Family care to nursing home residents and state essential caregiver programs during the COVID-19 pandemic: impact on dementia care, outcomes, and disparities

Project Summary/Abstract Approximately 6.5 million older adults in the United States currently live with Alzheimer's Disease or Related Dementia (ADRD) and this number is projected to increase to 12.7 million by 2050. Most persons with ADRD require nursing home (NH) care during the course of their illness, and about 70% of them die in NHs. Among NH residents, almost 50% have a diagnosis of ADRD. The risk of dementia is higher for racial/ethnic minorities than non-Hispanic whites, and racial/ethnic minorities with ADRD experience higher levels of cognitive impairment and higher prevalence of behavioral and psychiatric symptoms of dementia. Together, these increase the risk of NH placement for racial/ethnic minority older adults, and the level of NH care they need after placement. However, strong evidence suggests that racial/ethnic minority NH residents with ADRD receive less adequate care (e.g. more feeding tube use) and have worse health outcomes (e.g. higher hospitalization rate) than non-Hispanic white ADRD residents. Informal care, or unpaid care provided by family members or friends, is common for NH residents with and without ADRD. However, family care to NH residents was seriously disrupted during the COVID-19 pandemic due to extended NH lockdown. To mitigate the disrupted family care,18 states established essential caregiver (EC) programs during 2020-21 which allowed NH residents to have in-person access to family or other caregivers under national public health emergency. This study proposes to determine (1) the impacts of informal family care on the health outcomes of NH residents with and without ADRD, their family caregivers, and racial/ethnic residents with ADRD; and (2) the associations of state EC programs with informal caregiving during the COVID-19 pandemic, and with resident and family caregiver health outcomes. This project will employ the 2008-22 Health and Retirement Study (HRS) survey data and other existing data files to address study aims. Findings of the study will provide critical insights into the role of family caregiving to the health of NH residents with ADRD and their families, and into the potential impact of state policies designed to foster family caregiving in NHs during future public health emergencies.