Burden, Depression, and Health in Dementia Caregivers: The Role of Emotion

摘要 照顾患有痴呆症的亲人是家庭生活中非常有意义的一部分;然而， 负担和紧张可能对照顾者产生不利后果，包括增加精神和身体上的压力， 健康问题，幸福感下降，死亡率上升。在过去的15年里，我们的多学科 小组（心理学，神经病学，护理）合作的计划项目赠款（AG 19724），重点是 阿尔茨海默病（AD）和额颞叶痴呆（FTD）患者。五年前，我们开始了一个新的 研究这些患者的家庭照顾者的研究计划（AG 41762）。因为AD和FTD靶向 不同的神经网络，它们会产生功能缺陷，给护理人员带来不同的挑战。AD 患者通常表现出认知域的丧失（例如，记忆力、视觉空间能力）， 功能相对保存。相比之下，FTD患者通常表现为情感缺陷， 功能（例如，冷漠，缺乏同情心，冷漠，性格变化），具有许多认知能力 相对保存。这项研究扩展了我们对照顾者、病人、 和病人与护理人员的关系，这是与不良影响的bepaly手机投注。我们将招募 300名新参与者（50名AD患者和50名FTD患者及其配偶照顾者，50名 神经学上健康的对照及其配偶）。情绪功能将在三个领域进行评估： (a)情绪反应（对情绪刺激的反应），（B）情绪调节（调节情绪 对个人和情境需求的反应），以及（c）情感识别（识别 其他）。将使用已确立的负担、疾病和 well-being.该研究解决了四个具体目标：目标1（预测）：确定如何具体 患者、照顾者和患者-照顾者关系的情绪特征有助于不良的 的影响。目的2（途径）：探索行为和生物学机制， 患者、照顾者和患者-照顾者关系的情感特征之间的关联， 的负面影响。目的3（诊断）：确定患者诊断调节 两种主要形式的痴呆（AD和FTD）的预测因子，途径和结果之间的关系。目标4 （最佳措施）：确定：（a）我们的全面生物行为评估的“增值”， 与更常用的问卷和测试相比，情绪功能，以及（B）最佳的 用于预测特定护理者的测量（例如，身体健康下降;心理健康下降）， 患者（即，死亡率）的结果。 意义：识别患者、照顾者和患者照顾者的情绪特征 与生育不良影响相关的关系以及介导这些关系的机制 协会增加了我们对日益严重的公共卫生问题的理解，并有助于确定 提高脆弱性和未来干预措施的目标。

Abstract Caring for a loved one with dementia is a highly meaningful part of family life; however, the associated burden and strain can have adverse consequences for caregivers including increased mental and physical health problems, reduced well-being, and increased mortality. For the past 15 years, our multidisciplinary group (psychology, neurology, nursing) has collaborated on a program project grant (AG19724) focused on patients with Alzheimer's disease (AD) and frontotemporal dementia (FTD). Five years ago, we began a new program of research studying the familial caregivers of these patients (AG41762). Because AD and FTD target different neural networks, they produce deficits in functioning that create different challenges for caregivers. AD patients typically present with losses in cognitive domains (e.g., memory, visuospatial ability), with emotional functioning relatively preserved. FTD patients, in contrast, typically present with deficits in emotional functioning (e.g., coldness, lack of empathy, apathy, personality changes), with many cognitive abilities relatively preserved. The proposed research expands our study of emotional factors in caregivers, patients, and patient-caregiver relationships that are associated with the adverse effects of caregiving. We will recruit 300 new participants (50 patients with AD and 50 patients with FTD and their spousal caregivers, 50 neurologically healthy controls and their spouses). Emotional functioning will be evaluated in three domains: (a) emotional reactivity (responding to emotional stimuli), (b) emotion regulation (adjusting emotional responses to personal and situational demands), and (c) emotional recognition (recognizing emotions in others). Adverse effects of caregiving will be assessed using well-established measures of burden, illness, and well-being. The research addresses four specific aims: Aim 1 (Predictors): To determine how specific emotional characteristics of patients, caregivers, and patient-caregiver relationships contribute to the adverse effects of caregiving. Aim 2 (Pathways): To explore behavioral and biological mechanisms underlying associations between emotional characteristics of patients, caregivers, and patient-caregiver relationships and adverse effects of caregiving. Aim 3 (Diagnosis): To determine the ways that patient diagnosis moderates the relationships among predictors, pathways, and outcomes in two major forms of dementia (AD and FTD). Aim 4 (Optimal measures): To determine: (a) the “value-added” of our comprehensive biobehavioral assessments of emotional functioning compared to more commonly used questionnaires and tests, and (b) optimal sets of measures for predicting particular caregiver (e.g., declines in physical health; declines in mental health) and patient (i.e., mortality) outcomes. Significance: Identifying emotional characteristics of patients, caregivers, and patient-caregiver relationships that are associated with adverse effects of caregiving and the mechanisms that mediate these associations adds to our understanding of a growing public health problem and helps identify indicators of heightened vulnerability and targets for future interventions.