An App for Care Partners of Persons Living With Dementia (Aliviado Caregiving): Human-Centered Design Study

Vollständiger Abstract

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Background Behavioral and psychological symptoms of dementia (BPSD) are among the most challenging aspects of dementia care and contribute substantially to care partner burden. Family care partners, who provide most community-based dementia care, often lack access to evidence-based, nonpharmacological interventions for managing BPSD, particularly in underserved communities. Mobile health (mHealth) apps offer a promising avenue to expand care partners’ access to caregiving support. However, existing dementia caregiving apps frequently provide generalized information rather than personalized guidance based on care partners’ priorities. Objective This manuscript describes the iterative, human-centered design process used to develop and tailor the Aliviado Caregiving mHealth app, designed to support care partners of persons living with dementia in prioritizing and managing BPSD through evidence-based, nonpharmacological strategies. Methods Guided by an iterative review and revision framework and a coproduction innovation pathway, the development of the Aliviado Caregiving app occurred across 3 stages. Key participant groups were recruited across these stages, including an investigator team and clinician users (n=101) in stage 1, care partners of persons living with dementia (n=8) in stage 2, and a community advisory board (n=9) in stage 3. Quantitative data from stage 1 were analyzed using descriptive statistics to summarize clinician characteristics and identify top clinician-recommended features for care partners’ BPSD self-management. Qualitative data in stages 2 and 3 were analyzed through conventional content analysis. Results Clinician survey findings revealed that the top app features to support family care partners’ self-management of BPSD included “caregiver stress management strategies/intervention” (85/101, 84%), “dementia symptom management education and resources” (74/101, 73%), and “caregiver stress self-monitoring/tracking” (70/101, 69%). Two overarching qualitative categories were identified: (1) facilitators of care partner engagement and (2) desired features for a dementia caregiving app. Participants across stages emphasized individualized BPSD decision support, tailored terminology, and self-monitoring through reflective journaling to facilitate engagement. Participants also recommended future design enhancements, such as multilingual support, including Spanish-language functionality; support for multiple care recipients and care partners; and continuously updated educational resources to support diverse caregiving needs. Conclusions The Aliviado Caregiving app was developed through a rigorous, human-centered design process. Co-design with clinicians, care partners, community advisory board members, and a faith-based leader enhanced the relevance and usability of this mHealth app while supporting sustained engagement. Future research will evaluate the app’s acceptability and feasibility in reducing care partner burden and improving BPSD management in a pilot project.