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

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.