“This book holds the story of a monumental research effort… It provides a moving, thoughtful, understanding of what “neighbourhood” means and is a beacon for efforts aimed at improving the quality of life of all involved.” Steven R. Sabat, Professor Emeritus of Psychology, Georgetown University, Washington D.C., USA “It is indicative reading for educators, researchers, clinicians and policy makers nationally and internationally. By grounding the underpinning research in the lived experience of people with dementia, the book’s appeal extends to voluntary and community groups. Reading it is a must!” Assumpta Ryan, Professor of Ageing and Health, Ulster University, UK “A remarkable contribution to the ‘Reconsidering Dementia’ series.” Bob Woods, Emeritus Professor, Bangor University, UK This book provides research based insights into the lived experience of dementia, aging in place and the use of participatory and creative social research approaches in the field of dementia studies. For the first time the key findings of one of the UKs largest funded social science research projects, the Neighbourhoods study, are assembled into one accessibly written blueprint for dementia care aiding better understanding of the place and position of those living with dementia in the home and neighbourhood context. Reconsidering Neighbourhoods and Living with Dementia highlights the importance of home for people living with dementia and that neighbourhoods are seen to be relational, virtual, technological, connected, lived, remembered, and imagined, and to exist within and across time. The book is organised under five key parts: •The Lived Neighbourhood •Neighbourhoods, Measurement and Technology •Neighbourhoods and Big Data •Personal Well-Being and Neighbourhood Programme Support •Bringing it Together and Future Directions This comprehensive book is appropriate to a wide range of readers and disciplines including those living with dementia, the related health and voluntary professions, family carers, practitioners, academics, and students undertaking a variety of courses aligned to gerontology, dementia studies and human geography. The Reconsidering Dementia Series is an interdisciplinary series published by Open University Press that covers contemporary issues to challenge and engage readers in thinking deeply about the topic. The dementia field has developed rapidly in its scope and practice over the past ten years and books in this series will unpack not only what this means for the student, academic and practitioner, but also for all those affected by dementia. Series Editors: Dr Keith Oliver and Professor Dawn Brooker MBE. John Keady is a mental health nurse who has been involved in dementia care for over 30 years. Since 2006, he has held a joint appointment between the University of Manchester and the Greater Manchester Mental Health NHS Foundation Trust. He was the Chief Investigator of the Neighbourhoods study.

Giving voice to the lived experiences of people with dementia across the globe, including Australia, Canada, Sweden and the UK, this critical and evidence-based collection engages with the realities of life for people living with dementia at home and within their neighbourhoods. This insightful text addresses the fundamental social aspects of environment, including place attachment, belonging and connectivity. The chapters reveal the potential and expose the challenges for practitioners and researchers as dementia care shifts to a neighbourhood setting. The unique ‘neighbourhood-centred’ perspective provides an innovative guide for policy and practice and calls for a new place-based culture of care and support in the neighbourhood.

