Alzheimer’s diagnosis: Would you want to know?

If you had Alzheimer’s disease, would you want to know? It’s a tough decision for families and physicians alike. In 2015, the Alzheimer’s Association found that only 45 percent of Medicare beneficiaries diagnosed with Alzheimer’s had been told their diagnosis by a physician.

But a new British survey shows most people want to know, even though the disease is terminal. In a UK poll of more than 2,000 people as part of the annual Alzheimer’s Research UK Appeal, 76 percent of respondents said they would want to receive a formal diagnosis from a physician, even though there is currently no treatment for the disease. People were more likely to want the knowledge of a diagnosis if they were 45 or older, or if they had experience with a loved one’s dementia.

Diagnostic testing also got the stamp of approval—nearly 40 percent of respondents said they would be willing to take a test even if no treatment existed, and another 32 percent said they’d take a test if it came bundled with preventative strategies or treatment.

Many respondents said the knowledge would be a welcome explanation of forgetfulness and behaviors. “It is helpful to know what it is. Then you can explain to other people,” Trina Armstrong, 71, told the UK’s Financial Times. “I would prefer family and friends to know what is wrong with me, for example why I couldn’t play cards. You get sympathy and understanding — and you look for ways of dealing with the information.”

Pamela Tabar

Pamela Tabar was editor-in-chief of I Advance Senior Care from 2013-2018. She has worked as a writer and editor for healthcare business media since 1998, including as News Editor of Healthcare Informatics. She has a master’s degree in journalism from Kent State University and a master’s degree in English from the University of York, England.