Burden, depression, and health in dementia caregivers: The role of emotion

痴呆症护理人员的负担、抑郁和健康：情绪的作用

• 批准号: 8894353
• 负责人: Robert Wayne Levenson
• 金额: $ 52.41万
• 依托单位: UNIVERSITY OF CALIFORNIA BERKELEY
• 依托单位国家: 美国
• 财政年份: 2012
• 资助国家: 美国
• 起止时间: 2012-08-15 至 2016-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8894353
• 关键词: Address; Affect; Affective; Age; Aging; Alzheimer' s Disease; Amyotrophic Lateral Sclerosis; California; Caregiver Burden; Caregivers; Caring; Cessation of life; Characteristics; Cognitive; Couples; Data; Dementia; Diagnosis; Discipline of Nursing; Disease; Economics; Educational Intervention; Emotional; Emotions; Empathy; Family; Frontotemporal Dementia; Genetic; Genetic screening method; Health; Impairment; Intervention; Language; Lead; Life; Life Expectancy; Link; Measures; Memory; Mental Depression; Mental Health; Methodology; Modeling; Motor; Neurodegenerative Disorders; Neurologic; Neurology; Outcome; Participant; Patients; Pattern; Personal Satisfaction; Personality Character; Population; Prevalence; Program Research Project Grants; Progressive Disease; Psychology; Public Health; Recruitment Activity; Research; Risk; Role; Sampling; San Francisco; Science; Social Functioning; Spouse Caregiver; Spouses; Symptoms; Synapses; Testing; Universities; Work; age related; caregiver education; caregiving; clinical care; cognitive function; efficacy testing; emotion regulation; emotional stimulus; improved; innovation; interdisciplinary approach; loved ones; multidisciplinary; neural circuit; neuron loss; neuropsychological; novel; physical conditioning; programs; psychologic; response; sex; therapy design

DESCRIPTION (provided by applicant): Caring for a loved one with a neurodegenerative disease can be a meaningful part of family life. However, it can also be associated with negative outcomes for caregivers, including increased burden and reduced health and well-being. For the past 10 years, our multidisciplinary group (neurology, nursing, and psychology) has collaborated on a program project grant (AG19724) focusing on patients with frontotemporal dementia (FTD). FTD typically presents with impairments in emotional and social functioning, with many aspects of cognitive functioning initially spared. Although this constellation of symptoms can be extremely difficult for caregivers, there has been relatively little research focusing on FTD caregiving or comparing FTD caregivers with other kinds of caregiving. We propose to study the associations between patient and caregiver emotional functioning and negative caregiver outcomes (i.e., higher burden, lower health and well-being). We will recruit 200 patients with FTD, Alzheimer's disease (AD), and amyotrophic lateral sclerosis (ALS) and their caregiver spouses plus 50 neurologically normal controls and their spouses (Total N = 500). Emotional functioning will be evaluated in all participants using an observational approach that assesses emotional functioning in three domains: (a) emotional reactivity (responding to emotional stimuli), (b) emotion regulation (adjusting emotional responses to situational demands), and (c) emotional empathy (recognizing others' emotions, responding emotionally to others' emotions, helping others in need). Caregiver outcomes will be assessed using well- established measures of caregiver burden, mental and physical health, and well-being. The research addresses four specific aims: Aim 1: To determine how specific emotional deficits in patients contribute to negative caregiver outcomes (i.e., higher caregiver burden, lower caregiver health and well-being). Aim 2: To understand how caregivers' emotional functioning and select genetic and personality characteristics predict vulnerability to the negative effects of caregiving. Aim 3: To characterize the emotional qualities of caregiver- patient interactions in FTD, AD, and ALS. Aim 4: To test the efficacy of a caregiver training intervention designed to improve ability to recognize emotion in reducing negative caregiver outcomes. The proposed research is innovative in its multidisciplinary approach, translational application of basic affective science methodology to the study of dementia caregiving, focus on FTD caregiving, emphasis on emotional functioning in both patients and caregivers, and testing of an intervention for caregivers that might reduce negative caregiver outcomes and improve the caregiver-patient relationship.

描述（由申请人提供）：照顾患有神经退行性疾病的亲人可能是家庭生活中有意义的一部分。然而，它也可能与照顾者的负面结果有关，包括增加负担和降低健康和福祉。在过去的10年里，我们的多学科小组（神经学，护理学和心理学）合作了一个项目资助（AG 19724），重点是额颞叶痴呆症（FTD）患者。FTD通常表现为情感和社会功能障碍，最初的认知功能的许多方面都没有受到影响。虽然这些症状对照顾者来说是非常困难的，但相对较少的研究关注FTD的治疗或将FTD照顾者与其他类型的治疗进行比较。我们建议研究患者和照顾者情绪功能与消极照顾者结果之间的关联（即，更高的负担，更低的健康和福祉）。我们将招募200例FTD、阿尔茨海默病（AD）和肌萎缩侧索硬化症（ALS）患者及其护理人员配偶，以及50例神经系统正常对照患者及其配偶（总N = 500）。将使用观察方法评估所有参与者的情绪功能，该方法评估三个领域的情绪功能：（a）情绪反应（对情绪刺激做出反应），（B）情绪调节（根据情境需求调整情绪反应）和（c）情绪同理心（识别他人情绪，对他人情绪做出情绪反应，帮助有需要的人）。将使用公认的护理者负担、身心健康和福祉指标评估护理者结局。该研究涉及四个具体目标：目标1：确定患者的特定情绪缺陷如何导致消极的护理结果（即，照顾者的负担更重，照顾者的健康和福祉更低）。目标二：了解照顾者的情绪功能和选择的遗传和人格特征如何预测对照顾负面影响的脆弱性。目的3：描述FTD、AD和ALS患者中照顾者-患者互动的情感品质。目标4：旨在测试护理人员培训干预的有效性，旨在提高识别情绪的能力，减少护理人员的负面结果。拟议的研究是创新的多学科方法，将基本情感科学方法转化应用于痴呆症的研究，专注于FTD的研究，强调患者和护理人员的情感功能，并测试护理人员的干预措施，可能会减少护理人员的负面结果并改善患者与患者的关系。