Homebound with Dementia in the Context of COVID-19 Summary/Abstract Individuals with dementia live for many years at home in the community. Even though the community is the overwhelming preference for site of care, the experience of living with dementia in the community is challenging for patients and their caregiving families. In the existing parent grant, we examine how being homebound impacts the lived experience of individuals with dementia using the longitudinal, nationally representative National Health and Aging Trends Study and the companion National Study of Caregivers with linkages to Medicare claims, the U.S Census, and other geographic data. In this supplement, we examine the impact of COVID-19 on homebound adults with dementia and their caregiving families in the epicenter of the pandemic, New York City. Using routinely collected data within the Mount Sinai Health System, we will examine change in care delivery for homebound patients during COVID-19 outbreak in NYC, compare end-of-life care experiences for homebound patients and caregivers before, during, and after the COVID-19 pandemic, and conduct an in-depth analysis of care disruptions for homebound patients with dementia during COVID-19. In summary, this project will critically enhance our understanding of the lived experience of patients with dementia by examining their experience accessing care throughout this pandemic. Prior to the onset of COVID-19, homebound older adults with dementia faced social isolation and routine challenges to accessing healthcare. Patients are highly reliant on family caregivers for daily support.1 In the wake of this pandemic, there are tremendous and unprecedented challenges for these individuals and their caregivers who support them. The proposed study will allow for the first documentation of the homebound experience before, during, and after the peak of COVID-19 infections in New York City and will set the stage for new guidelines and research into emergency preparedness, program adaptations and partnerships with community organizations for persons living with dementia in the community and their caregiving families.
Homebound with Dementia in the Context of COVID-19 Project Narrative The purpose of the proposed supplement is to examine the impact of COVID-19 on homebound adults with dementia and their caregiving families in the epicenter of the pandemic, New York City. Using routinely collected data within the Mount Sinai Health System, we will examine changes in care delivery for homebound patients during COVID-19 outbreak in NYC; compare end-of-life care experiences for homebound patients and caregivers before, during, and after the COVID-19 pandemic; and conduct an in-depth content analysis of care disruptions for homebound patients with dementia during COVID-19. Study findings will identify key gaps in care for the homebound with dementia, and will inform policy and health system changes for COVID-19 and future crises.
