Using Technology to Support Care Partners for Persons with Alzheimer's Disease: Tele-STELLA

项目总结 阿尔茨海默病和相关痴呆(ADRD)给家庭带来了身体、精神和经济上的损失 照顾那些受影响的人的合作伙伴。在疾病的后期，行为和心理症状 痴呆症(BPSD)会增加护理伙伴的负担，增加CPS和长期抑郁的风险 ADRD患者的护理安置。减轻CP负担的干预措施是可用的，但CP可以获得 他们受到成本、距离、护理需求和耻辱的限制。此外，大多数干预措施并不是针对 疾病的后期，BPSD更常见。NIH阶段1B混合方法的目的 这项研究是为了测试基于远程健康的家庭护理干预的可行性、可接受性和有效性 ADRD患者的合作伙伴(CP)。具体地说，我们的目标是提炼和优化多站点Tele-Stella (通过技术提供支持：与先进的ADRD一起生活和学习)干预。Tele-Stella是一个视频- 基于会议的干预，CP可以从自己的家中访问。Tele-Stella提供了一种渐进的 为有压力的护理伙伴介绍教育和同伴支持。干预从一对一开始 支持Tele-Stella指南(护士或心理学家)，然后前进到四个CP的一个指南。之后 完成八个小时的课程(超过八个星期)，CPS将加入多达20个CPS，在两名指导下，在一个 以ECHO(社区医疗保健结果扩展)模板为模型的对等组件。这个 干预是专门针对CPS的，本研究中没有ADRD的护理接受者。然而，技能CPS 在Tele-Stella中发展将整合到痴呆症患者的护理中，从而减少他们 行为。我们假设，减少ADRD患者的行为症状频率将 改善护理伙伴的情感症状(负担、抑郁、悲伤)和护理伙伴的生活质量 那些痴呆症患者。这项混合方法研究将评估实施Tele-Stella的可行性 三个站点(俄勒冈州、肯塔基州和佐治亚州)，平均每秒150分。我们将招募农村和非洲裔美国人CP，作为 和白人CP一样，用于这项研究。我们将评估消费者的可接受性和治疗忠诚度。我们会 建立TELE-STELLA在减少行为和心理症状发生率方面的疗效 ADRD患者的痴呆(BPSD)。我们将使用岗前评估和线性评估来衡量疗效 评估Tele-Stella参与对护理伙伴负担影响的回归策略。焦点小组 将用于寻求有关计划可接受性的反馈。治疗保真度将由专家进行评估 回顾录像会议。这一建议的基础是通过两项试验性研究奠定的，这两项研究评估了 Tele-Stella的早期版本。下一步，也是这项提案的目标是彻底测试 跨地点干预，为多地点随机对照试验做准备。我们的长期目标是 通过为任何CP提供Tele-Stella干预来减少CPS的心理负担 能够访问设备(计算机、智能手机或平板电脑)和互联网连接。

PROJECT SUMMARY Alzheimer's disease and related dementias (ADRD) extract a physical, mental and financial toll from family care partners caring for those affected. In the later stages of disease, behavioral and psychological symptoms of dementia (BPSD) can add to care partner burden, increasing the risk of depression in CPs and long-term care placement for those with ADRD. Interventions that reduce CP burden are available, but CP access to them is limited by cost, distance, care demands and stigma. Further, most interventions are not tailored to the later stages of disease, when BPSD are more common. The purpose of this NIH Stage 1B mixed methods study is to test the feasibility, acceptability and efficacy of a telehealth-based intervention for family care partners (CP) for those with ADRD. Specifically, we aim to refine and optimize the multi-site Tele-STELLA (Support via TEchnology: Living and Learning with Advancing ADRD) intervention. Tele-STELLA is a video- conference based intervention that CPs can access from their own homes. Tele-STELLA provides a gradual introduction to education and peer support for stressed care partners. The intervention begins one-to-one support with a Tele-STELLA Guide (a nurse or psychologist), then advances to one Guide to four CPs. After completing eight hour-long sessions (over eight weeks), CPs will join up to twenty CPs, with two Guides, in a peer component modeled on the ECHO (Extension of Community Healthcare Outcomes) template. The intervention is specifically for CPs, no care-recipients with ADRD will be in this study. However, the skills CPs develop in Tele-STELLA will be integrated into the care of the person with dementia, thus reducing their behaviors. We hypothesize that reducing the frequency of behavioral symptoms in the person with ADRD will improve care partner affective symptoms (burden, depression, grief) and quality of life for care partners and those with dementia. This mixed-methods study will assess the feasibility of implementing Tele-STELLA across three sites (Oregon, Kentucky and Georgia) with 150 CPs. We will recruit rural and African American CPs, as well as white CPs, for this study. We will assess consumer acceptability and treatment fidelity. We will establish the efficacy of Tele-STELLA on reducing the frequency of behavioral and psychological symptoms of dementia (BPSD) in persons with ADRD. We will measure efficacy using pre-post assessments and linear regression strategies to assess the effect of Tele-STELLA participation on care partner burden. Focus groups will be used to seek feedback about program acceptability. Treatment fidelity will be assessed with expert review of video-taped sessions. The foundation of this proposal was laid with two pilot studies which assessed early versions of Tele-STELLA. The next step, and the goal of this proposal, is to thoroughly test the intervention across sites to prepare it for a multi-site randomized controlled trial. Our long term goal is to reduce the psychological burden CPs experience by providing the Tele-STELLA intervention for any CP who has access to a device (computer, smartphone or tablet) and an internet connection.