Neighbourhood nursing : connection, place and meaning in the everyday experience of dementia

Sammanfattning: Background: Recent policy is marked by a shift towards enabling people with dementia to remain at home and in their neighbourhoods, yet little is known about the wider perspective of neighbourhood as an everyday place of connection, practice and meaning in the lives of people with experience of dementia.  Aims: The aim of this thesis is twofold. The first aim is to explore the neighbourhood as an everyday place for people with experiences of dementia. The second aim is to explore neighbourhood as a place for practice.  Methods and Designs: Five studies are included in the thesis with both quantitative and qualitative designs. Study I had a cross-sectional exploratory and descriptive design. A total cohort of 17, 405 people with a dementia diagnosis were identified and matched with data about home care services and housing, and were then associated with socio-demographic factors in three county councils: Östergötland, Stockholm and Västerbotten. Study II had a phenomenological design; 14 community-dwelling people diagnosed with dementia in the County of Östergötland participated using walking interviews. Study III had an inductive and exploratory qualitative design including 14 community-dwelling people living alone with dementia in England, Scotland and Sweden involving multiple data collection methods. Study IV had an inductive and explorative qualitative design that included 22 people with the lived, personal and professional experiences of dementia and used semi-structured individual and group interviews. Study V had an inductive and explorative qualitative design where the perspectives of 18 participants (registered and specialist nurses) were included using shadowing as the main method for data collection.  Findings: In study I, 72% of the cohort was living in ordinary housing and 28% in special housing of the total of 17, 405 people with a dementia diagnosis. Overall, 52% of 17, 405 people with dementia in three county councils (Östergötland, Stockholm and Västerbotten) were living alone. Study II revealed that walking in the neighbourhood was an integral part of their day-to-day activities that helped them to manage life with dementia. Connection to nature by being outdoors was a restorative practice for people living with dementia. Neighbourhood was often described as a social context, although some participants living alone revealed that their social contacts were mainly staff working in municipal home care. In study III, participants across all three field sites channelled their efforts to stay connected to the neighbourhood into creating new ways of maintaining social networks and relationships. By participating in several activities (provided in the United Kingdom by the third-sector and charitable groups, and in Sweden, by the municipalities), bonds of friendship were created. However, the impact of stigma surrounding dementia was highlighted by the participants, which caused experiences of involuntary solitude or loneliness. Despite the impact of stigma, participants took control over their lives by searching for new daily social connections in the neighbourhood and were by no means passive in the face of the challenges in everyday life. In study IV, the participants discussed how dementia was stigmatized in the community. People  living with dementia were often not being respected as active citizens with their own resources in the community. Being socially active in a group or in public spaces were strategies to maintain a social role in the community. Participants with different experiences of dementia wanted the day care centres and teams to be more centrally involved in person-centred care and health-promoting improvements. Finally, in study V, participants struggled with the commonly held view of their role and their workplace within the health care system, interpreting it as being invisible, as if placed in a black box. The tasks and responsibilities of the participants were shifting to assistant nurses, neighbours and family members according to the socio-economic level of the municipality. Nonetheless, the participants were clearly part of the neighbourhood. The findings of this thesis have been integrated into a combined thematic analysis based on the five studies to reach an overall representation of people’s experiences of neighbourhood as an everyday place and a place for practice in the context of dementia. Five main themes (and three sub-themes) emerged from the analysis: (1) walkable attachment to the lived neighbourhood; (2) daily activities promote health and well-being; (3) opportunities for social connections; (4) just treat us as active citizens; (5) neighbourhood: a place for practice. The analysis suggested the neighbourhood was not only described as a walkable, social and citizenship arena in the context of dementia; it was also a place where practice was ongoing around the clock (studies II, III, IV and V) because most of the people with dementia are living in ordinary housing (study I).  Conclusion: The thesis presents a new foundation and knowledge to understand neighbourhood as a place for everyday life and practice by applying a new lens for understanding. The neighbourhood can be understood as a place linked by connections that people actively searched out, and where the meaning of place emerges via movement of the body through the world. It is also a site where practices support everyday life for people with dementia, especially for those living alone with dementia. This points to the need to re-think nursing practice, where “neighbourhood nursing” as a formal model with a lifeworld perspective has to be established in dialogue with citizens.