The 36-Hour Day: Still a Must Read for the Caregiver

Last week, myself and approximately 75 other advanced Elder Law Attorneys from across the US gathered in Grapevine, Texas outside of Dallas to share ideas and information about the future of Elder Law and long-term care in the US.

Our keynote speaker was psychiatrist, Dr. Peter Rabins, of Johns Hopkins University. Dr. Rabins talked about the history of Alzheimer’s disease. He asked that if you had stopped 20 people at random on the streets of Baltimore in 1981, 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.

In order to address his patients’ increasing needs, Dr. Rabins and his staff printed a pamphlet explaining Alzheimer’s disease. As people from other cities started asking the Hopkins staff to mail copies of their pamphlets, Dr. Rabins and his staff decided they needed a publisher. They approached several publishing companies, most 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.

Roughly 2.5 million copies later, “The 36-Hour Day” is marking its 30th anniversary with a fifth edition. It has lots of company on bookshelves now: memoirs, caregivers’ guides, children’s stories, supposed prevention programs. And the Web, of course, brings support and information from many sources, including the Alzheimer’s Association. But “The 36-Hour Day” remains the bible.

The authors update the science and research with each edition. This time they’ve also added information on early-stage disease, including mild cognitive impairment, and sections on insurance and end-of-life decisions. Also, there is information about other causes of dementia besides Alzheimer’s. There are new sections on frontotemporal dementias, Lewy body dementia and traumatic brain injuries.

“The 36-Hour Day” remains a chilling book written in a formal style; its virtues are its comprehensiveness and its sober realism. Thirty years from now, with luck and money, the way we think about dementia may differ as much as our current understanding does from that in 1981.

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