Researchers found patients were more likely to be informed only after their disease had advanced
WebMD News from HealthDay
By Dennis Thompson
The research, conducted by the Alzheimer's Association, involved patients whose Medicare records listed treatments that are specific to Alzheimer's disease.
However, when the researchers asked the patients (or a caregiver as a proxy) if their doctor had informed them that they had the brain-robbing disease, only 45 percent said they had been told so by their doctor.
By comparison, more than 90 percent of people with the four most common cancers -- breast, colorectal, lung and prostate -- said they had been told about their diagnosis.
"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," said Beth Kallmyer, vice president of constituent services at the association. "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," she added.
"That's all changed now, and if you don't remember that, you can't even imagine how it was back then, and it is that way now for Alzheimer's disease," she added. "People are feeling like they can't talk about it, and we need to change that."
The researchers found that Alzheimer's patients are more likely to be told of their diagnosis only after the disease has become more advanced, and their ability to participate in their care has diminished. "As the disease progresses, it's pretty hard to deny something is going on," Kallmyer said.
Failing to promptly notify Alzheimer's patients of their diagnosis robs them of the chance to live life to the fullest and play an active role in planning for their future, since many learn of their illness only after their faculties have started to drastically decline, said Keith Fargo, director of scientific programs and outreach for the association.
These patients also miss out on clinical trials that might improve their condition, since most trials only accept people with early Alzheimer's disease, explained Kallmyer.
source : Many With Alzheimer's Aren't Told of Diagnosis by Doctor: Report