Trends and Dynamics in Caregiving for Alzheimer’s Disease and Related Dementias: Extending the National Study of Caregiving

项目摘要 该项目将提高对老年痴呆症患者非正式护理的理解， 通过建立在国家健康和老龄化基础上的新的国家纵向数据， 趋势研究（NHATS）及其同伴国家护理研究（NSOC）。NHATS和NSOC一起 是唯一一个关于向一个具有良好特征的老年人群体提供观点的国家数据， 来自护理者和接受者。NHATS每年收集有关残疾和护理的详细信息 需要一个由8，000多名65岁及以上成年人组成的具有全国代表性的小组。NSOC采访了 NHATS参与者关于所提供的护理，护理的积极和消极方面，支持环境， 以及其他生活环境（如就业、健康、福祉）。到目前为止，NSOC已在 不定期（2011、2015和2017年）。虽然提供了重要的分析机会， 对于有或没有ADRD的老年人， 充分利用这些数据。人们对即将发生的变化缺乏基本的了解， 作为婴儿潮一代，潜在的人口力量将塑造照顾者的经验和结果 继续老化。该项目将通过以下方式填补这些空白：（1）开展四轮NSOC年度（2020-2023）; (2)每年通过www.nhatsdata.org传播NSOC，编写在线用户材料， 培训用户使用多波NSOC的讲习班，并主办NSOC用户研究会议; （3）进行有针对性的分析，以描述近期（2011-2020年）和长期（1999-2020年）的趋势， 非正式的ADRD护理经验和结果，了解推动这种趋势的人口力量， 突出ADRD和其他护理人员之间的对比。通过收集和传播一份新的年度《国家统计公报》， 该项目将使研究人员能够研究有关非正式协商的各种创新问题 老年ADRD患者。

Project Summary This project will enhance understanding of informal caregiving to older adults with Alzheimer's disease and related dementia (ADRD) through new national longitudinal data that builds upon the National Health and Aging Trends Study (NHATS) and its companion National Study of Caregiving (NSOC). Together, NHATS and NSOC are the only national data on caregiving to a well characterized population of older adults that offer perspectives from both caregiver and recipient. NHATS collects detailed information annually about the disability and care needs for a nationally representative panel of over 8,000 adults 65 and older. NSOC interviews caregivers of NHATS participants about the care provided, positive and negative aspects of caring, the support environment, and other life circumstances (e.g. employment, health, wellbeing). Until now NSOC has been conducted at irregular intervals (2011, 2015 and 2017). Although offering important analytic opportunities, key aspects of caregiving including dynamics over time and at the end of life for older adults with and without ADRD cannot be adequately addressed with these data. And basic knowledge is lacking about how impending changes in underlying demographic forces will shape caregiver experiences and outcomes as the Baby Boom generation continues to age. This project will fill these gaps by: (1) Conducting four annual rounds of NSOC (2020-2023); (2) Disseminating NSOC each year through www.nhatsdata.org, developing online user materials, holding workshops to train users to use multiple waves of NSOC, and hosting an NSOC User Research Conference; and (3) Conducting targeted analyses to describe recent (2011-2020) and longer-term (1999-2020) trends in informal ADRD care experiences and outcomes, understand demographic forces driving such trends, and highlight contrasts between ADRD and other caregivers. By collecting and disseminating a new, annual NSOC, the proposed project will allow researchers to study a variety of innovative questions about informal caregiving for older adults with ADRD.