School of Public Health, Texas A&M University, College Station, TX, United States.
Olera lnc, Houston, TX, United States.
JMIR Res Protoc. 2024 Aug 7;13:e64127. doi: 10.2196/64127.
Alzheimer disease (AD) and AD-related dementia are prevalent concerns for aging populations. With a growing older adult population living in the United States, the number of people living with dementia is expected to grow, posing significant challenges for informal caregivers. The mental and physical burdens associated with caregiving highlight the importance of developing novel and effective resources to support caregivers. However, technology solutions designed to address their needs often face low adoption rates due to usability issues and a lack of contextual relevance. This study focuses on developing a web-based platform providing financial and legal planning information and education for dementia caregivers and evaluating the platform's usability and adoptability.
The goal of this project is to create a web-based platform that connects caregivers with personalized and easily accessible resources. This project involves industrial, academic, and community partners and focuses on two primary aims: (1) developing a digital platform using a Dementia Care Personalization Algorithm and assessing feasibility in a pilot group of caregivers, and (2) evaluating the acceptability and usability of the digital platform across different racial or ethnic populations. This work will aid in the development of technology-based interventions to reduce caregiver burden.
The phase I study follows an iterative Design Thinking approach, involving at least 25 dementia caregivers as a user feedback panel to assess the platform's functionality, aesthetics, information, and overall quality using the adapted Mobile Application Rating Scale. Phase II is a usability study with 300 dementia caregivers in Texas (100 African American, 100 Hispanic or Latinx, and 100 non-Hispanic White). Participants will use the digital platform for about 4 weeks and evaluate its usefulness and ease of use through the Technology Acceptance Survey.
The study received funding from the National Institute on Aging on September 3, 2021. Ethical approval for phase I was obtained from the Texas A&M University Institutional Review Board on December 8, 2021, with data collection starting on January 1, 2022, and concluding on May 31, 2022. Phase I results were published on September 5, 2023, and April 17, 2024, respectively. On June 21, 2023, ethical approval for human subjects for phase II was granted, and participant recruitment began on July 1, 2023.
Upon completing these aims, we expect to deliver a widely accessible digital platform tailored to assist dementia caregivers with financial and legal challenges by connecting them to personalized, contextually relevant information and resources in Texas. If successful, we plan to work with caregiving organizations to scale and sustain the platform, addressing the needs of the growing population living with dementia.
INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/64127.
阿尔茨海默病（AD）和 AD 相关痴呆是老龄化人口普遍关注的问题。随着美国老年人口的增长，预计患有痴呆症的人数将会增加，这给非专业照护者带来了巨大的挑战。照护带来的身心负担突显了开发新的有效资源以支持照护者的重要性。然而，为满足他们的需求而设计的技术解决方案由于可用性问题和缺乏上下文相关性，往往采用率较低。本研究专注于开发一个提供财务和法律规划信息和教育的基于网络的平台，以满足痴呆症照护者的需求，并评估该平台的可用性和可接受性。
本项目的目标是创建一个基于网络的平台，为照护者提供个性化和易于访问的资源。该项目涉及工业、学术和社区合作伙伴，主要关注两个目标：（1）使用痴呆症照护个性化算法开发一个数字平台，并在一组试点照护者中评估其可行性；（2）评估数字平台在不同种族或族裔人群中的可接受性和可用性。这项工作将有助于开发基于技术的干预措施，以减轻照护者的负担。
第一阶段研究采用迭代的设计思维方法，至少有 25 名痴呆症照护者作为用户反馈小组，使用经过改编的移动应用程序评级量表，评估平台的功能、美学、信息和整体质量。第二阶段是在德克萨斯州的 300 名痴呆症照护者中进行的可用性研究（100 名非裔美国人、100 名西班牙裔或拉丁裔和 100 名非西班牙裔白人）。参与者将使用数字平台大约 4 周，并通过技术接受度调查评估其有用性和易用性。
该研究于 2021 年 9 月 3 日获得美国国立卫生研究院的资助。第一阶段的伦理批准于 2021 年 12 月 8 日获得德克萨斯 A&M 大学机构审查委员会的批准，数据收集于 2022 年 1 月 1 日开始，于 2022 年 5 月 31 日结束。第一阶段的结果分别于 2023 年 9 月 5 日和 2024 年 4 月 17 日发表。2023 年 6 月 21 日，第二阶段的人体研究伦理批准获得批准，参与者招募于 2023 年 7 月 1 日开始。
完成这些目标后，我们预计将提供一个广泛可访问的数字平台，通过将他们与德克萨斯州个性化、上下文相关的信息和资源联系起来，帮助痴呆症照护者应对财务和法律挑战。如果成功，我们计划与照护组织合作，扩大和维持该平台，以满足不断增长的痴呆症患者群体的需求。
国际注册报告标识符（IRRID）：DERR1-10.2196/64127。
