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: 10669873
• 负责人: David Farrell
• 金额: $ 82.93万
• 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 2024-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10669873
• 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; Persons; 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，到2020年，阿尔茨海默病将影响580万美国人;预计到2050年将增加到近1400万。 除了对生活质量和数量的破坏性影响外，这种疾病还为全球各地的患者带来经济风险。 社会经济的光谱。财务管理困难是痴呆症的最早迹象之一，大多数人会 在患上这种疾病的几年内完全丧失管理财务的能力。无报酬的家人、朋友和其他 在美国，非专业护理人员为老年人提供了绝大多数的护理，其中48%是 老年痴呆症患者在照顾者中，教育水平和收入适中，因为60%的痴呆症照顾者 有高中或更低的教育程度，41%的家庭收入为50，000美元或更少。 法律的和金融知识，而且，缺乏对性质和可用资源的了解，直到事后才寻求帮助 他们发现了严重的错误、财务剥削或管理不善。数字解决方案具有广泛的潜力 在促进患者计划和记录方面， 照顾者互联网接入和使用在美国变得无处不在，虽然老年人滞后，他们的使用是 增长速度比其他年龄组快。我们之前的工作表明，数字程序可以被设计成 对这些人群有用且有效。我们建议建立和测试一个基于网络的平台，用于教育患者， 护理人员了解财务风险，他们可以采取的策略，以及他们可以做的具体法律的准备; 与法律的专业人员协调，协助完成法律的文件; 财务和法律的问题。我们将制定、评估和完善一套全面的设计方案， 与四个主要利益相关者群体成员（患者、护理人员、法律的专业人员和医疗保健人员）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 该平台