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，它也可能给护理人员带来负面影响，包括负担增加以及健康和福祉下降。在过去的 10 年里，我们的多学科小组（神经病学、护理和心理学）合作开展了一项计划项目拨款 (AG19724)，重点关注额颞叶痴呆 (FTD) 患者。 FTD 通常表现为情绪和社交功能受损，但认知功能的许多方面最初并未受到影响。尽管这一系列症状对于护理人员来说可能非常困难，但关注 FTD 护理或将 FTD 护理人员与其他类型护理进行比较的研究相对较少。我们建议研究患者和护理人员的情绪功能与护理人员的负面结果（即更高的负担、更低的健康和福祉）之间的关联。我们将招募 200 名患有 FTD、阿尔茨海默病 (AD) 和肌萎缩侧索硬化症 (ALS) 的患者及其照顾者配偶，以及 50 名神经功能正常的对照组及其配偶（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）情绪反应性（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），以及（c）情感同理心（认识他人的情绪，对他人的情绪做出情感反应，帮助有需要的人）。将使用既定的护理人员负担、心理和身体健康以及福祉指标来评估护理人员的结果。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护理人员的负面结果（即护理人员负担增加、护理人员健康和福祉降低）。目标 2：了解看护者的情绪功能以及选择的遗传和人格特征如何预测对看护负面影响的脆弱性。目标 3：描述 FTD、AD 和 ALS 中护理人员与患者互动的情感品质。目标 4：测试护理人员培训干预措施的有效性，该培训旨在提高识别情绪的能力，减少护理人员的负面结果。拟议的研究在多学科方法、将基本情感科学方法转化应用到痴呆症护理研究中的创新性、关注 FTD 护理、强调患者和护理人员的情绪功能以及测试可能减少消极情绪的护理人员干预措施方面具有创新性。护理人员的结果并改善护理人员与患者的关系。