Loretta Woodward Veney’s mother was 77-years-old when she was diagnosed with Alzheimer’s. In the early stages, she would misplace items. By the time the disease reached its peak, her mother had forgotten that she was a parent and could no longer remember how to sit.
It was difficult finding a doctor to address the early warning signs at first. Veney remembers locating a neurologist to run tests on her mother’s brain.
“She had only been there once,” Veney says of their visit to the specialist. “When the door opens and he comes in, he looks like the last place he wants to be is in that room with us.”
During that visit, they learned that her mother was in the beginning stages of dementia. The doctor wrote a prescription for medicine that would slow down the progression of the disease. But Veney felt a disconnect with the doctor and how he treated them. “We left never to return again,” she says.
Gaps in communication in the doctor’s office are behind some of the disparities that Black Alzheimer’s patients experience. In 2021, the National Institute on Aging found that the current clinical trial system excludes Black patients by limiting criteria for who is eligible to participate in studies.
Veney’s first time hearing about clinical trials was through an organization that she joined in 2012 called Us Against Alzheimer’s.
“I became one of the co-moderators on their Facebook support group, and it was only then that I started to learn about clinical trials,” she says. She interacted with people whose parents and spouses were participating in studies. Looking back, she would have wanted her mother to be part of some effort to enhance the quality of medication and service.
“My grandparents would have said ‘no,’ and they would never do it just because of the Tuskegee thing,” says Veney. “My mother certainly was of the mindset that you should learn everything you can about the drugs before you take them and then see. She would have been amenable to at least listening.”
New studies show that Black patients are more open to participating in a clinical trial if they know or trust the person sharing the information. Veney says it’s helpful that we understand that our participation in research can help save lives in the future.
“You’re really helping the current generation– the next generation make medicine better.”
If you’re interested in learning more about clinical research studies in your area:
- Sign up for a registry or a matching service.
- Contact Alzheimer’s research centers or memory or neurology clinics in your community. They may be conducting trials.
- Visit the Alzheimers.gov Clinical Trials Finder.
If you’ve participated in a clinical research study before, we’d love to hear your story. Share it with us here.