The prevalence of Alzheimer’s disease and related dementias (ADRD) is a growing crisis in the United States (US) that is estimated to increase substantially over the next several decades. In 2010, approximately 3.6 million Americans had been diagnosed with ADRD (1). The number of Americans with ADRD is projected to be 13.8 million in 2050, a 283% increase (1). Furthermore, mean per-person costs for Medicare beneficiaries with ADRD were estimated to be $49,126 in 2016, more than triple the average $15,550 costs for Medicare beneficiaries without ADRD (2). Aggregate costs for Medicare beneficiaries with ADRD are expected to increase from $181 billion in 2010 to $1.1 trillion in 2050 (2). Such a dramatic increase in the costs of ADRD would lead to a substantial burden on the Medicare program.
Numerous studies have documented racial and ethnic differences in the prevalence and incidence of ADRD. Specifically, compared to non-Latino whites (whites), non-Latino blacks (blacks) are approximately two times more likely to have ADRD (3, 4) and Latinos are approximately 1.5 times more likely to have ADRD (3, 5, 6). Recent research found that differences among racial and ethnic groups in the prevalence of ADRD decreased between 2000 and 2012 (7). However, the prevalence rates of ADRD were still found to be higher among blacks and Latinos than among whites (19.3%, 16.3%, and 7.4% for blacks, Latinos, and whites, respectively). Incidence rates of ADRD were also higher among blacks and Latinos than among whites (13.8%, 12.2%, and 10.3% for blacks, Latinos, and whites, respectively) (8).
Less is known, however, about racial and ethnic differences in health care expenditures. To the best of our knowledge, only a few studies have examined how health care expenditures related to ADRD vary among racial and ethnic groups (8–10). One study used Medicare fee-for-service claims data for 2014 and found that compared to whites with ADRD, blacks, Latinos, and “others” with ADRD had higher Medicare expenditures ($27,315, $26,280, $21,649, and $20,199 for blacks, others, Latinos, and whites, respectively) (8). Higher expenditures among racial and ethnic minority groups with ADRD might be attributable to limited access to care in the early stages of ADRD, which could lead to delays in treatment and diagnosis and greater morbidity from these diseases, incurring higher health care expenditures after receiving a diagnosis of ADRD. Although a few studies have examined health care expenditures among Medicare beneficiaries with mild cognitive limitation, these studies did not analyze differences based on racial and ethnic groups (11, 12).
While it is important to examine differences in total health care expenditures among racial and ethnic groups to ensure equal access to ADRD care, it is also important to understand patterns of type-specific health care expenditures; focusing only on total health care expenditures might lead to overlooking mechanisms that contribute to health care expenditures among members of racial and ethnic minority groups with ADRD. This is more likely to be relevant to patients with ADRD because cultural preferences can affect the optimal clinical setting for individuals with ADRD and their families. Prior research found that caregivers of black patients were less satisfied with hospital discharge planning than caregivers of white patients were, and that caregivers of black patients used formal home care more than caregivers of white patients did (13, 14). Furthermore, there were substantial racial and ethnic differences in the number of individuals who chose to be admitted to nursing homes; usage of nursing homes was particularly low among Latinos (15). However, it is worth noting that these findings may be also attributable to structural barriers. Additionally, choice of care setting for patients with ADRD is critical because evidence suggests that these patients experience inefficient care delivery and health care utilization. A significant factor in health care utilization among those with ADRD is due to transitions to high-cost settings such as an inpatient setting or skilled nursing facility (16–18); some of these transitions have been shown to be unnecessary or preventable (19–22). This suggests that higher expenditures among patients with ADRD might result from inefficient use of care.
To address this gap, we examined racial and ethnic patterns and differences in health care expenditures among Medicare beneficiaries. We estimated such expenditures among Medicare beneficiaries with cognitive limitation without a diagnosis of ADRD and those diagnosed with ADRD. In addition, we examined various types of health care expenditures: total health care expenditures, out-of-pocket (OOP) expenditures, and six service-specific expenditures.
Our study makes several key contributions to the literature. First, we used data that collects information on race and ethnicity via population survey. Prior research has instead relied on the Medicare claims data. A common concern about the claims data is a lack of in-depth measures of socioeconomic factors that may influence the health care expenditures and racial and ethnic disparities. Using the nationally representative survey data enables us to account for comprehensive measures of demographic and socioeconomic factors. Hence, our finding should be more robust and more accurately predict the racial and ethnic disparities in the amount and pattern of health care expenditures. In addition, we examined racial and ethnic disparities along the trajectory of ADRD (i.e., among Medicare beneficiaries without cognitive limitation, those with cognitive limitation without ADRD, and those with ADRD, respectively). We expect that our findings can identify disparities in the early stages of ADRD and advocate for appropriate prevention screenings or treatment to delay the onset of ADRD among racial and ethnic minority beneficiaries.