It all started when clinical colleagues of Julie Robillard noticed older patients coming in to say they’d been diagnosed with Alzheimer’s disease. The diagnosis, though, didn’t come from any doctor; it came from a self-administered online test.
That got Robillard, a postdoctoral fellow at the National Core for Neuroethics at the University of British Columbia in Vancouver, to pull together a team of Canadian experts in the fields of geriatrics and dementia to assess these diagnostic tools.
”What we found online was distressing and potentially harmful,” she said during a presentation last week at the annual Alzheimer’s Association conference in Boston.
The panel reviewed 16 freely accessible Web-based tests for Alzheimer's disease - with some of the sites pulling in 8.8 million visitors a month. The vast majority, 12 of the 16, earned “poor” or “very poor” ratings for overall scientific validity and reliability. All 16 tests scored "poor" or "very poor" when evaluated on ethics.
"Little is known about the scientific validity and reliability of these offerings and ethics-related factors including research and commercial conflict of interest, confidentiality and consent,” the researcher said. There’s also the common misconception, particularly among older adults, that a poor memory is synonymous with Alzheimer’s.
This point was underscored in another presentation at the conference in which researchers warned physicians to question patients more closely to determine whether their memory problems are unusually severe or progressive for the patients' age and situation.
"It is important that we do not give the impression that elderly subjects with a subjective complaint are on their way to Alzheimer's disease," said Frank Jessen, PhD, of the University of Bonn, in a published report.
“Everything you see online is not true,” warned Teri Shirk, the executive director of a Kentucky-based Alzheimer’s Association chapter. She too advises against the online tests. “You can go on there and you can pass those tests or you can fail those tests, and they really aren’t telling you anything.”
Instead, all experts advise people, particularly senior citizens, to see their primary care health provider if they suspect their memory slips are becoming more frequent or more pronounced. Your doctor can perform physical and mental tests to help narrow the cause.
Read More: Don't Trust Online Tests for Alzheimer's (Forbes)