The Forgetting: Alzheimer's, Portrait of an Epidemic
A review by Pam Rosenthal
A brilliant and quirky new book on Alzheimer's offers food for thought on the unthinkable and a new, deeper understanding of the coming epidemic.
"Senile dementia," the doctor told us. Hospital tests had revealed no abnormalities; my mother-in-law's growing tendency to repeat a story several times in an hour was merely a regrettable, predictable aspect of aging. We shrugged: too bad she'd had to endure an MRI just to be told that she was getting older.
"Well, at least we know it's not Alzheimer's," my husband concluded. His mother was still living independently; we'd simply have to make frequent cross-country visits to help out and keep tabs on her condition.
The Family Leave Act entitles me to eight days a year paid sick time to care for an in-law. Writing "senile dementia" on the application, I rather enjoyed the words' archaic cadence, their lowercase modesty. No, it's not Alzheimer's, I told my boss. She's got a condition, not a disease.
What I've learned since then is that a physician who's still using the outmoded term "senile dementia" probably doesn't know much about Alzheimer's.
My mother-in-law's situation worsened. We spent an anxious, ill-informed year before finally receiving an Alzheimer's diagnosis from a facility specializing in the aging brain and then some fraught weeks trying to learn what the diagnosis might mean. But this time we lucked out; one evening my husband, a bookseller, brought home a prepublication copy of The Forgetting, David Shenk's compelling new book on Alzheimer's disease.
I was already familiar with Shenk's Data Smog, an informed, eminently sensible work on the information society we live in.
"Could be interesting," I said. "Let me take a look."
A chapter later two chapters later, I still didn't want to give it back. The publisher's rep sent us another copy. Gratefully, hungrily, we read it in tandem.
The Forgetting isn't a caregivers' reference. If you need one, get There's Still a Person in There, by Michael Castleman, Dolores Gallagher-Thompson and Matthew Naythons. Shenk doesn't explain durable power of attorney or the difference between a nursing home and an assisted living facility. His book doesn't contain an "experts' 10-step program for caregivers," and it won't provide the guidance through the diagnostic process that my husband and I had so sorely needed. Castleman's book, which also contains well-chosen portraits of families coping with the disease, is an unimpeachable guide. It could have saved us a lot of anxiety during the year before the Alzheimer's diagnosis, and now that we've got it on our shelves I know we'll keep consulting it.
But Shenk's wide-ranging, discursive meditation on Alzheimer's is something else: By turns science popularization and cultural history, it's written for a general audience and narrated with a storyteller's urgency. His speculations about medical research sometimes wander into futurist, Wired magazine territory, but his quirky intellectual excitement adds to, rather than detracts from, the pathos of his story. In the end, like many great storytellers, he becomes part of the story himself. For what could be more tragically human than a human mind striving to comprehend the possibility of its own dissolution?
The Forgetting spreads out all over the place, from the threat of a new epidemic, through the mechanics of human memory, to a glimpse at the world of high-end, high-stakes medical research. Shenk intersperses his commentary with first-person accounts of the loss of function. He listens in on a support group for Alzheimer's sufferers and looks back into literary history: Ralph Waldo Emerson and Jonathan Swift were probable Alzheimer's sufferers and wrote about their advancing conditions with great poignancy and insight.
Shenk isn't afraid to be fascinated by his subject, to evince wonder at the mind's awesome complexity even while chronicling its deterioration. Like Jonathan Swift, he shuttles between the very small and very big: from the molecular level at which Alzheimer's research is done to the overwhelming consequences that threaten the industrialized nations if that research doesn't pan out.
Consider the demographics. In the U.S., people over 85 are the fastest-growing segment of the population and 30 to 40 percent of people over 85 suffer from Alzheimer's. The average Alzheimer's patient lives eight years after being diagnosed, but this span will probably widen as a healthier, better-fed cohort gets the disease. One in nine baby boomers will live to be 100: All those hours on the Stairmaster could buy you 20 years of looking good, feeling fine and being totally unable to take care of yourself.
They have no Remembrance of anything but what they learned or observed in their Youth and middle Age, and even that is very imperfect ... In talking they forget the common Appellation of Things, and the Names of Persons, even of those who are their nearest Friends and Relatives.
