By Chris Adams

Alzheimer’s disease and other dementias have been widely studied by the medical community and repeatedly showcased in the popular media. But that hasn’t necessarily translated to people who may have the disease getting a diagnosis from their physicians.

In a session with National Press Foundation fellows, Dr. Halima Amjad of Johns Hopkins University detailed the phenomenon of undiagnosed dementia and how widespread it is.

Amjad said one reason for studying undiagnosed dementia is simple: safety. When dementia goes undiagnosed, she found in one study, the risk of unsafe activities goes up.

“What’s surprising to a lot of people is how many people are living with undiagnosed dementia,” Amjad said.

Using data from the National Health and Aging Trends Study, which is supported by the National Institute on Aging of the National Institutes of Health, Amjad and her colleagues found that people who showed signs of dementia but hadn’t been diagnosed  were twice as likely as those with a diagnosis to engage in potentially unsafe activities. These included driving, cooking, and managing finances and medication.

Overall, she found, 56% of older adults meeting criteria for probable dementia do not report a physician’s diagnosis of dementia. It might be that they hadn’t been diagnosed that way, or that they had been but were unaware of the diagnosis or refused to accept it. That group is more likely to engage in potentially unsafe activities than those who report a dementia diagnosis.