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Summary
Summary
A definitive and compelling book on one of today's most prevalent illnesses.
In 2020, an estimated 5.8 million Americans had Alzheimer's, and more than half a million died because of the disease and its devastating complications. 16 million caregivers are responsible for paying as much as half of the $226 billion annual costs of their care. As more people live beyond their seventies and eighties, the number of patients will rise to an estimated 13.8 million by 2050.
Part case studies, part meditation on the past, present and future of the disease, The Problem of Alzheimer's traces Alzheimer's from its beginnings to its recognition as a crisis. While it is an unambiguous account of decades of missed opportunities and our health care systems' failures to take action, it tells the story of the biomedical breakthroughs that may allow Alzheimer's to finally be prevented and treated by medicine and also presents an argument for how we can live with dementia: the ways patients can reclaim their autonomy and redefine their sense of self, how families can support their loved ones, and the innovative reforms we can make as a society that would give caregivers and patients better quality of life.
Rich in science, history, and characters, The Problem of Alzheimer's takes us inside laboratories, patients' homes, caregivers' support groups, progressive care communities, and Jason Karlawish's own practice at the Penn Memory Center.
Author Notes
JASON KARLAWISH is a physician and writer. He researches and writes about issues at the intersections of bioethics, aging, and the neurosciences. He is the author of the novel Open Wound: The Tragic Obsession of Dr. William Beaumont and his essays have appeared in The New York Times , The Washington Post, Forbes and the Philadelphia Inquirer . He is a Professor of Medicine, Medical Ethics and Health Policy, and Neurology at the University of Pennsylvania and Co-Director of the Penn Memory Center, where he cares for patients. He lives in Philadelphia.
Reviews (4)
Publisher's Weekly Review
Karlawish (Open Wound), a physician and researcher at the Penn Memory Center, traces in this comprehensive study the history of Alzheimer's from a rare disease to a modern crisis. In four parts, Karlawish first defines Alzheimer's, which is no small feat, and he shares his own difficulties as a doctor in explaining it to patients and their families. Part two reveals "the tragedy of science and medicine colliding with politics and culture," beginning with a look at psychiatrist Alois Alzheimer, the "unwitting revolutionary" who discovered the disease in 1907, and tracing the disease's history up to the close of the 20th century; after the last of Alzheimer's fellow specialists died in the 1940s, the disease remained only of interest to a rare few neurologists until reentering the public consciousness. Parts three and four offer ways to address the crisis across fields: Karlawish makes a convincing case to view Alzheimer's as a "humanitarian problem," and calls on the use of technology that can "track, remind, alarm, help, and connect" patients; urges financial institutions to flag out-of-character transactions that can "sound an alarm"; and suggests nursing homes should look less like hospitals. Karlawish presents tough information and hard questions with emotional tact. This is a real eye-opener. Agent: David McCormick, McCormick Literary. (Feb.)
Kirkus Review
A professor of medicine at the University of Pennsylvania delivers a lucid, opinionated history of the science, politics, and care involved in the fight against this century's most problematic disease. The first symptom of Alzheimer's is usually difficulty with memory, often recognized by a spouse, friend, or caregiver. Over years, memory deteriorates, and victims can no longer perform simple tasks such as paying bills or taking medicine. As the disease worsens, they become apathetic or delusional; lose the ability to dress, feed, and clean themselves; become bedridden and depressed; and often die from complications. Caring for an affected spouse or parent is a crushing experience, often bankrupting all but the wealthy because medical insurance and Medicare pay for medicine and doctor visits but not "custodial care," which is estimated at as many as 170 hours per month. As Karlawish shows, Alzheimer's usually causes more suffering for the caregiver than the patient. Until the 1970s, most doctors explained that this was "senility," a consequence of aging beyond the scope of medical science. Eventually, researchers realized they were dealing with an epidemic of brain disease. At the same time, patient advocacy groups formed to lobby Congress, which was amenable to providing funding. Formerly, doctors diagnosed Alzheimer's by examining the brain after death. Observing and testing living patients was a major advance. In 2012, the FDA approved an ingenious brain scan that illuminates the areas damaged by Alzheimer's. Sadly, Medicare won't pay for the $3,000 test, which doesn't directly help patients because no good treatment exists (several drugs purport to slow its progress, but many experts believe they're worthless). A medical expert with a page-turning style, Karlawish is mostly successful in conveying optimism. Hopeful drugs are in the research pipeline, but even better news is that physicians, institutions, and advocacy organizations are adopting more imaginative and humane programs to care for victims both before and after their disease becomes crippling. An outstanding primer that readers should put into the hands of their doctors. Copyright (c) Kirkus Reviews, used with permission.
