Study finds physicians fail to tell patients of an Alzheimer’s diagnosis

April 02, 2015

A report published by the Alzheimer’s Association last week found that physicians are more likely to tell patients of their diagnosis if they have cancer than if they have been diagnosed with Alzheimer’s.

The”2015 Alzheimer's Disease Facts and Figures” report found that just 45 percent of Medicare patients diagnosed with Alzheimer’s said they were informed of the diagnosis by their doctor. In contrast, more than 90 percent of Medicare patients with cancer said they were told.

“These disturbingly low disclosure rates in Alzheimer’s disease are reminiscent of rates seen for cancer in the 1950s and ‘60s, when even mention of the word cancer was taboo,” said Beth Kallmyer, Alzheimer’s Association vice president of constituent services. “It is of utmost importance to respect people’s autonomy, empower them to make their own decisions and acknowledge that people with Alzheimer’s have every right to expect truthful discussions with their physicians.“

The report also found that people with Alzheimer’s or their caregivers were more likely to report that they were told their diagnosis after the disease had become more advanced.

According to Kallmyer, this is problematic; learning the diagnosis later in the course of the progressive brain disease may mean the person’s capacity to participate in decision-making about care plans or legal and financial issues may be diminished, and their ability to participate in research or fulfill lifelong plans may be limited.

One of the reasons most commonly cited by health care providers for not disclosing an Alzheimer’s diagnosis was fear of causing the patient emotional distress. However, according to the new report, “studies that have explored this issue have found that few patients become depressed or have other long-term emotional problems because of the [Alzheimer’s] diagnosis.”

According to the Alzheimer’s Association, telling the person with Alzheimer’s the truth about his or her

diagnosis should be standard practice. Disclosure can be delivered in a sensitive and supportive manner that avoids unnecessary distress.

Click here to read the full text of the report. It has also been published in the March 2015 issue of Alzheimer’s & Dementia: The Journal of the Alzheimer’s Association (volume 11, issue 3).

California Medical Association Members (CMA) may also want to read On-Call #3502, “Physician-Patient Communication,” which discusses the importance of effective communication. CMA’s On-Call documents are available free to members in the CMA online health law library. Nonmembers can purchase documents for $2 per page.

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