When you or someone you care about is diagnosed with dementia, it’s natural to want to learn as much as possible. It’s important to educate yourself about the disease, symptom management, research opportunities, and community resources for ongoing support. However, the quantity of information can be overwhelming – especially in today’s digital media landscape. It can be tricky to tell pseudoscience from credible scientific evidence.
Our ability to discern fact from fiction can also be impacted by emotion and bias, so it’s important to be aware of the risks associated with low-quality health information: threats to health and safety, financial exploitation, and the delay of access to effective treatment, among others. Alzheimer’s San Diego recently held a special workshop called Quacks or Facts? Making sense of the latest Alzheimer’s “breakthroughs” to address these important issues. Keep reading to learn some of the key takeaways from this class.
Safely navigating online search results
When searching online for health information, you will encounter a variety of sources with disease information: commercial websites, academic websites, nonprofit or governmental websites, personal or organizational blogs, social media sites, and online forums. Search engines use mathematical formulas to determine what results you will see, and in what order. Not all sources are created equal, so it’s important to evaluate the quality of the source using the 5 W’s:
- WHO funds and operates the website?
- WHAT does it say? Does it sound too good to be true?
- WHEN was the information posted, or last updated?
- WHERE did the information come from?
- WHY does this website exist?
Here are some trustworthy, reliable online sources for general health information:
- Centers for Disease Control
- Cleveland Clinic Health Library
- Herrick Community Health Care Library
- Mayo Clinic
- National Institutes of Health
- Stanford Health
- U.S. Department of Health and Human Services
- U.S. National Library of Medicine
Types of studies and evidence
Randomized double blind placebo control (RDBPC) studies are considered the “gold standard” of experimental research study design. When reading about the results of a study, look for key information including the sample size (how many people participated in the study) and the methodology used. Is the study design clearly described, so that other researchers can repeat it, and prove its validity? Case studies or personal accounts may provide what is called “anecdotal evidence” of the usefulness of a treatment, but evidence collected through rigorous experimental testing (known as “empirical evidence”) is needed before a treatment can be safely recommended. Keep in mind that the term “clinically proven” has no official definition, and may be used by any marketer or advertiser.
Evaluating the credibility of a source
Whether you’re accessing information in print or online, it’s important to determine the credibility of the author, their credentials, and the publisher of the material. Scholarly publications feature peer-reviewed journal articles written by academics or experts in their fields, discussing the detailed results of scientific research. Popular publications such as magazines feature articles that are written for the general public, and may be meant for entertainment rather than factual information.
There are also “predatory publishers” with publications whose names sound very legitimate, and closely resemble those of a well-known scholarly journal. Here are several scholarly, peer-reviewed scientific journals currently publishing relevant research on dementia:
- Aging and Disease
- Alzheimer’s & Dementia
- Alzheimer’s & Dementia: Diagnosis, Assessment & Disease Monitoring
- Alzheimer’s & Dementia: Translational Research & Clinical Interventions
- Alzheimer’s Disease and Associated Disorders
- Alzheimer’s Research & Therapy
- American Journal of Alzheimer’s Disease and Other Dementias
- The American Journal of Pathology
- Current Alzheimer Research
- International Journal of Alzheimer’s Disease Journal of Alzheimer’s Disease
- Journal of Alzheimer’s Disease Reports
This is far from an exhausted list of reliable sources, but is a good place to start.
Alzheimer’s San Diego is here for you if you want to learn more about this topic, and to support anyone impacted by dementia. Get connected by calling 858.492.4400 or emailing firstname.lastname@example.org. To see our upcoming classes and workshops, click here.