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Substantial Disparities in the Diagnosis and Comprehensiveness of Dementia Evaluations for Black, Hispanic, and Asian Patients

Article In Brief

New research suggests that Asian, Black, and Hispanic patients were more likely to receive a later dementia diagnosis than their White counterparts. Asians, in particular, tended to undergo less comprehensive assessments. Experts say, among other reasons, disparities in access to care may account for the differences.

Black, Hispanic, and Asian patients in California were significantly less likely than White patients to receive an early diagnosis of dementia, and Asian patients were also less likely to receive key elements of a comprehensive dementia evaluation, according to a March 29 study in JAMA Neurology.

Analyzing 2013-2015 Medicare fee-for-service data for more than 10,000 beneficiaries who received a diagnosis in the first six months of 2015, the researchers assessed the association between race/ethnicity and the timeliness of a dementia diagnosis—measured by a diagnosis of mild cognitive impairment (MCI) before dementia—and the comprehensiveness of evaluation (a specialist examination, laboratory testing, and neuroimaging conducted within six months before or after diagnosis).

California has the largest, and one of the most diverse, older-adult populations of any state, and the study's findings there, even in an insured sample, were revealing. Blacks, Hispanics, and Asians were significantly less likely than Whites to receive an incident (or early) MCI diagnosis even after controlling for individual and contextual factors. And as in disparities in all conditions—as the COVID-19 pandemic has shown so starkly—the drivers of dementia disparities were multifactorial.

“While we hypothesized to find racial/ethnic disparities based on prior evidence, we were struck by the magnitude of these inequalities in underrepresented communities,” the study authors, led by Katherine Possin, PhD, the John Douglas French Alzheimer's Foundation Endowed Professor at the University of California San Francisco, responded jointly in an email to Neurology Today.

“Our leading hypothesis at the moment is that social determinants of health play a key role in all aspects of dementia disparities, particularly given prior evidence of robust associations between race/ethnicity and poverty, discrimination, and health care access and quality. However, future research should also determine to what extent patient-level cultural barriers, dementia awareness and education, and provider cultural competence contribute to inequities in diagnosis and care. These findings would be critical to inform effective, targeted interventions to reduce dementia disparities, which would most certainly require collaborations of multidisciplinary healthcare teams, social scientists, and health care policymakers.”

Addressing these disparities is becoming even more pressing as the older adult population in the US grows and becomes increasingly diverse. Early diagnosis of dementia, in particular, can help facilitate the often long and complex process of treatment and care, which has profound effects on families, communities, and health care spending.

“While we have known for a long time that there are racial/ethnic disparities in dementia risk and treatment, our study identified that racially/ethnically diverse older adults are more likely to be deprived of the benefits of early and comprehensive diagnosis, including the identification of reversible causes, timely treatment of cognitive symptoms, and supportive care for families,” the authors said. “Moreover, with new treatments for Alzheimer's disease and other dementias on the horizon, these disparities in diagnosis— if left unaddressed—will further deepen inequities in treatment.”

Study Design, Findings

Dr. Possin and her co-authors looked at 10,472 unique California Medicare fee-for-service beneficiaries with incident diagnoses of dementia or MCI—6,504 of whom were women with an average age of 82.9 years. They also included 993 individuals who identified as Asian (9.5 percent), 407 as Black (3.9 percent), 1,255 as Hispanic (12 percent), and 7,817 as White (74.6 percent). The sample represented 0.6 percent of the 1,892,633 California Medicare beneficiaries with no prior diagnoses of dementia or MCI from 2013 through 2014.

They looked at whether the beneficiaries received a timely diagnosis—defined as first receiving a diagnosis of MCI rather than dementia—in the first six months of 2015. The authors defined comprehensiveness of diagnostic evaluation as claims including a specialist evaluation, laboratory testing, and neuroimaging studies within six months before or after the incident diagnosis date.

Across all racial and ethnic groups, only a minority of all beneficiaries received a timely diagnosis and comprehensive evaluation. Less than one-quarter (21.2 percent) of beneficiaries received a diagnosis of incident MCI (versus dementia), 34.6 percent received a specialist evaluation,16.2 percent had recommended laboratory testing, and 28.7 percent had neuroimaging studies.

Yet, the findings of disparity by race/ethnicity were clear. Compared with White beneficiaries, the authors wrote, those who identified as Asian, Black, or Hispanic were less likely to receive a timely diagnosis. Asian beneficiaries also received fewer diagnostic evaluation elements. These associations remained significant after adjusting for age, sex, comorbidity burden, and neighborhood disadvantage.

Black and Hispanic patients were less likely to receive an MCI diagnosis despite the fact that they tended to be younger at diagnosis than White patients—with a mean age of 80.4 years for Black patients and 80.9 years for Hispanic patients vs. 83.4 years for White patients. They were also more likely to live in highly disadvantaged neighborhoods (24.8 percent for Black patients and 34.6 percent for Hispanic patients vs. 15.2 percent for White patients). Black patients living in these neighborhoods were less likely to receive an incident MCI diagnosis, while Hispanic patients living in these neighborhoods were less likely to receive a recommended diagnostic workup.

