New research suggest less than half of people with Alzheimer's diseases were informed of their diagnosis.
The Alzheimer's Association's 2015 Alzheimer's Disease Facts and Figures report found only 45 percent of individuals suffering from Alzheimer's disease or their caregivers were told about the diagnosis by a doctor.
"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, Vice President of Constituent Services for the Alzheimer's Association. "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. When a diagnosis is disclosed, they can better understand the changes they are experiencing, maximize their quality of life, and often play an active role in planning for the future."
The findings also show people with Alzheimer's or their caregivers were more likely to be told about their condition by their doctor after the disease had already become more advanced. This can be problematic because learning about the diagnosis after the disease has progressed could mean the individual has a decreased capacity to make decisions regarding care plans and financial matters.
One of the most common reasons given by physicians for not disclosing an Alzheimer's diagnosis was fear of causing emotional distress, but studies have shown that Alzheimer's patients rarely suffer from emotional problems as a result of learning about their condition.
"Based on the principles of medical ethics, there is widespread agreement among health care professionals that people have the right to know and understand their diagnosis, including Alzheimer's disease," said William Klunk, M.D., Ph.D., Chair of the Alzheimer's Association Medical and Scientific Advisory Council. "The findings from this report shine a light on the need for more education for medical students and practicing health care providers on how to effectively make and deliver an Alzheimer's diagnosis."
