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

阿尔茨海默氏症家庭联系：为农村 ADRD 护理人员提供的新型在线社区和个性化资源连接

• 批准号: 10602087
• 负责人: Christian Elliott
• 金额: $ 49.98万
• 依托单位: WHIPLASH TECHNOLOGY, INC.
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-30 至 2024-02-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10602087
• 关键词: Address; Adopted; Adult; Aging; Alzheimer' s Disease; Alzheimer' s disease related dementia; California; Caregiver Burden; Caregivers; Caring; Communication; Communities; Community Networks; Consensus; Critiques; Data; Dementia caregivers; Effectiveness; Face; Family; Family Caregiver; Family member; Future; Geography; Goals; Health; Hybrids; Indiana; Infrastructure; Interview; Kentucky; Long-Term Care; Measures; Modeling; Needs Assessment; Outcome; Personal Satisfaction; Persons; Phase; Process; Public Health Schools; Quality of life; Randomized Clinical Trials; Reduce health disparities; Research; Resources; Rural; Rural Community; Rural Population; Sampling; Site; Social isolation; Social support; Surveys; Technology; Testing; United States; United States National Institutes of Health; Universities; Wisconsin; care coordination; commercialization; community organizations; dementia care; dementia caregiving; design; evidence base; experience; feasibility testing; field study; improved; innovation; novel; online community; prototype; response; rural area; rural families; rural health disparities; social health determinants; software development; urban area; usability; user centered design

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.

项目摘要 农村ADRD家庭照顾者的照顾者负担高于农村ADRD家庭照顾者， 城市对应方，受与身体和健康相关的社会决定因素（SDOH）影响， 与为ADRD患者提供护理相关的社会隔离。目前，可用的技术 缺乏对农村ADRD护理人员的关注，对社区对健康结果的影响关注有限。 为了满足这一关键需求，并响应RFA-MD-22-004，我们建议与农村ADRD合作， 在以用户为中心的阿尔茨海默氏症家庭共同设计过程中， 连接，一个创新和新颖的在线社区和个性化的资源连接特定于 农村ADRD护理人员的需求。我们将把这一新功能与CareVirtue整合在一起，CareVirtue是一个现有的多功能 专门为支持ADRD家庭护理人员而设计的护理协调平台。CareVirtue开发 通过迭代的以用户为中心的设计过程，我们的第一阶段数据证明了CareVirtue的可用性， ADRD护理人员及其护理网络在各种地理位置的日常使用的有用性和可行性 分布式设置。根据NIH阶段模型，我们将进行阶段0和阶段1A/1B活动，以设计， 开发和评估阿尔茨海默氏症家庭联系。首先，我们将以用户需求为中心进行 评估生活在农村社区的ADRD照顾者的资源需求（第0阶段）。二是 共同设计阿尔茨海默氏症家庭连接，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与农村ADRD护理人员进行沟通（IA阶段）。三是 证明我们的解决方案在农村ADRD护理人员中的可行性（IB阶段）。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， 消除农村ADRD护理人员遇到的障碍，并可能改善福祉和生活质量 ADRD家庭。该I期项目将为更大的II期混合疗效/有效性阶段奠定基础 阿尔茨海默氏症家庭联系的3项随机临床试验，旨在测试农村ADRD照顾者的变化 这种专门为农村ADRD护理人员设计的以用户为中心的解决方案的商业化负担 拥有超本地资源和与当地社区的联系。