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doi: 10.1097/01.NT.0000354550.63181.1b
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What It is Like to Have Alzheimer Disease: Dementia From the Inside Out

FILLEY, CHRISTOPHER M. MD

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Dr. Filley is professor of neurology and psychiatry and director of the Behavioral Neurology Section at the University of Colorado-Denver School of Medicine.

The Wilderness. By Samantha Harvey. 372 Pages. Nan A. Talese/Doubleday 2009

For neurologists and many others, concern about Alzheimer disease (AD) continues to mount. More people are living longer, the disease is better recognized and, distressingly, promising treatments based on eradicating the infamous amyloid plaque all too often prove disappointing. The arts have not failed to notice the richness of possibilities inherent in this common and deeply problematic disease, and books and films steadily appear to probe its dramatic potential.

Into this fertile territory ventures Samantha Harvey, a novelist who chooses to grapple with the experience of dementia from the point of view of an individual whose own brain is under this assault. A graceful and perceptive writer, Harvey also holds a degree in philosophy, appropriate training indeed for a book that undertakes to explore what it is like to have AD. The Wilderness is thus an unusual account of dementia from the inside out.

Neurologists, not surprisingly, are accustomed to the objectification of cognitive dysfunction. The profession, after all, demands such an approach to justify its place within the worlds of medicine and neuroscience. Instruments used to summarize cognitive decline with a few minutes of testing are well known, and presumed to encapsulate the vast complexity of human mental life — normal or otherwise — into a workable number. At the same time, we probe the neuronal basis of dementia, peering into the phenomena of abnormal synapses, misfolded proteins, and deficient neurochemicals in an effort to grasp why a man cannot recall what he ate for breakfast.

Not incidentally, the use of measurable, objective information serves a key protective function, as the debilitating essence of an illness such as AD can be conveniently glossed over by a veneer of numbers and figures that render dementia a statistical, not a human, construct. At least in the clinic, dementia can be emotionally neutralized, reduced to a data set and stored away for dispassionate study. Neurologists and others who care for demented patients have an understandable need for such professional detachment.

All this is about the biology of dementia, but what about its experience? We recognize that consciousness is fundamentally a subjective phenomenon, a problem that so bedevils those who struggle to study it in a neural context. In patients with dementia, we can only speculate from what we see clinically, a task in which physicians and scientists do not typically indulge, at least not professionally. But a novel offers an ideal opportunity for exploring what happens to the consciousness of a person with dementia in a way that no objective study can.

Harvey boldly delves into what being demented is really about. Hers is the perspective of the sufferer, not the observer. The protagonist of The Wilderness is Jacob (Jake) Jameson, a British architect in his mid-60s around whom swirl a host of variously recalled life events. He is the novel's narrator, and bit-by-bit, after a fashion, the stories of his past and present emerge

Amid this process there lingers a pervasive confusion about the details, and the reader often finds the need to query which character is really being discussed, who is it that truly did something, what in fact happened. The referents of pronouns are often unclear, associations become jumbled, and important events become blurred in their recollection. Did Jake's wife Helen really die from a stroke at age 53 and, if not, how did he come to be with Eleanor, his new companion? Did he really have an affair with a woman in a yellow dress named Joy, or did he just have the desire? Did Helen have an affair?

Figure. DR. CHRISTOP...
Figure. DR. CHRISTOP...
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Often the text jumps hither and yon in erratic fashion, resembling a stream of consciousness, but Harvey's method is carefully crafted to illustrate the uncertain recall of a man who has forgotten if he likes raspberries. His mind meanders without direction or intent, and his past is hopelessly interposed with his present.

As the book nears its end, such inchoate thoughts build to a crescendo, such that fragments of memory are almost randomly admixed. This is Harvey's way of documenting the advance of dementia — as memory fails, the truth becomes increasingly elusive, and traces of mental life are little more than fragments of consciousness cast adrift in the storm of AD. This is ultimately a terrifying vision, as Jake has sufficient insight to know his memory cannot be relied upon even as he faces daily challenges that demand its normal function.

Adding to her skills as a novelist and philosopher, Harvey has developed considerable familiarity with neurology and AD in particular. She makes Jake left-handed, as are many architects and others with superior visuospatial capacities.

On several occasions Jake is in a physician's office being administered mental status tests — he cannot recall the doctor's name and so refers to her as the “fox-haired woman” — and he displays the expected deficits in orientation, memory, and, crucially for his profession, drawing. His doctor describes for him the plaques that become “a kind of rash that develops” in the brain and tangles that “twist together and choke the neurons.” A sadly accurate account is given of the feeble effect of cholinesterase inhibitors — helping brain cells work a bit better, but doing nothing to alter the biology of the disease.

Metaphor and irony pour out from Harvey's facile pen. Trained as an architect, Jake spends his productive life constructing impressive buildings that bring order to the world — his architecture represents his mental well-being. Later, as AD sets in, disorder gradually intrudes, and an unmapped wilderness comes to symbolize a life of increasing chaos where he must eventually reside. An ironic twist comes when Jake's son Henry is actually incarcerated in the very prison that Jake built in an earlier, happier time.

The prose is powerful. Combining her knowledge of the disease with evocative language, Harvey paints images of decaying memory as vivid as they are tragic. After reminiscing with Eleanor about his early life and career, Harvey writes about Jake: “All of this he remembers and can see plain as day — he just can't say when it happened. Like a photograph that cannot be placed anywhere specific in the album.” Or after a visit to the fox-haired woman and a discussion of the nature of his disease: “In his brain are countless cells…Inside each cell a little piece of him is packed, and every time a cell dies a piece of him dies. His past is just an electric impulse. Static flashes on a petticoat. Gradually he is being scattered and lost — hundreds of unread messages floating out across the sea.”

The Wilderness is a haunting account of a man's descent into the dementia of AD. As a chronicle of cognitive decline, this book will capture the reader's attention and incite a kind of horrified sympathy. The relentless, disabling, and exhausting loss of memory and intellect is beautifully captured. Yet, as good as this writing is, one longs for the day when medical science has at last triumphed, and books such as this can be read knowing that the epidemic of AD is itself a distant memory.

©2009 American Academy of Neurology

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