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
Amazon.com," 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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