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 据估计，阿尔茨海默病和相关痴呆症是美国最昂贵的健康状况之一。 美国，大部分费用来自提供长期服务和支持：也就是说， 帮助日常活动，如洗澡，穿衣，梳洗，使用厕所，吃饭和走动。 家庭和朋友提供了大部分的照顾，通常在经济上，情感上和身体上都付出了巨大的代价， 自己这种负担可以通过一个强有力的支持系统-一个有凝聚力的网络-得到某种程度的减轻。 家人和朋友协调和沟通，为照顾者和照顾者提供支持 然而，迄今为止，几乎没有研究检查这些支持网络。这令人惊讶，因为 更强大的网络始终与更好的健康成果相关。这可能是特别正确的 对于看护者：由于社交网络随着生活的转变而沿着变化， 面临着社会孤立和健康恶化的风险。关于这一主题的少数先前研究具有重要意义 局限性：也就是说，他们专注于美国以外的人群或老年人。这将是第一项研究， 在一项全国代表性的在线小组研究中收集关于家庭照顾者社交网络的数据， 美国的成年人，18岁及以上。我们的目标是确定不同年龄段的家庭照顾者， 代表性，测量扩展的感知照顾者网络，并捕捉照顾者的更多细节 网络组成和结构（例如，“弱”关系、负面关系、联系频率、情感亲密度，或 领带的类型）。我们将研究常见的网络类型及其与各种衡量标准的关联， 身体，精神和社会福祉，我们将测试潜在的调解因素，包括 照顾环境和照顾接受者的健康。最后，我们将研究照顾者社交网络的变化， 它如何与整个生育周期内的护理人员健康相关联。这项工作将有助于研究人员和 政策制定者确定护理人员的网络特征，这些特征对各种健康和 随着时间的推移，幸福的结果。这也是收集经验数据的关键第一步， 制定包含基于社会网络的干预措施的干预措施-例如， 基于技术的干预措施，提供个性化的网络可视化，以触发策略， 改变网络（例如，放弃关系，连接断开的关系，或花更多的时间与支持 网络成员）-改善健康和福祉，不仅是成年痴呆症患者， 照顾者