Book Review

Losing My Mind: An Intimate Look at Life with Alzheimer's

N Engl J Med 2002; 347:861September 12, 2002

Article

Losing My Mind: An Intimate Look at Life with Alzheimer's
By Thomas DeBaggio. 224 pp. New York, Free Press, 2002. $24. ISBN: 0-743-20565-0

Herbalist and writer Thomas DeBaggio describes eloquently the terror evoked by the label “Alzheimer's disease.” His book joins works of fiction, nonfiction, and alleged nonfiction that portray their authors' struggles with the demon of dementia. In general, we should celebrate such attempts to highlight the perspective of the patient, client, or consumer with descriptions of the writer's own experience with illness. Nevertheless, efforts to inform and influence the public through such books invite criticism as well as celebration.

Losing My Mind is intentionally written in several different voices. Incompletely referenced quotations from the Johns Hopkins White Papers, National Institute on Aging progress reports, and various journal articles pepper the book. Although they reflect a certain zest for science, they are ultimately distracting. The author's research for the book did not prevent errors such as the claim that donepezil slows the death of nerve cells or oversimplifications of issues surrounding apolipoprotein E testing. Short aphorisms, highlighted by italics, have been constructed with care to capture generalizations about the experience of dementia, but like much of the book, these sentences are excessively dramatic and overwritten. One example appears at the back of the book: “What better way to die than celebrating life?”

The main part of the book communicates DeBaggio's powerful memories of earlier life and the current state of the author's intelligence. Stories of his childhood — for example, the story of building a crystal radio when he was a Cub Scout — mingle with the anger and terror of his diagnostic process. DeBaggio became a spokesperson for the Alzheimer's Association, a favorite of Noah Adams on National Public Radio, and a reluctant but show-stealing speaker at the World Alzheimer's Congress held in Washington, D.C., in 2000. He is currently writing more books about his experience with dementia, perhaps inspired by the success of his first work.

This is not the first book that has caused me to question the appropriateness of a disease label either for a specific person or as a social construct. Could such an eloquent, intelligent writer, especially one who so graphically describes the failing of his writing at the end of the book, have Alzheimer's disease? Perhaps he received assistance in writing, but if so, why was this assistance not listed in his acknowledgements? Could he have an Alzheimer's disease variant? Hints are given about a family history, but the results of the research into the pedigree of this 57-year-old man are not fully shared. Is this a familial dementia or not? The issues of diagnosis and social construction of disease are essential to this book because of the fears expressed by the author about his label.

Perhaps DeBaggio is describing the normal aging of a 57-year-old. Might he have benign senile forgetfulness, aging-associated memory impairment, or even mild cognitive impairment? These are labels. Which of them are diagnoses of disease? None. Which might be a harbinger of further cognitive decline or even dementia? All of them, but so is aging itself, to one degree or another. Diminished mental powers, from one cause or another, will accompany aging for a long time to come. But we should not forget positive aspects of cognitive aging, such as opportunities for sharing wisdom among generations. Does the fear of Alzheimer's disease overshadow efforts to enhance cognitive vitality as we age?

Between normality and dementias such as Alzheimer's disease there are more hilly, continuous relations than chasms of categorical distinctions. Alzheimer's disease is a social marker, and those who control this marker are powerful. As efforts to promote the early recognition of Alzheimer's disease continue, how much age-related cognitive change will be medicalized?

Can it be that one of the listeners to the National Public Radio program on which DeBaggio was featured was correct in asking whether more suffering than we imagine is caused by the labels that doctors apply? Whatever the best label for DeBaggio, he does us a service in documenting the power of fear of Alzheimer's disease. The treatment of the phobia of a disease is quite different at the levels of both the person and the society than the therapy for the disease itself. What if someone had what we now call Alzheimer's disease and was not so afraid? What if we could die in peace? What if we really could celebrate life as we died?

Peter J. Whitehouse, M.D., Ph.D.
Case Western Reserve University, Cleveland, OH 44120-1013
pjw3@po.cwru.edu