Co-Design of a Financial and Legal Planning Tool for Care Partners of People Living With Alzheimer’s Disease and Related Dementias

Abstract

Abstract Background and Objectives Care partners of people living with Alzheimer’s disease and related dementias (ADRD) are faced with substantial legal and financial planning related to their care partner role. However, many care partners lack the legal and financial support needed to manage this role. The purpose of this study was to engage ADRD care partners in a remote participatory design process to create a technology-based financial and legal planning tool that meets care partner needs. Research Design and Methods We formed 2 researcher-facilitated co-design teams comprised of n = 5 ADRD care partners each. We conducted a series of 5 parallel co-design sessions aimed to engage co-designers in interactive discussions and design activities to create the financial and legal planning tool. We used inductive thematic analysis of design session recordings to identify design requirements. Results Co-designers were 70% female with a mean age of 67.3 years (standard deviation 9.07) and cared for a spouse (80%) or a parent (20%). Between Sessions 3 and 5, the average system usability scale score of the prototype increased from 89.5 to 93.6, indicating high usability. Analyses yielded 7 overarching design requirements for a legal and financial planning tool: support for action now (eg, prioritized to-do lists); support for action later (eg, reminders for keeping legal documents up-to-date); knowledge when I need it (eg, tailored learning modules); connection to resources I need (eg, state-specific financial support opportunities); everything where I can see it (eg, comprehensive care budgeting tool); sense of privacy and security (eg, password protection); and accessibility for all (eg, tailoring for low-income care partners). Discussion and Implications The design requirements identified by co-designers provide a foundation from which we can build technology-based solutions to support ADRD care partners in financial and legal planning.