An Innovative Caregiver Tool to Assess and Manage Behavioral Symptoms of Dementia

描述(申请人提供)：所有类型的痴呆症的一个特征是扰乱行为症状。与记忆和认知障碍相比，这些行为是照顾痴呆症患者最复杂、最有压力、最昂贵的方面，而且往往主导着疾病的表现。家庭在管理家庭行为方面处于领先地位，但他们通常缺乏必要的知识和技能来确定和监测诱发因素并确定有效的治疗方法。目前还没有FDA批准的药物来治疗行为症状，尽管临床上常见的做法是使用抗精神病药物等精神药物。然而，这些药物的疗效有限，引入了严重副作用和死亡的风险，并且没有解决 对家庭来说最有问题的行为，使他们的日常第一线使用了一个糟糕的策略。或者，在随机试验中，非药物方法已经被证明在没有药物的物理风险的情况下具有显著的益处。不幸的是，由于在家中缺乏辅助行为管理的工具，FRAME对它们的使用受到限制。为了解决这一差距，拟议的工作将采用混合方法策略来开发和测试多媒体自动算法工具，以帮助家庭照顾者更好地理解和管理行为症状。这一名为WeCare的工具将通过循证决策树系统地指导照顾者：1)评估和监测行为症状的存在和严重程度；2)确定潜在的诱发因素并对其进行监测(例如，睡眠障碍、疼痛)；3)识别和缓解可改变的潜在致病因素；4)使用有效的语言和非语言交流；5)识别需要医疗帮助的行为症状(疼痛、攻击性行为的突然发生)；以及5)使用非药物策略来预防、减少或管理行为症状。具体目标是：#1：在不同的患者、照顾者和提供者(总共n=60人)中确定关于评估和行为管理的教育需求，了解治疗选择和WeCare工具的格式偏好(第一阶段)；#2：开发WeCare工具的原型并与照顾者一起进行初始测试(n=20)，以告知照顾者独立使用该工具所需的工具修改和指导要素(第二阶段)；以及#3)。检查WeCare工具的完整版本的可用性和有效性，以提高照顾者在行为症状检测和管理方面的效率，并减少使用两个测试点的患者的行为症状(n=60对偶/120人)。这项研究的创新之处在于，关键利益相关者参与了工具开发过程，使用了最新的科学技术，以及检测和监控行为的算法方法，并选择了非药物解决方案。WeCare有潜力提高照顾者的技能，并改善目前未接受最佳行为管理的痴呆症患者的护理。

DESCRIPTION (provided by applicant): A hallmark characteristic of dementia of all types is disruptive behavioral symptoms. More so than memory and cognitive impairments, these behaviors are among the most complex, stressful and costly aspects of caring for people with dementia, and often dominate disease presentation. Families are in the forefront of managing behaviors at home, yet they typically do not have the requisite knowledge and skill to identify and monitor precipitating factors and determine effective treatment approaches. There are no FDA approved medications to treat behavioral symptoms, although common clinical practice is to use psychotropic medications such as antipsychotics. However, these medications have limited efficacy, introduce risks of significant side effects and mortality, and do not address the behaviors most problematic to families, making their routine first-line use a poor strategy. Alternately, nonpharmacologic approaches have been shown in randomized trials to have significant benefits without the physical risks of medications. Unfortunately, their use by familie is limited due to the lack of tools to assist with behavioral management at home. To address this gap, the proposed work will employ a mixed-methods strategy to develop and test a multi-media automated algorithmic tool to assist family caregivers in better understanding and managing behavioral symptoms. The tool, WeCare, will efficiently and effectively assist caregivers by systematically guiding them through evidence-informed decision trees to: 1) assess and monitor presence and severity of behavioral symptoms; 2) identify potential precipitating factors and monitor them (e.g., sleep disturbance, pain); 3) recognize and alleviate modifiable underlying contributing factors; 4) use effective verbal and nonverbal communications; 5) discern behavioral symptoms that require medical assistance (pain, sudden onset of aggressive behaviors); and 5) use nonpharmacologic strategies to prevent, minimize or manage behavioral symptoms. The specific aims are to: #1: Identify in a diverse set of patients, caregivers and providers (total n=60) perceived need for education about assessment and behavioral management, understandings of treatment options and preferences for formatting of the WeCare tool (phase I); #2: Develop a prototype of the WeCare tool and conduct initial testing with caregivers (n=20) to inform tool modifications and instructional elements needed for caregivers to use the tool independently (phase II); and #3). Examine usability and effectiveness of a completed version of the WeCare tool to enhance caregivers' efficacy in behavioral symptom detection and management and reduce behavioral symptoms in patients using two test sites (n=60 dyads/120 people). The research is innovative in its involvement of key stakeholders in the tool development process, use of state-of-the science technology, and algorithmic approach to detecting and monitoring behaviors and selecting nonpharmacologic solutions. WeCare has potential to improve caregiver skills and the care of individuals with dementia who currently do not receive optimal behavioral management.