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.

项目摘要 据估计，阿尔茨海默氏病在2020年影响580万美国人；预计到2050年将上升到近1400万。 除了对生命质量和数量的毁灭性影响外，该疾病还为患者带来财务风险 社会经济范围。管理财务困难是痴呆症的最早迹象之一，大多数人都会 在发展疾病的几年内，完全失去了管理财务状况的能力。无薪家人，朋友和其他 非专业护理人员将绝大多数护理提供给美国的老年人，其中48％是 老年人患有痴呆症。在护理人员中，教育水平和收入是适中的，因为有60％的痴呆症护理人员 接受高中教育或更少，而41％的家庭收入为50,000美元或更少。大多数有限 法律和财务素养，缺乏对可用性质和资源的了解，直到之后才寻求帮助 他们发现严重的错误，财务剥削或误导。数字解决方案有潜力 可以访问，并且可以访问，高度可用，并且有效地促进患者的计划和文档， 照顾者。美国的互联网访问和用法正在变得无处不在，尽管老年人滞后，但他们的用法是 比大多数其他年龄段的速度更快。我们先前的工作表明，数字程序可以设计为 这些人群可用且有效。我们建议建立和测试一个基于网络的平台，以教育患者和 照顾者对财务风险，可以承担的策略以及他们可以做出的具体法律准备； 与法律专业人员协调合法的法律文件促进；并增强有关的沟通 卫生专业人员的财务和法律问题。我们将开发，评估和完善一组全面的设计 与四个主要利益相关者群体成员的文件 - 患者，看护人，法律专业人员和医疗保健 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satfaction 平台。