Collaboration for Developing and Sustaining Community Dementia-Friendly Initiatives: A Realist Evaluation

Abstract

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.

‘Practice what you preach’. Perspectives on the involvement of people with dementia and carers in community-based dementia friendly initiatives, a qualitative study

“…It required adaptations which are perceived as too drastic because, for instance, additional meetings are necessary or the project’s pace needs to be adjusted. These barriers were also found in our previous studies within the Mentality Project (see below) ( 13 , 22 , 23 ).…”

“…Therefore, the development and sustainment of a DFI relies on stakeholder involvement such as local policy officers, healthcare and welfare professionals, volunteers and citizens from the local community ( 8 , 13 – 15 ) The input of people with dementia and their carers therein is vital to ensure that a DFI meets their needs; they have local knowledge, can identify barriers and opportunities and bring expertise through experience ( 3 , 8 , 16 , 17 ). However, the input of people with dementia and their carers themselves is often limited ( 13 – 15 , 18 – 22 ) due to multiple reasons. First, diminished attention from professionals, policymakers, and researchers, lack of enthusiasm among people with dementia and citizens, and debates about the added values compared to the effort needed, decrease motivation for their input ( 13 , 14 , 18 , 21 ).…”

“…First, diminished attention from professionals, policymakers, and researchers, lack of enthusiasm among people with dementia and citizens, and debates about the added values compared to the effort needed, decrease motivation for their input ( 13 , 14 , 18 , 21 ). Furthermore, the input and expertise of people with dementia and carers seems to be overshadowed by professional hierarchy, -’hunches’ and -work routines ( 13 , 22 ). Finally, the input of people with dementia is not easily incorporated and organized into projects’ planning ( 15 , 18 – 20 ).…”

“…However, this model has been critiqued for its lack of context sensitivity, such as its application in collective processes among all stakeholders ( 29 , 30 ). Recent research have shown that PPI in dementia involves co-production, learning, and power sharing ( 22 , 27 ) and needs to be context-sensitive to build relationships ( 18 , 31 ). The importance of attitudes, feelings, and emotions is highlighted, as PPI requires the careful and inclusive development of relationships where everyone’s contributions are respected and valued ( 24 , 27 ).…”

“…The issue with previous research is that it focused on PPI in dementia research ( 32 – 36 ) and on the implementation of, and barriers to, PPI in DFCs ( 18 – 22 ). Until now, little attention has been paid to studying the underlying perspectives of stakeholders on the involvement of people with dementia and their carers during the development and sustainment of DFIs (e.g.…”