That's how Swift's Lemuel Gulliver described the Struldbruggs, a race whose members live forever but lose their mental faculties in their 80s. Horribly prescient, Swift had witnessed an uncle's memory loss and was sure that the same thing would happen to him. It did.
"They can never amuse themselves with reading, because their Memory will not serve to carry them from the Beginning of a Sentence to the End."
Powerless to help, I watched my mother-in-law struggle to read a newspaper article, her eyes anxiously and repeatedly darting back to the top of the page. Jonathan Swift, I realized, had not only been horribly prescient about the ravages of memory loss; he'd been absolutely, horribly precise.
The medical vocabulary describes Alzheimer's as a disease of "insidious onset." Insidious is a good word for a disease that begins so slowly and stealthily "treacherously," my dictionary says. Sufferers don't forget everything at once: long-term memories (like my mother-in-law's disapproval of my easily-stained hall carpeting) may remain untouched for years.
The old memories stick because at first Alzheimer's doesn't hinder memory retrieval. Instead like Leonard in the recent film Memento the Alzheimer's sufferer can't make new memories. Here's how Shenk describes memory formation in the normal brain: "Each notable experience causes a unique set of neurons to fire in conjunction with one another. As a result, these connections become chemically more sensitive to one another so they can more easily trigger each other again. With that unique constellation of synapses, one has created a permanent physical trace of the original sensation."
A memory is a physical trace, but not like the linear procession of ones and zeros marching across my hard disk as I type this. Memory is branching, multidimensional, a dense web of association and combination. Shenk reminds us that Memory was the mother of the muses as though the arts had derived their multiplicity of techniques from her.
The normal memory is in a state of constant, imperceptible revision: Impressions are perpetually rewritten, exhaustively reworked. Old memories are durable because we've revisited and remade them every time we've experienced a related perception. They can be untrustworthy in a court of law because we've sifted and summarized them so extensively, perhaps integrating a chance resemblance or fortuitous suggestion. We even reshape them by selective forgetting, cutting back a tree here or there in order to keep the forest in view.
Sensations don't go directly or easily into the brain's long-term memory matrix. Short-term memory enables us to learn to negotiate the new and unfamiliar, juggling them until we can fit them into our permanent data store. As we get older we sometimes have to make a conscious effort to remember something new, perhaps effectively "underlining" it in our short-term memory buffer by writing it down. But for an early Alzheimer's sufferer, such efforts often fail. Malformations ("plaques and tangles") have grown within the brain's cortex, impeding the neurons' initial firing, interfering with short-term memory creation.
Still in the early stage, my mother-in-law is pretty content right now: Friendly home health aides help her with the laundry and shopping, get the mail and tell her when to take her pills. A geriatric care manager makes sure the aides arrive on schedule and that prescriptions are refilled. My husband oversees her bill paying; my adult son balances her checkbook; I replace her clothes as they wear out. It takes a village to do the work of one normal brain, but for now she likes living in the jerry-rigged village we've built at the upper tip of Manhattan. She's always wanted us to call every day and now we do. I'm not sure what my husband discusses with her, but she and I often happily revisit my home-decorating misadventures. She's lost her impatience with my blunders, and I've begun to rather cherish them.
The future will doubtless be a lot tougher. As Alzheimer's progresses slowly, over years the plaques and tangles spread and memory attenuates until, late in the second stage, identity itself is obliterated. In the final stage the brain "forgets" how to regulate basic body functions like swallowing.
"And I'm at risk for it, you know," my husband commented. "But by then," I replied much too quickly "there'll be a cure. Or ... or therapies. Something."
Researchers do talk about the possibility of a cure it'll be here in 10 years, one of them tells Shenk exultantly. Responding to the prospect of millions of octogenarian boomers wandering around on a last long strange trip, Alzheimer's research is well funded and promises rich rewards. Scientists are making progress: There are now a few drugs on the market that stimulate memory for a limited period, even as the disease continues to ravage the brain.
Shenk describes the research theory, technique and furious rivalries between contending schools of opinion in vivid, laypersons' language. He goes further as well, to speculate on the limits of the human lifespan itself.
Little-understood environmental factors aside, the reason Alzheimer's is so common nowadays is that we're beginning to live on what biologists call "manufactured time." Inherited traits that would have prevented us from reaching the age when we're most likely to reproduce have been winnowed out by natural selection. What happens to us in our later years, however, doesn't affect our chances of reproducing. And so diseases rarely seen before the 20th century have become more common as science has created new ways to keep us alive into our 80s and beyond.
