On-line Alzheimer's Suggestions Often Problematic

By Jane Farrell

Online “resources” for preventing Alzheimer’s are not only problematic but could be steering people in the wrong direction, according to research from the University of British Columbia.

In a survey of online articles about preventing Alzheimer’s disease, UBC researchers found many websites offered poor advice and one in five promoted products for sale—a clear conflict of interest.

“The quality of online information about preventing Alzheimer’s disease ranges,” said Julie Robillard, assistant professor of neurology at UBC with the Djavad Mowafaghian Centre for Brain Health and the National Core for Neuroethics. “The few websites offering high-quality information can be hard to distinguish from the many low-quality websites offering information that can be potentially harmful.”

Today, 564,000 Canadians are living with dementia but the number is expected to grow to nearly one million in the next 15 years as the population ages. Alzheimer’s disease is the most common form of dementia but there is a lot of uncertainty about what causes the disease and how to protect yourself from it. Previous research has shown that about 80 per cent of people, and half of older adults, turn to the Internet for health information.

Robillard and undergraduate student Tanya Feng examined almost 300 online articles about preventing Alzheimer’s disease. They found websites with high-quality information often provided high-level advice suggesting individuals consider lifestyle modifications like managing their diabetes and exercising regularly.

The researchers identified a few common red flags for low-quality information, such as websites recommending products for sale alongside the content. They found this type of conflict of interest in one in five websites. Other signs of low-quality information included websites with very specific recommendations and nutritional information.

“Many red flags were not specific to what they were saying, but rather how they were saying it,” said Feng. “For example, using strong language like ‘cure’ or ‘guarantee’, promoting their own products, and relying on anecdotal evidence instead of empirical research is suggestive of poor-quality information in online dementia information.”

The researchers say this type of information can also be costly with people sinking money into products with little or no scientific evidence to show that they are effective. More concerning, however, is that the advice can cause anxiety and may impact the physician-patient relationship. Patients may sometimes feel they cannot trust their physician if they disagree with the recommendations or patients may not inform their physicians that they have changed their daily habits.

The researchers are developing a tool called QUEST, a simple test of six questions that anyone can use to help people recognize high-quality information online.

The study was published in the Journal of Alzheimer’s Disease.