Home, but homebound: The impact of caregiving, financial, and community resources on the lives of individuals with dementia

居家，但居家：照顾、经济和社区资源对老年人生活的影响 痴呆症患者 摘要/摘要 痴呆症患者在社区的家中生活多年。即使这个社区是 对于护理场所的压倒性偏好，社区中与痴呆症生活在一起的经历并不总是 最适合患者和他们的护理家庭。我们之前的工作使用了2011年国民健康报告中的数据 老龄化趋势研究估计，100万痴呆症患者呆在家里(即很少或从不在家 他们中的大多数还患有其他严重的疾病。这些不愿回家的人 痴呆症患者人数超过目前住在养老院的痴呆症患者人数。 尽管呆在家里很可能会对个人的生活体验产生深远的影响 痴呆症，我们目前不知道进入或离开居家状态或 待在家里的状态对患者的生活质量和获得护理的影响。此外，个人的 离开家的能力不仅仅是由认知和功能衰退决定的 痴呆症的进展。社会资源，包括照看网络(社会支持、照顾者可用性 经济因素(收入、保险、经济福利)和社区环境(凝聚力、 可步行、服务可获得性)也可能做出贡献。为达致研究目标，我们会利用 纵向的、具有全国代表性的国民健康和老龄化趋势研究及其配套国家 对与医疗保险索赔、美国人口普查和其他地理数据相关联的照顾者的研究。穿过 对这些数据的严格分析，我们将研究社会资源如何影响个人 痴呆症变得呆在家里，这是回家状态的不利后果，更重要的是，有助于 保护患者免受居家状态的影响。除了描述向返乡方向转变的时间之外 痴呆症患者的状况和养老院安置(目标1)，我们还将审查 照料网络、财务资源和社区/邻里环境对过渡到 痴呆症患者的居家状态(目标2)，并评估居家的后果 有价值的生活活动、未得到满足的护理需求和潜在的可避免的卫生保健使用情况(目标3)。在……里面 总结，这个项目将极大地增强我们对痴呆症患者生活经历的理解。 通过记录待在家里的发作的频率和持续时间，评估可修改的因素 预测回家状态，并量化回家状态的后果。

Home, but homebound: The impact of caregiving, financial, and community resources on the lives of individuals with dementia 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 not always optimal for patients and their caregiving families. Our previous work using data from the 2011 National Health and Aging Trends Study estimated that one million persons with dementia are homebound (i.e., rarely or never leave the home), the majority of whom also have other serious medical illnesses. This homebound population with dementia is larger than the number of individuals with dementia currently living in nursing homes. Although being homebound is likely to have a profound impact on the lived experience of individuals with dementia, we currently do not know the frequency of transitions in or out of homebound status or the implications of homebound status for patients' quality of life and access to care. Furthermore, an individual's ability to leave the home is not only determined by the cognitive and functional decline associated with dementia progression. Social resources including caregiving networks (social support, caregiver availability and well-being), financial factors (income, insurance, economic well-being), and community context (cohesion, walkability, service availability) also are likely to contribute. To achieve the study aims, we will use 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. Through rigorous analysis of these data, we will examine how social resources impact if and when individuals with dementia become homebound, adverse consequences of homebound status, and critically, factors that help protect patients against homebound status. In addition to characterizing the timing of transitions to homebound status and nursing home placement among individuals living with dementia (Aim 1), we will also examine the impact of one's caregiving network, financial resources, and community/neighborhood context on transitions to homebound status among individuals with dementia (Aim 2), and evaluate the consequences of homebound status on valued life activities, unmet care needs, and potentially avoidable health care use (Aim 3). In summary, this project will critically enhance our understanding of the lived experience of patients with dementia by documenting the frequency and duration of episodes of being homebound, evaluating modifiable factors that predict homebound status, and quantifying the consequences of homebound status.