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. Bakgrund: Den senaste samhällsutvecklingen och de politiska ambitionerna har utgått alltmer från att göra det möjligt för personer med demenssjukdom att bo kvar allt längre i sina hem och grannskap. Trots denna utveckling finns det lite kunskap utifrån det bredare perspektivet om grannskapet som en vardaglig plats för relationer, omvårdnad samt vilken mening det har för personer som har erfarenhet av demens. Syfte: Syftet med avhandlingen var för det första att undersöka grannskapet som en plats i vardagen för personer som har erfarenheter av demens, och för det andra, att undersöka grannskapet som en plats för omvårdnad. Design och metod: Avhandlingen inkluderar fem delstudier med både kvalitativ och kvantitativ design. Studie I hade en explorativ och beskrivande tvärsnittsdesign. Totalt ingick det 17 405 personer med en demensdiagnos som identifierades och samkördes med information av hemtjänstinsatser och boende. Denna informationen förenades sedan med de socio-demografiska faktorerna i de tre regionerna Östergötland, Stockholm och Västerbotten. Studie II hade en femenologisk design som inkluderade 14 personer som bodde i ett eget boende med en demensdiagnos i Östergötlands län och som deltog i ´promenad intervjuer´. Studie III hade en induktiv och beskrivande kvalitativ design vilket inkluderade 14 personer som bodde ensamma i ett eget boende med en demensdiagnos i England, Skottland och Sverige. De 14 personer som bodde i ett eget boende med en demensdiagnos i Studie III deltog i flera datainsamlingsmetoder. Studie IV hade en induktiv och beskrivande kvalitativ design som inkluderade 22 personer med levda, personliga och professionella erfarenheter av demens som deltog i semistrukturerade individuella och gruppintervjuer. Slutligen, Studie V hade också en induktiv och beskrivande kvalitativ design där 18 deltagare (legitimerade sjuksköterskor och specialistsjuksköterskor) inkluderades skuggning som är den huvudsakliga metoden för datainsamlingen. Resultat: I Studie I fann vi att 72 % av den totala befolkningen av 17 405 personer med en demensdiagnos bodde i ordinärt boende och 28 % i särskilt boende. Sammantaget bodde 52 % av de 17 405 personerna med demens i singelhushåll i de tre regionerna Östergötland, Stockholm och Västerbotten. Studie II påvisade att promenader i grannskapet var en betydelsefull del av deras dagliga aktiviteter som hjälpte personer med en demensdiagnos att hantera ett liv med demens. Att vara utomhus i naturen medförde att personer med demens knöt an till naturen och genom det återhämtade sig. Grannskapet beskrivs ofta som ett socialt sammanhang, även om vissa deltagare som bodde ensamma berättade att deras sociala kontakter främst var med personalen som arbetade i den kommunala hemsjukvården (och hemtjänsten). I studie III beskrev personer med demens i England, Skottland och Sverige hur de ansträngde sig för att hålla kvar kontakten med grannskapet men också hur de skapade nya sätt att upprätthålla och hitta nya sociala nätverk och kontakter. Dessa vänskapsband skapades genom att delta i olika aktiviteter (som tillhandahålls i England av tredje sektorn och välgörenhetsgrupper, och i Sverige, av kommunerna). Även effekterna av stigmatiseringen kring att leva med demens betonades av deltagarna, de beskrev detta som en orsak till ofrivillig ensamhet. Trots påverkan av stigmatiseringen tog personerna med demens, kontroll över sina liv, genom att finna nya dagliga sociala kontakter i grannskapet. Personer med demens är intressearde av att anta nya utmaningarna i vardagen. I studie IV diskuterade personerna med olika erfarenheter av demens hur demenssjukdomen som ett stigmatiserat tillstånd i samhället påverkade dem. De ansåg att deltagarna som lever med en demensdiagnos ofta inte respekterades som aktiva medborgare med sina egna resurser i samhället. Personerna med olika erfarenhet av demens framhöll också att vara socialt aktiv i en grupp eller i offentliga rum var strategier för att upprätthålla en social roll i samhället. Förutom betydelsen av det sociala livet påpekade personerna med olika erfarenheter av demens att de skulle önska att dagverksamheterna och demensteamen skulle utgå mer utifrån person-centrerad vård och hälsofrämjande förhållningssätt. Slutligen, i studie V observerades det hur legitimerade sjuksköterskor och specialistsjuksköterskor kämpade med den vanligt förekommande synen på deras profession och arbetsplatsen inom hälso-och sjukvården som gav sig uttryck som osynlig. Deras uppgifter och ansvar hade även förändrats och allt mer hade överlåtits till undersköterskor, grannar och familjemedlemmar och kommunernas socioekonomiska status hade betydelse. Legitimerade sjuksköterskor och specialistsjuksköterskorna var en självklar del av grannskapet. Resultaten av denna avhandling har integrerats i en sammansatt tematisk analys baserad på de fem studierna för att nå en övergripande