Supporting the Community to Embrace Individuals with Dementia and to Be More Inclusive: Findings of a Conceptual Framework Development Study

Abstract

The number of community-dwelling people with dementia (PwD) is rising, and the role of their relatives is crucial in addressing and mitigating the implications of dementia on health care systems and on society. We developed a new conceptual framework to promote the collaboration of the community in supporting relatives who are caring for a PwD as well as a range of stakeholders in embracing dementia. A qualitatively driven, multi-method study divided into three phases was performed from 2019 to 2021. A qualitative descriptive study, a mixed-method systematic review and three consensus workshops were conducted, and their results were triangulated. The final version of the Community Collaboration Concept Framework is composed of three main domains based upon seven components: (1) embracing dementia; (2) creating empowerment and a sense of community; (3) collaborating through cocreation and design thinking. The new framework is based on the literature, the synthesis of empirical data and the consensus of a panel of international experts, supporting the global goal of improving community inclusiveness and collaboration. Further studies are needed to confirm its validity, how it should be implemented in practice in various settings and to propose improvements when designing projects based upon it.

Keywords: community collaboration; conceptual framework; dementia; family caregiver; people with dementia; policymaker.