Homebound with Dementia in the Context of COVID-19

2019冠状病毒病背景下的居家痴呆症患者 摘要/摘要 痴呆症患者在社区的家中生活多年。尽管社区是 对护理地点的压倒性偏好，在社区中与痴呆症患者一起生活的经历具有挑战性 为患者和他们的家属提供帮助。在现有的父母补助金中，我们研究了如何在家影响 痴呆症患者的生活经验，使用纵向的，全国代表性的国家健康 和老龄化趋势研究以及与医疗保险索赔有关的全国护理人员研究， 美国人口普查和其他地理数据。在这份补编中，我们研究了COVID-19对居家旅行的影响， 在流行病的中心纽约市，患有痴呆症的成年人和他们的家人。使用 在西奈山卫生系统内定期收集的数据，我们将检查护理服务的变化， 纽约市COVID-19爆发期间居家患者，比较居家患者的临终关怀体验 在COVID-19大流行之前、期间和之后，对患者和护理人员进行深入分析， 2019冠状病毒病期间居家痴呆患者的护理中断。总之，该项目将严格 通过检查痴呆症患者的经历，加强我们对他们生活经历的理解 在这场流行病中获得护理。在COVID-19发病之前，患有痴呆症的居家老年人 面临着社会孤立和获得医疗保健的常规挑战。患者高度依赖家人 1在这一大流行病之后， 为这些人和他们的照顾者谁支持他们。拟议的研究将允许第一个 记录新冠肺炎感染高峰期之前、期间和之后的居家经历 约克市，并将为新的指导方针和研究应急准备， 与社区组织合作，为社区中的痴呆症患者进行调整 和他们的家人。

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.