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‘THE FORGETTING: Alzheimerʼs Portrait of an Epidemic’

2003; Wolters Kluwer; Volume: 25; Issue: 8 Linguagem: Inglês

10.1097/01.cot.0000294209.61854.50

1548-4688

David Goldblatt,

Aging, Elder Care, and Social Issues

By David Shenk, New York City, Anchor Books Division of Random House, Paperback, 304 pages, $13.95 “I conceived of a book,” says the author of The Forgetting, “that might, on the one hand, catalogue the horrors of Alzheimer's, and on the other, relay the hopeful story of the race to cure the disease.” Instead, David Shenk eventually “realized that the story of Alzheimer's is in some ways exactly the opposite of my original premise: It is a condition specific to humans that, like nothing else, acquaints us with life's richness by ever so gradually drawing down the curtains.” Then he makes an accusation: It is “modern science [that has] reduced…this poignancy…to a plain horror, an utterly inhuman experience.” That indictment—shocking to a doctor who imagines he has acquired some understanding of the tools and aims of science—comes at the end of the book, which is organized in a straightforward, three-part chronology: Early Stage, Middle Stage, End Stage. Or is it? Intricate Tapestry At the end of the book is a list of people that includes Emerson, Alzheimer and Kraepelin, Reagan, King Lear, Jonathan Swift, Willem de Kooning, and Frederick Law Olmsted. These famous people who had the disease provide the warp on which Shenk's work has been woven. Shot through the fabric of the text are “soliloquies”—quotations from patients and caregivers famous only to their families and friends. Shenk's words are often aphoristic but the soliloquies produce the strongest emotional responses in the reader. The completed tapestry reveals the care with which the author's threads have been spun and the deliberate intricacy with which they have been “pleached.” That word always reminds me of Ralph Waldo Emerson and my 11th grade English class in Shaker Heights High School, where I readily memorized Emerson's poem Days (“I, in my pleached garden…”). I am thankful I can still recite it, nearly 60 years later. The Emersonian word comes to mind, because, in an interwoven account of the great Transcendentalist's slow unraveling, Emerson becomes the prime example of Alzheimer's disease in The Forgetting. The Fragility of Memory The inability to remember anything new happens progressively to millions of persons, the incidence increasing with advancing age. In a poem, Youth and Age, E.B. White wrote: “This is what age must learn about: The ABC of dying. The going, yet not going, The loving and leaving, And the unbearable knowing and knowing.” Shenk discusses White's rapid decline into some form of dementia, preceded by a long period of anxiety over losing his faculties. His family considered him a hypochondriac. Fourteen years before his death, he wrote to me, “My head is no good for writing any more. I think my psyche is bent.”1 He attributed his problem, perhaps correctly, to a minor car accident. At some point—hard to say when—his worries became reality. Ironically, “going, yet not going” had superseded “the unbearable knowing.” Big ideas are what drive the author of this book. The strictures placed on thinking about senility when it was no longer regarded as a natural stage of life and acquired the label of a disease concern him. The social and political implications of identifying a disease concern him. The late-life dementia of Jonathan Swift provides an example. Swift's detractors, who included Thackeray and Samuel Johnson, labeled his condition a “full-fledged, violent ‘lunacy’ that had always been lurking in his personality. [They] sought to misappropriate the symptoms of dementia for their own purposes. History reveals their cynicism, and connects them morally with every other soul who…contorts a case of senility into some general impugning of the victim's character.” With the disease model of Alzheimer's now firmly installed, the caregiver must “struggle to look through the disease and recognize the person inside.” That concerns Shenk most of all. The ideas I found hardest to grasp are those of evolutionary biologists about how modern medicine is modifying “the intrinsic mortality signature of human beings.” Shenk's thoughts about research driven by the pharmaceutical industry and secretive science are more familiar, and of more concern to me than finding ways to lengthen human life. A critically important idea about Alzheimer's is that it is a common cause of dementia in the senium—not just a rare presenile dementia, as Alzheimer believed.FigureShenk tells how Meta Neumann and her husband, Robert Cohn, working with the brain collection at St. Elizabeth's Hospital in Washington, DC, showed that plaques and tangles typical of Alzheimer's were prevalent in demented persons in the older age groups. Senility was a disease, not just a stage of life. Shenk sees limitations in that view, but he sees its importance as well. The psychiatric community of the 1950s, Shenk tells us, was not ready for a shift in thinking. “The confusion endured.” Some Untouched Meta Neumann died at age 100. On the evening before her death, she sang to her husband: a song from Patience and two love-songs in German. Robert Cohn, who is about to turn 94, is a Professor of Neurology and Clinical Neurophysiology at Howard University. At this year's annual meeting of the American Association for the Advancement of Science, he presented his “conclusion that the EEG is not a vectored neurophysiological function, but is the result of metabolic processing.” In a recent Mayo Clinic study of 111 people age 90 to 100, which focused on mild cognitive impairment, 56 were normal, 13 showed mild cognitive impairment, and 42 were demented.2 Meta and Robert, my mentors and hosts when I was in the Navy and my friends of more than 40 years, persuade me more strongly than the Mayo statistics that, even in the “oldest old,” dementia is not inevitable. In further dust-jacket praise for The Forgetting, John Bayley, who has written movingly about Alzheimer's disease as it afflicted his late wife, Iris Murdoch, calls the book “the definitive work on Alzheimer's.” But to be definitive was far from Shenk's intent, I am sure. The book is slim, and its lines are double-spaced. What the author does not say, even between the lines, is, I believe, as deliberate as what he does say. The words “physician-assisted suicide” and “euthanasia” are not to be found. There is nothing about physical and financial abuse of aged persons with dementia—another epidemic. This is a focused work, not a compendium. Achieving Acceptance Morris Friedell is a sociologist with Alzheimer's disease3 whose interactions with Shenk are plaited into this book. In 2000, at a World Alzheimer Congress held at the hotel outside of which Ronald Reagan was shot, Shenk met Friedell, with whom he had corresponded for about a year. They talked at length about Friedell's understanding of his own disease and his ideas about rehabilitating people with dementia. “I repeatedly encountered a frisson of realization that in several years of research, the most thought-provoking discussions I'd had about Alzheimer's were with one of its victims,” Shenk wrote. Shenk tells us he “migrated over several years' time from morbid fascination and dread of Alzheimer's to a new kind of peace and reconciliation.” The author's journey is one the individual reader may or may not make. Neither my patients nor my time spent in nursing homes as a visitor and ombudsman, nor what I have experienced in my own family or my anxious preoccupation with my own age-associated memory impairment4 has brought me peace. Nevertheless, I am grateful to David Shenk for his insights. I shall try to keep them in mind.