Background: The decision to stop driving and the experience of transitioning to non-driving is laden with ethical, safety, psychosocial and health implications, posing significant challenges for persons with dementia (PWD), family caregivers (FC) and healthcare providers (HCP). There are few interventions and major gaps in the knowledge, accessibility and utility of resources and tools available to support this group. Our objective was to develop an evidence-informed intervention framework and toolkit to support PWD and FCs in the driving cessation process while maintaining their social and emotional well-being.
Methods: Knowledge creation and synthesis activities used to inform the development of the framework included literature reviews and qualitative methods to explore the perspectives of PWD, FCs and healthcare/service providers. Tools and resources that address driving cessation were collected, reviewed and organized according to the framework elements. Feedback on the content and design of early toolkit versions were obtained from Alzheimer Society staff and an advisory committee comprised of PWD and FCs.
Results: We developed the Driving Cessation in Dementia Toolkit (DCDT). The DCDT is a web-based, curated collection of materials and resources with guided access to specific content and unique portals for each target audience (i.e. PWD, FCs and HCPs). It addresses the practical and emotion oriented aspects of driving cessation including information/awareness; communication; mobility/community access; relationships/role transitions; crisis/conflict; loss/grief; and identity/meaning.
Conclusion: By providing a user-friendly, comprehensive and accessible resource to support PWD, their FCs and HCPs during the driving cessation process, the DCDT can help PWD retain their mobility, social connectivity and quality of life.