Study highlights need for equitable access to dementia care

Patients who live in less affluent neighborhoods and those from underrepresented racial or ethnic groups are less likely than others to receive specialized care for dementia, including Alzheimer's disease, a new study from Washington University School of Medicine in St. Louis indicates. Further, the research shows that Black people are more likely than white people to be diagnosed with dementia at a later, more advanced stage, which could contribute to inequities in access to new treatments.

The study appears Aug. 2 in the journal Neurology.

New medications to treat early-stage Alzheimer's recently have emerged. Specifically, aducanumab (trade name Aduhelm) and lecanemab (trade name Leqembi) have been approved for certain patients with early Alzheimer's disease, which makes the timely diagnosis of Alzheimer's dementia crucial.

Dementia care is going through a major transformation right now. With these new therapeutics, getting evaluated at a specialty clinic early on -; when symptoms first develop -; is going to be important in a way that it never was before so that eligible patients can have access to these treatments. Our study suggests that we must seek out ways to ensure that the distribution of these new treatments is equitable."

Suzanne Schindler, MD, PhD, associate professor of neurology and co-author of the study

The study was focused on the Washington University Memory Diagnostic Center in St. Louis. But identifying a local problem also can shine a light on the national and global problem of socioeconomic and racial disparities in health care and, in particular, Alzheimer's care. This type of study provides a baseline for measuring the impact of efforts to reduce such disparities in the St. Louis region and more broadly, according to the researchers.

Various forms of dementia can be challenging to diagnose, and most primary care doctors don't have the detailed information necessary to make, for example, a diagnosis of Alzheimer's disease. Many such doctors refer patients who may be having memory problems to memory care clinics, where physicians specialize in the evaluation and management of Alzheimer's disease and other types of cognitive impairment.

Many barriers can impede anyone with symptoms of Alzheimer's from seeking care and a diagnosis: the requirements for insurance and a primary care provider's referral, the necessity of a support person -; usually a close family member -; to accompany a patient to doctor's visits and help describe their symptoms, the cultural expectations surrounding what constitutes "normal" memory loss, and the list goes on. Even if patients are able to check these boxes, they are often met with discouragingly long wait times for an appointment.

For many reasons, these barriers disproportionately impact individuals from underrepresented groups and people of lower socioeconomic status. This disparate access means that Black patients are less likely to receive a diagnosis of Alzheimer's disease despite being twice as likely to develop dementia as white Americans.

The study utilized de-identified electronic health record data to compare the socioeconomic status of various neighborhoods where patients lived. Employing a sample of 4,824 Washington University patients from 2008-2018, the researchers evaluated how use of its memory clinic is associated with neighborhood-level measures of socioeconomic factors and race.

The researchers, including first author Abigail Lewis, an informatics doctoral student at Washington University, found that patients at the memory care clinic were more likely to reside in more affluent areas. Black patients were underrepresented, with 11% of clinic patients self-identifying as Black compared with 16% of residents in the area served by the clinic, according to census data. Further, the study showed that Black patients had more advanced dementia than white patients at their initial evaluations. At their first visits, 40% of Black patients and 31% of white patients met criteria for at least mild dementia, and 16% of Black patients and 10% of white patients had moderate or severe dementia.

"While we examined the situation with our patients here at Washington University, this disparity is likely to exist at other facilities nationwide," said senior author Albert M. Lai, PhD, a professor of medicine in the Division of General Medical Sciences and chief research information officer. "We are hopeful this study can provide information needed to improve equity at Washington University and can provide a starting point to investigate these issues at other specialty memory care clinics across the country."

These results were not surprising to Schindler or Lai, given that people with a lower socioeconomic status and from underrepresented groups are less likely than others to have health insurance and access to health care, among other barriers.

Still, Schindler said, "having the data that this study provides is compelling. Showing that you can see these disparities in data then gives you the ability to start working toward fixing it."

Co-author Joyce (Joy) Balls-Berry, PhD, an associate professor of neurology, concurs with the importance of having these numbers and said they provide a renewed chance to consider health disparities moving forward.

Balls-Berry is deeply involved in efforts to address health disparities in memory care. She leads the Health Disparities and Equity Core, which was inaugurated by the Charles F. and Joanne Knight Alzheimer Disease Research Center (ADRC) in 2020 to incorporate principles of diversity, equity and inclusion into all aspects of the Knight ADRC's work. She said that genuine community engagement is integral to these efforts. Community engagement offers a way to develop relationships with and trust within underrepresented and underresourced communities; it allows for a shared vision to be developed, and for communication between partners to be kept open in both directions.

"Moving forward, we have to be more agile," Balls-Berry said. "We must continue to emphasize community engagement. I would like to find ways to move beyond having patients come to campus for their care. How do we bring clinical skills to spaces that aren't clinics, and instead reach out to church communities or child-care facilities, for example, to meet people where they are? Toward better equity, I am interested in seeking ways to work with Dr. Lai's team to build a process in the electronic health record to identify those patients that are in greatest need of receiving a referral and make sure they get it."

The researchers suggested some possible interventions to investigate to determine if they move measures of equity in the right direction. Telehealth visits may expand access, as may increasing the number of doctors providing memory care. Another priority of the community is to increase the number of Black doctors providing care. Many times, according to Balls-Berry, patients express a desire to see health-care providers who share their life experiences in terms of gender and race.

"The next steps are always to do more research," Lai added. "Data contained in the electronic health record is a powerful tool for identifying and monitoring disparities. We now have the opportunity to address them and measure our impact."

Research and continued community engagement will become more important with each passing day, especially as, in Schindler's words: "We are now entering this new era where there are treatments available that may have an actual disease-modifying effect on Alzheimer's disease. This study provides strong evidence that we need change -; we want to make our system more equitable in providing these new therapies to those who need them most."