Alice Bailey, a GAP Citizen Scientist Award nominee, wrote an Op-Ed piece in the Cambridge Chronicle about her experience as an Alzheimer’s patient and clinical trial volunteer.
For many seniors, Alzheimer’s disease is surrounded by fear.
Fear of the diagnosis can be so strong that some don’t want to learn about or talk about the disease. And it is scary — before COVID-19, Alzheimer’s was in the top-10 causes of death in the United States with no treatments and no cure.
This fear can prevent people from getting involved in research trials. Clinical trials are the only way to develop treatments and find a cure for Alzheimer’s, but 90% of Alzheimer’s clinical trials are delayed by slow recruitment. Studies need many different types of research participants, from people who have Alzheimer’s to people who are just starting to worry about their memory.
The COVID-19 health crisis has made matters worse. Alzheimer’s clinical trials across the country were paused, dealing a serious setback to the field. Some smaller research centers are at risk of closing permanently.
In recent weeks, many research centers have begun to increase their activity, practicing extreme cleaning and social distancing, but trials are still moving more slowly than before the pandemic. Now, to regain momentum toward finding a cure in our lifetimes, research centers need more participants than ever before.
My experience as a research participant has been outstanding. When my husband and I had our memories screened at the Center for Alzheimer Research and Treatment at Brigham and Women’s Hospital, we discovered that I have increased levels of beta-amyloid, which raises my risk for accelerated memory loss and Alzheimer’s. Every Alzheimer’s clinical trial research participant needs a research study partner to help them keep track of their symptoms, so we joined different trials and served as each other’s partner.
Once a month, I go to CART to receive an A-4 study infusion and have cognitive tests. We also participate in an Alzheimer’s support group — a place where people living with Alzheimer’s at all stages can share their feelings, frustrations and wisdom.
Joining an Alzheimer’s clinical trial has been one of the most incredible experiences of my life. At CART, I found a group of people facing the fear and stigma of the disease together, bringing joy to each other and working to find treatments and a cure for ourselves and for the next generation.
In addition to a personalized evaluation of my brain health, every visit with CART staff feels like I am among friends. The community of research participants has become an important part of my life. I am ordinarily an introverted person, but I have loved every moment of being among the incredible people living with memory issues who are a part of CART’s research.
As an older woman, I began feeling that I am becoming less visible and being perceived as less important. At a time in my life when I have accumulated the most wisdom, I’ve at times felt as though I’m being spoken to like a child — but not at CART. I have been lifted up and listened to as a person, a research participant, and an advocate for Alzheimer’s research. Being engaged with my community is something I value and I am grateful to have a way to lead positive change as a senior at CART.
More people are diagnosed with Alzheimer’s each year and hope for these families, their loved ones and future generations lies with clinical trials and clinical trial research participants. Being a part of Alzheimer’s research has been an incredible experience for me as a person and a senior citizen. I encourage everyone age 50 and older to consider joining your local community of “citizen scientists” — you will love what you find when you help search for a cure.
Cambridge resident Alice Bailey is a clinical research participant and citizen scientist award nominee at Brigham and Women’s Hospital Center for Alzheimer’s research and treatment.
This story was originally posted by Cambridge Chronicle on June 30, 2020.