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

阿尔茨海默病和相关痴呆症护理的趋势和动态：扩展国家护理研究

• 批准号: 10183129
• 负责人: VICKI A. FREEDMAN
• 金额: $ 205.93万
• 依托单位: UNIVERSITY OF MICHIGAN AT ANN ARBOR
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-06-15 至 2024-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10183129
• 关键词: Address; Adult; Age; Aging; Alzheimer' s disease related dementia; American; Americas; Baby Booms; Caregivers; Caring; Collection; Companions; Contracts; Data; Dementia; Dementia caregivers; Demographic Factors; Educational workshop; Elderly; Employment; Ensure; Environment; Family; Family Caregiver; Family member; Foundations; Future; Generations; Health; Household; Individual; Infrastructure; Internet; Interview; Knowledge; Laws; Life; Link; Long-Term Care; Longitudinal trends; Measures; Myristica fragrans; Older Population; Online Systems; Outcome; Participant; Personal Satisfaction; Persons; Population; Process; Research; Research Personnel; Resources; Sampling Studies; Self Care; Services; Shapes; Surveys; Telephone; Time; Training; base; care recipients; caregiving; cost effective; dementia care; dementia caregiving; design; disability; driving force; end of life; end of life care; experience; falls; high risk; human very old age (85+); informal care; informal caregiver; informal caregiving; innovation; longitudinal design; primary caregiver; symposium; trend

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.

项目概要 该项目将增进对患有阿尔茨海默病的老年人的非正式护理的了解 相关痴呆症（ADRD），通过基于国家健康和老龄化的新国家纵向数据 趋势研究 (NHATS) 及其配套的国家护理研究 (NSOC)。 NHATS 和 NSOC 共同努力 是唯一能够提供观点的关于​​对具有明确特征的老年人群体的护理的国家数据 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 8,000 多名 65 岁及以上成年人组成的全国代表小组。 NSOC 采访护理人员 NHATS 参与者了解所提供的护理、护理的积极和消极方面、支持环境、 以及其他生活环境（例如就业、健康、福祉）。到目前为止，NSOC 已在 不定期间隔（2011 年、2015 年和 2017 年）。尽管提供了重要的分析机会，但 对于患有或不患有 ADRD 的老年人来说，包括随着时间的推移和临终时的动态护理，不能 充分利用这些数据进行处理。缺乏关于即将发生的变化的基本知识 潜在的人口因素将影响婴儿潮一代的护理人员体验和结果 继续老化。该项目将通过以下方式填补这些空白： (1) 每年举办四轮 NSOC（2020-2023 年）； (2) 每年通过 www.nhatsdata.org 传播 NSOC，开发在线用户材料，举办 举办研讨会，培训用户使用多波 NSOC，并举办 NSOC 用户研究会议； (3) 进行有针对性的分析，描述近期（2011-2020年）和长期（1999-2020年）的趋势 非正式的 ADRD 护理经历和结果，了解推动此类趋势的人口因素，以及 突出 ADRD 和其他护理人员之间的对比。通过收集和传播新的年度 NSOC， 拟议的项目将使研究人员能够研究有关非正式护理的各种创新问题 对于患有 ADRD 的老年人。