Introduction: Worldwide, many countries have introduced the concept of the dementia-friendly community (DFC) as an approach to support people with dementia to continue living a meaningful everyday life at home in their neigh-borhood. In Denmark, projections show that the number of people with demen-tia will increase from today’s approximately 96,000 people to over 134,000 people in 2035. Denmark has, therefore, joined the DFC policy agenda and aims to become a dementia-friendly country where people with dementia and their informal carers can live a meaningful life in the community. Despite the past decades’ political focus on turning the neighborhood into a site of care for people with dementia, little is known about how home-dwelling people with dementia in Denmark relate to and manage the onset and progression of de-mentia within their environment. This dissertation is a Danish contribution to the current discussion concerning the DFC agenda and how people with dementia experience and perceive city and neighborhood environments.
Objective: This article-based dissertation aims to explore how Danish home-dwelling people with early to moderate dementia experience and manage the onset of dementia in the cityscape of Copenhagen and how these empirical findings can be related to current discussions concerning dementia-friendly communities.
1. Paper 1: A scoping review that aimed to map how the concept of a DFC is defined, how different interpretations of the DFC concept affect DFC prac-tices, and what gaps future research on DFCs should address.
2. Paper 2: A qualitative study that aimed to explore how people with demen-tia experience the cityscape in relation to the onset and progression of their dementia.
3. Paper 3: A qualitative study exploring how a relational citizenship perspec-tive analyzes what social spaces home-dwelling people with dementia cre-ate and articulate and how these are kept together and/or dissolved.
Methodology: The study used a mix of qualitative research methods. Based on Arksey and O’Malley’s (2005) scoping review framework, the first paper aimed to map the current working definitions of the term “DFC.” A qualitative thematic analysis was done to explore the DFC concept. The second and third papers were based on ethnographic fieldwork conducted from January 2023 to July 2023. The fieldwork consisted of participant observation at two different munici-pal services for people with dementia, as well as the involvement of 12 home-dwelling people living with early- to middle-stage dementia. Through a blend of different ethnographic data collection techniques, including participant observa-tion, semi-structured interviews, walking interviews, and photovoice, the study explores how the cityscape of Copenhagen affects the everyday life of home-dwelling people with dementia. The qualitative data analyzed in this study con-sisted of field notes, audio recordings, transcribed interviews, and photos. Both Paper 2 and Paper 3’s findings are based on thematic analyses that aimed to identify and explain patterns found in the data.
Results: The first paper identified 64 eligible articles. A common theme found across DFC conceptualizations was the focus on increasing the quality of life for community-dwelling people with dementia and their informal caregivers. The lack of involvement of people with dementia in DFC interventions was identified as a research gap through the scoping review. By introducing the concept of the cityscape, Paper 2 demonstrates the many ways in which home-dwelling people living with dementia engage actively with the cityscape. The paper proposes that getting out and about was not just a form of exercise for the participants. Instead, the paper suggests that practical engagement with the environment is a practical way of “being in the world.” Paper 3 explores how people with de-mentia enact relational citizenship through everyday practical engagements with the cityscape, experiencing being-in-place. However, a gradual shift or loss of the social spaces to which they once belonged leads to experiences of being-out-of-place. These changes can be viewed as being linked to a limitation of the social spaces people with dementia can enact relational citizenship within and experiences of being-in-place.
Conclusion: The DFC concept has been influential in focusing attention on dementia worldwide. Despite good intentions, the DFC concept can sometimes act as a boundary object due to varying interpretations of its definition, purpose, and implementation, and this elasticity highlights the concept’s ambiguity. Moreover, the DFC concept often adopts a modernist and cartographic view of place, where a location is seen as a bounded container for implementing social action to achieve predictable outcomes, leading to a gap between the abstract concept of DFCs and the everyday lives of those living with dementia. By focus-ing on the voices of people with dementia in defining what challenges people with dementia face in the community, the study demonstrates the many ways that people use the city environment as a resource in self-care practices. The cityscape is thus not experienced as a hostile environment. Instead, the study suggests that the participants’ engagement with the city environment is a practi-cal way of “being in the world.” This engagement is particularly crucial as the deteriorating symptoms of dementia hold a future with an unknown type of ex-istence. Through everyday practical engagements with the cityscape, people with dementia emplace themselves in the cityscape and enact relational citizen-ship. People with dementia experience a gradual change or loss of social spac-es of belonging that they used to be a part of. The dissolution of these social spaces leads to experiences of going from being-in-place to being-out-of-place, demonstrating the fragility of being-in-place that people with dementia experi-ence. With the current deinstitutionalization policy focus, neighborhoods will play a central role in the care of people with dementia in the future. This disser-tation, therefore, calls for a more nuanced understanding of dementia and the lived experiences of those affected by it and suggests that instead of creating DFCs, the focus could shift to supporting and creating social spaces where people with dementia can enact relational citizenship and experience being-in-place.