As a young person just getting started on my professional and personal journey into adulthood, I never could have pictured Alzheimer’s disease becoming a major concern in my life. Always associated with aging, Alzheimer’s doesn’t often come to mind for millennials like me who are more likely to be focused on the hottest Netflix binge craze or on social plans for the weekend.
My peers may rarely, if ever, think about Alzheimer’s, but this tragic disease has affected my life tremendously. When I was 18, my grandma was diagnosed with Alzheimer’s disease and came to live with my family. Growing up, I always thought of my grandma as superwoman, having raised five kids, worked as a housekeeper and helped manage my grandpa’s business. When she came to live with us, she loved to go everywhere with me, especially on long car rides, singing along to any tune or making up her own. I would dress her and make her look pretty because she was unable to do this on her own. I watched her mind slowly disintegrate and cherished any moment when she would actually remember my name.
As Mother’s Day approaches, I am writing on behalf of my beloved grandma and my mom, who was her primary caregiver, to encourage everyone, young and old, to learn more about what they can do to fight this devastating disease.
Alzheimer’s affects an estimated 5.1 million Americans age 65 and older. This means millions of millennials have a parent, grandparent, aunt or uncle, or old family friend who is living with a condition that slowly robs them of their minds. Not only does it diminish a person’s memories and physical abilities, this disease essentially steals the identity of a loved one. I learned this the hard way.
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A staggering 13.8 million Americans are projected to have Alzheimer’s disease by 2050 if no medical breakthroughs are discovered. By then, we millennials will be squarely in the target demographic most at-risk for Alzheimer’s. That’s simply unacceptable.
What can we do across generations to help find a breakthrough? While community activities such as Alzheimer’s walks are great, I recently found another way that people can contribute to the critical research needed. I joined the Alzheimer’s Prevention Registry to learn more about Alzheimer’s research and to potentially become a participant as new research studies begin to enroll.
Created by the Banner Alzheimer’s Institute, the registry is an online community of people 18 or older – with or without a family history of the disease – committed to ending Alzheimer’s in our lifetime. It provides regular updates about the latest Alzheimer’s research happenings, sends vital notices and information about upcoming clinical prevention trials and tells volunteers how they can participate.
Research studies are not only for people already affected by a disease. In fact, many Alzheimer’s prevention trials actually need more participants who are healthy and without any symptoms. Studies may need to screen literally thousands of potential participants to find a sufficient number who meet the criteria.
Without these badly needed volunteers, scientists will not be able to research promising Alzheimer’s therapies, significantly delaying potentially life-saving discoveries. Those who sign up can help advance Alzheimer’s treatment and prevention research, and stop this horrible disease from affecting an untold number of their loved ones.
Valerie Mamone lives in Raleigh.
Find it at www.endALZnow.org.