An eHealth platform to facilitate financial understanding and legal preparation for patients with dementia and their caregivers

一个电子医疗平台，旨在促进痴呆症患者及其护理人员的财务了解和法律准备

• 批准号: 10301346
• 负责人: David Farrell
• 金额: $ 30万
• 依托单位: PEOPLE DESIGNS, INC.
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-01 至 2022-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10301346
• 关键词: Address; Adult; Affect; Alzheimer' s Disease; American; California; Caregivers; Caring; Cause of Death; Communication; Communities; Dementia; Dementia caregivers; Diagnosis; Disease; Documentation; Education; Educational Background; Elderly; Face; Failure; Family; Friends; Health; Health Personnel; Health Professional; Health Services Accessibility; Healthcare Systems; Household; Impaired cognition; Income; Individual; Internet; Interview; Legal; Life; Long-Term Care; Nature; Occupational activity of managing finances; Online Systems; Pathway interactions; Patients; Phase; Physical Function; Population; Preparation; Production; Quality of life; Reporting; Resources; Respondent; Risk; Services; Surveys; Testing; United States; Work; age group; aged; caregiver education; cognitive function; cost; dementia care; design; digital; eHealth; financial exploitation; financial literacy; high school; literacy; member; programs; prototype; satisfaction; self diagnosis; socioeconomics; usability

PROJECT SUMMARY Alzheimer’s disease is estimated to affect 5.8 million Americans in 2020; projected to rise to nearly 14 million by 2050. In addition to its devastating effects on quality and quantity of life, the disease creates financial risks for patients across the socioeconomic spectrum. Difficulty managing finances is one of the earliest signs of dementia, and most people will fully lose the capacity to manage finances within a few years of developing the disease. Unpaid family, friends, and other non-professional caregivers provide the vast majority of the care to older adults in the United States, 48% of which is to older adults with dementia. Among caregivers, education levels and income are modest, as 60% of dementia caregivers have a high school education or less, and 41% percent have a household income of $50,000 or less. Most have limited legal and financial literacy, and, lacking understanding of the nature and resources available, do not seek help until after they discover serious mistakes, financial exploitation, or mismanagement. Digital solutions have the potential for wide reach, and can be accessible, highly usable, and effective at promoting planning and documentation with patients and caregivers. Internet access and usage in the US is becoming ubiquitous, an although older adults lag, their usage is increasing at a faster pace than most other age groups. Our prior work shows that digital programs can be designed to be usable and effective for these populations. We propose to build and test a web-based platform for educating patients and caregivers about financial risks, strategies they can undertake, and the specific legal preparations they can make; facilitating completion of legal documents in coordination with legal professionals; and enhancing communication about financial and legal issues with health professionals. We will develop, assess, and refine a set of comprehensive design documents with members of four primary stakeholder groups — patients, caregivers, legal professionals, and healthcare providers; build the platform; and conduct a test to assess usability and satsfaction among patients and caregivers who use the platform.

项目概要 据估计，到 2020 年，阿尔茨海默病将影响 580 万美国人；到 2050 年，这一数字预计将增加到近 1400 万。 除了对生活质量和数量造成破坏性影响外，这种疾病还给世界各地的患者带来财务风险 经济困难是痴呆症的最早迹象之一，大多数人都会出现这种情况。 在患病后的几年内完全丧失管理财务的能力 无薪的家人、朋友和其他人。 在美国，绝大多数护理工作由非专业护理人员提供，其中 48% 是为了照顾老年人 患有痴呆症的老年人中，60% 的痴呆症照顾者的教育水平和收入都较低。 受过高中或以下教育，41% 的家庭收入为 50,000 美元或以下。 法律和金融知识，并且缺乏对性质和可用资源的了解，直到事后才寻求帮助 他们发现数字解决方案可能会出现严重错误、经济剥削或管理不善。 可以达到，并且可以访问，高度可用，并且可以有效地促进患者和患者的计划和记录 在美国，护理人员的互联网接入和使用正在变得无处不在，尽管老年人的发展滞后，但他们的使用率却很高。 我们之前的研究表明，数字化项目的增长速度比大多数其他年龄段的人都要快。 我们建议建立和测试一个基于网络的平台来教育患者和患者。 照顾者了解财务风险、他们可以采取的策略以及他们可以做出的具体法律准备； 与法律专业人士协调，协助完成法律文件；并加强沟通； 我们将与卫生专业人员一起制定、评估和完善一套全面的设计。 与四个主要利益相关者群体（患者、护理人员、法律专业人员和医疗保健人员）成员的文件 提供者；建立平台；并进行测试以评估使用的患者和护理人员的可用性和满意度 平台。