The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It

The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It

by Jason Karlawish

Narrated by Jason Karlawish, Jonathan Todd Ross

Unabridged — 13 hours, 41 minutes

The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It

The Problem of Alzheimer's: How Science, Culture, and Politics Turned a Rare Disease into a Crisis and What We Can Do About It

by Jason Karlawish

Narrated by Jason Karlawish, Jonathan Todd Ross

Unabridged — 13 hours, 41 minutes

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Overview

A definitive and compelling book on one of today's most prevalent illnesses.
In 2019, an estimated 5.8 million Americans had Alzheimer's, and more than half a million died because of the disease and its devastating complications. Sixteen 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 2025.
Part case study, 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 system's failures to take action, this groundbreaking book 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 a better quality of life.
Rich in science, history, and unforgettable 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.

Editorial Reviews

Publishers Weekly

03/15/2021

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.)

From the Publisher

“A meticulous and deeply researched inquiry into one of the most mysterious illnesses that affects humans. Karlawish blends history and science with his effortless storytelling abilities, resulting in an elegant work.”—Siddhartha Mukherjee, New York Times bestselling author of The Emperor of All Maladies and The Gene

"How does a disease go from being a rare curiosity to become one of the most feared illnesses and major public health challenges of the 21st century? The Problem of Alzheimer’s tells the story of how Alzheimer's disease made this transition. Pulling together descriptions of substantial progress in understanding the disease’s biology, a sociological tale of disease advocacy, human egos, and adverse impacts wrought by the disease, and a recognition of the disease’s economic and public health impacts, Jason Karlawish, a distinguished Alzheimer's disease researcher and clinician, weaves together personal stories with a compelling narrative to tell a fascinating story of the medical-industrial complex, human suffering, and research progress."—Peter Rabins, co-author of The 36-Hour Day and author of Is It Alzheimer's?

"This scoping review is an engrossing and fascinating account of the tragedy of a single ubiquitous disease. A cautionary and deeply relevant tale of what is risked when science collides with politics. A cogent historical and moral account of the human condition, viewed at both a national scale and under the lens of a microscope. You will come away with a different appreciation for science, self-determination and the endless mystery of your own mind."—Rana Awdish, bestselling author of In Shock

In this careful and caring new look at the issue, physician Karlawish 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. A must-read on an important subject.” —Library Journal (starred review)

"Karlawish presents tough information and hard questions with emotional tact. This is a real eye-opener."—Publishers Weekly

“There’s no cure for Alzheimer’s, but Karlawish reassures readers that it’s possible to help patients preserve their comfort and dignity.” Booklist

"As significant for Alzheimer’s disease as Siddhartha Mukherjee’s The Emperor of All Maladies was for cancer. [Karlawish is] a highly skilled and sympathetic writer."—St. Louis Post Dispatch

"Karlawish has spent the majority of his career treating and studying Alzheimer's patients, and guiding their families. Their shared experiences are at the heart of this book. He does not shy away from exploring some of the challenging realities they have faced together, but he also incorporates his considerable clinical experience and scientific wisdom that give both practical direction and hope to this struggle. If you wonder about what is possible in terms of making a difference in treating people with Alzheimer's Disease and their families both now and within the foreseeable future, then I encourage you to read this book."—Timothy Quill, MD, Distinguished Professor of Palliative Care, University of Rochester School of Medicine

"A lucid, opinionated history of the science, politics, and care involved in the fight against this century’s most problematic disease. An outstanding primer that readers should put into the hands of their doctors."—Kirkus Reviews (starred review)

"Alzheimer's Disease is one of the greatest disasters of our time. In this lucid and important book, Jason Karlawish gives us a handle on this slippery disease, mapping out what's possible to know about it, and what mysteries remain. Dr. Karlawish is a magnificent guide through the tangles of dementia, as well as the heartache and the hope of treatment. This book might be considered a companion to Siddhartha Mukherjee's The Emperor of All Maladies — a doctor's meditation on his nemesis. In this page-turning account, Dr. Karlawish stokes our curiosity about one of humanity's greatest foes, asking us to put aside our fear in order to find out what this disease can tell us about ourselves. "—Pagan Kennedy, author of Inventology

"Jason Karlawish is a compassionate guide through this compelling and comprehensive tale of political intrigue and scientific discovery, of human suffering and medical conundrums. He deftly weaves stories of passionate scientists, political tacticians, determined families, and visionaries in care to guide us toward our communal dream – ending the pain of dementia and Alzheimer’s."—Anne Basting, PhD, author of Creative Care

“Alzheimer’s is as much a problem for scientists, policy experts, doctors and nursing assistants as it is for patients and families. Jason Karlawish’s new book makes its history clearer, its status in medicine more understandable and its humanistic and caregiving sides better appreciated. It should be read by families and practitioners who want to understand where the subject has come from and where it is headed. An important contribution!”—Arthur Kleinman author of The Soul of Care

"Jason Karlawish has written a remarkable book that weaves together insightful reflections on his decades of experience as a clinician and ethicist specializing in dementia care with a broad reading of history, politics, and culture. It provides a compelling explanation of the kind of problem we face in Alzheimer’s, a cogent critique of the ways in which the health care system fails people with dementia and their families, and a vision for how we can do better. Essential reading for anyone concerned with Alzheimer’s disease."—Jesse F. Ballenger, author of Self, Senility, and Alzheimer's Disease in Modern America.

"Quite simply, this is the best book about Alzheimer's disease I have read, and I have read most of them. I am a retired neurologist with early-stage Alzheimer's disease, so I have experience with the disease from two points of view: a neurologist who cared for many patients with Alzheimer's during my career and now a person living with early Alzheimer's...[Dr. Karlawish's] book is comprehensive yet accessible, covering the history, politics, and controversies surrounding the disease. It is thorough and it is compassionate. I recommend it to anyone who wants to understand this disease." — Daniel Gibbs, author of A Tattoo on My Brain: A Neurologist's Personal Battle Against Alzheimer's Disease

"Karlawish is well situated for gaining insights on many aspects of Alzheimer’s disease from many directions." —LitMed

"Essential reading for anyone interested in Alzheimer's." —Fabrice Gzil, Professor of Ethics at École des Hautes Études en Santé Publique and member of the French National Ethics Committee.

Library Journal

★ 02/01/2021

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

Kirkus Reviews

★ 2020-11-05
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.

Product Details

BN ID: 2940176427400
Publisher: Recorded Books, LLC
Publication date: 02/23/2021
Edition description: Unabridged
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