The answers they need: Local authors answer tough questions for Alzheimer's patients

By JENNIFER DESAI

There is nothing easy about Alzheimer's disease, a degenerative brain malady that causes the connections between brain cells to become ineffective, gradually robbing patients of their memory.
As medicine advances and enables people to live longer, more older men and women are being diagnosed with the disease -- and more families and caregivers are being affected by its symptoms.
Helen Davies and Mike Jensen, co-authors of "Alzheimer's: The Answers You Need," know from experience how difficult living with Alzheimer's can be. But they're trying to make it a little easier for those who have been recently diagnosed with it, and those who love them.
Ms. Davies is an assistant clinical professor at the University of California-San Francisco School of Nursing, and co-director of the Stanford/Veteran's Administration Alzheimer's Center in Palo Alto, where she has counseled Alzheimer's patients and led support groups since 1980.
Freelance writer Mike Jensen, a Menlo Park resident, was a secondary caregiver to his father-in-law, Dale Thompson, who died in 1996 after suffering from the disease.
"I had been thinking for a long time that a book like this was a real necessity, because I wanted patients and families to have a place where people could get ordinary questions asked and answered," says Ms. Davies. "There's a lot of great research out there, but scholarly pieces are secondary to someone who's just been diagnosed with the disease."
Mike Jensen thought so, as well. "When my father-in-law was diagnosed, I was trying to cope with his illness, and frustrated because I couldn't find answers to questions we were having." Eventually, the search for answers led him to the Alzheimer's Center and Ms. Davies.
"I was working on 15 or so other projects at the time, so a book was on the back burner," she says. Mr. Jensen, who had been a freelance writer for 16 years, was ready and able to help. But deciding on how the two would collaborate took some time.
"There wasn't any one way to work together that immediately sprang to mind," Mr. Jensen said. "In the end, we came up with a list of questions from my father-in-law's experience, my own imagination, and Helen's practice. And then we got together every week and formed answers for two or three of them until we were through."
The book's questions and answers cover themes including medical issues, family concerns, disease progression, and coping methods. Having answers to questions is a form of reassurance in itself, Mr. Jensen says, but both authors tried to provide more than just information. "A lot of the words here are mine, and the ideas are probably half mine, but the heart of the book is all Helen's."
Not just the facts

Having counseled cancer patients and their families for many years before focusing on Alzheimer's, Ms. Davies says that compassion, as well as information, is important.

"Many of the issues are the same with these diagnoses," Ms. Davies says. "There's the dismay and depression. In some ways it's worse with Alzheimer's, because there is no known treatment."

The book is a way of providing information -- and a kind of muted hope -- to recently diagnosed patients. "We knew we have to tell the truth, but we wanted to say it in a way that's easier to hear," Mr. Jensen says. "Helen, especially, was trying to gentle the words up, to say things in a way that is still true but not necessarily harsh."

For this reason, the authors chose to play down the technical and often-clinical language surrounding the disease. "There's a tremendous amount of research about Alzheimer's. We know a lot about what happens; we just don't know why. Researchers are looking at causes ranging from protein tangles in the brain to viruses," Ms. Davies says.

But even as researchers look into the causes and possible treatments for the disease, clinicians have developed more reliable tests for diagnosing the disease and the population is aging -- which makes for more Alzheimer's patients.

"People are getting diagnosed younger and younger now," she says, though the fastest growing number of new cases is still in the 75 to 80 age range.

"The baby boomers are just reaching 50, and because of more awareness in the public and on the part of health officials, numbers are growing," Ms. Davies says. She predicts that new drugs in new combinations might some day slow the progression of the disease, until a cure can be found. "We're only buying time, but that time is extremely valuable," she says.

Until a cure can be found, experimental treatment is an option, but patience is a necessity for both patients and their families. Ms. Davies and Mr. Jensen stress the importance of a familiar, comforting environment to help patients cope. But they also say that patients should do as much as they can safely do for themselves -- even if it takes more time -- rather than become passive and withdrawn out of fear of making a mistake.

"The message here," says Mr. Jensen, "is that fundamentally your quality of life with Alzheimer's is not what you'd hope, but not necessarily all bad."

Ms. Davies agrees. "There is life after diagnosis," she adds.

Authors appear May 12

The authors will appear on Tuesday, May 12, at the Senior Center of Palo Alto, 450 Bryant St., in Palo Alto. Patients and caregivers are especially encouraged to bring questions about coping with Alzheimer's disease. For more information, call 327-2811.