Mollie and Ralph Richards have been spreading the word about Alzheimer’s disease in the Black community for 20 years. The husband-and-wife duo both have backgrounds in the medical field — Mollie worked in rehabilitative medicine and Ralph in imaging — and both have experienced not being listened to at the doctor’s office.
That’s why neither of them are surprised by recent data from an Alzheimer’s Association study that found 66% of African Americans believe it is harder for them to get adequate care for Alzheimer’s disease and other forms of dementia, which Black Americans are nearly twice as likely to develop than any other demographic.
Further, nearly two-thirds of African Americans believe medical research is biased against people of color and are less likely to participate in clinical trials for Alzheimer’s studies than all other groups surveyed.
“Trust is a foundation you need in order to get things done,” Ralph said. “We’re trying to get people involved in studies so that when there is a cure, or at least a disease modifying drug, it will fit the needs of African Americans.”
Both Mollie and Ralph work with the Indianapolis chapter of the Alzheimer’s Association, as well as the Alzheimer’s Disease Research Center. Before the pandemic, they hosted seminars to tell caregivers about the disease, which primarily affects individuals aged 65 and older. While in-person seminars aren’t possible right now, they are still working to spread the word through churches and virtual events.
“We’re both retired,” Ralph said. “We’re doing this because our people are dying, and we need to get the message out.”
To get their point across, Mollie is sure to tell everyone she speaks to that she volunteers for studies at the Indiana University Medical School and feels respected and listened to there.
While getting African Americans comfortable with the medical field is an important step, health care professionals will also need to adjust.
Hadya Sow of the Alzheimer’s Association Greater Indiana chapter believes reforms in the industry are necessary to bridging the gap between doctors and African Americans.
“The Alzheimer’s Association has discussed several recommendations,” Sow said. “Most importantly, we believe that cultural competency and implicit bias training is imperative for all health care providers, and training must be expanded.”
Getting people comfortable going to the doctor and making sure doctors understand where their patients are coming from is an important step in early prevention.
And when it comes to Alzheimer’s disease, early prevention can make a huge difference.
“It’s imperative to find out early on whether or not a person is experiencing dementia,” Sow said. “Alzheimer’s impacts people’s ability to live their daily lives … so it’s important to be aware of what they’re experiencing so we know what level of care and support they need and what resources are available to them.”
It’s caregivers, Mollie said, that typically notice changes in a loved one.
Mollie and Ralph suggest caregivers document changes they see in a parent or loved one and accompany them to a doctor’s appointment to not just share their concerns but advocate for the patient. Both Mollie and Ralph said it’s best to go into the appointment prepared, and to make sure you don’t leave until you have all your questions answered.
Contact staff writer Breanna Cooper at 317-762-7848. Follow her on Twitter @BreannaNCooper.