Many Doctors Who Diagnose Alzheimer's Fail To Tell The Patient

Mar 24, 2015
Originally published on March 24, 2015 1:01 pm

Doctors are much more likely to level with patients who have cancer than patients who have Alzheimer's, according to a report released this week by the Alzheimer's Association.

The report found that just 45 percent of Medicare patients who'd been diagnosed with Alzheimer's said they were informed of the diagnosis by their doctor. By contrast, more than 90 percent of Medicare patients with cancer said they were told by their doctor.

"What we found is really shocking," says Beth Kallmyer, vice president of constituent services for the Alzheimer's Association.

"This is reminiscent of what happened in the 1960s and 1970s with cancer," she says. "But that's changed now, and it really needs to change for Alzheimer's as well."

For years, the association's help line has been receiving complaints from family members who say that doctors are reluctant to reveal an Alzheimer's diagnosis, Kallmyer says. So the association decided to investigate by studying medical records and survey results from Medicare recipients.

To make sure that Alzheimer's patients hadn't simply forgotten what a doctor said, the group also looked at Medicare survey responses from family members and other caregivers. The result wasn't much better: Just 53 percent said a doctor told them of the patient's diagnosis.

The report also found that patients with advanced Alzheimer's were more likely to say they'd been told than people in the early stages of the disease.

One reason doctors often cite for not telling patients is the time constraints of a typically short appointment, says Keith Fargo, director of scientific programs at the Alzheimer's Association. "It's difficult to disclose a diagnosis of a fatal brain disease in just a few minutes," he says.

It's also hard for doctors to tell patients they have a disease that can't be stopped or even slowed down by a drug or surgery, Fargo says. And, he says, doctors often fear the emotional reaction an Alzheimer's diagnosis can cause.

But doctors need to change their behavior for the sake of their patients, Fargo says.

"By the time you get to a point where you can be diagnosed with Alzheimer's disease you are already beginning to experience a loss of some of your cognitive functions," he says. "That's distressing. And to not know why is confusing, and can be frightening."

Patients with Alzheimer's should be told, even though it's not an easy thing to do, says Dr. Pierre Tariot, a geriatric psychiatrist who directs the Banner Alzheimer's Institute in Phoenix.

Tariot can't remember the first time he informed someone they had Alzheimer's, but he's pretty certain it didn't go well. "I'm sure that I squirmed," he says. "I'm sure that I was uncomfortable and somewhat vague and evasive."

Tariot says he has gotten better, in part because he has learned to anticipate the questions he's likely to get from patients and family members: " 'Is there anything we can do?' 'Am I going to get worse?' 'When am I going to die?' or 'When is she going to die?' "

And, over the past several decades, Tariot has learned that his patients are grateful when he is honest about what is happening to their brain. "People are relieved, not distressed," he says. "They're relieved to have somebody who knows what's going on and gives a message of at least some hope ... a message that, 'We will stand by and navigate this process with you.' "

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Transcript

DAVID GREENE, HOST:

Some news this morning that may vindicate families of Alzheimer's patients who have felt ill-served by their doctors. A new report has found that in many cases when someone is diagnosed with Alzheimer's, the doctor doesn't tell the patient. NPR's Jon Hamilton has the story.

JON HAMILTON, BYLINE: Since the 1960s, doctors have become more reliable about disclosing diagnoses like cancer, but Alzheimer's patients and their families have complained that doctors still aren't so candid with them. So Beth Kallmyer of the Alzheimer's Association says her group decided to investigate using medical records and survey results from Medicare recipients.

BETH KALLMYER: What we found was really sort of shocking, that only 45 percent of people with Alzheimer's report that their doctor told them you have the disease.

HAMILTON: Patients with common cancers said they were told more than 90 percent of the time. To make sure the Alzheimer's patients hadn't just forgotten something their doctor had said, the group also looked at survey responses from family members and other caregivers. The results were only slightly better. Keith Fargo, who directs scientific programs at the Alzheimer's Association, says one reason doctors cite for not telling patients is very short appointment times.

KEITH FARGO: It's difficult to disclose a diagnosis of a fatal brain disease in just a few minutes, and so you have to have time and tools to do that correctly.

HAMILTON: Fargo says another explanation is the lack of effective treatments and fear that the diagnosis will provoke a highly emotional response. But he says doctors' behavior needs to change for their patients sake.

FARGO: By the time you get to a point where you can be diagnosed with Alzheimer's disease, you're already experiencing a loss of some of your cognitive functions. And that's distressing, and to not know why is confusing and can be frightening.

HAMILTON: A bad outcome. Dr. Pierre Tariot, who directs the Banner Alzheimer's Institute in Phoenix, agrees that patients need to be told even though it's not an easy thing to do. Tariot says he doesn't remember the first time he had to inform a patient, but he's certain it didn't go well.

PIERRE TARIOT: I'm sure that I squirmed. I'm sure that I was uncomfortable and somewhat vague and evasive. I'm sure that is true.

HAMILTON: Tariot says he's gotten better, in part because he's learned to anticipate what patients and family members will ask him.

TARIOT: Is there anything we can do? Am I going to get worse? When am I going to die? Or when is she going to die? Will it affect the children? Those are the most representative questions.

HAMILTON: Tariot says he's also realized that his patients really want to know what is happening to their brains.

TARIOT: People are relieved, not distressed. They're relieved to have somebody who knows what's going on and gives a message of at least some hope and a message that we will stand by and navigate this process with you.

HAMILTON: Beth Kallmyer of the Alzheimer's Association says when patients aren't told early on, they lose some important opportunities.

KALLMYER: They can't plan for the future. They can't make those critical legal and financial plans. You know, we want them to be able to, say, participate in a clinical trial, go on an anniversary trip a little bit earlier before the disease progresses.

HAMILTON: The new report appears in the 2015 edition of the Alzheimer's Association's "Facts And Figures" publication. Jon Hamilton, NPR News. Transcript provided by NPR, Copyright NPR.