An estimated 4.5 million Americans have Alzheimer's disease — a number that's more than doubled since 1980. By the year 2050 the number could go as high as 16 million.
But with new techniques to determine who'll get Alzheimer's before it happens, the question of whether and how to tell patients is a sensitive one.
By the time Alzheimer's disease is well along, it has usually demolished the brain beyond repair. That's why scientists believe the key to treating Alzheimer's is discovering its earliest stages.
“We need to know how to do imaging,” says Dr. Rudolph Tanzi at Massachusetts General Hospital. “We need to know how to do the right psychological tests and match those to the genetics that is actually determining risk for Alzheimer's disease.”
So far, the research on healthy volunteers as well as people with the disease has produced tantalizing leads to possible treatments. But what it has accomplished best is diagnosing Alzheimer's at earlier stages — often years before the most serious symptoms.
The most effective method of diagnosis is not brain scans or genetic tests, but psychological tasks like one where the volunteer is timed as she connects letters and numbers in order.
“It's a surprisingly sensitive test, given how trivially easy it seems,” says Dr. Deborah Blacker at Massachusetts General.
Not so is easy is what to tell the patients. Because there's no cure — not even treatments to slow the progression of the disease — there's a big debate about when to tell people they're in the early stages of Alzheimer's. For now, the doctors decide on a case-by-case basis.
“I always work with the patient and family,” says Dr. Bradford Dickerson at Massachusetts General. “It's very frustrating to work with families and patients and be able to tell them this information, but not be able to do anything about it,”
But the diagnosis has become so common that the Alzheimer's Association has set up a committee of advisers of people who actually have the disease.
“I was able to mask the fact that I had Alzheimer's for a couple of years,” says one committee member.
“I just hope that there will be a cure soon enough,” says another.
Among the major tasks of the committee is advising doctors on when to tell patients and how to help them cope with a future of Alzheimer's.