“What Matters Most?”
If you are a person living with dementia or a family member of a person with dementia, has anyone ever asked you this question? Unfortunately for many people, the answer is “no.”
Now UsAgainstAlzheimer’s A-LIST® is asking.
UsAgainstAlzheimer’s is an advocacy and research-focused organization working to speed a cure for Alzheimer’s disease. Critical to this work is addressing brain health disparities impacting communities of color through community engagement, advocacy, and research partnerships. This is an essential focus for the organization given the growing impact of Alzheimer’s on communities of color. In fact, by 2030, nearly 40% of all Americans living with Alzheimer’s will be Latino or African American.
UsAgainstAlzheimer’s A-LIST is a first-of-its kind online community of people living with Alzheimer’s disease, other dementias, mild cognitive impairment, current and former caregivers, and people concerned about their brain health. It is 8,000 members strong and growing. Our goal is to make it as diverse as the community impacted by dementia.
A-LIST members answer 1-2 short online research surveys each month on what matters most to them on important topics related to living with Alzheimer’s or caring for a person with the disease. Recent survey topics include role reversal within families, emotions related to dementia, the impact of dementia on travel, and the role of faith in the lives of those facing dementia.
As part of this important work we are planning research to better understand the needs and priorities of caregivers of color. The surveys will explore caregiver interactions with doctors and other health care providers, knowledge about care practices, and the impact of caregiving on caregiver health and quality of life.
We will use what we learn from these surveys to create new materials to educate caregivers in diverse communities about engaging with physicians, best practices for caregivers, the importance of participating in research, and resources for caregiving and self-care. In short, we want to make life better for caregivers and their loved ones with dementia.
The A-LIST regularly shares survey results with its members and publishes results several times every year. The results of our upcoming caregiving surveys will be published in the A-LIST Pulse of the Community. Click here to read the most recent edition of the Pulse of the Community.
Some other important facts that you may want to know about the A-LIST:
The A-LIST What Matters Most surveys are “IRB” research. This means they are approved by an Institutional Review Board (IRB), which is an accredited, independent ethics committee that reviews and monitors biomedical research involving people.
Your responses to surveys are kept confidential in a secure database. Responses are “de-identified” – this means that no names are attached to any responses. All the results are managed by trained researchers who are committed to maintaining the integrity of this ongoing study.
Also, if you take an A-LIST survey you are asked to sign an “Informed Consent.” In this case, signing means clicking on the button that says “I Agree” at the end of the form. The informed consent explains general information, including who is doing the study (UsAgainstAlzheimer’s A-LIST); why it’s being done; how information is kept confidential; and the benefits and risks associated with a trial.
You also may be interested in reading the A-LIST Operating Principles here.
Alzheimer’s disease is the only leading cause of death in the U.S. that is still on the rise and has no treatment or cure. We know that people of color are more likely to be impacted by this disease. For example, African Americans are two to three times more likely to develop Alzheimer’s than non-Hispanic whites, and Latinos are 1.5 times more likely.
We need treatments, cures and supports that work for everyone impacted by Alzheimer’s. The only way to find them is through research. But Latinos and African Americans and other groups are drastically underrepresented in Alzheimer’s research. UsAgainstAlzheimer’s is working hard to change that by engaging people from diverse backgrounds in the A-LIST and conducting research that is meaningful to people of color affected by Alzheimer’s disease.
I’m proud that UsAgainstAlzheimer’s is committed to inclusive research. We can be even more successful with your help. I hope you’ll take a few minutes to learn more about the A-LIST, consider signing up, and in early 2020 look out for our surveys asking you What Matters Most to you.
The opinions expressed in this article are those of the author and do not necessarily reflect those of the Diverse Elders Coalition.