Excerpt from Keeper by Andrea Gillies, plus links to reviews, author biography & more

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One House, Three Generations, and a Journey into Alzheimer's

By Andrea Gillies

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  • Hardcover: Aug 2010,
    336 pages.
    Paperback: Oct 2011,
    336 pages.

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Book Reviewed by:
Donna Chavez

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In photographic comparison, a normal brain resembles a freshly peeled chestnut, pale and fat and glistening, and a brain with advanced Alzheimer's disease looks rather like a walnut, shrunken and shriveled with bits apparently eaten away. The disease takes place as a physical invasion, involving the progressive destruction of the neuron forest. Under the microscope, the damage is theatrically obvious: there are plaques - fuzzy, rustcolored accretions of protein fragments - which interfere with the transport network, and tangles, which look rather like strands that have grown over the neurons, like bindweed in a garden, though in fact they're a distortion of the neuron wall itself, its microtubules having collapsed into knots. As cells wither and die, gaps form in the tissues, leaving characteristic holes. American researchers working with the new generation of scanners, and thus able for the first time to look into the brains of living Alzheimer's patients, have found that the disease starts in or adjacent to the hippocampus (the memory processing zone) and moves farther into the limbic system (our emotional nerve center); around eighteen months later, it has crept into the frontal lobe (site of the thinking, reflecting self). The disease always starts in the same place and takes the same general route, but proceeds unevenly in its spread. Some sections of the brain will be decimated, but neighboring ones might be unaffected and normal. It's rather like a forest fire in which clumps of blackened stumps sit adjacent to trees that seem oblivious to the disaster, untouched, their green canopies intact.

The term dementia (from de mentis, "out of the mind") was coined in 1801 in the asylums of Paris. Today it is used to mean brain failure, and in just the same way that heart failure is a condition caused by a whole host of problems, brain failure has many sponsors. One in fourteen UK citizens over sixty five has some form of dementia and one in six over eighty, but for UK citizens reaching the age of sixty- five in 2010, the risk of developing dementia is one in three. Almost one in six Americans aged sixty-five will go on to develop dementia, and more than one in five aged eighty- five. And that's the trouble with it, in terms of PR. It's an old person's disease, by and large, and elderly ill people aren't easy to "sell." The issue is confused by our muddle about what's normal in old age - the idea that senility is an ordinary part of the human condition, that it is aging itself made manifest, and thus can't be cured. Progress is slow.

Research funds aren't generous, despite the fact that currently dementia costs the United Kingdom about £23 billion a year and the United States a staggering $148 billion just to deal with damage limitation and long- term care. Unpaid caregivers, their lives transformed into a round- the- clock vigil, are saving the British government about £12.4 billion. In just one year (2008), the economic value of unpaid caregiving in the United States was estimated to be $94 billion. Two- thirds of UK citizens with late- onset dementia are living in a family home; about 70 percent in the United States. Both figures are probably higher when undiagnosed cases are taken into account.

In the United Kingdom, only £61 is spent on research per Alzheimer's victim, though the amount is £295 per patient for cancer. In the United States in 2008, $5.6 billion was spent on cancer research, but only $0.4 billion on dementia science. Cancer has higher cultural status, even, perversely, a twisted, dark kind of glamour. Plucky young people get it, pop stars battle it, pretty wives and dashing young husbands die of it, and their pictures are spread across the newspapers. Cancer is a disease that journalists get and write about on the premise that if life hands you lemons, make lemonade. People with dementia don't write about it much because writing isn't something they do - or wasn't, until recently, when the very- early- diagnosed patient lobby sprang into being and people like the writer Terry Pratchett began speaking out. The much-loved author of the Discworld novels, a man who's sold 55 million books worldwide, allowed a BBC TV crew to follow him for twelve months. The resulting television program (Living with Alzheimer's) charted unsentimentally the beginnings of his decline, his defeat by the attempt to tie a knot in his tie, his having to pause in giving a reading because he found that a "shadow" was falling repeatedly across the page. This is the kind of cultural event that introduces people to the idea that dementia has something to do with them. It will be a long road. In general, the Alzheimer's demographic and its symptoms have meant that it's very low caste - something that, even now, we associate with decay and the cabbage- and- disinfectant scent of the geriatric ward.

Copyright © 2010 by Andrea Gillies
From the book Keeper by Andrea Gillies, published by Broadway Books, a division of Random House, Inc. Reprinted with permission.

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