2024 Health Disparities, Policy and Ethics in Alzheimer’s Disease and Dementia Research (HPE-ADRD)

Understanding Disparities in Dementia Care Access and Quality

How do structural factors impact access to and quality of dementia care across the U.S.?

Emily O'Brien, Ph.D.
Duke University School of Medicine
Durham, NC - United States

Background

According to the 2024 Alzheimer’s Association Facts and Figures report, older Black Americans are disproportionately more likely to have Alzheimer’s and experience poorer outcomes once diagnosed than older White Americans. Research shows that structural factors, such as living in a disadvantaged neighborhood or lacking access to local healthcare resources, contribute to health disparities. However, it is unknown whether access to and quality of dementia care vary by geography, nor how this variation may impact people from different racial or ethnic backgrounds. In addition, there is limited research on what “high-quality care” means from the perspectives of people with dementia and their caregivers.

Research Plan

Dr. Emily O’Brien and colleagues will study patient and caregiver priorities and structural barriers to dementia care across the United States. First, the researchers will collect and evaluate multiple perspectives on access and quality of dementia care through interviews with individuals with dementia and their caregivers, as well as through focus groups with professional caregivers. Next, the team will leverage national Medicare data to study variation in healthcare access and use among individuals with dementia by race, ethnicity, and location. They will assess associations between race/ethnicity, rural/urban location, neighborhood deprivation, and healthcare access and quality for individuals with dementia. 

Finally, Dr. O’Brien and colleagues will combine their findings to create a Dementia Care Report Card, a novel tool to inform the public about dementia care and promote equity for individuals with dementia in the U.S. 

Impact

If successful, this project will identify barriers to equitable dementia care, show how structural factors impact health disparities, and create a new public resource for individuals with dementia and their caregivers.