Booklist Review
Today about 5.8--million Americans live with Alzheimer's, which can cause dementia and problems with such day-to-day activities as venturing outside the home or being able to use the bathroom on one's own. Karlawish, a professor of medicine at the University of Pennsylvania and codirector of the Penn Memory Center, covers the history of diagnosis and treatment and shares his own experiences. During the "clock-draw test," he asks a patient to fill in the face and show the time as 12:55. A 71-year-old retired art teacher creates a jumble of misplaced numbers and lines. Patients exhibit confounding changes in behavior and mood and forget all kinds of things. Often, it's the caregiver who is sad and in despair. One laments that it's all "pills and bills." Americans who reach their eighties enter the age of dementia. and it can strike anyone, from U.S. presidents (Ronald Reagan) to the spouses of Supreme Court justices (that of Sandra Day O'Connor). There's no cure for Alzheimer's, but Karlawish reassures readers that it's possible to help patients preserve their comfort and dignity.
Library Journal Review
As the number of older people in the United States grows, so does Alzheimer's disease. In 2020, around 5.8 million Americans lived with it, and it is estimated that by 2025, around 13.8 million will. It is often devastating to those who suffer from it, their families (many of whom become their caregivers and may also end up paying for their care), as well as to the society and economy. In this careful and caring new look at the issue, physician Karlawish (Co-Director, Penn Memory Center) explores the history of the disease and its treatments; contemporary efforts to determine its multitudinous causes and manifestations and how to treat them, either pharmaceutically or therapeutically; and how governmental and other health programs can better respond. Ever since Alois Alzheimer conducted his revolutionary studies of the disease over 100 years ago, no cures have been found, current treatment and medications are often ineffective and inadequate, and even exact causes have been hard to pin down. VERDICT As science and medicine continue to study Alzheimer's, Karlawish suggests, advances in technology, assisted living arrangements, and other lifestyle changes can be used to help people live well with the disease. A must-read on an important subject.--Marcia G. Welsh, formerly with Dartmouth Coll. Lib., Hanover, NH
Table of Contents
Introduction: The Disease of the Century | p. 1 |
Part 1 Alzheimer's Unbound | |
1 A Peculiar Disease of the Cerebral Cortex | p. 9 |
2 No One Says No to Len Kurland | p. 23 |
3 Accurate but Not Presumptuous | p. 32 |
4 The Olympics of Pharmacokinetics | p. 40 |
5 The Republic of Alzheimer's Disease | p. 55 |
6 A Young Man in a Hurry | p. 64 |
7 How Do You Cast a Broken Brain? | p. 70 |
Part 2 The Birth of Alzheimer's Disease | |
8 The Old Woman in the Tower | p. 85 |
9 Alois Alzheimer: An Unwitting Revolutionary | p. 92 |
10 Oblivion, or War and Madness | p. 101 |
11 The Essay Heard Round the World | p. 110 |
12 A Self-Help Group for the Self-Made Man | p. 119 |
13 A Crisis in the Family | p. 128 |
14 The Last Casualties of the Cold War | p. 136 |
15 Hope in a Pill | p. 148 |
Part 3 Living Well in the House of Alzheimer's | |
16 The Extraordinary Ordinary | p. 161 |
17 A Correction | p. 172 |
18 Discernment | p. 181 |
19 Some Things to Watch Over Us | p. 192 |
20 Not (Legally) Dead Yet | p. 198 |
21 Targeting Amyloid | p. 207 |
22 Hope in a Plan | p. 214 |
Part 4 A Humanitarian Problem | |
23 Something Must Be Working | p. 233 |
24 Existential Dread | p. 243 |
25 Caring for Each Other | p. 249 |
26 The Worlds We Create | p. 260 |
27 The Worlds We End | p. 278 |
Acknowledgments | p. 291 |
Notes | p. 293 |
Glossary | p. 307 |
Selected Bibliography | p. 309 |
Index | p. 315 |