will keep you active and engaged," as he puts it.
Lastly, he tells Fran that there are drugs available for her condition, which could offer some small benefit and may be worth a try. He stresses that it is more important that she focus on other ways of staying cognitively vital and to adjust emotionally to the reality of her changing memory, and says that Fran's health team at the clinica nurse and social workerwill help her do this.
"Remember," he tells Fran. "Your life has purpose, and part of that purpose is to continue to help others, just as you have done in the past with your family and with your work in libraries."
Beth reaches over to hold her mother's hand as the doctor continues.
"Fran, I'd also like to suggest that with your verbal strengths, and your experience as a librarian, you enroll in a research project I have started, in which you will teach young kids from the inner city to read. This is an intergenerational initiative that will help people like you find purpose in their later years while allowing you to contribute your skills to a community that really needs them."
Fran laughs. "I'm a librarian, Doctorwe're not allowed to like kids!" Nevertheless, she agrees to give the volunteering a try.
The doctor thanks Fran and Beth for coming, and on the way out says, "The most important thing is that I don't want you living in fear ofAlzheimer's disease, Fran. You are still a vital person who can find purpose and fulfillment in your life and contribute to your family and to your community, even with your aging brain. Your family and I are going to work together to help you write a story of successful aging."
THE WISDOM OF FRANK AND FRAN
In these stories, Frank and Fran have exhibited clinical symptoms that would qualify them for the Alzheimer's disease label, but each received a different clinical story from their doctor that drastically altered the outlook of their condition. Frank's doctor orders a battery of invasive tests, which all seem to indicate that his patient has the deficits of Alzheimer's. In consequence, Frank is given a probable AD diagnosisthe standard storyand is immediately put on cholinesterase inhibitor pills to treat the condition. Understanding himself to be an "Alzheimer's" victim, Frank fears that the disease will doom him to a slow, passive demise and render him a burden on his son. Frank's doctor feels that he has given him a basic biomedical framework in which to understand his cognitive degeneration and draw hope. In reality, this corrupted cultural myth of AD places Frank at the center of a fearsome story with a tragic trajectory that plunges him into suffering and woe.
On the other hand, Fran exemplifies how a patient with memory challenges can be uplifted by her interaction with a physicianhow a more humane and empathetic story about the brain-aging process can combine clinical reality with personal narrative and a vision of hope that can empower elderly persons to realize their human potential and age successfully even as they lose some of their cognitive abilities. Fran's doctor has realized the harm caused by the dominant story of Alzheimer's disease and is actively assisting his patients in creating their own story in place of the standard AD myth. Unlike Frank, who received a disease label, a prescription for cholinesterase inhibitors, and a promise that more effective treatments were on the horizonas happens to hundreds of thousands of people each yearFran received a comprehensive strategy of bio-psychosocial care that would allow her to maintain independent functioning and feel a sense of normality, connectedness, and social and familial usefulness despite her cognitive challenges.
Fran's memory problems and her persistent worries about becoming her father were not denied, ignored, or trivialized by her neurologist. Instead, the doctor allayed her anxiety about Alzheimer's disease by telling a differentstory about cognitive aginga scientifically honest one that de-emphasized the disease label and offered a plan of action to Fran rather than contributing to her fears. While Frank frets about being stigmatized by the label and fatalistically resigns himself to fading away, Fran understands that experiencing memory challenges places her in a majority rather than a minority. The doctor is fostering a story that will enable Fran to age with dignity on her own terms instead of dying disgraced within an intimidating disease framework.
Now I'm going to tell you a small secret: The doctor who treated Frank also provided care for Fran. And in both cases I was that doctor.
I have met thousands of patients like Frank and Fran. Frank is a modern composite of the patients who came to me when I was a young physician at Johns Hopkins University in the 1980s, an endlessly rational, technology-oriented professional who saw what I then called Alzheimer's disease as a pathological disease that could be cured with neurotherapeutics. I emphasized the tragedy in cognitive aging and the burden of care-giving rather than the hope that still remained for affected persons and the potential for growth for their family. Fran is a composite patient who saw the doctor I have become: a committed healer for my elderly patients.
