SCC-PG: Planning Live, Sustainable Community Asset Mapping for a Dementia e-Friendly Alabama

在570万患有阿尔茨海默病或相关痴呆症（ADRD）的美国人中，大多数人居住在社区，接受无偿家庭照顾者的照顾。ADRD的护理是复杂的，护理人员经常报告缺乏支持和服务障碍，这往往导致抑郁、负担和孤立感。与此同时，初级保健提供者报告说，他们不知道当地的支持服务，他们可以转介患者和护理人员寻求支持。在阿拉巴马州，解决ADRD护理问题尤其紧迫，在未来六年内，预计ADRD病例将增加17%，患者/护理人员在地理上是孤立的，脆弱的，并且不了解当地的支持服务和资源。为了更好地支持ADRD护理人员并将他们与所需服务联系起来，该规划项目将与阿拉巴马州四个地区的社区利益相关者合作，启动社区资产测绘（CAM）技术的开发，该技术：(a)利用志愿地理信息（VGI）和数据挖掘；(b)对数据的准确性和质量进行自我监测；(c)社区居民和提供者可以利用这些资源将家庭与满足其ADRD需求的支持性资源联系起来。为了向这项技术的发展提供信息，规划项目将通过访谈、焦点小组和调查，从各种利益相关者（ADRD患者、护理人员、提供者、决策者）那里收集数据。收集的数据将解决在开发拟议技术和促进利益攸关方采用和参与方面的一些概念性问题。该项目还将探索和评估管理数据的方法，这些方法考虑到空间和时间、数据挖掘的可用数据源以及拟议技术的数据挖掘算法。总体而言，规划项目将探索新的众包协议如何通过VGI技术推动社区参与，旨在解决ADRD护理和护理问题。更重要的是，该项目有可能将关于ADRD护理和护理的社会科学研究从孤立使用的现有技术方法（例如，互联网搜索）或由小团体使用的技术方法（例如，虚拟支持小组）转变为一种相互联系的社区方法，促进社会和相互支持，并受当地改善护理和生活质量需求的推动。该项目由智能互联社区和促进竞争研究的既定计划（EPSCoR）共同资助。该奖项反映了美国国家科学基金会的法定使命，并通过使用基金会的知识价值和更广泛的影响审查标准进行评估，被认为值得支持。

Among the 5.7 million Americans with Alzheimer’s disease or related dementia (ADRD), most reside in the community and receive care from unpaid family caregivers. ADRD caregiving is complex and caregivers often report having a lack of support and barriers to services, which often results in feelings of depression, burden, and isolation. At the same time, primary care providers report being unaware of local supportive services that they can refer patients and caregivers to for support. There is particular urgency to address issues of ADRD care in Alabama, where there is an expected 17% increase in cases of ADRD over the next six years and patient/caregiver populations that are geographically isolated, vulnerable, and unaware of local support services and resources. To better support ADRD caregivers and link them to needed services, this planning project will engage community stakeholders in four regions of Alabama to initiate the development of a community asset mapping (CAM) technology that: (a) utilizes volunteered geographic information (VGI) and data mining; (b) is self-monitoring for data accuracy and quality; and (c) can be used by community residents and providers to connect families with supportive resources that address their ADRD needs. To inform the development of this technology, the planning project will collect data from a variety of stakeholders (people with ADRD, caregivers, providers, policymakers) through interviews, focus groups, and surveys. The data collected will address a number of conceptual issues in developing the proposed technology and promoting its adoption and engagement by stakeholders. The project will also explore and evaluate approaches to managing data that takes into account both space and time, available data sources for data mining, and data mining algorithms for the proposed technology. Overall, the planning project will explore how new crowd sourcing protocols may drive community engagement with a VGI technology that aims to address issues of ADRD care and caregiving. More importantly, the project can potentially transform social science research on ADRD care and caregiving from existing technology approaches that are used in isolation (e.g., internet searches) or by small groups (e.g., virtual support groups) towards a connected community approach that facilitates social and mutual support and is driven by local needs to improve care and quality of life.This project is jointly funded by Smart and Connected Communities and the Established Program to Stimulate Competitive Research (EPSCoR).This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.