November 9, 2011 at 2:15 pm , by Amelia Harnish
I’m 23. Am I worried about Alzheimer’s? Not really. But for some time now I’ve had this sinking feeling that I probably should be. My grandmother may not have an official diagnosis yet, but the evidence is starting to pile up. My mom noticed something was wrong when my grandmother started calling about her TV remote not working, and then calling back 10 minutes later as if they’d never spoken. Now she has to be reminded repeatedly where I am: New York. Soon she’ll have to be reminded who I am: Amelia, second grandchild. And after that, who knows, maybe the reminders won’t work anymore.
It’s devastating to watch someone lose their mind, no matter how old they are. Today, Alzheimer’s disease is the sixth-leading cause of death in the United States. Deaths from Alzheimer’s rose 66 percent between 2000 and 2008, and the disease will continue to affect more people as baby boomers reach 65 and older.
The worst part about Alzheimer’s is that it robs you of your memory and your personality way before it takes your life. Besides wreaking havoc on patients’ and caregivers’ emotional lives, the financial toll is huge. In 2011, Americans will spend $183 billion to care for those with Alzheimer’s. By 2050, we’ll be spending $1.1 trillion, according to the Alzheimer’s Association.
All this boils down to one thing: we’ve got to act now. We don’t know exactly what causes Alzheimer’s. We don’t know enough about how to prevent Alzheimer’s. And we don’t have effective treatments to even slow it down. We’ve got to figure this out!
“There is a lot of excitement in Alzheimer’s research today, but there is a huge limit to what we can accomplish because people won’t enroll in clinical trials,” says Michael W. Weiner, M.D., director of the Center for Imaging of Neurodegenerative Disease and professor of medicine, radiology and psychiatry at the University of California, San Francisco.
Health director Julie Bain (above right) and I (on the left) met with Dr. Weiner this week along with other health editors to talk about a nationwide study he’s leading called the Alzheimer’s Disease Neuroimaging Initiative, or simply ADNI. The goal is to define the markers of Alzheimer’s disease, and how it progresses from mild memory problems to full-blown disease, which will lead to earlier diagnoses and better treatments.
Researchers are currently recruiting participants at 57 sites across the U.S. and Canada. They’re looking for:
- People age 55 to 90 who are otherwise healthy but have memory problems or a diagnosis of Alzheimer’s.
- People age 70 to 90 who have good general health and no memory problems.
Study participants will get yearly MRI scans and lumbar punctures to collect cerebrospinal fluid. Dr. Weiner admits that it’s time consuming (and those lumbar punctures may seem a little scary, although they’re totally safe), but he insists that patients get a lot out of it, including free medical care from the top experts in this field. Dr. Weiner has even enrolled himself in the study, and you can watch a video of him explaining all the procedures here.
“The main benefit is knowing you’re contributing to the greater good,” he says. “One day we will be able to prevent Alzheimer’s with lifestyle changes and medications, but this all depends on people enrolling in this study.”
Throughout our meeting, I couldn’t stop thinking about my grandparents. This summer when I visited them, I was in the backyard with my grandfather when he said, “You know your Grammy’s not doing so well, hon.” I knew it, but something about hearing him say it made it more heartbreaking. It may be too late to solve this problem for our parents and grandparents, but I bet they’d be more than happy to help solve it for us.
Know Someone Who Might Volunteer?
Visit adni-info.org to learn more. You can also call the Alzheimer’s Disease Education & Referral Center (ADEAR) at 800-438-4380 to learn more about ADNI or other studies that might be better for you or a loved one.
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