Frank and Fran can have real implications for how our society cares for our aging men and women in the twenty-first century. I am enacting Fran's story with other patients in my own clinical practice and encouraging my colleagues to do so as well. Every aspect of Fran's successful aging plan is real. My patients in Cleveland are:
• Eating healthier diets
• Staying physically fit
• Participating in book clubs
• Volunteering in various programs with inner-city children who are learning to read, utilizing local resources to learn new skills, staying cognitively vital, and keeping socially engaged
• Participating in structured conversations designed to guide families through difficult decision making at the end of life
In other words, my patients and I have begun imagining a new story of brain aging that triumphs over the myth of Alzheimer's. I am finding that a more scientifically honest and humanistic framework of brain aging will enhance the quality of life of those with cognitive challenges who find themselvesunder medical supervision and care, as well as their families. Clinically, I have ceased promoting the AD diagnosis to describe the cognitive aging process in my patients and have de-emphasized the use of cholinesterase inhibitors to treat the symptoms of brain aging. I am more attentive to my patients' stories, and integrate their memory problems into an ongoing narrative that they themselves help write rather than ushering them into the terrifying and nonredemptive myth that medicine has written for them.
THE ROLE OF SCIENCE IN THE NEW STORY OF BRAIN AGING
I have not abandoned my belief in science, nor my hope that we will one day find better ways to protect the brain against the effects of aging. As the Dalai Lama says, we human beings must constantly devote ourselves to seeking new knowledge. It's part of our nature. However, I believe the myth of Alzheimer's is causing us to waste massive resources in unwise quests for magic bullets to "fix" brain agingputting cure before care and prevention, and trying to achieve dominance over a domain that will continue to resist our control. Biotechnology infatuates our collective imaginations, and deserves a reasonable investment of our resourcesbut more profound answers lie in us as individuals and members of caring communities than in the databases and therapy models proposed by scientists, who are working with incomplete theories about how the brain works and how memory loss comes about.
"One of the consequences of depathologizing dementia is that there is no supreme medical authority to whom one might look for definitive answers, and there are no technical solutions, ready-made, on which to rely ... . In one sense this is cause for relief; there is no need to continue [the] vigil in the temple of biomedical science that we have had to endure so long. In another sense, however, it presents an enormous challenge, because it means a full acceptance of responsibility; we must find all the main resources for caring within ourselves."2
Tom Kitwood, British psychologist, 19371998
The infatuation with technology makes us forget to do such simple preventive things to protect our brains from cognitive loss as wearing a bicycle helmet, eating healthy, exercising, or ensuring pure public drinking water without toxins like lead, arsenic, methylmercury, and PCBs, which damage brain tissue, or providing all children with access to the nutrients that the brain needs to grow and develop. It also persuades our lawmakers to invest disproportionately in the search for the cure, when really our resources would be much better off invested in building communities that can help families care for the large number of aging persons in the twenty-first century.
WRITING THE NEW STORY OF BRAIN AGING
As the British author Philip Pullman says, stories may not be the best medicine, but they are nutritious and sustaining.3 They feed the mind with information and the heart with hope and strength. Nature and medical science together can do a great deal to help our bodies and minds heal themselves, but having a better story in which to frame our inevitable mental and physical aging can give us the nourishment that sustains us as we grow older.
QUOTE TO PONDER
"A good story, perhaps, is essential to a sense of self-worth"
Robert Fulford, journalist
And so, what it comes down to is this: Would you rather be part of Frank's story or Fran's? Would you prefer a traditional clinical encounter like Frank's in which you are given a terminal disease label, told that a cure does not exist, and routed into the "find a cure" track of biological research? Or would you rather be in Fran's position: having your suffering recognized and honored without bearing the albatross of an Alzheimer's label; being offered an opportunity to participate in a community service research study in which you would contribute to your community and to subsequent generations of kids?
Which story would you rather tell for yourself?
