Profiling Psychosocial Dementia Caregiving Networks: The Impact of Dementia Care Networks on Care Outcomes of Medicare Enrollee Persons Living with Dementia

摘要 痴呆症患者(PLwD)的照顾者不是孤立行动的，通常参与更广泛的 家人和朋友的网络，他们也帮助照顾，但这个扩大的照顾者网络在很大程度上是 在研究中被忽视的。相互影响理论和实证研究表明，照顾者的压力和 心理健康对照顾者和PLWD都有负面影响，但最近的报告和荟萃分析 表明与护理相关的行为干预的影响小得令人失望。鉴于PLwD通常具有 在涉及护理的广泛网络中，只关注主要照顾者可能是错误的。这 这项研究旨在通过以下方式填补这一巨大空白：1)将痴呆症照顾者网络分类为基于以下条件的简档 护理网络的组成和心理社会方面；2)检查痴呆症之间的联系 关于PLwD的福祉和重要医疗保健利用的护理者网络配置文件，以及3)确定 PLWD不断变化的护理需求与痴呆症照顾者网络如何随时间变化之间的关联。 我们将首先在具有全国代表性的国民健康和老龄化趋势研究中确定PLWD的样本 (NHATS)，通过汇集唯一数据对符合年龄条件的联邦医疗保险受益人进行年度访谈 从2011、2015和2017年的浪潮开始，即将到来的更多浪潮(2021年，每年向前推进)。 为了描述护理网络概况，我们将使用来自NHATS和其他RICH的有关护理人员的信息 来自相关的国家护理研究(NSOC)的详细信息，该研究采访了多达5名照顾者 符合条件的NHATS参与者。潜在类分析模型将被用来表征和聚类网络 基于相似模式的成分和心理社会特征。测量之间和内部的- 网络变异性(例如，网络中的平均护理压力、网络中压力的变异性)将包括在内。 然后，我们将探索护理网络简档和网络简档的各个组件之间的关联， PLWD的关键健康结果包括睡眠质量、抑郁和焦虑症状，以及重要的 医疗保健利用(潜在可预防的住院、急诊科就诊和长期 护理停留)通过链接的NHATS响应者级别的联邦医疗保险索赔。最后，利用 NHATS和NSOC的纵向性质，我们将随着时间的推移跟踪护理网络，以检查 网络随着PLWD自我护理需求的变化而变化。这项工作意义重大，因为结果将大大 提高对这些照顾者网络的了解，以及它们可能如何增加对 未来的干预措施可能针对那些可能产生不利影响的网络。与…一致 NIA的优先事项是改进对照料过程的评估并了解家庭之间的联系 动态和患者的健康和福祉，这种对护理网络的理解可以从根本上改变 通过确定考虑家庭和网络系统的重要性来研究照看研究范式 研究和干预开发，超越标准，专注于唯一的、主要的照顾者。

ABSTRACT Caregivers of persons living with dementia (PLwD) do not act in isolation and are typically involved in broader networks of family and friends who also assist with care, and yet this expanded caregiver network is largely neglected in research. Theories of mutual influence and empirical work suggest that caregivers’ stress and mental health have a negative impact on both caregivers and PLwD, yet recent reports and meta-analyses suggest disappointingly small effects of care-related behavioral interventions. Given that PLwD typically have broad networks involved in care, an exclusive focus on a primary caregiver may be missing the mark. This study aims to fill this immense gap by 1) Classifying dementia caregiver networks into profiles based on compositional and psychosocial facets of the care network, 2) Examining the association between dementia caregiver network profiles on PLwD’s well-being and important healthcare utilization, and 3) Identify the association between changing care needs of PLwD and how dementia caregiver networks change over time. We will first identify a sample of PLwD in the nationally representative National Health and Aging Trends Study (NHATS), which conducts annual interviews with age-eligible Medicare beneficiaries by pooling unique data from the 2011, 2015, and 2017 waves with additional waves forthcoming (2021 and moving forward annually). To characterize care network profiles, we will use information about caregivers from NHATS and additional rich detail from the associated National Study of Caregiving (NSOC), which interviews up to 5 caregivers per eligible NHATS participant. Latent class analysis models will be used to characterize and cluster networks based on similar patterns of compositional and psychosocial characteristics. Measures of between and within- network variability (e.g., average care stress in network, variability of stress within network) will be included. We will then explore the association of care network profiles, and individual components of network profiles, with key health outcomes for PLwD including sleep quality, depression and anxiety symptoms, and important health care utilization (potentially preventable hospitalization, Emergency Department visits, and long-term care stay) through linked NHATS respondent-level Medicare claims. Finally, taking advantage of the longitudinal nature of NHATS and NSOC, we will follow care networks over time to examine the association of network changes with change in PLwD’s self-care needs. This work is significant as results will substantially improve understanding of these caregiver networks and how they may increase risks for negative outcomes for PLwD such that future interventions may target those networks with potential for adverse influence. In line with NIA priorities to improve assessment of caregiving processes and understand connections between family dynamics and patient health and well-being, this understanding of care networks can fundamentally shift the paradigm of caregiving research by establishing the importance of considering family and network systems for research and intervention development, moving beyond the standard focus on a sole, primary caregiver.