representation av människors upplevelser av grannskapet som en plats för det dagliga livet och omvårdnad med utgångspunkt utifrån erfarenheter av demens. Analysen resulterade i fem huvudteman (och tre underteman): (1) anknytning till det existerade grannskapet via promenader (2) dagliga aktiviteter främjar hälsa och välbefinnande; (3) möjligheter för sociala kontakter; (4) behandla oss som aktiva medborgare; (5) grannskapet som en plats för omvårdnad. Grannskapet beskrivs inte bara som en framkomlig, social medborgarskapsarena i relation till demens, utan var även en plats där sjuksköterskepraxis pågick dygnet runt (studierna II, III, IV och V) eftersom de flesta personer som lever med demens bor i ordinärt boende (studie I). Konklusion: Avhandlingen presenterar ett nytt underlag och ny kunskap för att förstå grannskapet som en plats för dagligt liv och omvårdnad genom att använda ett nytt perspektiv för att få förståelse. Grannskapet kan förstås som en plats förenad genom förbindelser som människor aktivt söker efter och där betydelsen av grannskapet inträder genom kroppens rörelse ut mot världen. Det är också en plats där omvårdnad sker som i sin tur stödjer vardagslivet för personer med demens, särskilt för dem som lever ensamma med demens. Detta visar på behovet av att tänka om i praktiken vad det gäller omvårdnaden, där ”omvårdnad i grannskapet” som en modell med ett livsvärldsperspektiv behövs i dialog med medborgarna. Pozadina: Nedavni trend demencije ogleda se u ovome da osobe koje žive sa demencijom ostanu u kući ili u susjedstvu, ali još uvijek nije poznato mnogo u široj perspektivi koju nude ta susjedstva kao svakodnevno mjesto povezivanja, medicinske njege, te samog značaja u životu onih koji žive sa demencijom. Ciljevi: Cilj je istražiti susjedstvo kao svakodnevno mjesto boravka za ljude koji žive od demencije, te kao drugo istražiti susjedstva kao mjesta gdje bi se pružala medicinska njega. Metode i dizajni: Ukupno pet studija uključeno je u rad sa kvantitativnim i kvalitativnim dizajnom. Studija I imala je istraživački i opisni dizajn. Populacija od 17. 405 ljudi sa dijagnozom demencije bila je identifikovana, te usklađena sa podacima o kućnoj njezi i mjestu prebivališta, a zatim povezana sa tri općine: Östergötland, Štokholm i Vasterboten. Studija II imala je fenomenološki dizajn gdje je 14 osoba koje žive sa demencijom u porodičnoj kuci učestovalo u Östergötlandu u intervju pri šetnji. Studija III imala je induktivni i istraživački kvalitativni dizajn koji je uključivao 14 ljudi iz porodičnog domaćinstva koji žive sami sa demencijom u Engleskoj, Škotskoj i Švedskoj, uključujući više metoda prikupljanja podataka. Studija IV imala je induktivni i istraživački kvalitativni dizajn koji je obuhvatio 22 osobe koje žive, ili imaju lično i profesionalno iskustvo sa demencijom, gdje su se koristili pojedinačni i grupni intervju. Studija V imala je induktivni i istraživački kvalitativni dizajn gdje je uljućeno ukupno 18 medicinskih sestara, a kao glavna metoda za prikupljanje podataka korištena je metoda praćenja i posmatranja. Završni rezultati: U studiji I, 72% od 17. 405 ljudi koji su imali demenciju živjeli su porodičnim kućama a 28% u starački domovima. Ukupno 52% od 17. 405 ljudi koji žive sa demencijom u tri općine su Östergötland, Štokholm i Vasterboten žive sami. Studija II otkrila je kako svakodnevna šetanja je sastavni dio njihovih aktivnosti koje su im pomogle u životu sa demencijom. Može se reći da je boravak na otvorenom, te povezivanje sa prirodom je vrlo praktično za ljude koji žive sa demencijom. Susjedstvo je često opisano kao socijalni kontekst, iako su neki učesnici u istraživanju koji žive sami otkrili kako je njihov jedini društveni kontakt bio sa uposlenicima kućne njege. U studiji III učesnici ispitivanja u Engleskoj, Škotskoj i Švedskoj su sve svoje napore da ostanu povezani sa susjedstvom kako bi stvorili nove načine koji bi pomogli stvaranje novih veza i odnosa. Učestvovanjem u nekoliko aktivnosti (koje su u Velikoj Britaniji omogućile dobrotvorne i slobodne organizacije, a u Švedskoj općine) stvorene su veze i prijateljstva. Međutim, utjecaj predrasuda povezanih s demencijom, što su i naglašavali sudionici, vodilo je kao iskustvu samoće i usamljenosti. Uprkos utjecaju predrasuda, učesnici su preuzeli kontrolunad svojim