A good life with dementia : collective action for positive change in the Capital Regional District, British Columbia

Abstract

Dementia is rapidly transforming from an individual health matter into a social issue of concern at the community or collective level. Dementia friendly communities may provide a vehicle to regional community development for people with dementia and carers with unexpected potential benefits for all citizens. Employing an action research engagement model, the inquiry engaged stakeholders of the dementia community to form a regional systems perspective on leverage points for collective action around dementia issues, grounded by the perspectives of people living with dementia. The methodological framework included focus groups with people with dementia and carers as a participant dyad, a world café with service providers and planners, and interviews with formal leaders, followed by thematic analysis. The study concluded that people with dementia and carers living in community settings in the CRD experience disabling factors in their internal and external environments that threaten their independence and quality of life. This is likely due to a lack of collaboration, coordination and innovation at organizational and systems levels. At the same time, resources to support positive change exist within the CRD, including an appetite for culturally influenced change around dementia issues, and willingness among key stakeholders to collaborate to build a new paradigm.