Can We Trust “Breakthroughs” in Memory Loss, Cognitive Decline, and Dementia?
Once we get that Medicare card (Yes!) and start worrying about memory issues (Uh, oh!), we become more aware of the “nuggets of hope” that appear so frequently in our information sources.
Here’s the Problem: They can’t all be true.
How Do We Know What To Believe?
#1 Recognize Unreliable Sources of Information
A caution light should flash as soon as you notice that someone is attempting to win your trust. The smoothest voice, the most reassuring celebrity, and the excitement over a “recent breakthrough” may not be a reliable source. “Preliminary” (aka unverified) results are circulated all the time.
Initial reports with promising data are presented at scientific meetings as one-paragraph summaries (Abstracts). At this “initial report”/abstract stage findings as presented will resemble more definitive works. However, these earliest (and appropriate) step in disseminating research results to the scientific community (and often onward to the public) lack any of the validation provided by peer review, publication in a respected journal, regulatory approval, replication in a different setting, or clinical testing and follow-up. None of these cautions limit what sponsors of such works (academic institutions, nonprofits, pharmaceutical manufacturers, or device developers) choose to broadcast to an audience desperate for good news. For press releases, advertisements, and interviews, there are no sanctions for overstating the positive aspects of preliminary results or for minimizing the negatives.
The incentives for early enthusiasm are considerable. Consider the size of the audience awaiting good news about dementia breakthroughs! Medical newsletters, blogs, and other means targeting professionals must attract eyeballs and advertisers to survive. Unfortunately, most “breakthroughs” fail subsequent scrutiny, but not before generating enthusiastic stories in print, broadcast, or digital media. (By the way, when hopeful bubbles burst, retractions and corrections are rare).
Words of caution also apply to the traditional “scientific literature.” Be careful about applying conclusions from research studies to you or your loved ones, even when the source is trustworthy. Scientists draw inferences, particularly about risk, by comparing large groups’ results over time and reporting the percentages of each group that develops the condition under study (i.e., the odds). Understand that no statistical comparison between slices of large populations can translate into the ability to predict any one person’s fate! Applying such group percentages to oneself doesn’t work. There is no way for any individual to predict what their personal course will be.
Sometimes commercial news sources gain readers by repackaging preliminary reports from scientific journals or presentations at industry-sponsored meetings. Watch for keywords, especially in the titles of such articles, that indicate the premature nature of these “newsworthy” findings. Examples include “ASSOCIATION between,” “TIED to,” “RISK of,” “RELATED to,” “SUGGESTING a link,” “PRELUDE to,” “PROMISING,” and even “NEW.” A popular catchphrase to beware of is “Persons who (fill in the blank), may be (more/less) likely to develop dementia.” Misleading titles ending in a seemingly breathless question mark are particularly common. “Could cold water hold a clue to a dementia cure?” (https://www.bbc.com/news/health-54531075)
Above all, the word “MAY” is a crucial indicator of what I consider “the language bridging hope and disappointment.” “May” is at the top of the list (see Figure) of words that authors or reporters of early studies turn to when attempting to elevate how we interpret their findings. It boosts the information from a demonstrated association to implied causation!
Today, far too many publications (even from reliable sources) will suggest a “link” between Alzheimer’s disease and something you’ve either done or may be unable to avoid. While scanning news sources over a two-month period, I came across the following examples of the above. They were all presented as factors that “may” either promote or inhibit dementia: bilingualism, childhood nightmares, multitasking, gum disease, household chores, a magnesium-rich Diet, regular laxative use, stress levels, restless leg syndrome, nose-picking, bone density, and road noise. My current favorite is the online pop-up: “Scratching THIS Body Part Is a Sign of Alzheimer’s.”
#3 Recommendations
Don’t read every little blurb and think it’s about you and your risks. Don’t follow fads. Don’t get your advice from advertisements or the internet. Deception (and outright fraud) are common. Much of the information out there is, at best, naïve opinion, and at worst, wishful thinking, paid endorsement, or counterfeit. Sources of information often have impressive names but nothing under the hood. Watch out for “fake news” and even “fake organizations” (see Chapter 6).
Nowhere is it harder for us to detect fake news than with fake medical news! Testimonials are useless, unscientific, and are usually paid for. Actual patients are rarely so photogenic, complimentary, and articulate as those in the advertisements!
“Clinical research” that is universally supportive of the specific product and is proudly cited on websites and in advertising materials is often, in fact, poorly done or fake. Thousands of “predatory” or “pay-to-publish” pseudo-journals online seek writers willing to pay for the “publication” of their material. Many will not have been peer-reviewed or even edited. The phony journal names always sound impressive or closely resemble legitimate scientific publications. Alleged “research” published in such journals often ends up as supportive references in the “published work/scientific research” sections of questionable products’ websites or ads.
Finally, remember the phrase “buyer beware”— and replace “buyer” with the word “reader!”
Originally Published on https://agingoralzheimers.com/
