When dementia caregiving ends: The role of patient-caregiver social connection in caregivers' health and well-being

当痴呆症护理结束时：患者与护理人员的社会联系对护理人员的健康和福祉的作用

• 批准号: 10398011
• 负责人: Jenna L Wells
• 金额: $ 4.68万
• 依托单位: UNIVERSITY OF CALIFORNIA BERKELEY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-07-01 至 2023-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10398011
• 关键词: Accounting; Adverse effects; Adverse event; Affective; Aging; Area; Attention; Behavioral; Buffers; California; Caregiver well-being; Caregivers; Caring; Cessation of life; Code; Cognitive; Data Collection; Data Reporting; Data Set; Dementia; Dementia caregivers; Differential Diagnosis; Disease; Economics; Ecosystem; Elderly; Emotional; Emotions; Empathy; Environment; Family; Future; Goals; Health; Health Benefit; Health Promotion; Impairment; Individual; Individual Differences; Intervention; Knowledge; Laboratories; Language; Lead; Life; Link; Literature; Loneliness; Machine Learning; Measures; Mediating; Methodology; Methods; Nature; Neurodegenerative Disorders; Neuropsychology; Outcome; Pathway interactions; Patient Self-Report; Patients; Personal Satisfaction; Persons; Play; Predictive Value; Progressive Disease; Public Health; Research; Resources; Risk; Risk Factors; Role; Sampling; San Francisco; Science; Social Network; Social support; Source; Statistical Models; Stress; Techniques; Text; Time; Training; Universities; Work; adverse outcome; base; care giving burden; caregiving; dementia caregiving; effective intervention; emotional behavior; emotional functioning; experience; follow-up; functional disability; loved ones; positive emotional state; prevent; psychologic; resilience; satisfaction; skills; social; social relationships

PROJECT SUMMARY/ABSTRACT Dementia and other neurodegenerative diseases lead to profound cognitive, emotional, and functional impairments. As these diseases progress, the person with dementia (PWD) becomes increasingly dependent on a caregiver for functional, psychological, and economic assistance. It is well-documented that caring for a PWD is associated with considerable declines in health and well-being. Evidence suggests that many caregivers continue to experience these adverse effects for years after caregiving has ended (after the death of the PWD), though this area has received less attention. There is also striking variability in the extent to which caregivers experience these consequences – both during caregiving and after it has ended. Research on the sources of these individual differences has largely focused on factors related to the external environment, the PWD, or the caregiver that contribute to increased vulnerability in caregivers. Although research has linked PWD-caregiver relationship quality with declines in caregiver well-being, little is known about the specific interpersonal mechanisms that contribute to caregiver outcomes. For example, the positive emotional qualities of the PWD-caregiver social connection may buffer against the negative effects of caregiving stress, whereas lower quality social connection may drive increases in caregivers’ loneliness. In the proposed research, I will measure PWD-caregiver social connection through observational measures derived from basic affective science, including dyadic coding of emotional behavior in a laboratory-based interaction between PWDs and caregivers (Study 1; N = 186) and text analysis of emotional language caregivers used when describing a recent time they felt connected to the PWD (Study 2; N = 533). I will then determine the impact of PWD-caregiver social connection on caregivers’ health and well-being (Aim 1), both concurrently (in current caregivers) and longitudinally (in former caregivers, after caregiving has ended). Additionally, I will compare the relative strength of these associations between current and former caregivers, and I will investigate possible mechanisms (e.g., loneliness) through which PWD-caregiver social connection is linked to caregivers’ health and well-being. I will then evaluate the predictive value of PWD-caregiver social connection on caregivers’ health and well-being, above and beyond an optimal set of predictors identified through machine learning (Aim 2). The proposed dissertation research will prepare me to conduct future studies investigating the socioemotional mechanisms that may influence caregivers’ health trajectories. This F31 will provide the necessary support to accomplish the following research goals: (1) to further expertise in basic affective science methodologies (e.g., dyadic behavioral coding, text analysis); (2) to achieve advanced proficiency in statistical techniques for longitudinal and machine learning analyses; and (3) to enhance knowledge of neurodegenerative disease, including neuropsychology and differential diagnosis.

项目摘要/摘要 痴呆症和其他神经退行性疾病会导致严重的认知、情感和功能障碍 减损。随着这些疾病的进展，痴呆症患者(PWD)变得越来越依赖 提供功能、心理和经济援助的照顾者。有充分的证据表明，照顾一个 残障与健康和幸福感的显著下降有关。有证据表明，许多人 照顾者在照看结束后(死亡后)继续经历这些不良影响多年 )，尽管这一领域受到的关注较少。在程度上也有惊人的变异性 哪些照顾者会经历这些后果--无论是在照看期间还是在照看结束后。研究 关于这些个体差异的来源在很大程度上集中在与外部相关的因素上 环境、残障或照顾者造成照顾者更易受伤害。虽然 研究已经将PWD和照顾者的关系质量与照顾者幸福感的下降联系在一起，鲜为人知 关于特定的人际机制对照顾者的结果有贡献。例如，积极的 残疾人与照顾者的社会联系的情绪品质可能会缓冲 照顾压力，而较低质量的社会联系可能会增加照顾者的孤独感。在 拟议的研究，我将通过观察性测量来测量残疾患者和照顾者的社会关系 来自基础情感科学，包括在基于实验室的互动中对情感行为进行二元编码 残疾人和照顾者之间的关系(研究1；N=186)和照顾者使用的情感语言的文本分析 当描述最近的时间时，他们感觉自己与PWD有关(研究2；N=533)。然后我会决定 残障人士与照顾者的社会关系对照顾者健康和福祉的影响(目标1)，两者同时存在(在 现在的照顾者)和纵向(在以前的照顾者中，在照看结束后)。另外，我会 比较现任和前任照顾者之间这些联系的相对强度，我会 调查残障人士与照顾者之间的社会联系的可能机制(如孤独感) 照顾者的健康和福祉。然后，我将评估残障人士-照顾者社会关系的预测价值 关于照顾者的健康和幸福感，超过了通过机器识别的一组最佳预测因素 学习(目标2)。所提出的论文研究将为我今后进行研究调查做好准备 可能影响照顾者健康轨迹的社会情绪机制。这款F31将提供 为实现以下研究目标提供必要的支持：(1)进一步加强基础情感科学方面的专门知识 方法论(例如，二元行为编码、文本分析)；(2)在统计学方面达到高级熟练程度 用于纵向和机器学习分析的技术；以及(3)增强以下方面的知识 神经退行性疾病，包括神经心理学和鉴别诊断。