Medicare data analysis shows racial and ethnic disparities in dementia care costs

An analysis of Medicare claims data found that dementia care expenditures were higher for Black and Hispanic people than White beneficiaries. These NIA-funded study results were published in the Journal of the American Geriatrics Society.

A research team led by investigators from Tufts Medical Center studied 16 years of data from the NIA Health and Retirement Studyalong with linked Medicare claims data. The researchers looked at participants, age 65 and older, who were diagnosed with dementia between 2000 and 2016. From this group, they identified 5,532 individuals who were enrolled in Medicare at least one year prior to their initial dementia diagnosis and during the six months before death. At the time of their initial dementia diagnosis, participants were on average 81 years old, and 61% were women.

The investigators assembled a picture of comparative dementia care costs for racial and ethnic groups across four phases: the year before a diagnosis, the first year after diagnosis, ongoing care, and the last year of life. They found that the total Medicare expenditures over all four phases averaged $165,730 for Black beneficiaries; $160,442 for Hispanic; and $136,326 for White.

These disparities were apparent across the multiple phases of dementia care studied. Average Medicare expenditures in the year preceding diagnosis totaled $26,337 for Black beneficiaries compared to $23,176 for Hispanics and $21,399 for Whites. Average expenditures for the year immediately after diagnosis were $20,429 for Black beneficiaries; $17,182 for Hispanics, and $18,244 for Whites. The ongoing care phase average cost breakdown for each group was $67,671 for Black beneficiaries; $72,615 for Hispanics; and $57,184 for Whites. Over all four phases of care, expenditures were highest for Black Medicare recipients with dementia.

The final year of life was the most expensive for all three groups, but Medicare spending for Black ($51,294) and Hispanic ($47,469) beneficiaries remained far above that of Whites ($39,499). According to the research team, these differences, especially in the last year of life, were mostly due to greater use of high-cost medical services such as the emergency department, inpatient hospital stays, and intensive care.

The researchers underscored that some differences in care utilization could have been due to patient, cultural, or caregiver preferences. The results also raised questions about possible racial and ethnic disparities in dementia care coordination, frequency of follow-up visits, and communication about and access to different care options, especially at the end of life.

The authors noted some limitations to the scope of their study, including that current Medicare claims-based algorithms could lead to biases in analysis by race and ethnicity. They also pointed out that the study was not able to account for the costs of informal family and community care resources, which tend to be used more often by Black and Hispanic families. The scientists aim to expand this research to include additional racial/ethnic groups, including Asian Americans, Pacific Islanders, and American Indians.

This research was supported in part by NIA grant R01AG060165.

These activities relate to relate to NIH's AD+ADRD Research Implementation Milestone 13.M, "Health Equity: Research on disparities in health care access."

Reference: Olchanski N, et al. Racial and ethnic differences in disease course Medicare expenditures for beneficiaries with dementia. Journal of the American Geriatrics Society. 2024;72(4):1223-1233. doi:10.1111/jgs.18822.