Caregiving for Alzheimer's Disease and Related Dementias: Enhancing the National Study of Caregiving (NSOC)

项目摘要：人们普遍认为，生活在他们国家的人数的增长， 80年代和90年代，当阿尔茨海默病和相关痴呆症（ADRD）的风险很大时， 在接下来的几十年里，痴呆症患者的数量将大幅增加。照顾 ADRD患者通常由家庭成员提供，而国家计划解决 阿尔茨海默病的目标之一是提高ADRD患者的护理质量， 对家庭照顾者的支持在如何开展工作方面存在严重的知识差距。这个项目 通过以下方式提高对阿尔茨海默病和相关痴呆症老年人的理解 新的国家纵向数据，建立在国家健康和老龄化趋势研究（NHATS）及其 国家护理研究（NSOC）。独特的NSOC研究设计和提出的新内容 对于NSOC III，将允许在全国范围内对患有和不患有ADRD的老年人的护理人员进行对比。 在NHATS中帮助老年人参与者的照顾者的代表性样本。2011年，NHATS 每年为一个全国代表性小组收集有关残疾和护理需求的详细信息 超过8,000名65岁及以上的成年人通过收集、传播和分析新一轮的NSOC， 拟议的项目将允许研究人员研究一系列关于ADRD治疗的创新问题， 从接受护理者和护理者的角度来看其后果。目标是： 1.重新采访参加2015年NSOC的护理人员和2017年新的老年人护理人员 NHATS。除了核心的NSOC内容，管理一个关于参与医疗保健的新模块和两个 时间日记访谈，以记录前一天的活动和体验到的幸福感。委员会共 预计一个全国代表性的样本约2700照顾老年人，其中包括约900 照顾患有阿尔茨海默病和相关痴呆症的老年人。 2.通过创建一组易于使用的链接纵向文件来广泛传播数据; 在科学会议上举办讲习班;并主办一次侧重于ADRD防治的早期成果讲习班;以及， 3.进行分析，以：1）从两个接受者中确定突出的ADRD非正式护理和康复轨迹 和照顾者的观点; 2）提供非正式ADRD照顾者卫生系统的第一个国家概况 互动;和3）调查非正式ADRD照顾者的福祉和护理活动的作用。为 每个主题，我们将提供与照顾者没有ADRD的老年人的对比。NHATS和NSOC 是唯一一个全国性的，以人口为基础的调查，提供有关一个良好的人口特征的见解 老年人以及因健康和功能原因帮助他们的非正式照顾者的健康状况。这些 数据为研究提供了一个强大的平台，为规划和政策提供信息，以满足对 ADRD护理和支持ADRD护理人员。

PROJECT SUMMARY: There is widespread agreement that growth in the number of people living into their 80s and 90s, when risks of Alzheimer's disease and related dementias (ADRD) are substantial, will dramatically increase the number of people living with dementia over the next few decades. Caregiving to people with ADRD is most often provided by family members and while the National Plan to Address Alzheimer's Disease has among its goals enhancing the care quality for persons with ADRD and expanding supports for family caregivers there are critical gaps in knowledge about how to proceed. This project enhances understanding of caregiving to older adults with Alzheimer's disease and related dementia through new national longitudinal data that builds upon the National Health and Aging Trends Study (NHATS) and its companion National Study of Caregiving (NSOC). The unique NSOC study design and new content proposed for NSOC III will permit contrasts between caregivers to older adults with and without ADRD for a nationally representative sample of caregivers who help older adult participants in the NHATS. Begun in 2011, NHATS collects detailed information annually about the disability and care needs for a nationally representative panel of over 8,000 adults 65 and older. By collecting, disseminating, and analyzing a new round of NSOC, the proposed project will allow researchers to study a range of innovative questions about ADRD caregiving and its consequences from the perspective of both the care recipient and the caregiver. Aims are : 1. Re-interview caregivers who participated in the 2015 NSOC and new caregivers of older adults in the 2017 NHATS. In addition to core NSOC content, administer a new module on involvement in medical care and two time diary interviews to capture activities and experienced wellbeing on the previous day. Altogether, we expect a nationally representative sample of about 2700 caregivers to older adults, including about 900 caring for older adults with Alzheimer's disease and related dementias. 2. Disseminate the data widely by creating a set of easy-to-use linked longitudinal files; holding user workshops at scientific meetings; and hosting an early results workshop focused on ADRD caregiving; and, 3. Conduct analyses to: 1) identify salient ADRD informal care and caregiving trajectories from both recipient and caregiver perspectives; 2) provide the first national profile of informal ADRD caregivers' health system interactions; and 3) investigate the wellbeing of informal ADRD caregivers and the role of care activities. For each topic, we will provide contrasts with caregivers to older adults without ADRD. The NHATS and NSOC are the only national, population-based surveys that provide insight regarding a well characterized population of older adults as well as the informal caregivers who assist them for health and functioning reasons. These data provide a strong platform for research to inform planning and policies to meet the impending demand for ADRD care and to support ADRD caregivers.