In his acknowledgments, David Shenk describes how he was inspired to research and, ultimately, to write about Alzheimer’s disease when he overheard in a local restaurant a conversation about a woman who no longer recognized her husband. Shenk imagined what it would be like to be that husband, and his emotional response has made what might have been a very dry scientific book about a medical problem a humane and engaging treatment of the subject.
Paradoxically, as improvements in living conditions and modern medicine have increased life expectancy in the developed world, there has been a dramatic increase in chronic disease, disability, and suffering among the general population. In industrialized countries, Alzheimer’s disease is now the fastest growing disease. Since 1975, the number of cases has increased tenfold. Shenk’s report on a conference of molecular biologists from all over the world studying Alzheimer’s disease, held in 1999, reveals the incidence of Alzheimer’s and its devastating economic impact: “Five million Americans and perhaps 15 million people worldwide now had the incurable disease, and those numbers would soon look attractive. Beginning in 2011, the first of the baby boomers would turn sixty-five and start to unravel in significant numbers. By 2050, about 15 million people in the U.S. alone would have Alzheimer’s, at an annual cost of as much as $700 billion.” (The cost is currently estimated to be $114.4 billion annually in the United States.) Alzheimer’s disease is an impending epidemic.
The disease is an incurable and unrelenting organic neurological illness that attacks the memory and mind of the victim. Most elderly people suffer a slight deterioration of memory, and some difficulty in remembering names or numbers is considered a normal consequence of growing older. Because Alzheimer’s has an insidious onset, it may be indistinguishable in the early stage from this normal memory loss and absentmindedness. Over time, however, the distinction becomes quite clear: “Suddenly, on a routine drive home from work, an intersection he has seen a thousand times is now totally unfamiliar. Or he is asking about when his son is coming back from his European vacation, and his wife says: What do you mean? We both spoke to him last night.’” Such memory lapses and moments of confusion and disorientation become increasingly frequent and difficult to ignore in the middle stages of the disease. Memories of not only specific events, such as shopping yesterday, are erased, but also general concepts (what groceries are) become lost. Patients fail to understand simple questions, lose their sense of time and self-awareness, cannot follow a conversation or recognize loved ones. They suffer from mood swings and a loss of judgment. As the disease progresses into the late stages, there is further cognitive loss and physical disabilities become worse: Patients lose their balance, become immobile, and lose the ability to speak, walk, feed themselves, swallow, or breathe. Shenk likens the process to childhood development in reverse, or “retrogenesis”—“back to birth.” All of the developmental stages of childhood are experienced in reverse—“Alzheimer’s unravels the brain almost exactly in the reverse order as it develops from birth.” Today the problem is compounded due to the greater public awareness of Alzheimer’s—many people in the early stages are aware of what is happening to them and their inability to do anything about it. There is little in the way of treatment. An early-stage support group and a professor of sociology at the University of California at Santa Barbara, Morris Friedell, provided Shenk with poignant insights into the lived experience of Alzheimer’s. Friedell, who was aware of his diagnosis at the age of 59, after suffering depression initially, embraced his illness and figures prominently in the book. Shenk corresponded with him on the Internet and later met him.
The toll on caregivers is appalling:
The unique curse of Alzheimer’s is that it ravages several victims for every brain it infects. Since it shuts down the brain very slowly, beginning with higher functions, close friends and loved ones are forced not only to witness an excruciating fade but also increasingly to step in and compensate for lost abilities. . . . The caregiver must preside over the degeneration of someone he or she loves very much; must do this for years and years...
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