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Balancing personal hope, professional skepticism on Alzheimer's research

By Rhonda Rowland
CNN Medical Correspondent

July 20, 2000
Web posted at: 12:30 p.m. EDT (1630 GMT)

This news analysis was written for CNN Interactive.


In this story:

Reporting real progress, or fanning false hopes?

Bit by bit

Every little thing helps?

The next generation


ATLANTA (CNN) -- Dr. Alois Alzheimer first described the plaques and tangles, the key brain changes that characterize the disease, in 1906. But most people know the disease named for the German pathologist by how it slowly robs the essence of a loved one.

I first saw Alzheimer's disease in my paternal grandmother, but I did not initially know it was Alzheimer's. Grandma talked about how her thoughts were rushing, and how she felt confused. She forgot where she put things in her five-room house. But she was in her early 70s, and doesn't everyone become forgetful when he or she gets older?

After Grandfather died in 1984, Grandma's memory loss accelerated. Her once impeccable house became cluttered. She forgot to turn off her gas range. She lost her balance and fell. She had to start walking with a cane. Her house, with her memories, was sold. She moved in with her oldest daughter, who became her caregiver.

It was our custom, when I visited, for me to take Grandma to dinner. We sat across from each other, as we always did, at that dinner in 1987. I thought everything was as it always was. Then in mid-conversation, she looked at me as if I were a stranger and asked, "Who are you?"

"Rhonda," I said.

"You don't look like Rhonda," my grandmother said to me.

That is when I knew Alzheimer's, and I knew that the disease had taken Grandma from me.

Reporting real progress, or fanning false hopes?

A vaccine against Alzheimer's must sound almost too good to be true to the millions of families coping with the disease.

Scientists reported last year that an experimental vaccine, called AN 1792, not only halted but also reversed, in some cases, brain plaques characteristic of the disease. Young mice that were vaccinated did not develop brain plaques at all.

The vaccine works by stimulating the immune system to clear the brain plaques. Most researchers think the disease develops when protein fragments build up in the brain, forming sticky plaques; as the plaques build, memory is lost. Researchers in another camp think the brain tangles are the cause, rather than a result, of Alzheimer's.

At the largest-ever gathering of Alzheimer's researchers -- the World Alzheimer Congress 2000 that ended Tuesday in Washington -- scientists with Elan Pharmaceuticals gave an update:

In safety trial tests on 24 human patients with early or moderate Alzheimer's, the vaccine AN 1792 appeared to be safe, at least so far. It is too early to have any indication of its effectiveness.

Final conclusions on the first step of testing, the safety trial, will not be made until at least 100 patients have been given the vaccine, a process that may consume as much as a year. The next step will consist of more extensive studies to see whether the vaccine works in humans.

Those studies, expected to include several hundred patients, will not begin until the end of 2001, with results not available until two or three years after that. Even if all goes well with the studies, the vaccine would not be in circulation for at least three to five years.

Researchers have reported positive results from tests on mice of a potential vaccine for Alzheimer's  

If the vaccine works in humans as it has in mice -- clearing brain plaques and improving behavior and memory -- it could settle the long-running debate about what causes the disease, according to Alzheimer's researchers.

While the major media have reported the vaccine developments, some medical journalists and scientists have criticized the release of such preliminary information to the public.

The vaccine news is part of a trend to report news from scientific studies while they are in progress -- not just when the final results are published.

The concern about this trend is about the possibility of raising false hopes with incomplete information. Many studies that look promising in animals and in early human research fail to pan out.

Early studies of trial medicines and treatments are often too small to see true results. Real effectiveness cannot be seen until large, double-blind, placebo-controlled studies -- where both researchers and patients do not know who is getting the medicine and who is getting placebos -- are done.

Bit by bit

When I visited my grandmother in a nursing home in 1995, her behavior was child-like and she needed assistance with every task of daily living.

But on that day I felt she recognized me. She smiled and laughed and sang. The nurses were amazed at her exuberance.

The next day, when I looked into Grandma's eyes, they were vacant. The sparkle was gone. Her mood was sullen. There was no singing, no laughter.

On a visit a year later, I found Grandma strapped into a recliner. She was totally unresponsive. Except when I left. "Good-bye Grandma, I have to go now," I said. "Well, that's obvious," she said. Was it the disease or did she know what she was saying? I have wondered ever since.

That was the last time I saw her. She died at age 86 in 1997, 14 years after I first saw what I knew to be signs of memory loss.

Every little thing helps?

Willie Mae Irving's family is one of millions coping with Alzheimer's; Irving moved from her daughter's house to a nursing home after growing to need 24-hour care  

Three drugs have been approved by the U.S. Food and Drug Administration for treating Alzheimer's disease. All have been shown to help only in the early stages of the disease. They work on some symptoms, slowing memory loss and decreasing agitation; they do nothing to attack the cause or to slow the progression of the disease.

At the recent World Alzheimer Congress, researchers released results of a study of a drug, Memantine, that helped with moderate to severe cases of the disease. The drug is the leading prescription for dementia in Germany, where it has been available for more than a decade.

Memantine is classified in the United States as experimental. Several more studies would be needed for it to win marketing approval from the Food and Drug Administration.

Memantine does not slow the disease, but it helps patients with tasks of daily living: eating, dressing, bathing. It also improves a patient's sense of well-being for a few months. The drug's benefits are limited, and it is known to help for only a short time.

But what about the caregivers, often family members, who are burdened with the disease 24 hours a day? What is it worth to them to have even a short-lived reprieve?

The next generation

I spoke with my father the other day about the reports on the new research. "It sounds like they're making some headway," he said.

"Yes," I answered, "but it will still take some time before we know if any of these new approaches really work."

Since his mother died of Alzheimer's, I asked, does he worry about it? "It's definitely a concern," he said, "because I have most of my mother's genes."

Scientists know genetics play a role in the development of Alzheimer's. They have identified a handful of genes found in families whose members develop the disease at an early age, though these genes account for only a fraction of cases.


One "susceptibility" gene has been identified, but it is not clear why some people with this gene develop Alzheimer's and others do not. Scientists suspect another dozen genes could be involved with the development of the disease.

I am a reporter, and it is my job to remain objective about Alzheimer's research. As a person with Alzheimer's in the family, I want to know what is in the pipeline, even if it does not pan out.

It is a balance for the media and the scientific community to aim for: reporting the science when it is ready and informing the public of what could be.

Like anyone else, I want to see the perfect treatment or a cure for the disease. We do not have it yet, so I can tell Dad only what the science shows.

"Every time I forget something, I wonder if this is it," Dad said. "But hopefully if I ever get it, they'll have figured out what to do with it."

We can only hope.

   •Condition Clinic: Alzheimer's Disease

Alzheimer's Association
World Alzheimer Congress 2000

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