Supporting Family Caregivers of Persons with Dementia

项目摘要 努力准确地估计疼痛的患病率和疼痛管理的质量 阿尔茨海默病和相关痴呆症(ADRD)患者群体已与 多种多样的成功。对于患有以下疾病的患者来说，关于疼痛的沟通可能非常困难 晚期痴呆症，疼痛的病因难以确定。此外，患者还可以 由于无法理解止痛的目的而抵制疼痛治疗，并可能 由于安慰剂效应的中断，从止痛中获得的好处减少。家庭 照顾者(家庭成员、配偶、朋友或其他承担关键照顾者角色的人) 处于长期压力、身体健康恶化、经济困难以及 过早死亡。他们遭受着高比例的抑郁、焦虑和悲伤；痛苦 对病人的管理一直是最常见的担忧之一。基座 在初步工作中，我们检查了疼痛管理的挑战和需求 ADRD患者的照顾者，我们设计了一种名为ENCODE的行为干预 协助护理者有效地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，患者的照顾者 ADRD将被随机分配到接受标准护理的小组中，并增加了 呼叫“(注意控制组)或接受标准护理的小组，并增加 编码干预(干预组)。具体目标是评估 对照顾者的结果进行干预，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 干预在实践中，我们将进行成本分析，展示与 它的交付，并确定采用的障碍和促进者。

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.