Caregiver as Navigator-Developing Skills Online (CAN-DO): Developing Dementia Family Caregiver Mastery for Navigating Complex Health, Social Service, Legal, Financial, and Family Systems

摘要 老年痴呆症和相关疾病的费用和管理由家庭承担， 老年痴呆症患者护理系统的一部分。目前有1100多万非正式护理人员 指导PLWD的日常生活，财富和护理系统的相互作用。促进有效的应对行为， 加强照顾者与系统和结构进行互动的能力， PLWD所需的护理可能会降低护理人员的高水平压力。确保这些系统和 有效地进入和部署结构可能有益于PLWD。本研究的目的是测试 照顾者作为导航员：发展技能在线（CAN-DO）计划的照顾者掌握和情绪良好- 以及所有人报告的生活质量和行为症状。 CAN-DO专注于医疗保健导航，包括与健康，法律的，社会服务，金融 家庭护理系统和护理管理活动，认识到社会决定因素影响这些系统和活动， 交互.这项建议建立在一项等待名单控制试点研究的基础上，该研究评估了 可接受性，可行性，和一个自定进度，在线，异步教育计划的初步疗效 开发的目的是促进护理人员掌握护理管理和导航护理系统的技能， 2019冠状病毒病大流行。试点结果证实了试点研究的主要和次要假设。我们发现了一个 干预之间存在显著的组x时间差异（p= 0.041）和中等效应量（d-0.524） 在护理者的关键指标上，在2个月的时间点， 掌握并在改善护理人员的抑郁症状方面取得了相当显着的结果， 照顾者的负担参与者的反馈也指导了内容扩展和课程互动的迭代。 CAN-DO研究将采用三组等待列表RCT设计，在基线时收集数据， 然后在2、4、6和8个月后使用标准仪器。我们将招募和有意多样化的样本， 将270名护理人员分成15人一组，然后以2：2：1的比例随机分配到三项研究中 组：CAN-DO;具有可比大小和交互性的“健康生活”注意力控制条件;以及 在乎我们将进行定性访谈，以指导进一步的改进。

Abstract The costs and management of Alzheimer’s disease and related disorders are borne by families, the backbone of the care system for persons living with dementia (PLWD). More than 11 million informal caregivers currently guide the daily lives, fortunes, and care system interactions of PLWD. Promoting effective coping behaviors by strengthening caregivers’ capacities for navigating interactions with systems and structures that provide needed care for PLWD may reduce the high levels of caregiver stress. Ensuring that these systems and structures are effectively accessed and deployed may benefit PLWD. The purpose of this study is to test the Caregiver as Navigator: Develop Skills Online (CAN-DO) program on caregiver mastery and emotional well- being as well as caregiver-reported quality of life and behavioral symptoms of their person. CAN-DO focuses on healthcare navigation to include interactions with health, legal, social service, financial and family care systems and care management activities, recognizing that social determinants affect these interactions. This proposal builds on a wait-list control pilot study, Caregiving during Crisis, which assessed the acceptability, feasibility, and preliminary efficacy of a self-paced, online, asynchronous educational program developed to promote caregivers’ mastery of skills for managing care and navigating care systems during the COVID-19 pandemic. Pilot results confirm the pilot study’s primary and secondary hypotheses. We found a significant group x time difference (p=.041) with a moderate effect size (d-0.524) between the intervention (N=37) and usual care wait-list control (N=38) group at the 2-month point on the key measure of caregiver mastery and comparable significant results for improvements in caregivers’ depressive symptoms and caregiver burden. Participant feedback also guides this iteration of content expansion and course interactivity. The CAN-DO study will employ a three-arm wait-list RCT design in which data will be gathered at baseline and then 2, 4, 6, and 8 months later using standard instruments. We will enroll and intentionally diverse sample of 270 caregivers to be clustered in cohorts of 15 and then randomly assigned in a 2:2:1 ratio to three study groups: CAN-DO; a “Healthy Living” attention control condition of comparable size and interactivity; and usual care. We will conduct qualitative interviews to guide further enhancements.