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

While family and clinicians can help older drivers plan for the transition to non-driving, conversations about driving are logistically and emotionally complex. For people with dementia, delaying these conversations can mean they are no longer able to participate in their own decision-making. Our objective was to recruit and sustain two advisory boards of (1) community members and (2) clinicians to engage them in co-designing the approach for a feasibility study to investigate a clinical care pathway that supports earlier care planning discussions about driving for patients with dementia. We partnered with the University of Wisconsin Community Academic Aging Research Network (CAARN) to recruit two advisory boards. The community board included Black older adults living in the greater Milwaukee, WI who care for a person with dementia (n = 5) or have dementia (n = 1). The clinical board included clinicians (i.e., MDs, APPs, RNs) with expertise in dementia care across Wisconsin (n = 6). We facilitated four meetings with each board focused on key study activities (i.e., refining research priorities, recruiting participants, meaningful outcomes, sharing results). We presented summaries at subsequent meetings to facilitate convergence between boards. We engaged the advisory boards to refine our research priorities, recruitment strategy, meaningful outcomes and, ultimately, our plans to share our findings. The advisory boards’ framing of barriers to communication and care planning aligned with existing models (i.e., transtheoretical, social ecological), informing the focus and scope of our intervention co-design approach. Boards also identified key recruitment considerations related to fostering trust, cultural congruence, and resources for clinicians to engage in study recruitment. Partnering with community and clinical representatives to co-design a clinical care pathway has refined our approach to supporting people with dementia and their caregivers during transitions to non-driving. Insights gained from these advisory boards will increase the applicability of our findings to patients in diverse primary care practice settings. This work represents the early stages of developing relationships with advisory board members and will necessarily require ongoing effort to identify and respond to needs and priorities posed by advisory board members to ensure that our co-design activities are more than confirmatory steps. For people with dementia, losing the ability to drive can be one of the most difficult life changes—impacting independence, daily routines, and safety. Our goal for this developmental project was to begin building relationships with representatives from community and clinical settings who have experience with discussing driving and dementia. Our long-term objective is to engage community and clinical partners in co-designing meaningful and feasible interventions to support people navigating the transition to non-driving. We worked with existing community engagement groups at the University of Wisconsin to recruit two advisory boards—one with community members with dementia caregiving experience and one with clinical team members. We held four meetings with each advisory board to discuss our research priorities, recruitment plans, what outcomes will be most important to measure in our research, and how we can effectively share what we learn with the community. Working with these community and clinical representatives mattered in ways that were personally profound and useful for ongoing research. As the principal investigator for this research, this co-design process changed my perspective about what matters most for the potential impact of this work. The advisory board members shared that this process changed their perspectives on driving and dementia. The boards offered actionable feedback on improving communication and care planning about stopping driving and study recruitment strategies related to developing trust, cultural alignment, and relevant resources for clinicians.