St. Louis has highest Alzheimer’s rate in Missouri, with more than 1 in 10 adults affected

ST. LOUIS — The city of St. Louis has the highest rate of Alzheimer’s dementia cases in Missouri, and new evidence from Washington University’s School of Medicine shows that social factors like income, race and education play a role in access to treatment and diagnosis.

The new observational study, focused on the Washington University Memory Diagnostic Center, showed that patients who live in less affluent neighborhoods, as well as people of color, were less likely to receive care from the memory clinic.

While age is well-known as the primary risk factor for developing Alzheimer’s, racial disparity has started attracting more attention in the last few years as well — particularly in St. Louis, where 13% of residents 65 and older have the disease, according to a recent Alzheimer’s Association report. Rates in St. Louis County fall between 12% and 13%.

Another report from the association says that Black Americans face about double the risk of developing the disease compared to white Americans, and Hispanics face about 1½ times the risk.

Suzanne Schindler, a clinical neurologist involved in the Washington University study, said that requirements of the diagnostic process, or “the patient journey,” can be a barrier to receiving treatment. At the Memory Diagnostic Center, for example, a patient needs health insurance, a primary care doctor’s referral, and a support person who knows them well they can help provide doctors with a patient history and information about new symptoms.

Because of the shortage of memory specialists, Schindler said, patients often have to wait up to six months to get an appointment.

The researchers found that Black patients tended to have more advanced dementia compared to white patients at initial evaluations.

Reasons for this are myriad. In addition to all of the other barriers to accessing treatment, stigma surrounding the disease and a distrust of the medical community are likely limiting racial minorities from receiving treatment, experts say.

Risk levels may also have more to do with differences in the social environment that people live in, rather than an inherent likelihood of developing the disease.

“It’s not typically due to the biology,” said Ganesh Babulal, an assistant professor of neurology at Washington University’s School of Medicine. “It’s the social determinants that impact a differential risk.”

Arnesia Calk, an outreach manager for Oak Street Health in Jennings and community educator for the Alzheimer’s Association said she has personally felt the effects of this stigma in the African American community, as well as in her own family, after her grandfather was diagnosed with the disease. He died in 2017.

“The stigma is definitely there,” she said. “And it also comes along with that privacy that a lot of our older family members are so used to, that ‘We don’t talk about that,’ ‘What happens in my house stays in my house,’ ‘Nobody’s supposed to know about this.’ And it bleeds into us generationally.

“We have a lot of families that are still dealing with that,” Calk said. “How do I get care for this individual if I’m not willing to admit that this is where they are in life?”

Early diagnosis of Alzheimer’s is becoming increasingly important as new drugs reach FDA approval. Aduhelm and Leqembi, two recent arrivals, are only meant to treat early, mild cases.

Because of this, Schindler said she’s concerned that even though Alzheimer’s is more frequent in Black populations, patients “will get less benefit” because they usually arrive at a memory clinic with more advanced dementia, when the drugs are no longer effective.

Sarah Lovegreen, vice president of programs at the Missouri chapter of the Alzheimer’s Association, also highlighted the impact of social factors on residents of St. Louis, where, according to the U.S. Census Bureau, the poverty rate is almost 20% and around 12% of people younger than 65 are without health insurance.

“There are so many social determinants of health that are impacting residents of St. Louis — not only age and race, which we know are risk factors that would increase risk for Alzheimer’s disease,” she said. “We also know that in parts of our city, it’s very difficult to get access to healthy food or participate in safe physical activity; housing and education isn’t consistent through the city.

“And so I think that’s where we’re seeing some of those rates come up,” she said. “Some of those other social determinants of health we’re learning, more and more, impact one’s risk for Alzheimer’s disease as well.”

Finding solutions to these large, complicated problems is going to require multiple approaches, researchers and advocates say.

“I think it’s really going to take going to people and meeting them where they are,” Calk said. “Community education is incredibly important. We definitely need to be maximizing that for St. Louis.”

Schindler, with Washington University, believes this is where their new study will be especially important. Having identified the current disparities in the clinic, researchers will have a baseline to measure the impact of any changes made.

“There’s an interest in interventions, in changing the process for the clinic,” Schindler said. Altering policies, like the requirement that a patient be accompanied by a support person, might ease an obstacle to treatment, she said.

“We’re still defining exactly what we should do to help with the problem, but there’s at least a way that we can see whether any of those interventions might be helpful,” Schindler said.