Online tests for Alzheimer’s disease are readily available, but a panel of experts including geriatricians, human-computer interaction specialists, neuropsychologists and neuroethicists has determined many of them don’t hold up in terms of scientific validity and reliability. In fact, all of the 16 tests they studied scored “poor” or “very poor” when the panel considered ethical factors like privacy policies, conflicts of interest, and the words used to report the outcome of the tests.
“Self-diagnosis behavior in particular is increasingly popular online, and freely accessible quizzes that call themselves ‘tests’ for Alzheimer’s are available on the Internet. However, little is known about the scientific validity and reliability of these offerings and ethics-related factors… Frankly, what we found online was distressing and potentially harmful,” said Julie Robillard, Ph.D., a postdoctoral fellow at the National Core for Neuroethics at the University of British Columbia in Vancouver.
These findings were reported at the Alzheimer’s Association International Conference in Boston.
According to the Alzheimer’s Association 2013 Alzheimer’s Disease Facts and Figures report, more than 5 million Americans are living with Alzheimer’s disease. By 2050, the number of people with Alzheimer’s could reach 13.8 million. Other estimates suggest that number could be high as 16 million.
The 16 online Alzheimer’s tests studied were found on sites with unique monthly visitors ranging from 800 to 8.8 million. To determine the reliability and validity of the tests, the expert panel considered the content of each test and the likelihood each one could produce an accurate result, reviewed the questions to see if they were based on current, peer-reviewed evidence, and tried to determine whether one person taking the tests repeatedly would receive similar results. 12 of the 16 tests scored “poor” or “very poor” for these factors and were deemed “not useful for the diagnosis of Alzheimer’s disease,” according to Robillard.
The only area where a majority of the tests (10) performed in the “fair” range was with regard to the computer interface and it’s appropriateness for an older adult population. In short, the instructions were clear, fonts were easy to read, and completing the test didn’t require advanced computer knowledge.
“Freely accessible diagnostic tests that lack scientific validity and conform poorly to guidelines around consent, conflict of interest and other ethical considerations have the potential to harm a vulnerable population and negatively impact their health,” Robillard said.
If you’re concerned you or a loved one may be experiencing changes in memory that might be the early signs of Alzheimer’s, talk to your doctor. He or she can administer a brief memory screening test and do a complete exam to determine the cause of any problems that may be identified.