The push to detect Alzheimer's disease before symptoms emerge worries some experts, who argue that the emotional toll of a diagnosis for an "incurable disease" may outweigh the potential benefits of early detection, Roni Caryn Rabin writes in the New York Times' "Well" blog.
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Why researchers are interested in early detection
A growing number of clinical trials have focused on identifying and monitoring individuals who are in the "pre-symptomatic phase" of Alzheimer's disease and other dementias.
Specifically, some researchers believe that current treatments for dementia are ineffective because the conditions are not caught early enough; one theory is that that preventing amyloid plaque building in the brain—a characteristic of Alzheimer's disease—will prevent or postpone cognitive impairment.
Upcoming trials will test whether an antibody can destroy amyloid plques in the brain of otherwise asymptomatic individuals who have evidence of plaque buildup. But to qualify for the trial, participants will be required to undergo PET scans that detect amyloid plaques, which means that "you essentially will know your status, which is uncharted territory," according to Laurie Ryan of the National Institute on Aging.
Experts worry about the effects of early diagnosis
Despite the burgeoning interest in early diagnosis, experts warn that the medical profession lacks treatment to prevent or cure Alzheimer's, even if it is diagnosed early. They note that currently available treatments only delay symptoms, and there is a potential for misdiagnosis when screening people before symptoms emerge.
Additionally, little is known about the potential risks of early detection, which could create new stress, and depression, or possibly affect employment, purchasing long-term care insurance, and even self-image.
"It colors how people see you and how you see yourself," says Daniel Brauner of the University of Chicago, adding, "Everyone forgets things, but if you have the diagnosis, whenever you forget something you'll think 'It's because I'm sick.' It pathologizes everything."
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Author Nancy Berlinger argues that knowledge of early diagnosis might be distressing for some patients and their families. "You are telling someone they have a disease that they're not experiencing in any way that they can see, and you're telling them it's an incurable disease," she says, adding, "That's kind of tough."
This month, researchers at an Alzheimer's Association conference warned policymakers that early detection has not been found to improve outcomes and urged them to consider its implications before recommending wider screening (Caryn Rabin, "Well," New York Times, 7/29).
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