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导致深刻的认知，情感和功能 障碍。随着这些疾病的发展，痴呆症患者（PWD）变得越来越依赖 在护理人员的功能，心理和经济援助上。有充分记录在关心 PWD与健康和福祉的考虑下降有关。有证据表明许多 护理人员在护理结束后的几年中继续经历这些不良影响（死后 在PWD中），尽管该领域受到了较少的关注。在范围内也有明显的差异 哪些护理人员在照料期间和之后都会遇到这些后果。研究 这些个体差异的来源主要集中在与外部有关的因素上 环境，PWD或护理人员有助于增加护理人员的脆弱性。虽然 研究已将PWD-Carevers关系质量与照料者福祉的下降联系起来，鲜为人知 关于有助于护理人员结果的特定人际际交往机制。例如，积极 PWD信徒社交联系的情感素质可能会缓解反对的负面影响 护理压力，而质量较低的社交联系可能会导致看护人的孤独感增加。在 拟议的研究，我将通过得出的观察措施来衡量PWD-Carevers的社交联系 来自基本情感科学，包括基于实验室的互动中情绪行为的二元编码 PWD和护理人员（研究1; n = 186）和所用情感语言护理人员的文本分析 在描述最近的时间时，他们感到与PWD相连（研究2; n = 533）。然后我将确定 同时 当前的护理人员）和纵向（在护理人员结束后，在以前的看护人中）。另外，我会的 比较当前和前护理人员之间这些关联的相对强度，我将 调查PWD支持者社交联系的可能机制（例如，孤独感） 看护人的健康和福祉。然后，我将评估PWD-Caregiver社会联系的预测价值 关于护理人员的健康和福祉，超出了通过机器确定的一组最佳预测变量 学习（目标2）。拟议的论文研究将使我准备进行未来的研究调查 可能影响护理人员健康轨迹的社会情感机制。这个F31将提供 实现以下研究目标的必要支持：（1）进一步的基本情感科学专业知识 方法（例如，二元行为编码，文本分析）； （2）实现统计的高级熟练程度 纵向和机器学习分析的技术； （3）增强知识 神经退行性疾病，包括神经心理学和差异诊断。