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

项目摘要 该项目将加强对阿尔茨海默病老年患者非正式护理的了解，并 相关痴呆症(ADRD)通过建立在国民健康和老龄化基础上的新的国家纵向数据 趋势研究(NHATS)及其配套的全国护理研究(NSOC)。NHATS和NSOC一起 是唯一一份关于照顾特征良好的老年人群体的全国性数据，提供了观点 来自照顾者和接受者。NHATS每年收集有关残疾和护理的详细信息 需要一个由8000多名65岁及以上的成年人组成的具有全国代表性的小组。美国国家奥委会采访儿童照顾者 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一直在 不定期(2011年、2015年和2017年)。尽管提供了重要的分析机会，但 对于患有和不患有ADRD的老年人来说，照顾包括随着时间的推移和生命末期的动态变化不能 充分处理了这些数据。而且缺乏关于即将发生的变化的基本知识 潜在的人口因素将塑造婴儿潮一代的照顾者体验和结果 继续变老。该项目将通过以下方式填补这些空白：(1)开展四轮国家SOC年度会议(2020-2023年)； (2)每年通过www.nhatsdata.org传播NSOC，开发在线用户材料，举办 举办讲习班，培训用户使用多波NSOC，并主办一次NSOC用户研究会议； 以及(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因素，以及 ADRD与其他照顾者之间的突出对比。通过收集和传播新的年度NSOC， 拟议的项目将允许研究人员研究各种关于非正式照料的创新问题。 适用于患有ADRD的老年人。

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.