Predicting Risk for Adverse Outcomes in Dementia Caregivers

预测痴呆症护理人员不良后果的风险

• 批准号: 10683965
• 负责人: Robert Wayne Levenson
• 金额: $ 66.92万
• 依托单位: UNIVERSITY OF CALIFORNIA BERKELEY
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-09-15 至 2025-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10683965
• 关键词: Acceleration; Address; Adverse effects; Adverse event; Affect; Affective; Aftercare; Aggressive behavior; Agitation; Alzheimer' s Disease; Anger; Anxiety; Behavioral; Behavioral Symptoms; Biological; Caregiver research; Caregivers; Caring; Cognitive; Data; Dementia; Dementia caregivers; Diagnosis; Discipline of Nursing; Disease Progression; Disease remission; Economics; Emotional; Emotions; Enabling Factors; Family; Family member; Formal caregiving; Frontotemporal Dementia; Health; Health Benefit; Health Status; Impairment; Individual; Individual Differences; Intervention; Laboratories; Lead; Life; Link; Loneliness; Low income; Measures; Mental Depression; Mental Health; Methodology; Methods; Morbidity - disease rate; Neurology; Outcome; Pathway interactions; Patients; Personal Satisfaction; Persons; Physiological; Progressive Disease; Psychology; Public Health; Quality of Care; Questionnaires; Research; Risk; Risk Factors; Role; Sampling; Science; Sleep disturbances; Source; Surveys; Training; Weight Gain; Work; adverse outcome; caregiver functioning; caregiving; dementia caregiving; dementia risk; effective intervention; emotion regulation; emotional adjustment; emotional behavior; emotional factor; emotional functioning; emotional reaction; experience; informal caregiver; innovation; interdisciplinary approach; interest; mortality; physical conditioning; positive emotional state; prevent; psychologic; psychological symptom; response; risk prediction; self esteem; skills; sobriety; statistics; translational applications

Alzheimer’s disease (AD) and frontotemporal dementia (FTD) lead to profound cognitive, emotional, and functional deficits. As the disease progresses, the person with dementia (PWD) becomes increasingly dependent on a caregiver (CG) for functional, psychological, and economic assistance. Caring for a PWD is a highly meaningful part of family life but can have adverse consequences for CGs including increased economic hardships, reduced health and well-being, and greater mortality. When CGs suffer these effects, their ability to provide high quality care for PWDs can become comprised, leading to an accelerating cycle of decline. Importantly, beneath these sobering group-level data are striking differences among individual caregivers in how profoundly they experience adverse effects, which raises the possibility that adverse effects of caregiving could be predicted, modified, or even prevented. The proposed research focuses on CG risk associated with emotional functioning in PWDs, CGs, and PWD-CG relationships. This focus reflects the profound impact that problematic emotional behaviors and psychological symptoms in PWDs have on CGs, the strong links between emotions and health, and our previous research linking emotional factors with adverse CG outcomes. CGs and PWDs will undergo a comprehensive, laboratory-based assessment of: (a) emotional reactivity—ability to generate emotional responses to significant challenges and opportunities; (b) emotion regulation—ability to adjust emotional responses to meet situational demands; and (c) emotion recognition—ability to detect emotions accurately in others and respond appropriately. Five studies are proposed to address four specific aims: Aim 1: To determine how emotional functioning in PWDs, CGs, and PWD-CG relationships is associated with individual differences in adverse CG outcomes (i.e., lower CG mental health, physical health, and well- being) during active caregiving (Study 1, N=180) and after caregiving has ended (Study 2, N=200). Aim 2: To use longitudinal assessments to evaluate hypothesized biological and behavioral pathways connecting risk factors with adverse CG outcomes during active caregiving (Study 3, N=84 studied for 3 years). Aim 3: To examine relationships between changes in CG health and PWD mortality (Study 4, N=400). Aim 4: To identify an optimal set of laboratory-based measures of emotional functioning for predicting adverse CG outcomes both during and after active caregiving and to determine their incremental validity compared to other established risk factors and traditional survey measures of emotional functioning (Study 5, N=350). Innovations include: (a) multidisciplinary approach (psychology, neurology, and nursing); (b) translational application of laboratory-based methods used in basic affective science methodology to CG research; (c) including CGs of individuals with both AD and FTD; (d) focusing on interpersonal functioning; (e) examining individual differences in adverse CG outcomes both during and after active caregiving; (f) examining adverse outcomes for both CGs and PWDs; and (g) longitudinal behavioral and biological assessments of CG functioning.

阿尔茨海默氏病（AD）和额颞叶痴呆（FTD）导致深刻的认知、情感和认知障碍。 功能缺陷随着疾病的进展，痴呆症患者（PWD）变得越来越多。 依赖于照顾者（CG）的功能，心理和经济援助。照顾残疾人是一个 家庭生活中非常有意义的一部分，但可能对社区团体产生不利影响， 困难，健康和福祉下降，死亡率上升。当CG遭受这些影响时，他们的能力， 为残疾人提供高质量的护理可能会受到影响，导致加速衰退周期。 重要的是，在这些发人深省的群体水平数据之下，个体照顾者在以下方面存在显著差异： 他们经历的负面影响有多深，这就提出了一种可能性，即 可以被预测，修改，甚至阻止。拟议的研究重点是与以下方面相关的CG风险： PWD、CG和PWD-CG关系中的情绪功能。这一重点反映了深刻的影响， 有问题的情绪行为和心理症状的残疾人对CG， 情绪和健康，以及我们以前的研究将情绪因素与不良CG结果联系起来。CGs和 残疾人将接受一个全面的，以实验室为基础的评估：（a）情绪反应能力， 对重大挑战和机遇产生情绪反应;（B）情绪调节能力， 调整情绪反应，以满足情境的要求;和（c）情绪回避-检测能力 准确地感受他人的情绪，并做出适当的反应。建议进行五项研究，以解决四个具体问题 目的：目的1：确定PWD，CG和PWD-CG关系中的情绪功能如何相关 在不利的CG结果中具有个体差异（即，降低CG心理健康，身体健康，以及- 研究1，N=180）和研究2，N=200）。目标2： 使用纵向评估来评估假设的生物和行为途径， 积极治疗期间不良CG结局的因素（研究3，N=84，研究3年）。目标3： 检查CG健康变化与PWD死亡率之间的关系（研究4，N=400）。目标4：查明 一组最佳的基于实验室的情绪功能指标，用于预测不良CG结果 并确定其与其他方法相比的增量有效性， 已建立的风险因素和传统的情绪功能调查措施（研究5，N=350）。创新 包括：（a）多学科方法（心理学、神经学和护理学）;（B） CG研究基本情感科学方法中使用的基于实验室的方法;（c）包括以下CG AD和FTD患者;（d）关注人际功能;（e）检查个体 在主动回避期间和之后的不良CG结果的差异;（f）检查不良结果 CG和PWD的纵向行为和生物学评估;以及（g）CG功能的纵向行为和生物学评估。