The charge of this book is to move us past the current myth of Alzheimer'sthe story that shapes the reality of so many who are agingand the best time to start is now. So where does the change begin? It starts with you. As William James once wrote, human beings, by changing the inner attitudes of their minds, can change the outer aspects of their lives. Language is the tool we can use to activate a new story for brain aging. To think differently, we must speak differently.
QUOTE TO PONDER
"If we spoke a different language, we would perceive a somewhat different world."
What follows are small, subtle, but important modifications we can make in our everyday speech and thought that can help us rise above the terror, fear, and despairing metaphors of the Alzheimer's myth and manifest a better future for ourselves. I expect that many of these modifications will look peculiar upon first glance. But when you are finished with The Myth of Alzheimer's, I hope you can return to them with your enriched perspective, and that this new language of brain aging can begin to enter into your self-understanding and into the conversations you have with others.
AD is a brain disease Brain aging is variable
We will learn that Alzheimer's is not a specific brain disease. It can not be diagnosed definitively in life or death nor does it have one basic defining pathological feature. Alzheimer's disease as a term for brain aging is a misnomer that militarizes our understanding of our bodies, causes us to denigrate and exclude those with the "disease," and also does grave injustice to Dr. Alois Alzheimer, who, despite never really believing that the condition he observed in his first patient, Auguste D., should be distinguished as a separate disease entity, now has his name attached to one of humanity's most dreaded ailments.
A humanistic, ecological framework of brain aging acknowledges the hardships and challenges of old age, while enabling us to avoid the stigmaof a mental illness label. Instead of using "mythical" language and talking about a "mind-wasting" disease that "steals the selfhood" of our loved ones, and fighting a valiant "war against Alzheimer's" in search of a biological fix, we can use words like personhood, integrity, and dignity to refer to those who are aging, and words like balance, quality of life, responsibility for future generations, community, prevention, and conservation to reframe our individual and cultural priorities.4 Such language can lead us away from the notion that the individual brain (or genome) is a site of a war that can be won, and toward a consideration of population health that respects the frailty and limits of human life and places a greater emphasis on preventing and caring for cognitive loss rather than "fixing" it. By thinking about Alzheimer's as a molecular disease at the end of life, we are only seeing the puddles of cognitive aging and ignoring the rainstorm that occurs throughout life. We must look at brain aging holistically, as a process that occurs from womb to tomb, so that we can see from the vantage of youth the gathering clouds of cognitive decline and protect ourselves from the hard rain that falls on all of us as we age.
AD ravages the brain Brain aging creates age-associated cognitive challenges
Our militarized understanding of AD causes us to see brain aging as a singular disease that ravages our minds, which is a scientific falsehood. The concept of age-associated cognitive challenges acknowledges the biological complexity and personal hardships of cognitive dysfunction, but frames brain aging (and caregiving) as a demanding but nonetheless stimulating undertaking that poses "challenges" to individuals and families. One succumbs to a "disease," but can rise to a "challenge" and gain wisdom, such that being labeled becomes an opportunity to learn, grow, and give back rather than a form of public condemnation. In this framework, suffering can be an opportunity for personal transformation in the face of a natural process rather than an inexorable struggle against a villainous adversary. I am actively trying to integrate this concept into the stories of my patients.
AD leads to a loss of self Brain aging creates a change in self
We owe it to those who have aging brains not to reduce their humanity to one organ. All of us constantly change across our life span, and the latestages of brain aging are part of that continuum. As one patient, an eighty-year-old woman diagnosed with probable Alzheimer's disease, said, "I'm fine ... this must be normal, I guess, for my age."5 Using a new metaphor can help us see the person in Alzheimer's rather than seeing Alzheimer's in the person. Such a view also highlights the important wisdom that we are not solitary selves. Our very personhood is always evolving and depends on our relationships with other people. As relationships evolve because of memory loss, they have the potential to become richer and deeper rather than poorer and shallower.
