Doctors Don’t Tell Patients They Have Alzheimer’s Disease

Just when you thought the age of paternalistic medical care was over, when transparency and communication were seen as essential instead of bothersome aspects of the doctor-patient relationship… Now comes a disheartening report that doctors are withholding critical health information from their patients.

Doctors for more than half of people with Alzheimer’s disease have not told them, or their caregivers, that they have the condition, according to a survey by the Alzheimer’s Association.

But more than 9 in 10 people with the four most common cancers (breast, colorectal, lung and prostate cancer) said they had been told about their diagnoses.

Beth Kallmyer, the association’s vice president of constituent services, told the Wall Street Journal (WSJ), “We are alarmed. This means that people are being robbed of the opportunity to make important decisions about their lives.”

The study compared responses from Medicare beneficiaries with Medicare provider claims for their care. Among other questions, the survey asked what medical conditions a doctor told the respondent he or she had.

Of the patients whose doctors included an Alzheimer’s diagnosis in their claims, 45 in 100 said that they’d been told they had the disease; 9 in 10 with cardiovascular disease or breast, prostate or colorectal cancer had been informed, as had more than 7 in 10 with Parkinson’s disease.

When caregivers responded to the survey on behalf of Alzheimer’s patients, slightly more than half said they knew of the diagnosis, versus only 1 in 3 patients who answered for themselves.

According to the report:

  • About 5.3 million Americans have Alzheimer’s disease.
  • About 5.1 million are 65 or older, and about 200,000 people younger than 65 have younger-onset Alzheimer’s.
  • Barring the development of medical breakthroughs, by 2050, 13.8 million people will have Alzheimer’s.
  • About 473,000 people age 65 or older will develop Alzheimer’s in the U.S. this year; someone develops Alzheimer’s every 67 seconds.
  • Two-thirds (3.2 million) of Americans older than 65 with Alzheimer’s are women.
  • Alzheimer’s disease is the sixth-leading cause of death in the U.S., and the fifth-leading cause of death for people 65 and older.
  • From 2000 to 2013, the number of Alzheimer’s deaths increased 71%; deaths from heart disease during that period decreased 14%; stroke deaths decreased 23% percent; prostate cancer deaths decreased 11%; breast cancer deaths decreased 2%.
  • Alzheimer’s is costly: Total 2015 payments for caring for patients with Alzheimer’s and other dementias are estimated at $226 billion.

There is no cure for Alzheimer’s, and this isn’t the first study to show that doctors sometimes withhold news about a patient’s diagnosis because they’re uncertain about it, don’t have time discuss it fully or are afraid of causing emotional distress.

But best practice, according to the Alzheimer’s Association and physician guidelines is to inform patients of their diagnosis in sensitive, clear terms. The goal is to prepare them for what to expect and so that they can participate in decisions about their care for as long as possible.

Alzheimer’s experts, according to the WSJ story, say many patients suspect they have the disease before they are diagnosed, and that learning the truth can be a relief. “You can give people hope saying there are medications that can slow the progress, there are research studies and the course is highly variable. Some people live 10 years or more with it,” P. Murali Doraiswamy, director of the Neurocognitive Disorders Program at Duke University Medical Center, told the paper.

If you or a loved one seeks medical care over concerns about your cognitive status, especially if you’re older, make it very clear to your doctor that you want a full and frank discussion about what he or she finds. Avoid online and other Alzheimer’s self-help tests.

To learn more about Alzheimer’s disease, visit the association’s website.

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