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

分析心理社会痴呆症护理网络：痴呆症护理网络对医疗保险参保者痴呆症患者护理结果的影响

• 批准号: 10523325
• 负责人: Amanda Noel Leggett
• 金额: $ 53.04万
• 依托单位: WAYNE STATE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-01 至 2026-05-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10523325
• 关键词: Accounting; Address; Adult; Affect; Age; Aging; Alzheimer' s disease related dementia; Anxiety; Attention; Behavior Therapy; Caregivers; Caring; Characteristics; Communities; Complex; Conflict (Psychology); Data; Dementia; Dementia caregivers; Emergency department visit; Family; Family Caregiver; Family dynamics; Family member; Friends; Future; Growth; Health; Healthcare; Hospitalization; Individual; Infrastructure; Institutionalization; Intervention; Interview; Link; Long-Term Care; Measures; Medicare; Medicare claim; Mental Depression; Mental Health; Meta-Analysis; Modeling; Monitor; Nature; Network-based; Outcome; Participant; Patients; Pattern; Personal Satisfaction; Persons; Population; Population Heterogeneity; Process; Psychosocial Assessment and Care; Public Health; Reporting; Research; Respondent; Risk; Role; Sampling; Self Care; Services; Stress; Symptoms; Techniques; Time; Work; anxiety symptoms; base; beneficiary; care giving burden; care outcomes; care recipients; caregiver functioning; caregiver stress; caregiving; caregiving research; coping; dementia care; dementia caregiving; depressive symptoms; experience; health care service utilization; human old age (65+); improved; member; neglect; primary caregiver; psychosocial; psychosocial stressors; research and development; response; sleep quality; statistics; stressor; systems research; theories; therapy development; treatment adherence; trend

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.

摘要 痴呆症患者（PLwD）的护理人员并不是孤立行动，通常参与更广泛的活动。 家庭和朋友的网络，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。相互影响的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， 这表明与护理相关的行为干预的影响小得令人不安。鉴于PLwD通常具有 如果只关注一个主要照顾者，可能会失去目标。这 研究旨在通过以下方式填补这一巨大空白：1）将痴呆症护理人员网络分类为基于 护理网络的组成和心理社会方面，2）检查痴呆症之间的关联 关于PLwD的福祉和重要医疗保健利用的护理人员网络概况，以及3）确定 PLwD不断变化的护理需求与痴呆症护理人员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家健康和老龄化趋势研究中确定PLwD样本 （NHATS），通过汇集独特的数据，对符合年龄条件的医疗保险受益人进行年度访谈 从2011年，2015年和2017年的浪潮，以及即将到来的其他浪潮（2021年和每年向前推进）。 为了描述护理网络概况，我们将使用来自NHATS和其他丰富的 来自相关的国家护理研究（NSOC）的详细信息，该研究采访了每5名护理人员， 合资格的NHATS参与者。潜在类别分析模型将用于表征和聚类网络 基于相似的结构和心理特征。之间和内部的措施- 网络可变性（例如，网络中的平均护理压力、网络内压力的可变性）。 然后，我们将探讨护理网络配置文件的关联，以及网络配置文件的各个组件， 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 卫生保健利用（潜在可预防的住院、急诊室就诊和长期 护理停留）通过相关的NHATS响应者级别的医疗保险索赔。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，因为其结果将大大 更好地了解这些护理人员网络，以及它们如何增加负面结果的风险， 因此，今后的干预措施可能会针对那些有可能产生不利影响的网络。符合 NIA优先改善对生育过程的评估，并了解家庭之间的联系 动态和病人的健康和福祉，这种对护理网络的理解可以从根本上改变 通过建立考虑家庭和网络系统的重要性， 研究和干预措施的发展，超越了对唯一的主要照顾者的标准关注。