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

项目总结 据估计，2020年阿尔茨海默氏症将影响580万美国人；预计到2050年将增加到近1400万人。 除了对生活质量和数量的破坏性影响外，这种疾病还会给全世界的患者带来经济风险。 社会经济光谱。理财困难是痴呆症最早的征兆之一，大多数人都会 在患上这种疾病后的几年内完全丧失管理财务的能力。没有报酬的家人、朋友和其他人 在美国，非专业的照顾者为老年人提供了绝大多数的护理，其中48%是 患有痴呆症的老年人。在照顾者中，教育水平和收入水平不高，因为60%的痴呆症照顾者 只有高中或更低的教育程度，41%的家庭收入在5万美元或更低。大多数都是有限的 法律和金融知识，缺乏对性质和可用资源的了解，在此之后才寻求帮助 他们发现严重的错误、金融剥削或管理不善。数字解决方案具有广泛的应用潜力 具有可访问性、高可用性，并能有效地促进与患者和 照顾者。在美国，互联网的接入和使用正变得无处不在，尽管老年人的使用滞后，但他们的使用 以比大多数其他年龄段更快的速度增长。我们之前的工作表明，数字节目可以被设计成 对这些人群来说是可用的和有效的。我们建议建立和测试一个基于网络的平台，以教育患者和 关于照顾者的财务风险，他们可以采取的战略，以及他们可以做的具体法律准备； 与法律专业人士协调，促进法律文件的完成；并加强关于 与卫生专业人员的财务和法律问题。我们将开发、评估和完善一套全面的设计 与四个主要利益相关群体的成员-患者、照顾者、法律专业人员和医疗保健人员-的文档 提供者；构建平台；并进行测试，以评估患者和使用 站台。

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.