What matters in development and sustainment of community dementia friendly initiatives and why? A realist multiple case study

Abstract

Background Dementia friendly communities (DFCs) are seen as key to participation of people with dementia and carers. Dementia-friendly initiatives (DFI) are important building blocks for the growth of DFCs. Therefore, it is essential to understand how DFIs are developed and sustained to secure the growth of DFCs. This study identifies contextual factors and mechanisms that influence the development and sustainment of Dutch DFIs. It also explains how these contextual factors and mechanisms are interrelated and the outcomes to which they lead. Methods Mixed methods, namely interviews, observations, documentation and focus groups, were used for this realist multiple case study. Participants were professionals (n = 46), volunteers (n = 20), people with dementia (n = 1) and carers (n = 2) who were involved in development and sustainment of DFIs in four Dutch DFCs. Results This study revealed three middle-range program theories as final outcomes: development of a support base, collaboration, and participation in DFIs by people with dementia and carers. These theories address institutional, organisational, interpersonal and individual levels in the community that are essential in development and sustainment of DFIs. Conclusions The development and sustainment of DFIs requires the development of a support base, collaboration, and participation in DFIs by people with dementia and their carers.

‘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 ).…”

“…This underlines the need for a culture change to support PPI for people with dementia and carers. The cultural and organizational change should especially move away from the legacy and structure of service-led working cultures towards more user-led organizations that develop routines which allow people with dementia and carers to be themselves, and where the relationship is a genuine partnership ( 13 , 18 , 20 , 22 , 60 – 62 ). Such focus could be enriched by theories from situated learning, (e.g., workplace learning (66) or social theories, such as social health, assets- based community development or social capital ( 31 , 63 ).…”

“…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 ). Furthermore, the input and expertise of people with dementia and carers seems to be overshadowed by professional hierarchy, -’hunches’ and -work routines ( 13 , 22 ).…”

“…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 ).…”

Realist Evaluation Comparison of Dementia-Friendly Communities in England and the Netherlands

“…Te aim of this study was to develop insights from a comparison of a best practice dementia-friendly initiative in England with a case series of multiple dementia-friendly initiatives in the Netherlands [17]. We selected realist evaluation as this method is appropriate for analysing programmes which are shaped and infuenced by many stakeholders in the process of implementation.…”