Doctors often withhold Alzheimer's diagnoses from patients

Fewer than 50% of patients say they were told about their diagnosis

Many Americans with Alzheimer's disease were not initially told about the diagnosis by their physician, according to a new study from the Alzheimer's Association.

About 5.3 million people have Alzheimer's disease and that number is expected to nearly triple by 2050, assuming no treatment is discovered, according to the Alzheimer's Association.

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For the study, researchers examined Medicare claims data from 2008 to 2010 to identify individuals whose providers had submitted at least one Alzheimer's-related claim. The claims were compared with those for other conditions, such as several common types of cancer, stroke, and cardiovascular disease.

The researchers asked patients whether their health care provider had disclosed the diagnosis and found that fewer than 50% of patients said they had been told about their dementia or Alzheimer's diagnosis. In comparison, the average disclosure rate for most cancers was more than 90%.

"These really low diagnosis disclosure rates [of Alzheimer's] are really reminiscent of what happened in the 1950s and 60s, and even into the 70s, with cancer," says Beth Kallmyer, vice president of constituent services for the association, adding, "Cancer was called the 'c-word.' It didn't get talked about in doctors' offices. It certainly wasn't talked about in the general public."

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In addition, the study reported that between 2000 and 2013, the number of Alzheimer's-related deaths increased by 71%.

According to the study, the failure to disclose an Alzheimer's diagnosis can hinder early interventions that might slow symptoms and can prevent caregivers from making arrangements to protect the patient's safety. "What struck us was that physicians generally understand the positive benefits of disclosing the diagnosis, and agree with those benefits," says Keith Fargo, director of scientific programs for the association. He adds, "But many still don't do disclosure in their own practice" (Colliver, San Francisco Chronicle, 3/23; Hamilton, "Shots," NPR, 3/24; Park, TIME, 3/24; Thompson, CBS News, 3/24).


The takeaway: A new study suggests that many doctors are avoiding discussing Alzheimer's or dementia with patients—even when doing so may also for early interventions that slow symptoms

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