Supporting Family Caregivers of Persons with Dementia

项目摘要 准确估计疼痛患病率和疼痛管理质量的努力， 患有阿尔茨海默病和相关痴呆症（ADRD）的患者人群已经与 不同的成功。关于疼痛的沟通对于患有以下疾病的患者来说是极具挑战性的： 晚期痴呆，疼痛的病因难以确定。此外，患者可能 由于无法理解镇痛的目的而抵制疼痛治疗， 由于安慰剂效应的破坏，从镇痛中获得的益处减少。家庭 照顾者（家庭成员、配偶、朋友或其他承担关键照顾角色的人） 处于慢性压力、身体健康恶化、经济困难的高风险之中， 过早死亡他们患抑郁症、焦虑症和悲伤症的比例很高; 对病人的管理一直是最普遍表达的关注之一。基于 初步工作，我们检查疼痛管理的挑战和需求， ADRD患者的护理人员，我们设计了一个名为ENCODE的行为干预， 帮助护理人员有效识别和沟通他们的疼痛管理挑战 和需求我们提出了一项为期5年的随机临床试验，在该试验中， ADRD将被随机分配到接受标准治疗的一组， 呼叫”（注意力控制组）或接受标准护理的组， ENCODE干预（干预组）。具体目标是评估 对照顾者结果的干预，包括生活质量、健康、焦虑和抑郁，以及 他们对干预的看法。此外，为了促进通过《 在实践中，我们将进行成本分析，以证明与 它的交付，并确定障碍和促进采用。

Project Summary Efforts to accurately estimate the prevalence of pain and quality of pain management in the population of patients with Alzheimer’s Disease and Related Dementias (ADRD) have met with varied success. Communication about pain can be extremely challenging for patients with advanced dementia, and the etiology of pain difficult to determine. In addition, patients may resist pain treatments due to their inability to understand the purpose of analgesia and may receive decreased benefit from analgesia due to the disruption of the placebo effect. Family caregivers (family members, spouses, friends or others who assume the critical caregiving role) are at high risk for chronic stress, deteriorating physical health, financial difficulties, and premature death. They suffer from high rates of depression, anxiety and grief; pain management for their patients has been one of the most commonly expressed concerns. Based on preliminary work whereby we examined pain management challenges and needs of caregivers of patients with ADRD, we designed a behavioral intervention entitled ENCODE to assist caregivers in effectively identifying and communicating their pain management challenges and needs. We propose a 5- year randomized clinical trial in which caregivers of patients with ADRD will be randomly assigned to a group receiving standard care with the addition of “friendly calls” (attention control group) or a group receiving standard care with the addition of the ENCODE intervention (intervention group). The specific aims are to assess the impact of the intervention on caregiver outcomes including quality of life, health, anxiety and depression, and their perceptions of the intervention. Additionally, in order to facilitate the adoption of the intervention in practice we will conduct a cost analysis demonstrating the costs associated with its delivery and identify barriers and facilitators to adoption.