More than 80% of persons living with Alzheimer's Disease and Related Dementias (ADRD) receive care from one or more of their family members or friends.1 This proportion is even higher among individuals from low- and middle-income countries (LMICs) such as China where high-quality institutional and community care for dementia is limited.2 Prior studies have shown that dementia interventions can improve the health and well-being of persons with ADRD.3 However, most of these programs are intense, multicomponent, resource-demanding, focus only on the primary caregiver, and have mainly been tested in Non-Hispanic White populations.3,4 With an increasingly diverse older-adult population in the U.S. and worldwide, it is unclear whether these current dementia care programs are equally appropriate and/or easy to implement among persons with ADRD from other cultural backgrounds, socioeconomic statuses, and/or community settings. For example, in China, cultural expectations of caregiving within the home/family (e.g. filial piety), changes in family structures (e.g. urbanization and migration), intergenerational living environments (e.g. multigenerational households), and involvement by non-family members (e.g. friends and neighbors) contribute to a wide array of caregiving networks for persons with ADRD.5,6 Therefore, identifying major types of caregiving networks is critical for capturing the demand for informal caregiving and other support(s) and services. Without such knowledge, the development and implementation of effective, equitable, and person-centered interventions and policies to support caregivers for persons with ADRD worldwide will remain elusive.
To address this critical gap, we assembled an interdisciplinary team of experts with more than a decade of collaboration in population aging, dementia care, family caregiving, social ties, large longitudinal studies, and global health. We propose to leverage Common Data Elements (CDE) from the U.S. Health and Retirement Study (HRS) and China Health and Retirement Longitudinal Study (CHARLS) to provide a comprehensive and real-world understanding of caregiving networks among persons with ADRD. We aim to: Aim 1: Identify major types of caregiving networks among persons with ADRD in the U.S. and in China using Latent Class Analysis. Aim 2: Assess factors associated with the types of caregiving networks.