A Multi-Site Cluster RCT of the Dementia Symptom Management At Home Program

项目总结/摘要 随着人口老龄化，阿尔茨海默病及相关疾病（痴呆症）的发病率 预计将翻三倍。大多数痴呆症患者将在社区得到照顾。然而，支持 如上文所述，现时并没有足够资源，以确保残疾人士在社区内获得适当的照顾。 解决老年痴呆症的国家计划一种形式的社区护理，经常提供给 社区中的PWD是家庭医疗保健。虽然这些临床医生经常照顾PWD，但很少有机构或家庭 健康临床医生适当准备提供姑息，症状为基础，病人和家庭为中心 照顾这些弱势群体。有超过10，000个熟练的家庭保健机构提供护理， 美国几乎每个县都有因此，家庭医疗保健是一种未开发的现有资源， 可以更有效地利用，以提高护理质量和生活质量的残疾人和他们的非正式 护理人员，降低利用率，减少医疗保健支出。最需要关注的领域 改善是在管理疼痛和行为和心理障碍（BPSD）的PWD，因为他们 对PWD和护理人员的生活质量以及医疗保健利用都有显著影响。的 家庭痴呆症症状管理计划（DSM-H）是一个跨专业的循证多学科， 专门为家庭保健机构开发的组成部分干预。它包括临床医生培训， 辅导和循证评估工具、护理计划和护理人员教学表。DSM- H已显示出强有力的初步结果，因此本研究将进行多中心随机分组 功效试验DSM-H将在三个不同家庭医疗保健的护理团队中随机实施 分布在美国不同地区的机构。本试验的目的是：1）测量效果 DSM-H对PWD患者生活质量和症状严重程度的影响。2)评估DSM-H的影响 残疾人非正式照顾者的生活质量和身心健康。3)评估 DSM-H对残疾人医疗保健利用的影响。本研究将招募460名残疾人-非正式 护理者对和每个对将在入院时、入院后15天、30天和60天由 使用标准化评估工具的独立盲法研究助理。我们假设 DSM-H将改善PWD和护理人员的生活质量，改善症状管理， 利用率虽然其他干预措施侧重于以家庭为基础的模式，但以前的干预措施没有使用 既有跨专业的模型，也有使用现有的、广泛的服务模型的模型。本研究 因此，这将是第一个测试潜在的广泛传播的有效性的重要和创新的， 有效的循证姑息治疗和症状管理干预，以改善生活质量 残疾人及其非正式护理人员接受家庭医疗保健。

PROJECT SUMMARY/ABSTRACT As the population ages, the incidence rate of Alzheimer’s Disease and Related Disorders (dementia) is expected to triple. Most persons with dementia (PWD) will be cared for in the community. However, the support and resources to ensure proper care is provided to PWD in the community is not currently present as noted in the National Plan to Address Alzheimer’s. One form of community-based care that is frequently provided to PWD in the community is home healthcare. While these clinicians often care for PWD, few agencies, or home health clinicians are appropriately prepared to provide palliative, symptom based, patient and family centered care for this vulnerable population. There are over 10,000 skilled home healthcare agencies providing care in almost every county across the United States. Thus, home healthcare is an untapped existing resource that could be utilized more effectively to improve the quality of care and quality of life for the PWD and their informal caregiver, reduce utilization, and decrease healthcare spending. The most concerning areas in need of improvement is in managing pain and behavioral and psychological disturbances (BPSD) in the PWD as they have significant effects on both PWD and caregiver quality of life, as well as on healthcare utilization. The Dementia Symptom Management at Home Program (DSM-H) is an interprofessional evidence-based multi- component intervention developed specifically for home healthcare agencies. It includes clinician training, mentorship and evidence-based assessment instruments, careplans and caregiver teaching sheets. The DSM- H has shown strong preliminary results, and therefore this study will perform a multi-site cluster randomized efficacy trial. The DSM-H will be randomly implemented in care teams at three diverse home healthcare agencies located in different regions of the United States. The aims of this trial are to: 1) Measure the effects of the DSM-H on quality of life and symptom severity in the PWD. 2) Assess the effects of the DSM-H on quality of life, and physical and mental health in the informal caregiver of the PWD. 3) Assess the effects of the DSM-H on healthcare utilization in the PWD. This study will recruit 460 PWD-informal caregiver dyads and each dyad will be assessed on admission, 15, 30 and 60 days post admission by an independent, blinded research assistant using standardized assessment instruments. We hypothesize that the DSM-H will improve quality of life of the PWD and caregiver, improve symptom management, and reduce utilization. While other interventions have focused on home-based models, no prior interventions have used both an interprofessional model and one where an existing, widespread, service model is used. This study is therefore significant and innovative as it will be the first to test the efficacy of a potentially widely disseminable and impactful evidence-based palliative and symptom management intervention for improving the quality of life for PWD and their informal caregivers receiving home healthcare.