MICHEL MARTIN, HOST:
An Alzheimer's diagnosis can be so frightening, doctors say, that many people would rather dismiss memory problems than investigate them. As a result, experts think only about half of all cases are actually diagnosed. Recent developments could make it possible to detect the illness long before symptoms appear. But since there is still no cure, the question is whether getting an early diagnosis is worth it. Alex Smith of member station KCUR has this report.
ALEX SMITH, BYLINE: Jose Belardo of Lansing, Kan., spent most of his career in the U.S. Public Health Service. He worked on the frontlines of disasters in places like Haiti, Columbia, Nicaragua and the Dominican Republic. At home with his three kids and wife, Elaine, he was unfailingly reliable. So when he forgot their wedding anniversary two years in a row, they both started to worry.
ELAINE BELARDO: We recognized something wasn't right and pretty much attributed it to being overworked and tired.
SMITH: Then, last year, when Jose was 50 years old, he got an evaluation at the Walter Reed Medical Center, which included an amyloid PET scan. Jose says his diagnosis of early-onset Alzheimer's disease came as an inconvenient shock.
JOSE BELARDO: I got responsibility, man. I can't go away. I got kids. I've got graduations coming up. I got all this stuff coming up. I'm not going to let Alzheimer's take that away from me. That's for sure.
SMITH: Alzheimer's testing with biomarkers, like beta-amyloids, is still not widely available. But John Morris at Washington University in St. Louis says while still in the developmental phase, it could be the start of a new chapter in Alzheimer's care.
JOHN MORRIS: We're trying to treat people prior to the stage of dementia, prior to the stage where memory and thinking are affected in an effort to delay the loss of memory and thinking ability or even prevent it.
SMITH: Even though such treatment is probably a long way off, researchers and advocates say there are still lots of good reasons to seek an early diagnosis. Alzheimer's has typically been diagnosed by observing a patient's behavior and running cognitive tests. This can be pretty inexact and lead to misdiagnosis or other conditions going undetected.
MORRIS: For example, sometimes, a low thyroid hormone level can produce a dementia-like state. And that can be easily treated with thyroid replacement therapy.
SMITH: A study by the Alzheimer's Association shows that with more accurate tests, early diagnosis could save $64,000 per patient over the course of their lifetime. And since the new diagnostic method may make it possible to detect Alzheimer's at an earlier stage, patients can be more involved in planning for their future. That can go a long way to reduce the emotional toll of the disease for them and their loved ones.
After Jose Belardo's illness was diagnosed, his family rushed to get his affairs in order. They got in touch with the Alzheimer's Association, which provided support groups and other help. And before long, as his wife Elaine explains, the shock started to wear off.
E. BELARDO: And so what I would say is after you get a diagnosis of something that is incurable and progressive and perhaps even aggressive, pause and breathe and think about where the person is right at that moment because at that moment, Jose was not dying. And at this moment, Jose is not dying.
SMITH: Researchers hope that by getting more Alzheimer's patients diagnosed early on, more people with the disease will, like Jose, be able to make the best of the health they have.
For NPR News, I'm Alex Smith in Kansas City.
MARTIN: We have an update from the Belardos. They are in the final stages of preparing for the wedding of their daughter, Lauren (ph), next month.
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MARTIN: This story is a partnership between NPR, KCUR and Kaiser Health News.
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