Table of Contents
|Pt. I||Early Stage|
|1||I Have Lost Myself||11|
|3||The God Who Forgot and the Man Who Could Not||44|
|5||Irrespective of Age||72|
|6||A Most Loving Brother||86|
|Pt. II||Middle Stage|
|7||Fumbling for the Name of My Wife||101|
|8||Back to Birth||112|
|9||National Institute of Alzheimer's||132|
|10||Ten Thousand Feet, at Ten O'Clock at Night||148|
|11||A World of Struldbruggs||162|
|12||Humanize the Mouse||178|
|13||We Hope to Radio Back to Earth Images of Beauty Never Seen||192|
|Pt. III||End Stage|
|15||One Thousand Subtractions||216|
|16||Things to Avoid||228|
|17||The Mice Are Smarter||242|
|Resources for Patients and Families||261|
Interviews & EssaysAn Exclusive Interview with David Shenk
Barnes & Noble.com: How did you end up writing about Alzheimer's disease?
David Shenk: I'm not exactly sure. With no direct family experience, I'd never given it more than a passing (conscious) thought until a few years ago. Then, over a period of a few months, I happened to read a few articles and to overhear one particularly poignant conversation in a neighborhood restaurant. It was about a woman in her 50s who was in the middle stages of the disease. She was still living at home and her husband was taking care of her, but she no longer knew who he was. I was in tears when I left the restaurant. I did some more reading, and before I realized what was happening, I had become haunted by Alzheimer's. Though I was only in my early 30s, I couldn't shake my fear of, or fascination with, the disease.
As I dug further and further into the available literature, I was astonished to realize that the book I was really looking for didn't exist. No one had yet written a full-scale literary biography of this very important disease. So I thought I'd give it a shot. I dug into the ancient history of senility, started interviewing sufferers and caregivers wherever I could find them, and tracked down the scientists who are doggedly pursuing a cure.
Now that it's all over, I think the real reason I wrote the book was so that I wouldn't get the disease -- as a totem to ward it off. But of course I'm as likely to get Alzheimer's as anyone else. No one is immune.
B&N.com: In your book, you document the intense rise in interest in Alzheimer's over the last several years. To what do you attribute our heightened awareness of this disease?
DS: Senile dementia is as old as humanity, but it was a pretty rare event until very recently -- simply because not that many people lived long enough to be at risk. Now suddenly we're living much longer lives -- the life expectancy in industrialized nations has nearly doubled in the last 100 years -- and we're having to face the unexpected consequences of longevity.
Everyone knows about Alzheimer's now because it's all around us. In the 1970s, just a few hundred thousand Americans had the disease; now it's approaching 5 million, and that figure will explode again as the baby boomers start to succumb over the next 20 years. In a very short timespan, Alzheimer's has gone from a relatively obscure personal tragedy to one of the most costly and devastating social problems of our time. If scientists don't come up with an effective treatment soon, the Alzheimer's epidemic is going to have an almost unimaginable impact on society.
B&N.com: In The Forgetting, you frequently make use of quotes from literature, highlighting the fact that Alzheimer's has really permeated many aspects of society and culture, although we hadn't realized it. You use case studies to show that the disease has been around for ages, but we just didn't know what to call it before. Does having a name for the disease make it any easier for either patients or scientists to grasp?
DS: It's not so much that we didn't know what to call it, but that we didn't really consider it a disease until pretty recently. The observation that some very old people start to lose their memory and then very slowly fade into oblivion goes back at least 5,000 years. But it was accepted as a natural part of the life cycle. Even in the late 19th century, when Ralph Waldo Emerson slowly lost his grip on his memory and his other spectacular intellectual abilities, none of his contemporaries -- including his own doctor son -- considered his condition a disease. Losing your faculties was just an unfortunate part of getting old.
We don't think that way anymore, mainly because we have so many millions of examples of people getting very old and not losing their faculties. We know that it's possible to age gracefully and avoid progressive mental decline. So we have decided as a culture that senility is not an acceptable part of getting old. It is a disease, something we have a responsibility to fight.
B&N.com: Your book is as much about the human side of this disease as it is about the history of Alzheimer's and the race for a cure. How did you conduct your research for the human side of the story?
DS: Well, I climbed into a lot of people's lives. For a few years I followed a support group of people in the early stages of the disease. I interviewed family caregivers, read their journals, and listened to the discussions they had with one another. I consulted with the Alzheimer's professionals who evaluate and counsel people.
I soaked up as much as I could, both so that I could relay many of the engaging stories and so that I could synthesize some observational truths about the experience and meaning of the disease. A lot of my work was listening to these tragic stories and then closing my eyes and imagining myself in these people's shoes. Then I tried to put those feelings in words.