Black and Hispanic patients also showed a greater comorbidity burden than White patients, which was associated with a decreased likelihood of timely incident MCI diagnosis. The multifactorial drivers of disparities demand multifactorial solutions, and perhaps the most touted is the need for improved non-specialist training in dementia diagnosis.

“We recommend that primary care providers routinely ask all older patients about changes in memory and thinking skills, just as they would routinely check for other health factors like high blood pressure or hearing loss,” the study authors said. When there is a concern, the next step is to conduct a standardized cognitive assessment and evaluate for reversible causes.”

“Dementia specialists also need to take an active role to reduce inequities in access to their services,” the study authors said. “They can do so through outreach to underserved communities, including strengthening referral pipelines and providing education on brain health and importance of timely diagnosis.”

Expert Commentary

Monica W. Parker, MD, a family medicine and geriatric specialist and assistant professor in the department of neurology at Emory University, views access to dementia care as the key challenge from primary care through clinical trials. The reasons why range from health care provider shortages to bias effects in screening tools, but they start with basic questions about access to primary care. “The underlying problem is one of infrastructure,” she said. “In your community, if there is not a doctor for you to go to, how can you get these concerns addressed?”

“In geriatrics and even in family medicine, the average private physician can't afford to have very much of their patient population Medicare- and/or Medicaid-dependent. When I see Medicare and Medicaid, as a provider, it's like not having any insurance. The policy change has to be that however we fund Medicare or Medicaid, the pay rates need to be equal to whatever private health insurance payors would pay.”

Yet the study, she believes, also points to provider-level factors beyond availability. “In a situation like this, where people have insurance that technically will pay for whatever medical evaluation is required, the Asian grandmother, the African-American grandmother, and the Latin American grandmother still aren't getting an early diagnosis,” she said. “Why is that? Maybe it's because the provider that's taking care of our grandmother isn't ethnically identical, can't speak the language, or doesn't have an interpreter there to more fully investigate what the patient's concerns are.”

Jason Resendez, executive director of the UsAgainstAlzheimer's Center for Brain Health Equity and head of the LatinosAgainstAlzheimer's Coalition, looks at questions of infrastructure beyond any group of providers. “We are not doing enough to ensure that the nursing community, for example, is part of our ability to identify and treat Alzheimer's and related dementias. We are not doing enough to enlist the support of nurse practitioners, to enlist the support of pharmacists,” he said. “These are practitioners who are embedded in communities, either in pharmacies or in community health centers [CHCs], in Minute Clinics—the providers that people in those underserved and underrepresented communities go to for day-to-day advice and care. And it's these folks that are not part of the Alzheimer medical enterprise.”

“When it comes to addressing inequities in brain health, it's an infrastructure issue. One of the most important lessons of COVID was the importance of CHCs as sites of testing, care, and vaccine deployment. We have not taken that approach with Alzheimer's and dementia, despite the growing data on the impact of this disease in these communities.”

For Black patients, systemic racism also remains a powerful barrier to care. “What is more problematic for Black patients is the fractured relationships with the health care system due to past medical abuses and discrimination. The Alzheimer's Association...reported that only about 48 percent of Black people feel confident that there is access to providers who are culturally competent; They are twice as likely as White people to say they would not see a doctor if they were having memory problems or concerns,” said Lisa Barnes, PhD, Alla V. and Solomon Jesmer Professor of Gerontology and Geriatric Medicine at Rush Medical College. “We have to remember that we, as a medical establishment, are to blame. Blacks are not inherently mistrustful. They don't trust because of things that have happened in the past and continue to happen. We have to do more to become trustworthy as providers, researchers, administrators, etc.

Diversifying research has to happen on multiple levels. “I'd like to see the National Institute on Aging partnering with Federally Qualified Health Centers to expand the reach of Alzheimer's research beyond academic medical centers and directly into the communities that we know are at higher risk of neurological conditions like Alzheimer's yet are the least likely to access research,” said Resendez. “Second, I would love to see industry start to set goals around the recruitment of underserved populations in their research and start to change how they design their studies. It requires designing for inclusion from the beginning.”

Finally, there is the pressing need to diversify the workforce. “Diverse populations represent only a very small fraction of physicians, researchers, and other health care professionals in dementia,” said Dr. Barnes. “We have to attract, train, and retool a diverse, competent workforce in order to mitigate the perceptions and expectations of discrimination that our diverse patients have about health care and access to treatments.”

Link Up for More Information

• Tsoy E, Kiekhofer RE, Guterman EL, et al. Assessment of racial/ethnic disparities in timeliness and comprehensiveness of dementia diagnosis in California https://jamanetwork.com/journals/jamaneurology/fullarticle/2777918. JAMA Neurol 2021; Epub 2021 Mar 29.