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

在家，但足不出户：护理、财务和社区资源对痴呆症患者生活的影响

• 批准号: 10711810
• 负责人: KATHERINE A ORNSTEIN
• 金额: $ 40.94万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-02-01 至 2024-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10711810
• 关键词: Accounting; Acute; Adverse event; Age; Aging; Alzheimer' s disease related dementia; Caregivers; Caring; Censuses; Characteristics; Communities; Companions; Data; Data Analyses; Dementia; Economics; Frequencies; Geography; Health; Health Services Accessibility; Healthcare; Home; Hospitalization; Impaired cognition; Impairment; Income; Individual; Institution; Institutionalization; Insurance; Link; Longitudinal cohort; Low Income Population; Medicaid services; Medical; Medicare claim; Modeling; Neighborhoods; Nursing Homes; Patient-Focused Outcomes; Patients; Personal Satisfaction; Persons; Population; Predictive Factor; Public Policy; Quality of life; Research; Resources; Shapes; Site; Social Network; Social support; Symptoms; Time; Unmarried; Value of Life; Vulnerable Populations; Work; adverse outcome; burden of illness; caregiving; cohesion; cost; examination questions; experience; family caregiving; functional decline; improved; mortality; neighborhood safety; preference; social; social determinants; social factors; trend; walkability

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.

家，但归家：生活的影响，财政和社区资源对生活的影响。 痴呆症患者 摘要/摘要 痴呆症患者在社区的家中生活多年。尽管社区是 由于对护理地点的压倒性偏好，社区痴呆症患者的生活经历并不总是 最适合患者及其家属。我们以前的工作使用的数据来自2011年国家健康 和老龄化趋势研究估计有一百万患有痴呆症的人在家（即，很少或从不 离开家），其中大多数人还患有其他严重的疾病。这些居家人口 老年痴呆症患者的人数比目前生活在养老院的老年痴呆症患者的人数要多。 虽然居家可能会对个人的生活经历产生深远的影响， 痴呆症，我们目前不知道的频率转换或出居家状态或 居家状态对患者生活质量和获得护理的影响。此外，个人的 离开家的能力不仅取决于与之相关的认知和功能下降， 痴呆进展社会资源，包括社区网络（社会支持、看护者可用性 和福祉），财务因素（收入，保险，经济福祉）和社区背景（凝聚力， 步行性、服务可用性）也可能有所贡献。为达致研究目的，我们会采用 纵向，全国代表性的国家健康和老龄化趋势研究和同伴国家 研究护理人员与医疗保险索赔，美国人口普查和其他地理数据的联系。通过 严格分析这些数据，我们将研究社会资源如何影响，如果和当个人与 痴呆症成为居家，居家状态的不良后果，以及关键的因素，帮助 保护患者免受居家状态的影响。除了描述向回家的过渡的时间之外， 老年痴呆症患者的健康状况和养老院安置（目标1），我们还将研究 一个人的生活网络，财政资源和社区/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、未满足的护理需求和潜在可避免的医疗保健使用状况（目标3）。在 总的来说，这个项目将极大地提高我们对痴呆症患者生活经历的理解 通过记录被困在家的频率和持续时间，评估可改变的因素， 预测居家状态，并量化居家状态的后果。

项目成果

Solo but Not Alone: An Examination of Social and Help Networks among Community-Dwelling Older Adults without Close Family.

• DOI: 10.1177/07334648221135588
• 发表时间: 2023-03
• 期刊: JOURNAL OF APPLIED GERONTOLOGY
• 影响因子: 3
• 作者: Lowers, Jane;Zhao, Duzhi;Bollens-Lund, Evan;Kavalieratos, Dio;Ornstein, Katherine A.
• 通讯作者: Ornstein, Katherine A.

"I Depend on Her for Everything": A Retrospective Chart Review of Home Care Worker Service Disruptions for Homebound Older Adults During the COVID-19 Pandemic.

“我一切都依赖她”：对 COVID-19 大流行期间居家老年人的家庭护理人员服务中断的回顾性图表审查。

• DOI: 10.1177/07334648221135584
• 发表时间: 2023
• 期刊: Journal of applied gerontology : the official journal of the Southern Gerontological Society
• 作者: Xu,EmilyL;Kim,PatriciaS;Yee,Cynthia;Zhang,Meng;Reckrey,JenniferM;Lubetsky,Sara;Zhao,Duzhi;Ornstein,KatherineA;Franzosa,Emily
• 通讯作者: Franzosa,Emily

Care disruptions among the homebound during the COVID-19 pandemic: An analysis of the role of dementia.

• DOI: 10.1111/jgs.18008
• 发表时间: 2022-12
• 期刊: JOURNAL OF THE AMERICAN GERIATRICS SOCIETY
• 影响因子: 6.3
• 作者: Reckrey, Jennifer M.;Kim, Patricia S.;Zhao, Duzhi;Zhang, Meng;Xu, Emily;Franzosa, Emily;Ornstein, Katherine A.
• 通讯作者: Ornstein, Katherine A.