LEADing Advance care conversations: Development of an intervention platform

Abstract

AbstractBackgroundThe LEAD Guide ( Life‐Planning in Early Alzheimer’s Disease; Dassel et al., 2019) addresses changes in cognition and goals of care along the Alzheimer’s disease and related dementias (ADRD) continuum and anticipates the need for surrogate decision‐makers upon loss of the care recipient’s decisional abilities.MethodWe developed a preliminary interactive version of the LEAD Guide, which serves as the foundation of a self‐administered intervention designed to promote and guide community‐based ADRD dyads through a dementia‐focused ACP process. The intervention model includes the LEAD Guide, along with education/information about ACP in the context of ADRD, and interactive instructions. We developed the LEAD Intervention using an iterative design process, which relied on feedback from a 11‐member community advisory board comprised of a clinical dementia specialist, the Director and Program Manager from the State Chapter of the Alzheimer’s Association, and community‐based ADRD dyads. We used Qualtrics, a web‐based survey platform, to simulate the basic functionality and flow of the interactive web‐delivered intervention we envisioned. We then conducted extensive beta‐testing with our community advisory board through written surveys and focus groups.ResultIn general, users were enthusiastic about the LEAD Intervention and appreciated the opportunity to engage in meaningful guided ACP with their family member. Recommended revisions fell into two categories: technological (adding a progress bar, reducing the number of items per page, adding back arrows, reducing text and using more graphics/figures, closed‐captioning, video‐facilitated instructions) and personalization (using piped text that integrates participants’ names into survey items to increase a personal feel, and creating downloadable copies of participants’ LEAD Guide responses).ConclusionThe process of creating a feasible, acceptable, and efficacious intervention requires input from ADRD experts as well as community‐based caregivers and persons with mild ADRD. The iterative process that our research team engaged in with our community advisory board members provided invaluable information on how to create and revise a web‐based ACP intervention platform for community‐based ADRD dyads. We are currently enrolling 60 ADRD dyads in the revised web‐based intervention, with the goal of exploring the impact on relationship quality, decision‐making self‐efficacy, and ACP congruence within participant dyads.