Call for Collecting and Reporting Disaggregated Data for Centering Racial Inclusion and Equity in the U.S. and Globally: Examining Multimorbidity and Risk for Cognitive Impairment in the Asian American Populations

Abstract

AbstractBackgroundAsian American subgroups are underrepresented in Alzheimers Disease and Related Dementias (ADRD) research in the U.S. and globally.MethodOur approach was threefold: First, we identified data collection and reporting gaps for ADRD among Asian Americans in the U.S from multiple nationally representative surveys, e.g. Health and Retirement Survey, Medical Expenditure Panel Survey, and the Census. Second, we examined multi‐morbidity (e.g. diabetes, hypertension, cardiovascular disease and stroke) burden among a specific group of Asian Americans, South Asian Indians. Third, we provide knowledge gaps and recommendations for inclusion of Asian Americans to center racial equity in ADRD science.ResultDespite being a highly heterogeneous group and diverse in terms of culture, diet, language, Asian Americans are lumped together in national surveys. The three national surveys we examined in the U.S. have not collected disaggregated data on Asian Americans, a group that is growing in the U.S. Moreover, there is a lack of disease registers for different groups of Asian Americans which makes it difficult to assess and quantify the prevalence and burden of ADRD in this group. Due to a lack of systematic data collection efforts, the extent of dementia burden and classification of dementia cannot be accurately examined in the sub‐groups of Asian Americans. The data gaps in the collection and reporting of data on sub‐groups of Asian Americans prevent from designing culturally and linguistically sensitive interventions which are highly needed for sub‐groups of Asian Americans. South Asian Indians, a sub‐group of Asian Americans, considered to be of higher socioeconomic background in the U.S. were seldom omitted from the minority classification despite having a higher burden of multiple chronic conditions such as diabetes, hypertension, cardiovascular disease, and stroke, i.e. multi‐morbidity combinations which can greatly contribute to increased ADRD risk in this sub‐group.ConclusionThere is a critical need for the collection and reporting of disaggregated ADRD data on Asian Americans for centering racial equity in ADRD science in the U.S. Such efforts will aid in the understanding of mechanistic pathways for vascular cognitive impairment via inclusion of unique Asian populations that have been underrepresented in ADRD research both in the U.S. and globally.