Lack of Alzheimer's Care Hinders Access to New Treatments for Black Patients

The study focused on the Washington University Memory Diagnostic Center in St. Louis, Missouri. The intention was to understand who was making the most use of its services.

Schindler, herself a dementia specialist, based in St. Louis, noted a lower rate of Black patients at the clinic compared to the area's demographics. Additionally, Black patients seen were generally those already exhibiting advanced dementia symptoms. Other members of the center’s team observed a similar trend. Therefore, it was decided to analyze medical records to check if the data matched their experiences.

In the period 2008 to 2018, 4,824 patients were seen at the memory clinic. Their data was compared with records for the neighboring residential area. Schindler shared that the results simply confirmed their informal observations. The patient cohort at the clinic featured fewer Black patients than would be expected based on the demographics of the surrounding area.

The study also showed that Black patients who did come to the clinic arrived with moderate to severe dementia when compared to white patients.

Patients who visited the clinic generally hailed from wealthier neighborhoods with fewer Black residents, a higher average income, and a higher level of education.

Discrepancies in Alzheimer's health have been noticeable for years and these affect diagnosis, treatment, and disease results in marginalized communities.

Schindler mentioned that minoritized groups like Black and Hispanic individuals were more prone to Alzheimer's. It is unclear exactly how much more likely they are to develop dementia compared to the rest of the population. Some research suggests an increased risk ranging from 50% to 100%.

Data suggests that Black Americans are 1.5 to 2 times as likely as white Americans to develop Alzheimer's and related dementia. Yet, Black participants in Alzheimer's studies are 35% less likely to be diagnosed with the disease compared to white participants.

Reasons for the higher prevalence of Alzheimer's and fewer diagnoses are multifarious and include institutional racism, social beliefs, and potentially even biological discrepancies.

Long-standing discrimination and marginalization have possible health impacts on Black Americans by exposing them to sustained stress throughout their lives. Added to structural racism, this can disproportionally affect health and exacerbate disparities.

Schindler believes that individuals in poorer neighborhoods having less access to quality medical care may be a significant contributing factor in the under-representation of such demographics in specialty memory treatment environments.

“If you live further away [from a clinic], if you have had harmful encounters with the healthcare system—or even one particular hospital or academic medical center—that means that you never get access to that care,” Paris Adkins-Jackson, PhD, MPH, assistant professor of epidemiology and sociomedical sciences at Columbia University Mailman School of Public Health, told Health.

These less affluent neighborhoods may also have higher rates of pollution, which is considered a risk factor for dementia.

The risk of Alzheimer’s disease and related dementias may increase with comorbidities that affect the heart and blood vessels, like heart disease, diabetes, stroke, high blood pressure, and high cholesterol. Data shows Black Americans are more likely than white Americans to have most of these conditions.

Non-white people have historically been excluded from research of any kind—which then inhibits diagnosis rates, treatment options, and even accessibility issues.

“A lot of the [diagnostic] tests have been developed in almost exclusively white populations,” said Schindler. “We don’t really know if these tests work the same way in everyone.”

The same goes for new treatments tested in clinical trials.

“[The] clinical trials for Alzheimer’s disease treatments have had a very low rate of inclusion for Black individuals in particular,” said Schindler. “We’re basically just testing these drugs in white individuals with higher levels of education that are relatively healthy, and we don’t know how these drugs work in individuals from different backgrounds.”

Accessibility issues surrounding new Alzheimer’s drugs Leqembi and donanemab highlight this: Because the drugs were tested on smaller groups of people with less advanced disease progression, it’s only intended for people with early-stage Alzheimer’s—Black patients, who are often diagnosed later on in their disease, may not be eligible to take the medications.

Certain symptoms of Alzheimer’s disease may also be more common in Black people. When comparing Black participants versus white participants, research has shown that Black patients with Alzheimer’s disease and related dementias were twice as likely to demonstrate delusions or hallucinations, compared to white patients.

Black patients were also likelier to have symptoms like agitation, aggression, or irritability; loss of inhibitions; motor disturbances; and sleep, behavior, and eating changes. These differences in symptoms can delay diagnosis or lead to misdiagnosis.

In Alzheimer’s disease and related dementias specifically, it’s important to meet people where they are in terms of information—that may mean better messaging around symptoms and treatment options for some marginalized communities.

“One of the biggest issues that we’ve been tackling—outside of structural and systemic issues—is just being able to recognize the symptoms,” said Karen Lincoln, PhD, MSW, professor of environmental and occupational health and director of the Center for Environmental Health Disparities Research at the University of California, Irvine’s Program in Public Health. “African Americans, despite having the highest risk, have the lowest levels of Alzheimer’s literacy.”

“The idea [is] that dementia is just a normal part of getting older—it’s not, but people sometimes have that expectation,” added Schindler. “That’s one reason why people don’t present when they first develop symptoms, because they think, ‘Oh, I’m just getting old.’”

Text message campaigns or talk show presentations based on Alzheimer’s information have been shown to boost that knowledge, said Lincoln.

Memory care clinics and healthcare institutions also have to intentionally include less affluent patients and patients of color, Adkins-Jackson said.

These care centers should also be located in areas where people of color and people with lower socioeconomic statuses can access them, and they should prioritize hiring healthcare providers of color to make patients feel more included and comfortable, added Schindler. The same goes for hiring more community health and social workers for outreach.

“We have to be more aware of the ways the structural determinants bleed over into our private lives,” said Adkins-Jackson. “We have to take more systemic level changes to do something about that because the individual is not enough.”