Do you sometimes not know why you walked into a room?
Do you often forget your ATM PIN number?
Have you ever forgotten the weather report you heard yesterday?
If you answered yes to any of these questions, you may have Alzheimer's disease … but probably not.
A number of online tests for Alzheimer's disease have cropped up on the Internet in recent years, claiming to be able to diagnose the much-feared condition through a Web surfer's answers to 10 or 20 questions, usually focused on memory. But a new report released today at the Alzheimer's Association's International Conference in Boston finds such claims to be scientifically invalid and characterizes their hosts 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, a postdoctoral fellow at the National Core for Neuroethics at the University of British Columbia in Vancouver, asked an expert panel — including geriatricians, neuropsychologists and neuroethicists — to rate 16 representative, freely accessible online tests for Alzheimer's disease. The experts scored the sites on scientific validity and reliability; human-computer interaction; and a range of ethical factors. 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, according to the Alzheimer’s Association, 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 of Robillard's had 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 inspired her to take a closer look at the type of material about the condition available on the Web. "I took a peek at these diagnostic tests and it struck me as an important issue to address," she says. "What we found online was distressing and potentially harmful."
It's important to know, first of all, 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.
It's not surprising that Alzheimer's disease has been the focus of such sites, Robillard says. "It has a couple of interesting features that makes it especially vulnerable to this kind of site." First, it's not like diabetes, which has to be diagnosed with a blood test. "And people think it's easy to test memory," she says, adding that there's a widespread misconception that "if you have bad memory, there's Alzheimer's disease."
For all 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. Robillard's study does not identify any of the evaluated sites by name. "They were fairly homogenous," she says, "and the point is to say that, as a whole, there are serious issues with these tools." But she says that they are "a mix of organizations and individuals. It's not solely scam vitamin sellers."
The tests, Robillard found, are often worded in ways that almost assure doubts are raised in the minds of the user. "Some tests make it really hard for you to score well so that at the end you'll buy the tools and products they might be selling," she says. "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.
Even computer-savvy adults may be fooled by some of the Alzheimer's testing sites. "It's not always obvious that these are commercial sites," Robillard says. "It's very difficult to tell — and if I had a hard time, I imagine others would have a hard time as well."
All other issues aside, these sites are scary. Doctors take care when they share a diagnosis of dementia with a patient or family. "Should people be alone in their home when they find out they have Alzheimer's disease?" Robillard asks. Even if the diagnosis is not real, the fear is. "That's part of the whole predatory marketing strategy. It's one of many possible harms."
Robillard hopes her study shines new light on unethical practices. "It's absolutely a small part of a larger problem," she says.
The preponderance of invalid diagnostic Web sites has wider implications. "When you're told online that you have Alzheimer's disease," Robillard says, it's only logical that you'd race to your doctor with the news. "That creates a burden on an already burdened health care system as people respond to a result with a demand for health care services that may or may not be appropriate."
Sharing her results with physicians who treat Alzheimer's, Robillard believes, could help enlighten them about the scope of the issue. "People are going to come into their clinics who may have taken these tests and they could have a printout and say, 'I have a 46! I have Alzheimer's!'" she says.
Even if someone takes an online test and gets a good result, it could negatively impact their care, Robillard adds. Some sites advise people who get a perfect score on the test that they don't need to consult with their doctor about cognitive issues for a year or more, but those positive scores don't prove there are no underlying issues that need addressing. A quiz site's results could lead you to delay getting care you actually need.
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. "Just don't expect to find a diagnostic tool," Robillard says.
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.