životima, te su tražili nove svakodnevne društvene veze u susjedstvu, ne pokazujući tako pasivnost prema svakodnevnim izazovima s kojima se susreću. U studiji IV učesnici su razgovarali o predrasudama o demenciji u zajednici. Ljudi koji žive sa demencijom često nisu uvaženi kao aktivni članovi koji mogu doprinijeti zajednici. Kako bi održali svoje uloge u zajednici vrlo je bitno da ostanu društveno aktivni. Učesnici sa različitim iskustvom demencije izrazili su želju da se centri za svakodnevnu njegu i timovi više baziraju kao unapređenju njege i zdravlja, kao i da se akcenat stavi na osobu za demencijom. Na kraju, u studiji V medicinske sestre su se borile sa općeprihvaćenim stavom o njima i njihovoj ulozi, te njihovom radnom mjestu u sistemu zdravstvene zaštite, opisujući to kao nevidljivo. Zadaci i odgovornosti medicinskih sestara prebacivali su se na pomoćne sestre, komšije i članove porodica prema društveno-ekonomskom nivou opštine. Unatoč tome, medicinske sestre su očito bile dio susjedstva. Iskustva, odnosno pronalasci u ovoj tezi integrisani su u kombinovanu analizu prema pet tematski obrađenih studija, kako bi se dostigao sveobuhvatan prikaz iskustava u susjedstvu kao svakodnevnom mjestu, te mjestu zdravstvene podrške u kontekstu demencije. Iz ove analize pojavilo se pet glavnih tema (kao i tri podteme): (1) povezanost sa susjedstvom; (2) svakodnevne aktivnosti promovišu zdravlje i dobrobit; (3) mogućnosti za socijalne veze; (4) tretiranje kao aktivne građane; (5) susjedstvo je mjesto za medicinske prakse neprekidno traju. Analize pokazuju kako se susjedstvo ne opisuje samo kao prohodno, socijalno i građansko polje u kontekstu demencije, već kao i mjesto gdje medicinske prakse neprekidno traju (studije II, III, IV i V), jer većina ljudi s demencijom žive u običnom domaćinstvu (studija I). Zaključak: Teza predstavlja nove temelje i znanja, kako bi se lakše razumio pojam susjedstva kao svakodnevnog mjesta za život, kao i njege kroz nove objektive razumijevanja. Susjedstvo bi se moglo shvatiti kao mjesto spojeno vezama koje ljudi aktivno potražuju gdje se značenje mjesta spaja sa kretanjem tijela kroz svijet. To je također mjesto gdje je svakodnevno obezbjeđena njega za ljude koji žive sa demencijom, posebno za one koji žive sami. Ovo ukazuje na potrebu da se preispita medicinska praksa, gdje se ‘’njega u susjedstvima’’ kao formalni model sa životnom perspektivom treba uspostaviti u dijalogu sa građanima.

This book examines how institutional and environmental features in neighbourhoods can contribute to social resilience, highlighting the related socio-demographic issues, as well as the infrastructure, planning, design and policies issues. It is divided into three themes – infrastructure, planning, and community. Infrastructure examines how physical features such as parks and street patterns influence neighborliness and resilience, while planning studies how urban design enhances social interactions. Lastly, community discusses policies that can forge social bonds, either through racial integration, grassroots activities, or social service. Overall, the book combines research and empirical work with scholarly models of resilience and governance philosophy, focusing on Singapore’s urban planning and social policies.

Giving voice to the lived experiences of people with dementia across the globe, this text highlights the challenges presented as dementia care shifts to a community setting. Contributors address the social aspects of environment and, using a unique 'neighbourhood-centred’ perspective, provide an innovative guide for policy and practice.

The ebook edition of this title is Open Access and is freely available to read online. This book systematically explores and assesses the quality of the evidence base for effective and supportive design of living environments for people living with Dementia.

Moving away from studies of aging in place, this forward-looking Handbook focuses on aging and place, offering a broader scope and more nuanced, complex and enlightening understanding of these two intertwined universals of human experience. Not only examining the latest literature, the chapters also challenge current thinking on the many intersections, opportunities and issues around place and aging that need to be addressed through policy and practice.