How Racial and Ethnic Disparities in ADRD Impact Diagnosis, Quality of Care

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Timothy S. Chang, MD, PhD and Lisa L. Barnes, PhD, discuss health disparities in ADRD and how to improve clinical outcomes for patients from underrepresented groups.

As researchers continue to seek insights to improve the understanding, prevention, and treatment of Alzheimer disease and related dementias (ADRD), a growing body of research highlights significant racial and ethnic disparities in various aspects of these diseases.1

“In Blacks and Hispanics, the prevalence of ADRD is 1.5 to 2 times higher compared to non-Hispanic Whites,” said Timothy S. Chang, MD, PhD, assistant professor of neurology and director of the Chang Lab at the David Geffen School of Medicine at the University of California (UCLA), Los Angeles, and director of the California Alzheimer’s Disease Center at UCLA.2 These groups have been the focus of most of the research on racial and ethnic disparities in ADRD to date, with less data available for Asians and other underrepresented groups, said Dr Chang.

 ADRD Disparities: What the Data Say

In a 2022 study published in JAMA, of 1,869,090 individuals enrolled in the US Veterans Health Administration, hazard ratios for developing dementia over a 10-year follow-up period were 1.05 (95% CI, 0.98-1.13) for American Indian or Alaska Native participants, 1.20 (95% CI, 1.13-1.28) for Asian participants, 1.54 (95% CI, 1.51-1.57) for Black participants, and 1.92 (95% CI, 1.82-2.02) for Hispanic participants compared with White participants after adjusting for confounding variables.3

Additionally, in a 2021 study published in the Journal of Alzheimer’s Disease, researchers found greater odds of mild cognitive impairment (MCI) and dementia in Black patients (2-fold higher) and Hispanic patients (4-fold higher) compared with White patients after adjusting for confounders.4

We know that diverse populations are much less likely to present to medical attention for conditions like dementia for a variety of reasons such as lack of trust in medical establishments …

However, findings regarding ADRD rates have been mixed overall. In a 2022 study published in August in Alzheimer’s & Dementia, researchers analyzed data from the National Alzheimer’s Coordinating Center (NACC) and observed lower rates of dementia diagnoses in Black patients compared with White patients, although Black patients had a higher number of risk factors for dementia and greater cognitive impairment, neuropsychiatric symptom severity, and functional dependence compared with White patients.5

Similarly, in a 2020 study publish in Medical Care, of 3,966 individuals with dementia, non-Hispanic Black and Hispanic patients with dementia demonstrated worse cognitive and functional impairment at the time of diagnosis and showed higher odds of a missed or delayed dementia diagnosis (odds ratio [OR], 1.27; 95% CI, 1.05-1.53 for non-Hispanic Black patients and 1.83; 95% CI, 1.43-2.35 for Hispanic patients) compared with non-Hispanic White patients.6

Other research has also found that Black and Hispanic patients are more often hospitalized in the later stages of dementia and incur 60% higher inpatient costs at the end of life compared to non-Hispanic White patients, according to Dr Chang.7

Gaps in Quality of Care

Along with differences in risk, prevalence, and disease outcomes, patients from underrepresented racial and ethnic groups may experience differences in the quality of care for ADRD. “There is a dearth of research assessing quality of care among diverse persons with dementia, but in the general literature, quality of care is often cited as much lower for diverse populations for many conditions,” said Lisa L. Barnes, PhD, the Alla V. and Solomon Jesmer Professor of Gerontology and Geriatric Medicine at Rush Medical College and cognitive neuropsychologist at the Rush Alzheimer’s Disease Center in Chicago.8 “I suspect we would see the same thing with dementia,” she said.

Emerging results hint at similar patterns for minority groups with ADRD compared with White patients with ADRD, although findings on this topic remain scant. For example, Black patients with ADRD have lower odds of enrollment in the Medicare Medication Therapy Management program compared with White patients with ADRD (OR, 0.91; 95% CI, 0.86-0.97) during a recent period, according to an August 2022 study published in Current Medical Research and Opinion.9

In a JAMA Network Open study, published in September 2022, researchers examined scores on Consumer Assessment of Healthcare Providers and Systems (CAHPS) measures among 568,368 Medicare beneficiaries with ADRD from various racial and ethnic groups. They included 6 CAHPS measures from Medicare Shared Savings Program Accountable Care Organizations (ACOs) that reflect aspects of patient-centered care:

  • ACO1: receiving timely care, appointments, and information;
  • ACO2: how well providers communicate;
  • ACO3: patients’ rating of provider;
  • ACO4: access to specialists;
  • ACO5: health promotion and education; and
  • ACO6: shared decision-making.

