Researchers at the USC Schaeffer Center for Health Policy & Economics contributed multiple studies to a special issue of Alzheimer’s & Dementia titled Advancing Dementia Care and Caregiving Science in Alzheimer’s Disease and Related Dementias. Several of the studies were supported by the National Institute on Aging (NIA)-funded Center for Sociodemographic and Economic Study of Alzheimer’s and Related Dementias (CeASES ADRD) and USC AD/ADRD Resource Center for Minority Aging Research (USC AD/ADRD RCMAR).
Julie Zissimopoulos, co-director of the Aging and Cognition Research Program at the Schaeffer Center and professor at the USC Price School, served as guest co-editor on the issue. The special issue was developed out of discussions and collaborations initiated at the 2023 National Institute on Aging Research Summit on Dementia Care and Caregiving, where Zissimopoulos served as Summit co-chair with guest co-editor Andrea Gilmore Bykovsky, associate professor at the University of Wisconsin School of Medicine and Public Health.
Schaeffer researchers explored topics including government support for informal care partners, clinical trial research participation and the societal cost of cognitive impairment. The special issue, which includes more than 40 studies, is available here, and brief descriptions of the Schaeffer researchers’ findings are below.
Medicaid support for families
State Medicaid 1915(c) home- and community-based waiver programs that pay family members for caregiving reduced reliance on formal care, particularly among people living with dementia, Medicaid beneficiaries and rural residents. These findings suggest that compensating family caregivers can help mitigate the economic consequences of family caregiving.
Authors: Johanna Thunell, Elise Parrish and Katherine Miller
Disparities in clinical research
While the lack of racial and ethnic representation in dementia clinical research is well recognized, less is known about socioeconomic differences among participants. Using 100% Medicare claims, researchers compared beneficiaries who participated in the IDEAS (Imaging Dementia–Evidence for Amyloid Scanning) study with eligible beneficiaries who did not enroll. Participants were less likely to be dually enrolled in Medicare and Medicaid and more likely to live in higher-income counties, highlighting the socioeconomic differences in who ultimately participates in dementia research.
Authors: Sidra Haye, Patricia Ferido and Mireille Jacobson
Insurance design and diagnosis
Dementia diagnosis rates differ between Medicare Advantage (MA) and Traditional Medicare (TM). Comparing similar beneficiaries seen by the same primary care providers, researchers found that MA patients had lower rates of diagnosed dementia and were less likely to see dementia specialists than comparable TM patients, suggesting insurance design may influence diagnosis.
Authors: Sidra Haye, Mireille Jacobson and Julie Zissimopoulos
Uneven burden of cognitive impairment
Cognitive impairment imposes a substantial and uneven economic burden, with average lifetime costs of $124,000 per person—totaling an estimated $627 billion nationwide. Costs are highest for individuals who develop cognitive impairment before age 65, highlighting the outsized impact of early-onset disease. The burden falls disproportionately on racial and ethnic minority populations and individuals without a high school degree.
Authors: Tadeja Gracner, Ritika Chaturvedi, PhuongGiang Nguyen, Hanke Heun-Johnson, Bryan Tysinger, Dana Goldman and Darius Lakdawalla
Dementia care in an aging society
As one of the world’s most rapidly aging societies, South Korea’s efforts to mitigate the social burden of dementia may provide valuable insights for other countries. A review of 25 years of dementia care research and policy in South Korea shows the benefits of providing national coverage for medical and long-term care.
Authors: Karen Eggleston and Daejung Kim
Acknowledgements: CeASES ADRD is supported through award P30AG066589, and USC AD/ADRD RCMAR through award P30AG043073.
