UAS-CLEAR: A new nationally representative longitudinal study of caregiving experiences and well-being across the lifecourse

项目摘要 多达3600万美国人为残疾成年人提供照料，约1610万人提供 对阿尔茨海默病和相关痴呆症患者的非正式护理。考虑到不断增长的数字 老年人的残疾和ADRD以及随之而来的有偿照顾者的短缺和费用，家庭 而其他无偿照顾者在老年人的长期护理中变得越来越重要。照顾孩子通常是 在整个生命过程中在多个社交伙伴之间共享，在家庭内的几代人之间共享，在大家庭中共享， 继子女和非家庭成员可能会承受不同的负担。然而，大多数研究都集中在 配偶和孩子的照顾者。基于数字技术的日常压力暴露研究(例如， 人际关系紧张、工作压力)和反应性(即暴露与日常幸福感之间的联系 结果)可以提供关于照看联系的机制的关键信息 有更大的负担或更差的心理和身体健康结果。本研究的进展 并在了解美国研究(UAS)中管理新的调查工具，以确定照顾者和 实施新的EMA评估和可穿戴设备，以记录照顾者的日常体验和 ADRD和非ADRD家庭和非家庭成员与日常情绪和生理健康的联系 照顾者的年龄从青壮年到老年不等。UAS是一种成熟的、基于概率的 互联网小组目前由10,000名18岁及以上的个人组成，预计将增长到20,000人 受访者在2027年前。我们致力于三个目标： 1)建立一个有代表性的无偿照顾者的生命周期样本，纵向跟踪并收集 实时的日常体验和生理数据，称为UAS-护理生命体验 实时评估(UAS-Clear)。2)比较日常经历(压力暴露、压力反应) 在ADRD和非ADRD家庭和非家庭照料者中，从青壮年到老年。3) 找出对日常压力或多或少有弹性的人，并检查是否有弹性 ADRD和非ADRD家庭和非家庭照顾者之间的因素各不相同。家庭照顾者是 对国家福祉和经济至关重要，但关于ADRD日常生活的信息很少 以及提供护理的不同社会伙伴中的非ADRD照顾者。了解日常情况 经验和反应性以及预测国民对压力的更大韧性和脆弱性的因素 护理人员样本将提供有关潜在可修改风险和 改善照顾者健康和福祉的保护性因素。

Project Summary Up to 36 million Americans provide caregiving to disabled adults and approximately 16.1 million provide informal caregiving to people with Alzheimer’s disease and related dementias (ADRD). Given the rising number of older adults with disability and ADRD and the accompanying shortage and cost of paid caregivers, family and other unpaid caregivers are increasingly vital in the long-term care of older adults. Caregiving is often shared across multiple social partners across the life course, across generations within family, extended family, stepfamily and non-family ties who may experience heterogeneous burden. Yet, most research focuses on spouse and child caregivers. Digital technology-enabled studies of daily stress exposure (e.g., interpersonal tensions, work stress) and reactivity (i.e., the link between exposure and daily well-being outcomes) may provide crucial information regarding the mechanisms by which caregiving is linked with greater burden or worse psychological and physical health outcomes. The present study develops and administers new survey instruments in the Understanding America Study (UAS) to identify caregivers and implements new EMA assessments and wearable devices to capture caregivers’ daily experiences and their links with daily emotional and physiological well-being among ADRD and non-ADRD family and non-family caregivers ranging in age from young adulthood to old age. The UAS is a well-established, probability-based Internet panel currently comprising 10,000 individuals ages 18 and older and is expected to grow to 20,000 respondents by 2027. We address three aims: 1) Build a representative, life-course sample of unpaid caregivers to follow longitudinally and collect real-time daily experience and physiological data, called UAS-Caregiving Lifecourse Experiences Assessed in Real-time (UAS-CLEAR). 2) Compare daily experiences (stress exposure, stress reactivity) among ADRD and non-ADRD family and non-family caregivers from young adulthood to old age. 3) Identify individuals who are more or less resilient to daily stress and examine whether resilience factors vary between ADRD and non-ADRD family and non-family caregivers. Family caregivers are essential to the nation’s well-being and economy yet little information exists regarding the daily lives of ADRD and non-ADRD caregivers across the diverse social partners who provide care. Understanding daily experiences and reactivity and the factors that predict greater resilience and vulnerability to stress in a national sample of caregivers will provide unprecedented information regarding potentially modifiable risk and protective factors for improving caregiver health and well-being.