The Caregivers’ Bookshelf: An Alzheimer’s Classic - The New York Times

More than 30 years ago, when the psychiatrist Dr. Peter Rabins and the psychologist Nancy Mace began working with dementia patients and their families at Johns Hopkins Hospital, they had to write and mimeograph (younger readers: look it up) small pamphlets to explain to them what was going on and what was to come.

It’s hard to remember how different things were. If you had stopped 20 people at random on the streets of Baltimore in 1981, I asked Dr. Rabins recently, how many would have known what Alzheimer’s disease was?

“If you asked 20 random doctors and nurses at Johns Hopkins, I don’t think any would have known,” he said.

In 1981, nothing had been published for a general readership. The Alzheimer’s Association was a little over a year old. Scientists had determined that dementia was a disease, not part of normal aging, and that it was caused by changes in the brain, not hardened arteries. “But that information was just barely starting to trickle out,” Dr. Rabins said.

As people from other cities started asking the Hopkins staff to mail copies of their pamphlets, Dr. Rabins and Ms. Mace decided they needed a publisher. They approached 10, five of whom said there was no market for such a book and five of whom never responded. The Johns Hopkins University Press finally agreed to take on the project.

“There was an interesting concatenation: family groups forming, six or seven research centers across the country making diagnoses, baby boomers starting to write about this mysterious condition affecting their parents, and that’s when the book came out,” he said. “It met a need.”

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