Engaging patients with dementia, caregivers, and clinicians to study decisions about driving

Hansmann, Kellia J.; Madson, Alexis; Woods, Darona; Croyle, Mia; Phelps, Kat · 2025 · DOAJ

DOI: 10.1186/s40900-025-00820-1

archive: archived pipeline: cataloged verified

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Summary

This paper addresses the logistical and emotional complexities surrounding driving cessation for older adults with dementia, a transition that often occurs too late for patients to participate in shared decision-making. The authors aimed to recruit and sustain two advisory boards—one comprising community members and the other clinicians—to co-design a feasibility study for a clinical care pathway that supports earlier care planning discussions. The motivation stems from existing barriers to implementation, including clinician reluctance, lack of training, and racial and ethnic inequities that affect the dignity and safety of older adults transitioning to non-driving. The researchers partnered with the University of Wisconsin Community Academic Aging Research Network (CAARN) and the Wisconsin Network for Research Support (WINRS) to facilitate rigorous community engagement. They recruited a community advisory board of six Black older adults (five caregivers and one person with dementia) from the greater Milwaukee area and a clinical advisory board of six clinicians (including MDs, APPs, RNs, and allied health professionals) from across Wisconsin. Between April 2024 and February 2025, the teams held four meetings with each board. Community meetings were initially in-person to build rapport, while clinical meetings were virtual and scheduled early morning to accommodate clinical duties. The meetings focused on refining research priorities, recruitment strategies, meaningful outcomes, and dissemination plans. Data were collected via audio recordings, detailed notes, and process surveys, analyzed using a modified thematic approach to identify pragmatic themes. The advisory boards provided actionable insights that aligned with theoretical frameworks such as the transtheoretical and social ecological models. The community board identified barriers including fear of losing independence, lack of dementia-friendly transportation alternatives, and distrust of clinicians. They emphasized the need for recruitment strategies that foster trust, cultural congruence, and clear communication, suggesting the use of trusted intermediaries and community outreach events. The clinical board highlighted time constraints and caregiver unpreparedness as primary barriers. For outcomes, the community board prioritized qualitative measures regarding emotional readiness, concordance between patients and caregivers, and personal goal attainment, whereas the clinical board focused on feasibility metrics such as follow-up protocols and frequency of clinical contact. The study concludes that partnering with community and clinical representatives significantly refined the approach to supporting dementia patients during driving transitions. These insights enhance the applicability of future interventions to diverse primary care settings and help address health inequities. The authors note that this work represents the early stages of relationship-building, requiring ongoing effort to ensure co-design activities remain responsive to stakeholder needs rather than merely confirmatory. The findings underscore the value of community-engaged research in developing feasible, culturally tailored interventions for complex health transitions.

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• mci dementia driving