Alzheimer's Feared, Misconceptions Common

Survey Finds Alzheimer's Second Most Feared Disease, After Cancer

From the WebMD Archives

July 20, 2011 (Paris) -- Alzheimer's is the second most feared disease after cancer, even though many people do not realize it is inevitably fatal, a U.S. and European survey shows.

More than eight in 10 respondents said they would see a doctor if they were experiencing confusion or memory loss to determine if the case was Alzheimer's disease. And nearly all would take a loved one exhibiting these symptoms for evaluation, says Robert Blendon, ScD, professor of health policy and political analysis at the Harvard School of Public Health.

However, 38% to 59% of respondents mistakenly believe that there is a reliable test to determine if a person is in the early stages of Alzheimer's, according to the findings, presented here at the Alzheimer's Association International Conference.

Expectations High

Recent studies suggest that Alzheimer's starts developing a decade or more before symptoms appear. As researchers work toward the ultimate goal of developing drugs to prevent and treat the disease, early detection will be crucial, Blendon tells WebMD.

"The questions we wanted to answer were: Will people come for testing? And what would happen if they did?

"We found a large proportion of people will come, but they may come with high expectations [that we have more to offer than we currently have]," he says.

The telephone survey involved 2,678 adults in the United States, France, Germany, Spain, and Poland.

When asked to identify the most feared disease out of a list of seven that included cancer, heart disease, and stroke, about one-fourth of respondents from four of the five countries cited Alzheimer's. In the fifth, Poland, only about 12% did.

Between one-third and two-thirds of people -- from 35% in the U.S. to 62% in Germany -- mistakenly believe Alzheimer's is not a fatal disease. (There are some drugs like Aricept, Cognex, Exelon, and Razadynethat boost mental functioning in a small percentage of people for a time, but none halts the inevitable progression of the disease).

About three-fourths of people surveyed said they know or have known someone with Alzheimer's disease.

About two-thirds of respondents say they would get tested to see if they were likely to develop the disease, even if they had no symptoms.


Early Testing for Alzheimer's

Several research groups are developing tests for the early detection of Alzheimer’s disease, but they are not yet ready for prime time. These include imaging scans with radioactive tracers that detect the amount of Alzheimer's associated plaque in the brain and an experimental test that looks for changes in the eye that can precede the development of Alzheimer's.

Alzheimer's Association spokeswoman Mary Sano, PhD, director of Alzheimer's disease research at Mount Sinai School of Medicine in New York City, says she's not surprised so many survey respondents embraced early testing.

For starters, it allows families to prepare for the long road ahead while the patient's mind is still relatively intact, she says.

Also, many patients are hopeful that testing will rule out Alzheimer's, giving them peace of mind, Sano tells WebMD.

But other experts say they doubt respondents would have indicated such a willingness to be tested if they realized no effective treatment was available.

“Without a treatment to offer, it doesn’t do the clinician much good to know who is at increased risk,” says William Thies, MD, chief medical and scientific officer at the Alzheimer’s Association. Testing is still useful in the research setting, he adds.

Testing for variants in the ApoE gene that are associated with an increased risk for Alzheimer's disease were available for a while, and it became apparent that people did not want the test in the absence of an effective treatment, Thies tells WebMD.

About 35 million people worldwide have Alzheimer's disease, the most common form of dementia, and the number of cases is expected to triple to 106 million by 2050.

The survey was conducted by researchers at the Harvard School of Public Health and Alzheimer Europe. It was funded by Bayer AG, one of several companies developing an imaging test for early detection of the disease.

These findings were presented at a medical conference. They should be considered preliminary as they have not yet undergone the "peer review" process, in which outside experts scrutinize the data prior to publication in a medical journal.

WebMD Health News Reviewed by Laura J. Martin, MD on July 20, 2011



Alzheimer's Association International Conference 2011, Paris, France, July 16-21, 2011.

Robert Blendon, ScD, professor of health policy and political analysis, Harvard School of Public Health.

Mary Sano, PhD, director of Alzheimer's disease research, Mount Sinai School of Medicine, New York City.

William Thies, PhD, chief medical and scientific officer, Alzheimer’s Association, Chicago.

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