SEP 21, 2016 4:18 AM PDT

Getting the Best Information on Alzheimer's Disease

A diagnosis of Alzheimer’s disease (AD) is a big deal, for the patient and also for family members who now have to manage care for them. There is a huge amount of information on AD, what to expect after diagnosis, possible causes and treatments, and while information is power, there is the danger of information overload as well. With so much to sift through, patients and families can feel overwhelmed at a time when it’s crucial to understand what’s happening. What’s the best way to navigate this wealth of information?
 Navigating online information for Alzheimer's Disease
First, start with the facts. According to the National Institute on Aging, Alzheimer’s disease is an irreversible, progressive, neurodegenerative disease that slowly destroys the memory banks of the brain and causes significant cognitive decline. In later stages patients can literally forget how to perform every day tasks like getting dressed or preparing food. Symptoms normally start to appear when a patient is in their mid-60s, but it can happen earlier. When symptoms appear later, many brush the off as just normal age related forgetfulness. It’s estimated that about 5 million Americans currently have AD. It is the 6th leading cause of death in the US, but some think it may soon move up to 3rd, just behind cancer and heart disease among older Americans. It is the most common cause of dementia among those over 50. There is no cure.
 
There is much debate about the cause. Most researchers agree that beta amyloid plaques in the brain are key factors. Genetics are also involved and there have been connections made to diet, vascular health, lifestyle habits and exposure to pollutants. Between the information on the disease, it’s possible causes and the different kinds of behaviors and progression that each patient might experience, it’s a lot to take in.
 
A research study undertaken at the University of British Columbia sought to simplify the process of getting good information. They knew that since 80% of people are known to go online for health information, there was a good chance some of that information would be of questionable quality. Neurology professor Julie Robillard, at the UBC Djavad Mowafaghian Centre for Brain Health and the National Core for Neuroethics and UBC undergrad student Tanya Feng chose 300 articles on the topic of Alzheimer’s prevention that they found by surfing hundreds of different websites.
 
Many of these articles contained very poor advice and were often merely sales pitches for products like computer games and dietary supplements. Approximately 1 in 5 of the sites promoted products for sale, which calls into question the information they provide about the disease. In a press release on the survey, Feng stated, “Many red flags were not specific to what they were saying, but rather how they were saying it. 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.”
 
Robillard added, “The quality of online information about preventing Alzheimer’s disease ranges. 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.” The team is developing a set of six questions in an easy to use online tool called QUEST to help people weed out the good information from the bad. Their research is published in the Journal of Alzheimer’s Disease. The video below explains what to look for when researching Alzheimer’s online.

 Sources: National Institute on Aging, University of British ColumbiaJournal of Alzheimer’s Disease
About the Author
  • I'm a writer living in the Boston area. My interests include cancer research, cardiology and neuroscience. I want to be part of using the Internet and social media to educate professionals and patients in a collaborative environment.
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