As it is now, people shun those with dementia. We warehouse our elderly in homes and further distance them with stigmatizing labels that treat them as anything but normal. In fact, a big problem in long-term-care facilities is that the cognitively healthy actively avoid the cognitively impaired. When we can face our future selves in those who are unfortunate enough to age neurologically faster than us, and summon up the strength to devote ourselves to caring for them and see them as aging human beings representing the human condition rather than diseased victims, we can come to a point of enhanced self-awareness about our development. Relating to individuals with memory problems can open up deeper relationships and can foster our own personal growth. It can also solidify and validate relationships at the end of life and enable us to celebrate the interdependency that we are blessed with as families.
Fighting a war on Alzheimer's Accepting and adapting to our finitude
We are not at war with our aging brains and it is dangerous and deluded to think that there is a quick fix just around the corner. It is much better to strip away the adversarial metaphors of the AD myth and begin to accept and embrace our mortality as best we can. Doing so can enrich the time we spend with loved ones and can enable us to achieve more vibrant and fulfilling lives. We can still hope for future treatments for brain aging without making our loved ones "victims" in a "war."
Money should be spent on basic research on brain aging, but just how much should be judged by realistic understanding of the priorities that face us in the world today, and measured against other competing health priorities including caregiving and prevention. Besides lessening the need for control and conquest that defines Western medicine, an ecological perspective can place greater emphasis on prevention and public-health interventionsand less on wasteful interventions at the end of life. It can also attune us to the resources our culture offers to assuage the death and dying process, namely, assisted-living facilities and hospice care.
My dad has Alzheimer's My dad has what people used to call "Alzheimer's"
We know that no one ever "has" Alzheimer's, and that the label carries a severe social stigma. The old framework of AD is scientifically imprecise and socially harmful to our loved ones, and thus we should calibrate the language that we use with the scientific knowledge that we have. By making the choice not to allow yourself (or your loved one) to be brought into the medicalized myth of AD you can preserve your humanity, age with greater dignity, and add quality to your later years. Alzheimer's disease need not enter your household if you don't wish it to, and adding a qualifier ("My dad has what people used to call AD," "My mom has probable Alzheimer's," "I have so-called Alzheimer's") can distance the person you're talking about from the sterilizing generality of the disease framework.
Alzheimer's is a slow death Aging persons can still be vital contributors
Aging is a project, a work of existential art, a story that one continues to write until one can write it no moreit does not end when one is diagnosed with Alzheimer's by a doctor. The stigma of AD is powerful. But it should not restrict persons whose brains are aging from finding meaningful roles for themselves.
In Cleveland, as you will learn, persons with memory challenges and even AD diagnoses are participating in programs with children. Brain aging changes a personsome more than othersbut it does not remove them entirely from society. In fact, those with dementia can still give back to their communities. There is vigor in aging. There is life to be found in the process of dying.
The anthropologist Emily Martin has written that many individual voices working together can challenge the hegemony of medical categories and produce "a resounding chorus."6 By committing to a new language of brain aging, we can transcend the dominant Alzheimer's myth and intervene in our conceptions of body and self in a more honest and humane way. If all of us speak and think differently about brain aging, mortality,and caring for our loved ones, we can begin to jointly author a new cultural narrative that can shape the way we age in the twenty-first century.
A man is always a teller of tales, he lives surrounded by his stories and the stories of others, he sees everything that happens to him through them; and he tries to live his life as if he were telling a story.
I am already transforming the language I use in my own practice and integrating the new framework I have offered with increasing success so far. I know that how we think and speak about dementia will be crucially important in determining how we care for persons who have aging brains, not to mention how we all care about our own brains and the brains of our younger generations. Changing the story of AD, and being mindful of the language we use to understand brain aging, will remove the stigma from aging and can improve the quality of our later years.
Together we can begin to shift our view of AD.
And changing the story starts with you.
Whatever you do, or dream you can, begin it. Boldness has genius and power and magic in it.
JOHANN WOLFGANG VON GOETHE
THE MYTH OF ALZHEIMER'S. Copyright © 2008 by Peter J. Whitehouse, M.D., Ph.D. with Daniel George, M.Sc. All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission except in the case of brief quotations embodied in critical articles or reviews. For information, address St. Martin's Press, 175 Fifth Avenue, New York, N.Y. 10010.