Health, Wellbeing, and the Social Networks of Family Caregivers of People with Alzheimer's Disease

阿尔茨海默病患者家庭护理人员的健康、福祉和社交网络

• 批准号: 10163331
• 负责人: Esther M. Friedman
• 金额: $ 31.38万
• 依托单位: RAND CORPORATION
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-15 至 2024-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10163331
• 关键词: Accident and Emergency department; Adherence; Adult; Age; Alzheimer' s Disease; Alzheimer' s disease related dementia; American; Americas; Anxiety; Assisted Living Facilities; Bathing; COVID-19; COVID-19 pandemic; Caregiver support; Caregivers; Caring; Characteristics; Child; Contracts; Data; Data Collection; Dementia; Development; Disease; Drops; Eating; Elderly; Emotional; Ensure; Family; Family Caregiver; Family member; Frequencies; Friends; Generations; Glean; Grooming; Health; Health Care Costs; Healthcare; Height; Home environment; Hospitals; Intervention; Interview; Life; Loneliness; Long-Term Care; Measures; Mediating; Mental Depression; Modeling; Morbidity - disease rate; Network-based; Nursing Homes; Outcome; Parents; Personal Satisfaction; Persons; Pharmaceutical Preparations; Policies; Population; Psyche structure; Public Health; Readiness; Research; Research Personnel; Respondent; Risk; Role; Sampling; Schools; Services; Social Distance; Social Network; Social Well-Being; Social isolation; Social support; State Government; Sterile coverings; Structure; Support System; Surveys; System; Technology; Testing; Time; Typology; United States; Visit; Visualization; Work; adverse outcome; base; care burden; care giving burden; care outcomes; care recipients; care systems; caregiving; cohesion; community based service; community living; cost; experience; falls; family caregiving; follow-up; high risk; improved; loved ones; member; mortality; pandemic disease; parent grant; physical separation; prevent; public health emergency; resilience; response; social; social separation; social vulnerability; stem; support network; transmission process; virtual

Project Summary Alzheimer’s disease and related dementias are estimated to be among the most costly health conditions in America, with the bulk of the costs stemming from the provision of long-term services and supports: that is, help with everyday activities, such as bathing, dressing, grooming, using the toilet, eating, and moving around. Family and friends provide most of this care, often at great financial, emotional, and physical expense to themselves. This burden can be alleviated somewhat through a strong support system—a cohesive network of family and friends coordinating and communicating to provide support to both the caregiver and the care recipient—yet to date there is little research examining these support networks. This is surprising given that stronger networks are consistently associated with better health outcomes. And this may be particularly true for caregivers: because social networks change along with life transitions, caregiving potentially puts caregivers at risk of social isolation and worsened health. The handful of prior studies on this topic have significant limitations: namely, they focus on populations outside the U.S. or on older adults. This will be the first study to collect data on the social networks of family caregivers in a nationally representative online panel study of adults in the U.S., age 18 and over. Our aim is to identify family caregivers across the age spectrum to increase representativeness, measure extended perceived caregiver networks, and capture greater detail on caregiver network composition and structure (e.g. “weak” ties, negative ties, frequency of contact, emotional closeness, or type of ties). We will examine common network typologies and their associations with a variety of measures of physical, mental, and social well-being, and we will test for potential mediating factors, including the caregiving context and care recipient health. Finally, we will examine change in caregivers’ social networks and how it may be associated with caregiver health over the caregiving cycle. This work will help researchers and policymakers identify the network characteristics of caregivers that matter most for a variety of health and well-being outcomes over time. It is also a critical first step for collecting empirical data that can inform the development of caregiving interventions that incorporate social network-based interventions—for example, technology-based interventions that provide personalized network visualizations to trigger strategies for altering networks (e.g., dropping ties, connecting disconnected ties, or spending more time with supportive network members)—to improve the health and well-being not only of adults with dementia but also of their caregivers.

项目摘要 阿尔茨海默氏病和相关痴呆症估计是最昂贵的健康状况之一 美国的大部分费用是由长期服务和支持提供的：也就是说，也就是说 帮助每天的活动，例如洗澡，穿衣，修饰，使用厕所，进食和四处走动。 家人和朋友提供大部分的护理，通常以巨大的财务，情感和身体支出来提供 自己。可以通过强大的支持系统来减轻该伯宁的凝聚力 - 一个凝聚力的网络 家人和朋友协调和交流以为照料者和护理提供支持 接收者 - 到目前为止，几乎没有研究这些支持网络。鉴于 更强大的网络与更好的健康成果始终如一。这可能尤其正确 对于护理人员：由于社交网络随着生活过渡而改变，护理可能会使护理人员 有社会隔离的风险并恶化了健康。关于该主题的少数先前研究具有重要的 局限性：即，他们专注于美国以外的人群或老年人。这将是第一个研究 在全国代表性的在线小组研究中，收集有关家庭护理人员社交网络的数据 美国成年人，18岁及以上。我们的目的是确定整个年龄范围内的家庭护理人员以增加 表示，衡量扩展感知的护理人员网络，并捕获有关护理人员的更多细节 网络组成和结构（例如“弱”领带，负联系，接触频率，情感亲密关系或 领带类型）。我们将通过各种测量值检查常见的网络类型及其关联 身体，精神和社会福祉，我们将测试潜在的中介因素，包括 护理背景和护理接受者健康。最后，我们将研究照顾者社交网络的变化， 在护理周期中，它如何与护理人员的健康相关联。这项工作将帮助研究人员和 决策者确定护理人员的网络特征，这些特征对各种健康和 随着时间的流逝，福祉结果。这也是收集可以告知经验数据的关键第一步 开发纳入基于社交网络干预措施的护理干预措施，例如 基于技术的干预措施，可提供个性化的网络可视化，以触发策略 更改网络（例如，掉落联系，连接断开的关系或花费更多时间来支持 网络成员） - 不仅要改善痴呆症的成年人的健康和福祉 照顾者。