Far beyond, perhaps: "I am now working on immortality," Shenk quotes a biologist interviewed in the pages of Wired. Is this for real, I asked a friend who follows these developments. Oh yes, she told me, "Immortality is their killer app." Not a bad reply, I thought: The Delphic Oracle would have relished the paradox.
But then, scientific innovation is often veiled in paradox. Wondrous improvements exaggerate intractable old problems. Longer lives remind us of ancient questions of how to live well. And high-tech solutions do little to untangle the riddles of social and family life, care and responsibility.
For some answers to these questions, Shenk looks to contemporary Alzheimer's sufferers and their families and looks back to some real and imagined forebears. Although relatively few people lived to be very old before the 20th century, aging and senility have appeared in literature and mythology since the earliest times. After the Egyptian sun god Ra created the universe and all the other gods, he became old and senile, easy prey for usurpers. The notion of body outlasting mind and identity speaks not only to our astonishment at our mixed, mysterious natures, but to our fears about the limits of love and obligation.
King Lear is of course based on ancient legend, but according to Shenk, it's only in Shakespeare's version that the king enters a senile fog. Shenk speculates that Shakespeare might have been inspired by the case, two years before "Lear" was first presented, of a wealthy courtier who began publicly losing his wits. His oldest daughter, Grace, sued to have him declared a lunatic so she could take over his possessions; his youngest daughter, Cordell, succeeded in placing the estate in the custody of a loyal friend, ensuring "that he would have the most comfortable and dignified descent possible."
Financial worries (and sometimes conflicts) will plague many families, but it's the nature of mind and memory itself that makes Alzheimer's so difficult for caregivers. Novelty stimulates the brain while redundancy numbs it. And yet, as Shenk says, "As their forgetful loved ones repeatedly stumble over the same tasks and information, caregivers must suffer through the oppressive repetition." Order and category are natural and necessary, but sometimes a caregiver must sacrifice them. This quote that Shenk found in a caregivers' listserv seems to me a small but remarkable achievement of the spirit: "I no longer scolded her but thanked her for bringing the frying pan into the bathroom. After that, life changed very much for the good."
Shenk found evidence of a more ambitious spiritual quest on the same online discussion group: One of the caregivers, Morris Friedell, had himself been diagnosed with the disease. Friedell, a sociologist, used to teach a course called "Human Dignity," examining the Holocaust and the work of authors like Martin Buber and Elie Wiesel.
Friedell is a pioneer, a sort of astronaut, part of a new class of Alzheimer's sufferers who are developing the disease in full knowledge, "diagnosed," as Shenk observes, "so early as to still be able to speak for themselves, to eloquently describe their experience, and to champion their rights." The essays personal and theoretical on Friedell's Web site (http://members.aol.com/MorrisFF/) combine a breadth of research on the brain and disability with a lifetime of study about humanity in extremis. Friedell says that in person he's not so coherent anymore, but I found his writing profoundly articulate and thought-provoking, smart, humorous, humane and helpful. Consistently inspiring and not at all "inspirational," Friedell continues, through his writing and by example, to teach the subject of "Human Dignity."
We're fortunate, these days, to have firsthand guides like Friedell, brilliant caretaker-memoirists like John Bayley (Elegy to Iris), and compassionate chroniclers like David Shenk. Of course no one will stop hoping fervently for a cure and I don't know if the lessons gained from suffering ever justify the suffering itself. Still, it wouldn't be so bad if an understanding of Alzheimer's made its way into the general culture. As perhaps it's beginning to do.
Certainly we think a lot about memory these days: Memento has a devoted cult following; a surprising number of people are attempting Proust's huge, slow meditation on memory, In Search of Lost Time. Shenk finds Alzheimer's compelling because the gradual pace of deterioration "causes us to experience life's constituent parts and understand better its resonances and quirks." Imagining death is difficult, but Alzheimer's forces us to try: "What is usually a quick flicker," Shenk writes, "we see in super slow motion, over years. It is...perhaps the most poignant of reminders of why and how human life is so extraordinary." Which, in a culture of quick fixes and killer apps, wouldn't be such a bad thing to remember.