Alzheimer disease has become an enormous public health problem, affecting a major segment of our aging population and their caregivers. The financial cost to society is staggering, and the social and emotional tolls of the disease are immeasurable. With baby boomers entering the age of increased risk, and better treatments for other diseases that affect the elderly, an increasing number of people will be developing Alzheimer disease over the next few decades. The Forgetting – Alzheimer's: Portrait of an Epidemic, by David Shenk, was written in layman's terms to paint a picture depicting the problems of Alzheimer disease. Mr. Shenk, the author of Data Smog, a book about technology's cultural impact, has written for Harper's, Wired, The New Republic, The New Yorker, and is an occasional commentator for National Public Radio's All Things Considered.
In The Forgetting, Mr. Shenk effectively conveys the enormity of the problems of Alzheimer disease by describing issues from a variety of viewpoints. The book includes a historical perspective outlining our growing understanding of the relationship between pathological changes that develop in the aging brain and the cognitive symptoms that Alzheimer disease patients develop. He reviews the epidemiology of the disease and advances that have been made in research directed towards finding a cure for the disease.
Throughout the book, Mr. Shenk interweaves short narratives about famous historical figures who might have the disease or were, in fact, diagnosed with it – including Jonathan Swift, Frederick Law Olmstead, Ronald Reagan, and Willem De Kooning, The book also includes short notes and interesting anecdotes written by caregivers. These profiles of famous individuals affected with Alzheimer disease round out the book.
The author writes, for example, that Ralph Waldo Emerson may have had Alzheimer disease. He refers to Mr. Emerson's public displays of memory loss in lectures where he would skip or repeat sentences, reread entire pages, and lose his place. Mr. Shenk claims that while Alzheimer disease was not diagnosed in Mr. Emerson – the disease had not yet been identified as such by Alois Alzheimer – “We do know from the voluminous record of the details of his life that Emerson had a slow, progressive dementia that in every way appears consistent with the course of typical Alzheimer's disease.”
THE HISTORY OF THE DISEASE
The Forgetting is organized into three sections. The first (Early Stage) covers the early stages of our understanding of cognition and Alzheimer disease. It includes information on the history and epidemiology of Alzheimer disease. This section includes a summary of Alois Alzheimer's early interactions with Frau Auguste D., the initial case described with Alzheimer disease.
The middle section (Middle Stage) focuses on more recent breakthroughs in our understanding of Alzheimer disease and how this knowledge enhances our potential to develop meaningful treatments or preventive measures to combat the disease.
The last section (End Stage) features evolving therapies for Alzheimer disease, including efforts to develop a vaccine, which is now in clinical trials. Mr. Shenk provides a behind-the-scenes look at the oft-time brutal competition that has emerged among scientists as they pursue a treatment worth billions of dollars.
Describing the World Alzheimer Congress in 2000 – in which Dale Schenk of Elan Corporation discussed his research on a vaccine – the author observes that “amidst all the data and ideas the disease was nowhere to be found.”
“Science had fragmented it into almost unrecognizable shard – cholinergic transmitters, vascular risk factors, nicotinic receptors, aspartyl proteases, synaptic plasticity in mice, and on and on. The crowd had the patina of a large cohesive community, but was really a collection of superbly focused specialists – most of whom barely knew how to talk to anyone outside their constricted microfield. In the name of science, good science, they were far too close to the trees to see the forest.”
The book is successful in its mission to give the reader an understanding of Alzheimer disease from different perspectives. It easily holds the readers' attention. Short anecdotes about early scientific investigators (Alois Alzheimer, Emil Kraepelin, Franz Nissl, Meta Neumann, Sigmund Freud and others) heightens the entertainment value of the book for those who are familiar with these names. I particularly enjoyed Mr. Shenk's inclusion of tales from an Alzheimer disease researcher who had early symptoms of the disease, and was struggling to find a way to rehabilitate affected individuals.
Mr. Shenk accurately conveys the notion that interactions with the affected individuals and their caregivers are often a source of inspiration or enlightenment. One positive aspect of this disabling disease is that physicians and other health care providers are moved by the profound dedication that families and caregivers show.
As an academic neurologist with a clinical and research focus on Alzheimer disease, I also found Mr. Shenk's depiction of the political issues involved in Alzheimer disease research to be on target. He notes the negative impact that political struggles may have on the ability of investigators to work together towards the common goal to alleviate disease. His implication that there is sometimes a lack of support for novel research ideas also rang a familiar bell. Despite such obstacles, Mr. Shenk accurately shares a sense of optimism in our ability to find a meaningful treatment for the disease.
He also does a clever job describing the medical aspects of the disease in a way that both professionals and nonprofessionals can understand. His relatively accurate description of the complicated medical aspects of the disease is commendable.
The book is a success. If it lacked anything, it might be wider mention of the distress caregivers go through. Most of his vignettes portrayed caregivers as managing to cope; in reality caregivers are often overwhelmed. The easy availability of support services is not discussed in depth. I would also have liked to see a description of a patient with a treatable mimicker of Alzheimer disease to highlight the notion that a confused elderly person does not always have an incurable disease; sometimes treatable conditions can cause confusion in the elderly.
In summary, The Forgetting is a captivating book that is a pleasure to recommend to a wide variety of readers. Health care workers with expertise in Alzheimer disease will enjoy the anecdotes about the early investigators and the masterful way the author describes the political and social issues. The book is also well worthwhile for health care providers and caregivers who lack expertise in the disease and want to learn more about it and the issues that families, patients, and society face. Lastly, The Forgetting is fun reading for almost anyone who is simply looking for a good book.