Most Alzheimer's Patients Not Told About Their Diagnosis

Your doctor may know you have Alzheimer’s disease – and could choose not to tell you.

A report released Tuesday by the Alzheimer’s Association shows that just 45 percent of people with Alzheimer’s disease or their caregivers are told their diagnosis by their doctor. When the data excluded information shared with caregivers, the disclosure rate dropped to 33 percent.
"How is it OK that someone is going into their doctor's office and not getting a diagnosis for a fatal, progressive disease?" says Beth Kallmyer, vice president of constituent services at the Alzheimer’s Association.

Using data from government surveys conducted in 2007, the Healthy People 2020 report has set a goal of increasing the percentage of patients and caregivers who have been informed of their Alzheimer diagnosis, from 34.8 percent to 38 .3 percent. While the Alzheimer's Association data shows that the disclosure rate, at 45 percent, is past the government's target, the Association continues to advocate for more disclosure.

There is no legal obligation for doctors to tell patients they have Alzheimer's – a fatal disease that is the sixth-leading cause of death in the U.S. Medical ethics dictate that doctors tell the truth in diagnosis, Kallmyer says; the Alzheimer's Association advocates that doctors inform patients of their diagnosis.

Many doctors do not inform patients of their diagnosis because they do not want to cause the patient emotional distress, the report found. Yet, according to the report, patients who find out their diagnosis often do not become depressed or have other long-term emotional problems.

“This is a fatal disease, and it is pretty difficult to get the diagnosis. But there are lots of other fatal diseases a doctor give diagnoses for,” Kallmyer points out.

Keith Fargo, director of scientific programs and outreach for medical and scientific relations at the Alzheimer's Association, says when patients experience forgetfulness and other symptoms, they want to know that there is a reason. “You’re experiencing [the symptoms] whether you are told the diagnosis or not,” he explains. “Now you can put a name on it, now you can plan for your long-term care, now you can make your legal and financial planning, and put together a care team. … There are lots of benefits to learning your diagnosis.”

Another finding in the report show doctors are more likely to tell patients their diagnosis when the disease became more advanced, a fact the association found particularly concerning. Alzheimer’s is a progressive brain disease, which interferes with thoughts, memory and language. As it develop s, a person can become dependent on others for daily living. People with Alzheimer's can live for about four to 20 years as the disease continues to kill their nerve cells; the worsening symptoms could make someone unable to seek care and treatment if they don't do so early on.

“If doctors don’t give people the diagnosis, they are robbing people of the opportunity of making those decisions,” Kallmyer says. "They don't have a right to do that."

Other reasons medical providers cited for not disclosing the disease include diagnostic uncertainty, time constraints, lack of support, communication difficulties, patient or caregiver wishes and stigma. The Alzheimer's Association says not enough resources and education are in place to help medical providers in presenting the diagnosis to patients.

The fact that many more report being told their diagnosis as the disease has progressed helps to refute that survey participants may have forgotten an Alzheimer's diagnosis because of complications of the disease, according to the report. The authors do acknowledge, however, that when told their diagnosis some may not understand it fully or may use denial to cope. They concluded it was not possible to make the distinction using the data provided.

According to the report, an estimated 5.3 million Americans have the disease in 2015. Barring the development of medical breakthroughs, the number is projected to rise to 13.8 million by 2050.

The association found the figures for Tuesday's report by dividing the number of people told their diagnosis by the number of people with Alzheimer’s claims on their Medicare forms.

Health care providers are not required to disclose all information in Medicare claims to patients, and some who review their claims may see the medical code for their diagnosis without necessarily knowing what the code stands for.

Medicare and Medicaid currently spend $153 billion each year on managing Alzheimer's. Investment in discovering new treatments or cures, meanwhile, lags behind that of other diseases like HIV, whose complications kill nearly 7,700 Americans a year, and cancer – the No. 2 cause of death in the U.S. The Alzheimer’s Association has asked Congress for an additional $300 million in funding for fiscal year 2016.

Doctors have a history of withholding diagnoses from their patients. In the 1950s and '60s, patients were not always told if they had cancer, because doctors thought there were no effective treatments and the word “cancer” itself was taboo, Kallmyer said in a statement.

Now, people with the most common cancers – breast, colon, lung and prostate – reported rates of disclosure of 90 percent or more. Unlike with Alzheimer's, however, there are effective treatments for cancer that can extend a person's life. Still, there is a general consensus among medical providers that patients have a right to know and understand their diagnosis. In one study cited in the report, a quarter of health care providers indicated that lack of effective treatments was a factor in choosing not to disclose an Alzheimer's diagnosis.

"Over time that stigma was reduced," Kallmyer says of past cancer diagnosis practices. "It needs to change for Alzheimer's."