Alzheimer's is the second-most feared disease after cancer and many people say they would seek testing for themselves or a loved one even if they did not have symptoms, U.S. and European researchers said Wednesday.
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The findings, presented at the Alzheimer's Association International Conference in Paris Wednesday, reflect concern about the swelling ranks of people with the most common form of dementia. Alzheimer's now affects nearly 36 million people worldwide.
Recent studies suggest the disease starts developing at least a decade before symptoms appear and many scientists and patient advocates believe earlier testing will play an important role in getting people treated and in preparing families for the burden ahead.
The telephone survey of 2,678 adults aged 18 and older in the United States, France, Germany, Spain and Poland was conducted by researchers at the Harvard School of Public Health and Alzheimer Europe, with funding by Bayer AG, which is developing an imaging test for early signs of the disease.
It found that more than 85% of respondents said they would see a doctor if they had symptoms of confusion and memory loss. And more than 94% said they would want the same for a family member.
When asked to identify the most feared disease out of a list of seven that included cancer, heart disease and stroke, nearly a quarter of respondents from four of the five countries said they most fear getting Alzheimer's.
Many in the survey said they know or have known someone with Alzheimer's, including 72% of those in France, 73% in Germany, 77% in Spain, 73% in the United States and 54% in Poland.
And about three out of 10 people in the study said they have a family member who has had the disease.
Despite high levels of anxiety in the study, as many as 40% of people said they did not know Alzheimer's is fatal and many said they thought there were effective treatments that could slow its progression.
Current drugs only treat Alzheimer's symptoms, but none have been shown to delay the advance of the disease, which slowly robs its victims of the ability to think and care for themselves.
Nearly half of the people in the study believe there is a reliable medical test that can determine whether a person suffering from confusion and memory loss is in the early stages of Alzheimer's disease.
And even healthy people with no symptoms are interested in testing, with about two-thirds of respondents saying they would get tested to see if they were likely to develop the disease.
"A very significant number of people appear at this stage to want to know if they are at significant risk even without symptoms," Blendon said in an interview.
While companies such as Eli Lilly and Co, General Electric Co and Bayer are getting close to developing imaging that can spot early signs of Alzheimer's in the brain, as yet there are no reliable medical tests.
Blendon said many countries are pushing for earlier testing and evaluation in people who have symptoms, but he worries that this might raise expectations for treatments that are not yet available.
Dr. Gary Kennedy of the division of geriatric psychiatry at Montefiore Medical Center in New York, who was not involved with the survey, said early testing is well worth it for people who have symptoms.
He said earlier diagnosis allows families to prepare and make their wishes known about how they want to be cared for while they are still capable. And while currently approved drugs do not work for everyone, about 2 in 10 people do have some benefit.
"The chances are not great that the family is going to see anything from treating them," Kennedy added.
He often recommends treatments in case they get lucky.