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.

阿尔茨海默病(AD)和额颞性痴呆(FTD)会导致深刻的认知、情感和 功能缺陷。随着疾病的发展，痴呆症患者(PWD)的发病率越来越高 依靠照顾者(CG)提供功能、心理和经济援助。照顾残疾人是一种 家庭生活中非常有意义的一部分，但可能会对CGs产生不利影响，包括增加经济 困难、健康和福祉下降以及更高的死亡率。当CG遭受这些影响时，他们有能力 为残障人士提供高质量的护理可能会导致加速衰退周期。 重要的是，在这些发人深省的群体级别数据背后，是不同照顾者之间的显著差异 他们经历的不良影响有多深，这增加了护理的不良影响的可能性 可以预测、修改，甚至可以预防。拟议的研究重点是与以下因素相关的CG风险 智障、心智障碍和智障-心智障碍关系中的情绪功能这一关注反映了 有问题的情绪行为和心理症状对CGs有很强的联系 情绪和健康，以及我们之前的研究将情绪因素与不利的CG结果联系起来。CGS和 残疾人士将接受基于实验室的全面评估：(A)情绪反应--能力 对重大挑战和机遇作出情绪反应；(B)情绪调节--有能力 调整情绪反应以满足情景需求；以及(C)情绪识别-检测能力 准确地表达他人的情绪，并做出适当的反应。建议进行五项研究，以解决四个具体的 目标：目标1：确定精神障碍、心智障碍和精神障碍-心智障碍关系中的情绪功能是如何相关的 不良CG结局的个体差异(即较低的CG心理健康、身体健康和良好的 在积极照看期间(研究1，N=180)和在照看结束之后(研究2，N=200)。目标2：实现 使用纵向评估来评估连接风险的假想生物和行为路径 积极照看期间不良CG结局的因素(研究3，N=84，为期3年)。目标3：实现 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：确定 一组最佳的基于实验室的情绪功能测量用于预测不良的CG结果 在主动照护期间和之后，并确定他们与其他人相比的增量有效性 确定的危险因素和情绪功能的传统调查方法(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)翻译应用 基础情感科学方法论中基于实验室的方法用于CG研究；(C)包括 患有AD和FTD的人；(D)注重人际功能；(E)检查个人 积极护理期间和之后不良CG结局的差异；(F)检查不良结局 CGs和Pwd；和(G)对CG功能的纵向行为和生物学评估。