Evolution of a community-based participatory approach in a rural and remote dementia care research program

Community-based participatory research (CBPR) approaches are valuable strategies for addressing complex health and social problems and powerful tools to support effective transformation of social and health policy to better meet the needs of diverse stakeholders.

Since 1997, our team has utilized CBPR approaches to improve health service delivery for persons with dementia and their caregivers in rural and remote settings. We describe the evolution of our approach, including benefits, challenges, and lessons learned over the last 15 years.

A multistage approach initiated an ongoing CBPR research program in rural dementia care and shaped its direction based on stakeholders' recommendation to prioritize both community and facility-based care. Strategies to develop and foster collaborative partnerships have included travel to rural and remote regions, province-wide community meetings, stakeholder workshops, creation of a Decision-Maker Advisory Council to provide ongoing direction to the overall program, development of diverse project-specific advisory groups, and a highly successful and much anticipated annual knowledge exchange and team-building event.

Partnering with stakeholders in the full research process has enhanced the research quality, relevance, application, and sustainability. These benefits have supported the team's evolution from a relatively traditional focus to an integrated approach guiding all aspects of our research.

Developing and sustaining the full range of stakeholder and decision-maker partnerships is resource-and time-intensive, but our experience shows that community-based participatory strategies are highly suited to health services research that is designed to support sustainable service delivery improvements.