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

利用技术支持阿尔茨海默病患者的护理合作伙伴：Tele-STELLA

• 批准号: 10228420
• 负责人: Allison Lindauer
• 金额: $ 52.62万
• 依托单位: OREGON HEALTH & SCIENCE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-09-15 至 2021-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10228420
• 关键词: Address; Affect; Affective Symptoms; Alzheimer' s Disease; Alzheimer' s disease related dementia; Behavior; Behavioral; Behavioral Symptoms; Caring; Cellular Phone; Cognitive; Communication; Community Healthcare; Computers; Coupled; Data; Dementia; Devices; Disease; Distress; Education; Educational Intervention; Family; Family member; Feedback; Focus Groups; Foundations; Frequencies; Goals; Grief reaction; Health Sciences; Home environment; Hour; Individual; Internet; Intervention; Kentucky; Learning; Life; Linear Regressions; Link; Literature; Long-Term Care; Measures; Mental Depression; Mentors; Methods; Modeling; Multicenter Studies; Nurses; Oregon; Participant; Persons; Pharmaceutical Preparations; Pilot Projects; Positioning Attribute; Program Acceptability; Protocols documentation; Psyche structure; Psychologist; Quality of life; Randomized Controlled Trials; Recommendation; Research Personnel; Risk; Scientist; Site; Stress; Symptoms; Tablets; Techniques; Technology; Testing; Time; United States; United States National Institutes of Health; Universities; Videoconferences; Videoconferencing; Work; barrier to care; base; care burden; care outcomes; care recipients; cognitive load; cost; dementia care; design; experience; family caregiving; improved; novel; peer; peer support; personalized approach; programs; progressive neurodegeneration; psychologic; psychological symptom; public health priorities; recruit; rural African American; skills; social stigma; symposium; telehealth

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.

项目摘要 阿尔茨海默氏病和相关痴呆症（ADRD）从家庭中提取身体，精神和经济损失 照顾伙伴照顾受影响的人。在疾病的后期，行为和心理症状 痴呆症（BPSD）可能会增加照顾伴侣的负担，增加CP和长期抑郁症的风险。 为那些患有ADRD的人提供护理。可以采取减少CP负担的干预措施，但CP获得 他们受到费用、距离、护理要求和耻辱的限制。此外，大多数干预措施不是针对 疾病的晚期，BPSD更常见。这种NIH Stage 1B混合方法的目的 一项研究旨在测试以远程保健为基础的家庭护理干预的可行性、可接受性和有效性 “伙伴”是指那些有“伙伴”之称的人。具体来说，我们的目标是完善和优化多站点Tele-STELLA （通过技术支持：生活和学习与推进ADRD）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提供了一个渐进的 介绍对有压力的护理伙伴的教育和同伴支持。干预开始于一对一 在Tele-STELLA指南（护士或心理学家）的支持下，然后向四名CP提供一份指南。后 完成八小时的课程（超过八周）后，CP将与多达20名CP一起， 对等组件基于ECHO（社区医疗保健成果扩展）模板建模。的 干预是专门针对CP的，因此本研究将不包括ADRD护理接受者。然而，技能CP 在Tele-STELLA中开发的技术将被整合到痴呆症患者的护理中，从而减少他们的 行为。我们假设，减少ADRD患者的行为症状频率将 改善护理伙伴情感症状（负担、抑郁、悲伤）和护理伙伴的生活质量， 痴呆症患者这一混合方法研究将评估在全世界实施Tele-STELLA的可行性。 三个研究中心（俄勒冈州、肯塔基州和格鲁吉亚），有150个CP。我们将招募农村和非洲裔美国人的CP， 以及白色CP。我们将评估消费者的可接受性和治疗保真度。我们将 确定Tele-STELLA在降低行为和心理症状频率方面的疗效， 痴呆症（BPSD）的人与ADRD。我们将使用前后评估和线性 回归策略，以评估Tele-STELLA参与对护理伴侣负担的影响。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 审查会议录像。这一建议的基础是两项试点研究， Tele-STELLA的早期版本。下一步，也是本提案的目标，是彻底测试 跨中心干预，为多中心随机对照试验做准备。我们的长期目标是 通过为任何符合以下条件的CP提供Tele-STELLA干预，减轻CP的心理负担 可以使用设备（计算机、智能手机或平板电脑）和互联网连接。