Many online tests for Alzheimer’s disease have cropped up on the Internet claiming to be able to diagnose Alzheimer's Disease through answering 10 or 20 questions, usually focused on memory. But a new report released today at the Alzheimer’s Association’s International Conference finds such claims to be scientifically invalid and characterizes them as unethical and often predatory in their pursuit of profits through sales of sketchy prevention tools to a beleaguered, vulnerable older population.
The study’s lead author, Julie Robillard, at the National Core for Neuroethics at the University of British Columbia, asked an expert to rate 16 representative, freely accessible online tests for Alzheimer’s disease. Three-quarters of the tests were rated as “poor” or “very poor” for scientific validity and reliability and all 16 got “poor” or “very poor” grades for their ethical standards, including overly dense or absent confidentiality and privacy policies, failure to disclose commercial conflicts of interests and failure to word test outcomes in an appropriate or ethical manner. (The majority of the sites were rated as “fair” for appropriateness of human-computer interface for an older adult population.)
The sites hosting the online tests that were reviewed for the study had unique monthly visitors ranging from 800 to as many as 8.8 million.
More than 5 million Americans live with Alzheimer’s disease a number the group estimates could reach 13.8 million by 2050. It is the sixth-leading cause of death in the United States.
The Impact of Fake Diagnoses
Clinical colleagues have noticed an uptick in the number of older adults coming to their waiting rooms claiming to have read something online that convinced them that they had Alzheimer’s or were at high risk. Their stories were the inspiration for the study.
It’s important to know that there is no valid online test for Alzheimer’s disease, which is notoriously difficult to diagnose with accuracy. Doctors rely on a complex set of mental and physical tests, sometimes including brain scans, to determine if a patient has the condition. “There is no test that you can do sitting at a computer by yourself,” Robillard says.
That hasn’t stopped companies from launching “diagnostic” sites, some with quizzes featuring 10 or 20 questions, often quite general, with vague answers that are seemingly designed to yield maximum fear and concern in the online audience.
For these reasons, Robillard says, “These tools have very low scientific validity or scientific reliability. If people have concerns, it’s an understandable behavior to try to find information online. But when it comes to seeking a diagnosis, the tests are not an appropriate solution.”
Beyond the obvious ethical problems with purporting to diagnose Alzheimer’s online, Robillard says, there are further, serious concerns. Many of the test sites are hosted by companies or groups that market products or tools claiming to help prevent the disease.
The tests are often worded in ways that almost assure doubts are raised in the minds of the user. “It’s a predatory marketing strategy in a population that’s vulnerable to start with.” She cited a recent widely publicized UCLA study that found older people may be more susceptible to fraud and scams because of changes in the aging brain that weaken the ability to discern untrustworthy sources.
All other issues aside, these sites are scary. Doctors take care when they share a diagnosis of dementia with a patient or family.
Robillard hopes her study shines new light on unethical practices. “It’s absolutely a small part of a larger problem,” she says.
Finding Reliable Information
Of course, families should not avoid the Internet altogether when seeking information about Alzheimer’s and dementia. The Alzheimer’s Association and government sites like alzheimers.gov provide useful facts and explanations, along with links to other resources that have been screened for accuracy and legitimacy.
The new study also does not call into question legitimate sites offering lists of criteria which caregivers and adult children can use to help determine if they should be concerned that a loved one may be suffering from dementia or Alzheimer’s. Brochures like this one from the Alzheimer’s Association do not pretend to diagnose any condition, but encourage people to talk to a doctor if they have concerns about someone’s mental state.
For information on Alzheimer’s Care, contact Spring Arbor.