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Seeking an Alzheimer's answer

Dotty Walters enters the PET Scan at the Redwood Regional Medical Group where Dr. Allan Bernstein hopes to measure the amount of amyloid in the brain of Walters, who has been diagnosed with Alzheimer's Disease.

John Burgess / PD
By
THE PRESS DEMOCRAT
Published: Sunday, July 15, 2012 at 3:00 a.m.
Last Modified: Saturday, July 14, 2012 at 3:44 p.m.

The first signs became apparent a little more than a decade ago, when Dotty Walters, a familiar face around downtown Healdsburg, started forgetting places she and her husband, Jim, had visited.

Over the years, her memory loss progressed and with it her frustration and fear. Faces on the street were no longer familiar and Walters would often have to ask her husband to help with people's names. Pen and paper became essential tools.

“It's like somebody is chipping away at the bricks in your brain,” Walters said.

Walters, who graduated with honors from Stanford University and returned to earn a master's degree in education, had always been smart, gregarious, charming and friendly. When she learned that she had Alzheimer's disease, the news was difficult to accept.

“Every once in a while I get sad,” she said. “I wonder why this was sent to me.”

But Walters, 77, has no patience for self-pity. She and her husband are doing their part to find the answer to a disease that robs its victims of some of their most precious possessions: their memories.

“This is not something to be embarrassed about. This is something to be battled,” she said. On Friday, Walters underwent a series of brain scans at a Santa Rosa medical clinic, where she is participating in an 18-month clinical trial aimed at halting the progression of her dementia.

The Alzheimer's study is one of 57 open clinical trials now occurring across the United States, according to the National Institute on Aging. All have the common goal of finding a cure or treatment for the disease.

About 5 million people in the United States and 35 million people worldwide are living with Alzheimer's disease, the most common type of dementia. By 2050, the toll is expected to grow to more than 100 million people globally and about 15 million in the United States.

In the North Bay, about 20,000 people with Alzheimer's were living in Sonoma, Napa and Marin counties in 2008, according to the most recent data from the Alzheimer's Association. That figure is expected to double by 2030.

This year, payments for Alzheimer's care in the United States are estimated to be $200 billion, with another $210 billion worth of unpaid care provided by those who care for people with Alzheimer's and other dementias, according to the American Health Assistance Foundation's Alzheimer's disease research program.

Last week, researchers in Iceland made international headlines by publishing a study that raised hopes a class of drugs now under development may be able to slow the progression of the disease or even prevent it.

The study identified a rare genetic mutation that appears to slow the production of beta amyloid, a substance that builds up in specific patterns in the brains of people who have Alzheimer's. People with the mutation appeared to be protected from Alzheimer's, researchers found.

The discovery appears to bolster clinical trials of drugs that fight amyloid buildup.

In one trial, individuals with a high likelihood of developing Alzheimer's disease are being given a drug that seeks to reduce amyloid.

The international study, known as DIAN, for Dominantly Inherited Alzheimer's Network, focuses on individuals with a rare inherited gene mutation that causes Alzheimer's disease. Though Alzheimer's caused by genetic mutation accounts for only a tiny fraction of cases, scientists believe these studies could reveal important information about the relationship between amyloid and dementia.

But it's unclear whether amyloid buildup is the cause of Alzheimer's disease, or a biochemical consequence of the neurodegenerative illness.

“We don't know how important a factor amyloid buildup is,” said Dr. Sue Stephenson, medical director of the Memory Clinic at Kaiser Permanente Medical Center in Santa Rosa.

Stephenson said amyloid studies are one aspect of current dementia research, and that there are other known factors associated with the increased risk of the disease. Most cases of dementia are probably “mixed,” she said, a term that describes conditions where Alzheimer's coexists with other pathologies, such as vascular dementia.

“We know that people who exercise get dementia less often,” she said. “People who have diabetes, high blood pressure, high cholesterol” or have experienced physical trauma, such as football and soccer players, “are at higher risk of dementia.”

On Friday, Dotty Walters underwent a PET scan, short for positron emission tomography, to essentially determine the amount of beta amyloid in her brain.

The scan is part of a series of tests and medical treatments Walters will undergo as a participant in an 18-month clinical trial aimed at halting the progression of her dementia. The trial is sponsored by biotech giant Genentech, which developed the drug therapy, a monoclonal antibody, designed to reduce amyloid buildup in the brain.

“This particular trial is probably the most exciting one I've been involved in, certainly in Alzheimer's research,” said Dr. Allan Bernstein, a local neurologist who is conducting the trial at the Redwood Regional Medical Group in Santa Rosa, one of only 20 trial sites worldwide.

Bernstein, who retired from Kaiser Permanente in 2008 after 34 years, has done extensive clinical research and participated in many drug trials, including for Alzheimer's drugs. He currently works with both Redwood Regional and Radiant Research, a Cincinnati, Ohio-based clinical research company with an office in Santa Rosa.

Bernstein said previous drug trials may have failed because they've been tested on people with advanced stages of Alzheimer's. Since the disease is a progressive one, the brain cell damage it causes over time is too extensive to reverse or abate in those with severe symptoms.

The trial involves the same drug being used in the DIAN study, Bernstein said. In the local study, all participants have some degree of cognitive loss. The amount of beta amyloid in the brain, and hopefully the effects of the drug, will be closely monitored using several “bio-markers.”

This includes the use of imaging technology with the PET scan, chemical studies of the amount of amyloid in spinal fluid (here amyloid decreases because so much of it is concentrated in the brain) and clinical exams of cognitive loss.

The imaging procedure was approved only recently by the U.S. Food and Drug Administration, he said.

“Previously our only tracking was cognitive testing,” Bernstein said.

Bernstein said he has 15 slots for those who want to participate, but he needs to fill those slots within the next couple of weeks.

There is no cost to participate and candidates must meet the following criteria:

• Have a diagnosis of Alzheimer's disease. Candidates must not be completely disabled.

• Be 50 to 80 years old.

• Have a supportive family member or friend who can attend appointments.

Some of the participants will be given a placebo, while others will be given the real drug. Neither Bernstein nor the participant will know who is being given the placebo.

That information will only be known by the members of a safety monitoring committee who will be periodically tracking the results of the study, Bernstein said.

“If the drug appears to be effective at the end of the 18-month trial, everybody goes on the real drug,” he said.

Dotty Walters said she's not ashamed of her disease.

“It's simply something that nature dumped on me,” she said. “I'm just so happy to be part of a program that helps others.”

(You can reach Staff Writer Martin Espinoza at 521-5213 or martin.espinoza@pressdemocrat.com.)

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