The researchers also combined these measures to create an overall index.10

The results showed lower total CAHPS scores among Black (coefficient, -1.05; 95% CI, -1.15 to -0.95; P <.001), Asian (0.414; 95% CI, -0.623 to -0.205; P <.001), and Hispanic (-0.099; 95% CI, -0.229 to 0.032; P =.14) patients compared with White patients, as well as lower scores on several individual CAHPS measures (ACO1, AC02, ACO3, and ACO4).

Further analysis revealed that social determinants of health, as indicated by the Area Deprivation Index (ADI) of participants’ neighborhoods, accounted for 10% to 13% of the CAHPS disparities observed between groups.10

Addressing Disparities in ADRD: The Future

“We know that diverse populations are much less likely to present to medical attention for conditions like dementia for a variety of reasons such as lack of trust in medical establishments, under-recognition of dementia symptoms, and less access to dementia care specialists, among many others,” Dr Barnes explained. “When they do present, they present much later in the course of the disease. Whether or how that impacts quality of care is not well studied either.”

Among the many remaining needs in this area, she suggests “perhaps starting with raising awareness of dementia in diverse communities and improving access to dementia care specialists, so that we can begin to look at quality of care across race and ethnicity.” 

In addition, ongoing research is focused on “how to provide more clinical resources in underrepresented groups and how to identify risk factors to potentially target” to ultimately reduce disparities and improve outcomes in these populations, Dr Chang noted. Efforts are also needed to increase study enrollment of individuals from underrepresented groups.

For improving care for minority groups with ADRD, researchers from the JAMA Network Open study concluded that “cultural competency training, language, and clinician-patient racial and cultural concordance might be critical.”10 In that vein, Dr Chang points out that UCLA and other institutions are placing a greater emphasis on diversity, equity, and inclusion.11

“Some health systems are trying to hire more people of color and others from underrepresented groups to improve the care of underrepresented patients,” he said. “Patients want to see providers with similar backgrounds and experiences — there’s a big push for that.”

References:

  1. Barnes LL. Alzheimer disease in African American individuals: increased incidence or not enough data? Nat Rev Neurol. Published online December 6, doi:10.1038/s41582-021-00589-3
  2. National Institute on Aging. Data shows racial disparities in Alzheimer’s disease diagnosis between Black and white research study participants. Accessed November 16, 2022. https://www.nia.nih.gov/news/data-shows-racial-disparities-alzheimers-disease-diagnosis-between-black-and-white-research
  3. Kornblith E, Bahorik A, Boscardin WJ, Xia F, Barnes DE, Yaffe K. Association of race and ethnicity with incidence of dementia among older adults. JAMA. Published online April 19, 2022. doi:10.1001/jama.2022.3550
  4. Wright CB, DeRosa JT, Moon MP, et al. Race/ethnic disparities in mild cognitive impairment and dementia: The Northern Manhattan Study. J Alzheimers Dis. Published online April 6, 2021. doi:10.3233/JAD-201370
  5. Lennon JC, Aita SL, Bene VAD, et al. Black and White individuals differ in dementia prevalence, risk factors, and symptomatic presentation. Alzheimers Dement. Published online December 2, 2022. doi:10.1002/alz.12509
  6. Lin PJ, Daly AT, Olchanski N, et al. Dementia diagnosis disparities by race and ethnicity. Med Care. Published online December 7, 2021. doi:10.1097/MLR.0000000000001577
  7. Lin PJ, Zhu Y, Olchanski N, et al. Racial and ethnic differences in hospice use and hospitalizations at end-of-life among Medicare beneficiaries with dementia. JAMA Netw Open. Published online June 9, 2022. doi:10.1001/jamanetworkopen.2022.16260
  8. Yearby R, Clark B, Figueroa JF. Structural racism in historical and modern US health care policy. Health Aff (Millwood). 2022;41(2):187-194. doi:10.1377/hlthaff.2021.01466
  9. Browning JA, Tsang CCS, Zeng R, et al. Racial/ethnic disparities in the enrollment of Medication Therapy Management programs among Medicare beneficiaries with Alzheimer’s disease and related dementias. Curr Med Res Opin. Published August 9, 2022. doi:10.1080/03007995.2022.2103962
  10. Albaroudi A, Chen J. Consumer assessment of healthcare providers and systems among racial and ethnic minority patients with alzheimer disease and related dementias. JAMA Netw Open. September 27, 2022. doi:10.1001/jamanetworkopen.2022.33436
  11. Stanford FC. The importance of diversity and inclusion in the healthcare workforce. J Natl Med Assoc. Published April 23, 2020. doi:10.1016/j.jnma.2020.03.014