In my role as a health educator, I deal on a near-daily basis with claims of treatment and cure for Alzheimer’s disease and related dementias. I see the range of emotions that people experience upon receiving a new diagnosis: worry and uncertainty, but also optimism and hope. And I know the deep fear that many have of Alzheimer’s disease, and how much we want to believe that “this one weird trick” will prevent it from happening to us.
I’m coming to understand how people seek out, use, and share health information, and a growing interest in health literacy further fuels my passion for public libraries. Those impacted by these diseases often search exhaustively for information about symptom management, research opportunities, and resources for support. And I look forward to the day – and sincerely believe it is coming – that I can shout from a rooftop near you that a disease-modifying treatment is available, or that a true means of prevention is here. Brilliant minds and billions of dollars are hard at work at putting me out of a job, and I can hardly wait. In fact, on that November day in 2017 that Bill Gates announced that he was going to begin investing in Alzheimer’s research, I was so overcome with optimism that I officially enrolled in the MLIS program at San Jose State University, something I’d been mulling over for months. Figured I’d better get a jump on that career change I’m going to need to make in the years ahead.
But the day for that exciting announcement from that rooftop is not yet here. There is still no known cure for Alzheimer’s disease, nor a proven method of prevention. There are best-selling books galore, and countless practitioners out there making some dramatic claims, to be sure. The quantity of information is overwhelming, and it can be hard for even the most experienced among us to tell pseudoscience from credible scientific evidence. Our ability to discern fact from fiction is always impacted by emotion and cognitive bias, and maybe never more so than when we’re facing a life-changing diagnosis. Seeing the heartbreaking vulnerability that leads people to try unproven methods, spend huge amounts of money, and spread anxieties or false hopes has given me a new mission as a dementia educator: helping people cut through the noise.
I love finding opportunities to apply what I’m learning in the library and information science program to my work. Over the years, I’ve had several opportunities to collaborate with a local health library here in San Diego County to offer education programs and outreach, and recently I reached out to their superstar library director to ask for her help in developing a health literacy handout for people affected by Alzheimer’s disease. From that project came the idea for a community education program that we’ve been developing together, and will be offering next week: Quacks or Facts? Making Sense of the Latest “Alzheimer’s Breakthroughs.”
We’ll be talking about how to safely navigate online search results, how to evaluate a source’s credibility, and how to interpret research results. We’ll talk about how emotion and bias shape the way we seek out and make sense of health information, and the tools and resources that are out there for locating reliable, credible information and weeding out the rest. And we’ll talk about how to thoughtfully consider whether or not to share information, a life skill where I think many of us are a little lacking.
I’m really excited about this, and if you’re local to San Diego County, I hope you’ll consider joining us for this free session at Alzheimer’s San Diego on Thursday June 13th, from 9 to 11 am. And if you’re not, but would like to know more, please reach out and let me know.