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.

项目概要/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 随着这些疾病的进展，痴呆症患者 (PWD) 变得越来越依赖。 照料者需要获得功能、心理和经济援助，这是有据可查的。 许多证据表明，残疾人士与健康和福祉的大幅下降有关。 在护理结束后（在死亡之后），护理人员会继续经历这些不利影响多年 尽管这一领域受到的关注较少，但其程度也存在显着的差异。 哪些护理人员在护理期间和研究结束后都会经历这些后果。 对这些个体差异的根源的研究主要集中在与外部因素有关的方面。 环境、残疾人或护理人员会导致护理人员的脆弱性增加。 研究已将残疾人与护理人员的关系质量与护理人员福祉下降联系起来，但目前所知甚少 关于有助于护理人员结果的具体人际机制，例如，积极的人际机制。 残疾人与照顾者社会关系的情绪品质可能会缓冲以下因素的负面影响 护理压力，而较低质量的社会联系可能会导致护理人员的孤独感增加。 拟议的研究，我将通过观察措施来衡量残疾人与照顾者的社会联系 来自基础情感科学，包括基于实验室的交互中情感行为的二元编码 残疾人和护理人员之间的关系（研究 1；N = 186）以及护理人员使用的情感语言的文本分析 当描述最近的一次时，他们感到与 PWD 有联系（研究 2；N = 533）。 残疾人与护理人员的社会联系对护理人员的健康和福祉的影响（目标 1），同时（在 现任护理人员）和纵向（前护理人员，护理结束后）。 比较现任和前任护理人员之间这些关联的相对强度，我将 调查残疾人与照顾者的社会联系与以下因素相关联的可能机制（例如孤独感） 然后，我将评估残疾人与护理人员社会关系的预测价值。 对护理人员的健康和福祉的影响，超出了通过机器识别的一组最佳预测因素 学习（目标 2）。拟议的论文研究将为我进行未来的研究做好准备。 该 F31 将提供可能影响护理人员健康轨迹的社会情感机制。 为完成以下研究目标提供必要的支持：（1）进一步提高基础情感科学的专业知识 方法论（例如，二元行为编码、文本分析）；(2) 实现统计方面的高级熟练程度 纵向和机器学习分析技术；(3) 增强知识 神经退行性疾病，包括神经心理学和鉴别诊断。