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.

家但居住：照料，财务和社区资源对生活的影响 患有痴呆症的人 摘要/摘要 痴呆症患者在社区的家中生活了多年。即使社区是 对护理现场的压倒性偏爱，社区中患有痴呆症的经验并不总是 最适合患者及其护理家庭。我们以前使用2011年国家卫生的数据的工作 衰老趋势研究估计，有100万痴呆症患者是家里的（即很少或从不 离开家），大多数人也患有其他严重的医疗疾病。这个自家人口 痴呆症大于目前居住在疗养院中的痴呆症患者的数量。 尽管在家中可能会对个人的生活经历产生深远影响 痴呆症，我们目前不知道过渡的频率在家中或外部状态或 家里身份对患者生活质量和获得护理的影响。此外，一个人的 离开家的能力不仅取决于与 痴呆进展。社会资源包括护理网络（社会支持，护理人员的可用性 和福祉），财务因素（收入，保险，经济福祉）和社区环境（凝聚力， 步行性，服务可用性）也很可能会做出贡献。为了实现研究的目的，我们将使用 纵向，全国代表性的民族健康和衰老趋势研究和同伴国家 与Medicare主张，美国人口普查和其他地理数据联系的护理人员的研究。通过 对这些数据的严格分析，我们将研究社会资源在与患有的个人时如何影响 痴呆成为家里的痴呆症，家居状况的不利后果，以及批判性的因素，可以帮助 保护患者免受家里状态。除了表征过渡到本地的时间 身份和养老院的安置在患有痴呆症的人中（AIM 1），我们还将检查 一个人的护理网络，财务资源和社区/邻里环境对过渡到向 痴呆症患者（AIM 2）中的家居状况，并评估居家的后果 有价值的生活活动，未满足的护理需求以及可能避免的医疗保健使用的状态（AIM 3）。在 总而言之，该项目将严重增强我们对痴呆症患者的生活经历的理解 通过记录众议院发作的频率和持续时间，评估可修改因素 这可以预测家里的状态，并量化家居状态的后果。

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.