[Infowarrior] - Caregiver’s Bookshelf: The Beginnings of Alzheimer’s

[Richard Forno]

August 27, 2010, 9:00 am
The Caregiver’s Bookshelf: The Beginnings of Alzheimer’s

By PAULA SPAN

http://newoldage.blogs.nytimes.com/2010/08/27/the-caregivers-bookshelf-the-beginnings-of-alzheimers/?hp

It’s been nearly 30 years since Johns Hopkins psychiatrist Peter Rabins and co-author Nancy Mace published “The 36-Hour Day,” the best known guide to caring for someone with Alzheimer’s disease. Now in its fourth edition, it remains a trusted source of information and support.

But the landscape of dementia — its diagnosis, its treatment, how much neuroscience has advanced, how much the public understands — has changed dramatically, as Gina Kolata has been reporting in The Times. As she also points out, this progress in diagnosing Alzheimer’s will mean that families are likely to face tough decisions sooner than ever.

“The book was a landmark twenty-some years ago when people were being diagnosed with what we’d call moderate to end-stage dementia,” said Dr. P. Murali Doraiswamy, a prominent researcher on the aging brain at Duke University Medical Center. “Now, people are being diagnosed much earlier, when they’re still functioning well, and there’s a push to diagnose at even earlier stages.” With more medications available, with better understanding of the non-Alzheimer’s dementias, “people want to be more proactive,” Dr. Doraiswamy said. “They want to join clinical trials. They want ways to protect their brains.”

So Dr. Doraiswamy, with social worker Lisa Gwyther, who directs Duke’s Alzheimer’s family support program, and science writer Tina Adler, intend for their book, “The Alzheimer’s Action Plan,” to fill a gap. “It’s essentially a book about the early stage of the disease,” Dr. Doraiswamy said.

These authors dispute the notion that since there’s no cure for Alzheimer’s, diagnosis and treatment are pointless.  “Studies suggest that people who start treatment early usually remain better off than those who start treatment months later,” they write. So they’ve mapped out strategies for seeking a diagnosis and maximizing the usefulness of a doctor’s appointment. They explain conditions that can masquerade as Alzheimer’s but aren’t. They offer very specific advice on medications, not only Alzheimer’s drugs but antidepressants and antipsychotics.

An analysis of the pro’s and con’s of participating in clinical drug trials even includes — a bonus from Dr. Doraiswamy — a sample consent form, annotated to translate its medicalese into intelligible English.

At some point, given Alzheimer’s inexorable (for now) progression, caregivers will likely need to graduate to Dr. Rabins’ book. But when they’re at the bewildering beginning of the process, when it’s not even clear exactly what an elder is dealing with, “The Alzheimer’s Action Plan” will be extremely helpful.

Paula Span is the author of “When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.”