Alzheimer's Family Connection: A Novel Online Community and Personalized Resource Connection for Rural ADRD Caregivers

项目摘要 农村ADRD家庭照顾者的照顾者负担比他们的家庭照顾者负担更重，社会支持更低 受与身体和健康相关的社会健康决定因素(SDOH)影响的城市对口人员 与照顾ADRD患者相关的社会隔离。目前，可用的技术 缺乏对农村ADRD照顾者的关注，对社区对健康结果的影响的关注有限。 为了满足这一迫切需要，并响应RFA-MD-22-004，我们建议与农村ADRD接触 阿尔茨海默病家庭以用户为中心的共同设计过程中的照顾者和社区资源 连接，一个创新的、新颖的在线社区和个性化的资源连接，专用于 农村ADRD照顾者的需求。我们将这一新功能与CareVirtue集成，CareVirtue是现有的多用途 专门为支持ADRD家庭照顾者而设计的护理协调平台。CareVirtue是由 通过迭代的以用户为中心的设计流程，我们的第一阶段数据展示了CareVirtue的可用性， ADRD照顾者及其护理网络在不同地区日常使用的有用性和可行性 分布式设置。遵循NIH阶段模式，我们将进行阶段0和阶段1A/1B活动来设计， 开发和评估阿尔茨海默氏症家族关系。首先，我们将进行以用户需求为中心的 评估农村社区ADRD照顾者的资源需求(第0阶段)。第二，我们将 共同设计阿尔茨海默氏症家庭联系，这是一个地理定位的ADRD资源原型，利用公共和用户生成的资源和设施，并与农村ADRD照顾者进行沟通(阶段IA)。第三，我们将 向农村ADRD照顾者展示我们解决方案的可行性(阶段IB)。我们的长期目标是创造 以证据为基础的解决方案，并将以用户为中心的产品商业化，从而显著减少或 消除农村ADRD照顾者遇到的障碍，并有可能改善福祉和生活质量 为ADRD家庭提供的。该第一阶段项目将为更大的第二阶段混合功效/有效性阶段奠定基础 3项阿尔茨海默病家庭关系的随机临床试验，旨在测试农村ADRD照顾者的变化 这种以用户为中心的解决方案专门为农村ADRD照顾者设计的商业化负担 拥有超本地化的资源和与当地社区的联系。

PROJECT ABSTRACT Rural ADRD family caregivers have higher caregiver burden and experience lower social support than their urban counterparts, which are impacted by Social Determinants of Health (SDOH) related to the physical and social isolation associated with providing care for a person living with ADRD. Currently, the technology available has lacked focus on rural ADRD caregivers and has limited focus on community influence on health outcomes. To address this critical need, and in response to RFA-MD-22-004, we propose to engage with rural ADRD caregivers and community resources in a user-centered co-design process for the Alzheimer’s Family Connection, an innovative and novel online community and personalized resource connection specific to the needs of rural ADRD caregivers. We will integrate this new feature with CareVirtue, an existing multi-purpose care coordination platform designed specifically to support ADRD family caregivers. CareVirtue was developed through an iterative user-centered design process, and our Phase I data demonstrate CareVirtue’s usability, usefulness, and feasibility for daily use by ADRD caregivers and their care networks in a variety of geographically distributed settings. Following the NIH Stage Model, we will conduct Stage 0 and Stage 1A/1B activities to design, develop, and evaluate the Alzheimer’s Family Connection. First, we will conduct a user-centered needs assessment of the resource needs of ADRD caregivers who live in rural communities (Stage 0). Second, we will co-design Alzheimer’s Family Connection, a geolocated ADRD resource prototype that utilizes public and user-generated resources and facilities communication with rural ADRD caregivers (Stage IA). Third, we will demonstrate the feasibility of our solution with rural ADRD caregivers (Stage IB). Our long-term goal is to create an evidence-based solution and commercialize a user-centered product that can meaningfully reduce or eliminate barriers encountered by rural ADRD caregivers, and potentially improve well-being and quality of life for ADRD families. This Phase 1 project will set the stage for a larger Phase 2 hybrid efficacy/effectiveness Stage 3 randomized clinical trial of Alzheimer’s Family Connection, powered to test changes in rural ADRD caregiver burden toward commercialization of this user-centered solution designed specifically for rural ADRD caregivers with hyper-local resources and connections to the local community.