Background: Dementia-friendly communities (DFCs) are seen as key to the inclusion and participation of people with dementia and carers. Dementia-friendly initiatives (DFIs) are important building blocks for the growth of DFCs. The collaboration between different stakeholders is a central aspect in developing and sustaining DFIs.
Aim: This study tests and refines an initial theory about collaborating for DFIs with special attention for the involvement of people with dementia and their carers during the collaboration for DFIs. The realist approach is used for deepening contextual aspects, mechanisms, outcomes, and its explanatory power.
Methods: A participatory case study design using qualitative data (focus groups, observations, reflections, minutes from meetings, and exit interviews) was executed in four Dutch municipalities that have ambitions to become dementia- friendly communities.
Results: The refined theory on the collaboration for DFIs incorporates contextual aspects such as diversity, shared insights, and clarity. It draws attention to the importance of mechanisms such as the recognition of efforts and progress, informal distributed leadership, interdependency, belonging, significance, and commitment. These mechanisms resonate with feeling useful and feeling collectively powerful in the collaboration. The outcomes of collaboration were activation, getting new ideas, and fun. Our findings address how stakeholders' routines and perspectives impact the involvement of people with dementia and their carers during collaboration.
Conclusion: This study provides detailed information about collaboration for DFIs. The collaboration for DFIs is largely influenced by feeling useful and collectively powerful. Further research is needed to understand how these mechanisms can be triggered with the involvement of people with dementia and their carers in the heart of the collaboration.
Keywords: collaboration; dementia-friendly; inclusion; inequity; patient and public involvement; realist evaluation; social participation.