Homebound with Dementia in the Context of COVID-19

Homebound with Dementia in the Context of COVID-19Summary/AbstractIndividuals with dementia live for many years at home in the community. Even though the community is theoverwhelming preference for site of care, the experience of living with dementia in the community is challengingfor patients and their caregiving families. In the existing parent grant, we examine how being homebound impactsthe lived experience of individuals with dementia using the longitudinal, nationally representative National Healthand Aging Trends Study and the companion National Study of Caregivers with linkages to Medicare claims, theU.S Census, and other geographic data. In this supplement, we examine the impact of COVID-19 on homeboundadults with dementia and their caregiving families in the epicenter of the pandemic, New York City. Usingroutinely collected data within the Mount Sinai Health System, we will examine change in care delivery forhomebound patients during COVID-19 outbreak in NYC, compare end-of-life care experiences for homeboundpatients and caregivers before, during, and after the COVID-19 pandemic, and conduct an in-depth analysis ofcare disruptions for homebound patients with dementia during COVID-19. In summary, this project will criticallyenhance our understanding of the lived experience of patients with dementia by examining their experienceaccessing care throughout this pandemic. Prior to the onset of COVID-19, homebound older adults with dementiafaced social isolation and routine challenges to accessing healthcare. Patients are highly reliant on familycaregivers for daily support.1 In the wake of this pandemic, there are tremendous and unprecedented challengesfor these individuals and their caregivers who support them. The proposed study will allow for the firstdocumentation of the homebound experience before, during, and after the peak of COVID-19 infections in NewYork City and will set the stage for new guidelines and research into emergency preparedness, programadaptations and partnerships with community organizations for persons living with dementia in the communityand their caregiving families.