SAGE LEAF 2: An Online Self-Guided Positive Emotion Regulation Program to Reduce Alzheimer's Dementia Caregiver Burden Delivered through Caregiver-Serving Organizations

项目摘要 仅在美国，就有1100多万家庭照顾者为阿尔茨海默氏症患者提供护理 疾病或其他痴呆症。1据估计，这些家庭照顾者 承担受照人一生中总护理费用的70%，其中包括 医疗账单和无偿照看时间2.与照顾有关的压力有助于社会 与世隔绝、孤独和身体疾病，并增加照顾者死亡的风险。目前， 大多数照顾者干预的重点是减轻负担、压力和负面情绪。然而， 我们团队和其他人越来越多的研究表明，积极的情绪 独特地与有益的健康结果相关，独立于负面影响 情绪，8-12岁，有望对抗负面的心理和身体健康 照顾的影响。我们开发并测试了促进者提供的积极情绪调节 对痴呆症照顾者的干预显示出积极情绪的显著改善， 与情绪报告等待名单相比，照顾、抑郁和焦虑的积极方面 13然而，提供促进者的费用对执行工作构成了挑战， 树叶的传播和商业化。在线自我指导课程更容易 然而，在传播的过程中，他们通常缺乏一种社会联系，而考虑到 孤独和社会孤立在痴呆症照顾者中，14，15是有问题的。在这个项目的第一阶段 研究计划(R43AG065080；Yang and Moskowitz，MPI)，我们量身定做了一个自我指导的在线 积极情绪调节干预(称为圣人之叶--自我引导的社会强化 以电子方式提供增强家庭照顾者生活的活动)，通过纳入社会 单独通过该计划的护理人员的连接组件(与分组进行比较；请参阅 第一阶段进度报告)。对照顾者的采访和焦点小组表明了对圣人的渴望 在同时参与的照顾者队列中，叶到宿主的互动。一份证明- 概念研究表明，鼠尾草叶原型是可行和可接受的。护理者 将社交增强功能评为中等可用性，并提出了改进功能的建议方法 在用户控制面板上更可见。在拟议的第二期项目中，我们将进一步发展 鼠尾草叶包括促进诊所、护理中心和其他机构实施的功能 为照顾者群体提供照顾者服务的组织(CSO)，以利用社会 虚拟鼠尾草叶环境中的连接，并将进行一项务实的试验，其中 鼠尾草是通过民间社会组织实施的。

Project Summary In the US alone, more than 11 million family caregivers provide care for someone with Alzheimer's disease or other dementia on a daily basis.1 These family caregivers have been estimated to shoulder 70% of the total cost of care over their care recipient’s lifetime, costs which include medical bills and unpaid caregiving hours.2 Caregiving-related stress contributes to social isolation, loneliness, and physical illness and increases the risk of caregiver death.3-7 Currently, most caregiver interventions focus on reducing burden, stress, and negative emotions. However, a growing body of research from our team and others demonstrates that positive emotion is uniquely associated with beneficial health outcomes, independent of the effects of negative emotion,8-12 and holds promise for countering the negative psychological and physical health effects of caregiving. We developed and tested a facilitator-delivered positive emotion regulation intervention for dementia caregivers that showed significant improvements in positive emotion, positive aspects of caregiving, depression, and anxiety compared to an emotion reporting waitlist control.13 However, the expense of facilitator delivery poses challenges to the implementation, dissemination, and commercialization of LEAF. Online self-guided programs are more easily disseminated, however, they generally lack a social connection which, given the high rates of loneliness and social isolation among dementia caregivers,14,15 is problematic. In phase I of this program of research (R43AG065080; Yang and Moskowitz, MPI), we tailored a self-guided online positive emotion regulation intervention (called SAGE LEAF - Social Augmentation of self-Guided Electronic delivery of the Life Enhancing Activities for Family caregivers) by incorporating social connection components for caregivers going through the program individually (vs in groups; See Phase I progress report). Interviews and focus groups with caregivers indicated a desire for SAGE LEAF to host interactions within cohorts of caregivers participating at the same time. A proof-of- concept study indicated that the SAGE LEAF prototype was feasible and acceptable. Caregivers rated the social enhancements as moderately usable and suggested ways to make the features more visible on the user dashboard. In the proposed Phase II project, we will further develop SAGE LEAF to include features to foster implementation by clinics, care centers, and other caregiver-serving organizations (CSOs) for groups of caregivers to leverage the benefits of social connections within the virtual SAGE LEAF environment and will conduct a pragmatic trial in which SAGE LEAF is implemented through the CSOs.