Written by Andrea Denny, JD, MSSW, outreach, recruitment and education core leader at the Knight Alzheimer’s Disease Research Center at Washington University in St. Louis
When I learned the theme for Older American’s Month was how older adults are taking part in activities that promote wellness and making a real difference in their communities, I knew I wanted to share about a special group of volunteers.
I work at the Knight Alzheimer Disease Research Center, which is part of the School of Medicine at Washington University in St. Louis and one of 31 Alzheimer Disease Centers funded by the federal government. We have the most dedicated and incredible group of research participants in our longitudinal study, the Memory and Aging Project; talk about making a difference! I think of these research participants as the MVPs of the volunteer world. They really are a specialized group of volunteers.
This group of volunteers is focused on a powerful future: a future where their kids, grandkids, and countless people will benefit from their contributions to Alzheimer disease research.
Even though we are an Alzheimer Disease Research Center, the majority of our volunteers do not have Alzheimer disease or problems with memory or thinking. Of course, we do very much want and need volunteers who have mild memory and thinking problems in our research, but it is definitely not a requirement.
Most of our volunteers are age 50 and older. These volunteers all have a study partner, so it is really two volunteers, and they come back every year for a memory interview and paper and pencil testing. We also ask our volunteers to donate a sample of cerebrospinal fluid and do different brain scans every few years, and many participate in sleep studies and other types of testing. In addition, while our volunteers are not required to do so, it really helps the research when they donate their brains as a medical gift to our research center.
Before the Memory and Aging Project, and other studies of this type around the country, doctors thought Alzheimer disease began when a person showed symptoms like repeating themselves or getting lost in familiar places. Now, thanks to volunteers contributing to blood tests, cerebrospinal fluid collection, brain scans, and memory and thinking tests, we know that changes can happen in the brain years, or even decades, before a doctor could diagnose a patient with Alzheimer disease in a clinic.
Although it seems alarming that a person has changes happening in her brain before symptoms occur, this is actually GOOD news. Knowing about these early changes and a timeline for them gives researchers a target upon which to try medications or other interventions to stop brain changes before disease symptoms ever occur.
The goal is to stop the disease before too much damage occurs, as once the changes in the brain cause neurons to be damaged enough to cause problems in daily life, researchers do not have tools to fix those damaged neurons and repair the brain. However, if we find ways to detect changes using brain scans and cerebrospinal fluid collection (and maybe eventually blood tests), there may be a window of time to intervene before the damage becomes irreversible.
Without Memory and Aging Project volunteers, we would not know about these early changes. It is the time, energy, dedication, and willingness to participate in such a wide range of tests that makes Memory and Aging Project volunteers a select group of volunteers. If you are a Memory and Aging Project volunteer, we cannot thank you enough. Research just cannot advance without volunteer commitment, and when researchers find a prevention or cure for Alzheimer disease, society will owe our Memory and Aging Project volunteers a debt of gratitude.
If you are looking for ways to help your community, future generations, and the world, consider becoming a Memory and Aging Project volunteer. Your time will be a gift to us all.
To volunteer or for additional information about the Knight ADRC check out the following links: