In 1981, when Johns Hopkins University Press published Nancy Mace and Peter Rabins’s The 36-Hour Day, the Alzheimer’s Association had just been founded and dementia was a taboo subject. Since then the book has gone on to sell 2.5 million copies in both print and digital formats and is poised to go into a fifth edition with a first printing of 30,000 trade paper and another 5,000 large-print at the beginning of November. That’s a far cry from the mimeographed samizdat version that Dr. Rabins handed out to caregivers in the 1970s, when he and Mace were trying to help form a local Alzheimer’s chapter in Maryland. Ultimately the mimeographing became so burdensome, especially after Ann Landers mentioned it in a column, that Dr. Rabins’s boss suggested that they turn the material into a book.
But the route to publication wasn’t easy. Ten trade houses turned down Mace, then an assistant in psychiatry and coordinator of the T. Rowe and Eleanor Price Teaching Service at the Department of Psychiatry and Behavioral Sciences of the Johns Hopkins University School of Medicine, and Rabins, M.D., M.P.H., now co-director of Geriatric Psychiatry and Neuropsychiatry and director of the T. Rowe and Eleanor Price Teaching Service of the Department of Psychiatry and Behavioral Sciences at the Johns Hopkins University School of Medicine.
Their submission to JHUP dovetailed with the press’ decision that, given the prominence of the university’s medical school, it should publish books on medical issues geared to consumers. Although it wasn’t the first health book on the Hopkins list, it was one of the earliest—and bestselling. Publicity manager Kathy Alexander credits The 36-Hour Day with boosting the press’ entire consumer health imprint, which represents a small percentage of the 200 to 250 books that JHUP publishes annually, and a disproportionately large percentage of sales.
“We started writing essentially two or three-page targeted pamphlets, What do you do if somebody wanders? What do you do if somebody is crying?,” recalls Dr. Rabins in a phone conversation. And the original name of the original collection, he notes, was not particularly memorable, The Family Handbook: A Guide for the Families of Persons with Declining Intellectual Functioning, Alzheimer Disease, and Other Dementias. The book’s title ultimately come from a phrase used by a man in Seattle whose wife had Alzheimer’s: “Living with my wife is like living a 36-hour day.” The title stuck. “It’s like The 50-Minute Hour; it’s catchy. But that still doesn’t tell you what it’s about,” said Dr. Rabins. “At the time just putting Alzheimer Disease in the subtitle, people wouldn’t know what it was about. I don’t think you could find an adult now or a medical practitioner who hasn’t heard of Alzheimer’s.”
The bulk of the changes for the new edition concern the latest research. There’s also information on Medicare and what insurance is available, a new section on Mild Cognitive Impairment, more information on end-of-life issues as people are living longer, and living arrangements. When the book first came out, assisted living wasn’t much of an option, now says Dr. Rabins, there are as many assisted living beds and nursing home beds. Despite the seeming intractability of Alzheimer’s, he remains hopeful that it can be prevented. “It’s pretty clear that the brain is developing for ten years before there are any manifestations,” he says. “I think there is a real possibility. That could be [this generation’s] polio vaccine.”