Nobody likes to deliver bad news. But a national advocacy group is raising concern over the failure of doctors to inform patients of Alzheimer’s disease diagnoses.
A report from the Alzheimer’s Association found that only 45 percent of Alzheimer’s patients said they were told of their diagnosis, versus 90 percent of people with four common types of cancer.
“In any individual case you can easily imagine a whole host of reasons for withholding, but certainly a failure to communicate it on such a broad level is surprising,” said Jennifer Lingler, director of education at the University of Pittsburgh’s Alzheimer Disease Research Center and a professor in Pitt’s School of Nursing.
The study was conducted by analyzing responses to the Medicare Current Beneficiary Survey between 2008 and 2010. Survey recipients were asked whether they had been told by a doctor that they had various conditions, and those responses were compared to whether Medicare claims had been submitted for those patients for those conditions. The data were then used to calculate disclosure rates.
For breast cancer, 96 percent of patients who had claims submitted for the disease said that a doctor told them that they had the disease. For high blood pressure, the disclosure rate was 84 percent. And for Alzheimer’s disease, it was 45 percent.
If the patient was not capable of answering questions themselves, a caregiver completed the survey for them.
“The finding is that physicians are afraid to cause emotional stress,” said Michele Donovan, a spokeswoman for the Alzheimer’s Association Greater Pennsylvania Chapter. “We really feel that it’s important for physicians to tell the truth about the disease so that people can make the best decisions.”
About 5.3 million Americans have Alzheimer’s disease, including 270,000 in Pennsylvania, according to the report, “2015 Alzheimer’s Disease Facts and Fiction.”
Ms. Lingler said that there are isolated individual circumstances where it might be warranted not to share the information with the patient at that moment, such as if they are depressed to the point of being suicidal or if they’d previously asked not to be informed of such a diagnosis. But given the prevalence of people who haven’t been told of their conditions, physicians are likely declining to share information in other situations as well.
“I don’t think any clinician goes out with the intention of deceiving a patient or a family,” she said. “It’s a really difficult conversation to tell a person they have an incurable disease that will have a major impact on their life going forward — that’s really tough.”
But giving information to patients as early as possible is important not just for ethical reasons, she said, but also to allow patients to make decisions to plan for the future.
“Certainly, early in the course of Alzheimer’s disease, a person can make important choices about their future — where one wants to live and how one wants to die,” she said. There are also drugs meant for people with mild to moderate Alzheimer’s that should be started as soon as possible, she said.
Her research has found that an Alzheimer’s diagnosis can sometimes serve as a relief in explaining the reasons for frustrating symptoms.
That said, Ms. Lingler can understand why even a disease such as cancer might be easier for a doctor to disclose.
“There’s just kind of a societal shift around cancer — there’s that battlefield mentality that so many of the advocacy organizations have brought into our culture, and there generally are tools to begin fighting it,” she said. “With Alzheimer’s disease, it’s really hard to hold your patient’s hand and say we’re going to fight this together. What are your tools? What are you going to fight it with?”
While there are drugs that have been used for decades to treat symptoms of Alzheimer’s disease, there is nothing that has been approved by the Food and Drug Administration to combat the disease itself, she said.
The diagnosis study noted its dramatic results have limitations.
“One problem common to many studies of people with Alzheimer’s disease and other causes of dementia is that the diseases themselves may affect the ability of the affected person to remember the diagnosis,” said the report. It notes, however, that disclosure rates in the study were higher in patients that had a more severe diagnosis.
Anya Sostek: firstname.lastname@example.org or 412-263-1308.