Caregiver Outcomes of an Alzheimer's and Dementia Care Program

项目总结/摘要 在美国，估计有540万人患有阿尔茨海默病，这是最常见的疾病。 痴呆症的原因痴呆症的并发症包括福尔斯、吸入性肺炎和问题行为 例如易怒、激动和攻击性。管理这些并发症的大部分负担都落在 护理人员，他们在2015年提供了约181亿小时的无偿护理， 高情绪压力（近60%）和抑郁症（40%）。 为减少堕胎的负面影响而制定的干预措施侧重于培训照顾者， 管理行为症状的策略，加强照顾者的社会支持，并提供喘息机会。多重 纵向参与多个家庭成员提供持续援助的组成干预措施， 疾病的进展在减少护理者的紧张方面是最有效的。 加州大学洛杉矶分校阿尔茨海默氏症和痴呆症护理（ADC）计划，在2012年全面实施，合作伙伴与 以社区为基础的组织为患者提供全面，协调，以患者为中心的护理 阿尔茨海默氏症和其他痴呆症。该计划的目标是最大限度地发挥患者的功能， 独立和尊严，最大限度地减少照顾者的压力和倦怠，并通过以下措施减少不必要的费用： 改善护理。截至2016年11月，该计划已为1900多名参与者及其护理人员提供服务。 根据最初的1年结果数据，参与的护理人员能够更好地照顾患有 痴呆他们收到了更多关于痴呆症护理的建议，并且有更高的自我意识。 有效地控制疾病。因此，尽管疾病进展，照顾者抑郁评分， 与行为症状相关的痛苦和照顾者压力分别改善了25%，24%和11%。 拟议的研究将广泛评估加州大学洛杉矶分校ADC对护理人员和患者的有效性 结果和与改善该计划的前1091名参与者的结果相关的成本。 尽管总体上护理者和患者表现出临床获益，但这些获益并未累积 每一个照顾者。这项研究将集中在确定谁受益（定义）照顾者的特点 低或改善的痛苦，紧张，或抑郁）从参与该计划。它也将进行成本 分析侧重于上文定义的成本效益。这些信息将用于改进该计划。 这一正式评估的照顾者有效性的一个成功的临床计划集中在阿尔茨海默氏症 疾病和其他痴呆症将提供关于如何最好地支持照顾者的重要信息。

PROJECT SUMMARY/ABSTRACT In the United States, an estimated 5.4 million persons are affected by Alzheimer's disease, the most common cause of dementia. The complications of dementia include falls, aspiration pneumonia, and problem behaviors such as irritability, agitation, and aggression. Much of the burden of managing these complications lands upon caregivers, who provided an estimated 18.1 billion hours of unpaid care in 2015 and developed high or very high emotional stress of caregiving (nearly 60%) and depression (40%). Interventions developed to decrease the negative aspects of caregiving have focused on training caregivers on strategies to manage behavioral symptoms, enhancing caregiver social support, and providing respite. Multi- component interventions that longitudinally engage multiple family members to provide ongoing assistance as the disease progresses have been most effective at reducing caregiver strain. The UCLA Alzheimer's and Dementia Care (ADC) program, fully implemented in 2012, partners with community-based organizations to provide comprehensive, coordinated, patient-centered care for patients with Alzheimer's disease and other dementias. The goals of the program are to maximize patient function, independence and dignity, minimize caregiver strain and burnout and reduce unnecessary costs through improved care. As of November 2016, the program has served over 1900 participants and their caregivers. Based on the initial 1-year outcomes data, participating caregivers were better able to care for patients with dementia. They had received significantly more advice about dementia care and have significantly higher self- efficacy about managing the disease. As a result, despite disease progression, caregiver depression scores, distress related to behavioral symptoms, and caregiver strain improved by 25%, 24%, and 11%, respectively. The proposed research will extensively evaluate the effectiveness of the UCLA ADC on caregiver and patient outcomes and the costs associated with improving outcomes for the first 1091 participants in the program. Although in aggregate caregivers and patients demonstrated clinical benefits, these benefits were not accrued by every caregiver. The research will focus on determining characteristics of caregivers who benefit (defined as low or improved distress, strain, or depression) from participation in the program. It will also conduct a cost analysis focusing on cost per benefit as defined above. This information will be used to improve the program. This formal evaluation of the caregiver effectiveness of a successful clinical program focused on Alzheimer's disease and other dementias will provide important information about how best to support caregivers.