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The newspaper of The Johns Hopkins University October 23, 2006 | Vol. 36 No. 8
Putting Doctors In Your Hands

Jacqueline Wehmueller, executive editor of the Press' consumer health division, with a sample of books that help readers ask their doctors informed questions.
Photo by Will Kirk / HIPS

JHU Press' health books provide the public with top-flight medical advice

By Greg Rienzi
The Gazette

In the late 1970s, relatively few people knew the proper name of Alzheimer's, a disease of the mind that today afflicts an estimated 4.5 million Americans. Many did know, however, of the disease's devastating effects, progressive loss of memory and learning ability that eventually robbed its sufferers of self and brought anguish to loved ones.

Nancy Mace and Peter Rabins, both with the School of Medicine's Department of Psychiatry and Behavioral Sciences at the time — she as a staff assistant and he as an assistant professor — witnessed Alzheimer's impact firsthand and around 1979 began to shop around a proposal for a book that offered compassionate guidance and support to caregivers of those with such dementias. The pair contacted 10 publishers and promptly received 10 rejections.

Too depressing, they were told. Who wants to read about "old people" and progressive memory loss?

Turns out, more than 2 million people, and counting.

The Johns Hopkins University Press was the publisher that ultimately bit on Mace and Rabins' proposal, which became the landmark best seller The 36-Hour Day: A Family Guide to Caring for People With Alzheimer Disease, Other Dementias, and Memory Loss in Later Life, first published in 1981. The book, whose 25th anniversary fourth edition was released this month, has become known as "the bible" for families caring for people with dementias and has been translated into 15 languages.

The book also has the distinction of being only the second release in the Press' successful range of consumer health guides that bring the expertise of some of the nation's leading physicians to a general audience of caregivers, patients and their loved ones.

Currently, the Press has more than 50 consumer health books in print, roughly half of them written by Johns Hopkins faculty. In addition to Alzheimer's disease, the Press has published guides on diabetes, urinary incontinence, bipolar disorder, HIV infection, cerebral palsy, cancer treatment and strokes, among other topics. Not just chronic conditions, the consumer health range also includes guides on children's food allergies, pregnancy and parenting, and how to stay healthy in the workplace.

Jacqueline Wehmueller, executive editor of the Press' consumer health division since 1989, says that the books bring the wisdom and expertise of top-flight physicians to the public and provide readers with potentially life-saving information. "The doctor's knowledge and skills are no longer confined to those patients whom he or she can see but can reach anyone in the world with access to," Wehmueller recently pointed out in the Press' semi-annual newsletter, InPress.

They also can be groundbreaking, she says, as several of the books were published at a time when the public knew little about the diseases, as was the case when the Press released Living with Rheumatoid Arthritis in 1993 and Bipolar Disorder: A Guide for Patients and Families in 1999.

The books themselves contain detailed descriptions of the disease or condition, case studies, summaries of ongoing research and a wealth of answers on what both families and patients can do when confronted with symptoms and issues related to the disease. In the case of The 36-Hour Day, the book goes over such topics as how to modify a home, personal hygiene, nursing homes, legal issues, nutrition and emotional responses.

Each health guide goes through a rigorous peer-review process before it is presented to a faculty/editorial review board. Wehmueller says it is not uncommon for a book to be revised several times or updated at the last minute. Her goal is for each book to be as complete and authoritative as possible, while not losing the compassionate and individual voice of the author.

"I try to put myself in the place of the patient and ask all the questions a patient would have, like, Does it hurt? Will you need anesthesia with that? How long does it take to recover? I want our books to be comprehensive," she says. "I feel our books really arm the patients and families with information so that they can go to their doctor and ask informed questions."

Today, the JHU Press publishes six health books annually. Wehmueller says she is constantly on the lookout for an important disease that the Press hasn't covered yet and then attempts to identify the doctor or doctors who want to write about it. Often, she is able to secure some of the leading physicians in the field.

"[Our authors] are people whose whole careers have been dedicated to these specific topics and helping people. We get them to try to capture that lifetime of expertise into a book," she says.

Kathleen Keane, director of the JHU Press, says that each year the Press publishes top-quality health books that "truly help people" by providing guidance and support on the most difficult of questions.

"I think that the JHU Press differs from some of the other publishers in that we are willing to tackle some of the more difficult or frightening diseases and conditions," she says. "For instance, we came out with a book on spinal cord injuries, and a lot of people would not want to put a book like that on the market. But here is a devastating injury that deeply affects those associated with it. We felt it was important, and producing such as book has been a hallmark of ours."

Peter Rabins, now a professor of psychiatry at Johns Hopkins, says that what he and Mace, now retired, set out to do with The 36-Hour Day was provide objective medical information on dementias that the average family member could understand and also offer practical advice on how to make life better for both patient and caregiver.

"We wanted to recognize that the disease has quite a significant emotional impact on the care provider, as well as the patient," he says. "So with each edition we try to help the caregivers address their own emotional needs."

Rabins says that updating the book for its latest edition — the third edited by JHU Press senior editor Wendy Harris — offered him a perspective on the dramatic change in not just the medical understanding of Alzheimer's but the public's perception and knowledge of the disease.

"Today it would be very hard to find someone who doesn't know or hasn't been touched by Alzheimer's. I'm very grateful to the JHU Press for their appreciation [in 1981] of how big a problem this was," Rabins says.

A fifth edition? "I wish we wouldn't have to," Rabins says. "But I have a feeling we will."


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