B&N.com: You comment that "we pursue longevity, as individuals and as a species, and we do so without apology." The implications of this pursuit are clear -- more people living longer than ever, thus, more people developing Alzheimer's and many other terrible diseases. And things will only get worse, from a statistical standpoint. Do you think that raising awareness about Alzheimer's will help us be better prepared, as a society, to deal with the consequences in years to come?
DS: Absolutely. We're going to have to face the challenges regardless, so the sooner we equip ourselves the better. Facing the emerging epidemic of Alzheimer's head-on will also help us get ready for some of the other great challenges associated with our aging society.
B&N.com: As you point out, rehabilitation therapies for Alzheimer's patients are more or less nonexistent. Are there any rehabilitation programs out there like the one Morris Friedell suggests in The Forgetting?
DS: Not that I know of, but it's inevitable that as more and more people are diagnosed with the disease in the very earliest stages, the demand will grow for a more sophisticated human response. The most intensive efforts right now are in the science of pursuing a cure. But if researchers don't come up with something very soon, there's going to have to be some renewed attention paid to the challenge of living with this disease.
B&N.com: If Dale Shenck's discovery of the possible vaccine AN 1792 was the beginning of the end, where are we now? How has the research progressed?
DS: That vaccine is currently being tested in humans, along with a few other very promising drugs. So there is hope. But we really won't know for a few years whether this next wave of drugs will have much of an effect. In the meantime, we've got to raise as much support as possible for continued research.
B&N.com: Ultimately, it was the stories of regular people suffering from Alzheimer's that remained with me when I put down this book, and I imagine it must have been the same for you. Have you managed to stay abreast of the progress of any of the people you depict or would that be too painful to bear?
DS: It is difficult, because even with recent scientific advances, there isn't much hope for those already well into the disease. Any medical breakthrough will almost certainly be too late for them. I do stay in touch with some of the folks I've come to know, and I offer whatever information and moral support I can. For a lot of the caregivers, it means a lot to them to know that they are a part of something larger than their personal tragedy.
Reading Group Guide
1. What is the difference between a healthy brain and a sick one?
2. What comparisons might be made between early childhood development and Alzheimer’s?
3. By what processes—historic, scientific, semantic, cultural—have certain forms of dementia come to be known as Alzheimer’s?
4. By holding the story of Ralph Waldo Emerson’s mental decline in a light cast by the story of the molecular biology community’s efforts to combat Alzheimer’s, Shenk’s prologue illustrates the principal juxtaposition that frames The Forgetting. And by including in that prologue not only an excerpt from Emerson’s poem “Brahma” but a reference to the Barbara Walters/Monica Lewinsky interview that coincided with the keynote address of the Molecular Mechanisms in Alzheimer’s Disease conference, Shenk prepares his reader for the broad scope of the rest of his book, a book as likely to quote from Plato or Shakespeare as to refer to The New England Journal of Medicine and gaze at William de Kooning’s paintings. Why do you suppose Shenk elected to work with such a broad canvas?
5. Plato "insisted that those suffering from 'the influence of extreme old age' should be excused from the commission of the crimes of sacrilege, treachery, and treason." Keeping in mind that Plato was talking about people suffering the influence of old age, but keeping in mind as well that the onset of Alzheimer's is gradual and often undiagnosed, do you feel that old age alone should be a mitigating factor in any other crimes? Would you take this a step further and argue that society should make a legal distinction for elderlypeople, jut as it does for juveniles?
6. "We are the sum of our memories. Everything we know, everything we perceive, every movement we make is shaped by them." Despite the truth of Shenk's statement, most people go through their daily lives entirely unmindful, if not unaware, of the role played by memory in their behavior. Try to articulate the ways in which your memories have made you what and who you are.
7. Short of medical treatment, what options would you like to see available for people who learn that they have early Alzheimer's? How would you plan for your future and the future of you family if you were to become one of those people?
8. Shenk writes of Alzheimer's patients and their families struggling to create meaning out of their loss. Do you think that such meaning exists? Do you, too, desire to find meaning in suffering?
9. Should the government continue to allow Alzheimer's patients to give away all assets to their children in order to qualify for government-sponsored care?
10. Nonfiction books can be as suspenseful as novels. Discuss the ways in which Shenk achieves suspense in The Forgetting.
11. Are you encouraged or discouraged by the advances that have been made in our understanding of Alzheimer's over the past century?
12. Many of us are caregivers to Alzheimer's patients. Discuss Shenk's proposal that "the caregiver's challenge is to escape the medical confines of disease and to assemble a new humanity."