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: 8525297
• 负责人: Robert Wayne Levenson
• 金额: $ 50.93万
• 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 2017-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8525297
• 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; 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后果有关，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、护理和心理学)在一个项目拨款(AG19724)上进行了合作，该项目的重点是额颞部痴呆(FTD)患者。FTD通常表现为情绪和社会功能的损害，而认知功能的许多方面最初是幸免的。尽管这一系列的症状对照顾者来说可能是极其困难的，但关于FTD照顾者或将FTD照顾者与其他类型的照顾者进行比较的研究相对较少。我们建议研究患者和照顾者的情绪功能与负面照顾者结果(即，更高的负担、更低的健康和幸福感)之间的关系。我们将招募200名FTD、阿尔茨海默病(AD)和肌萎缩侧索硬化症(ALS)患者及其照顾者配偶，以及50名神经学正常对照及其配偶(总N=500人)。将使用观察性方法评估所有参与者的情绪功能，评估三个领域的情绪功能：(A)情绪反应(对情绪刺激的反应)，(B)情绪调节(调整对情景要求的情绪反应)，(C)情绪移情(识别他人情绪，对他人情绪做出情绪反应，帮助其他有需要的人)。护理者的结果将使用护理者负担、心理和身体健康以及幸福感的成熟衡量标准进行评估。这项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照顾者的负面结果(即更高的照顾者负担，更低的照顾者健康和幸福感)。目标2：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看的负面影响的易感性。目的3：研究FTD、AD和ALS患者照顾者与患者互动的情绪特征。目的4：测试照顾者培训干预的有效性，旨在提高识别情绪的能力，减少照顾者的负面结果。这项拟议的研究在多学科方法上具有创新性，将基本情感科学方法论转化为痴呆症护理研究，重点关注FTD护理，强调患者和照顾者的情绪功能，并测试针对照顾者的干预措施，可能减少负面照顾者结果并改善照顾者与患者之间的关系。