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  • Author or Editor: Andrew Clark x
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  • To summarise key debates about authenticity and validity in social research and outline the challenges and opportunities that participatory ways of researching present to authenticity and validity

  • To contextualise these issues in the authors’ experiences conducting research with community researchers in two research projects: one about age discrimination, the other social interactions in urban public spaces

  • To discuss the impact of participatory approaches on the outcomes of the research, particularly in efforts to produce knowledge that can be claimed to be ‘valid’ and ‘authentic’

  • To reflect on the challenges involved in adequately representing the voices of the community researchers in research outputs

  • To consider implications for future collaborative research involving academic and community researchers

This chapter addresses some of the challenges of producing valid and authentic data, analysis and findings in participatory research projects involving teams of community researchers. The discussion is based upon our experiences working on two projects. One, Research on Age Discrimination (referred to as RoAD)1 was a two-year, UK-wide study that aimed to uncover evidence of age discrimination. Older people participated in a variety of ways including as diarists, panel respondents, members of discussion groups and as advisory group members. Twelve older people were also recruited and trained as paid fieldworkers and from their work several smaller, sub-projects emerged, some of which were developed and led by community researchers (Ward and Bytheway, 2008). The other, Social Interactions in Public Places (referred to as SIPP)2 was a year-long study in which 40 local people aged between 16 and 73 were recruited and trained to complete structured and ethnographic observations of social interactions in a range of public places in one British town.

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Practices, Experiences and Connections

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.

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Is there somewhere that dementia belongs? If we had asked this question 20 years ago doubtless the weight of responses would have emphasised institutionalised settings: hospitals, clinics and care homes. Such places would likely be secured, perhaps bounded by fences – places of containment and segregation (Steele et al, 2019), of care, but also control (Ward et al, 2008; Kelly and Innes, 2013). They may even be places where the occupants desired to be elsewhere, congregating at the doors or at the edges of the building (Chalfont, 2008), perhaps even making a bid to escape (Chatterji, 1998; Bartlett, 2007). It is far less likely those responses would have foregrounded outdoor or public spaces. Indeed, commentators writing at the turn of the new century were keen to highlight that public spaces were rarely considered appropriate for people with dementia (Blackman et al, 2003). On the whole, biomedically informed research on dementia considered independent movement beyond the home to be fraught with risk, often focusing on the prevalence and frequency of people with dementia becoming lost, but without considering what role the environment itself might have played in these situations (for example, McShane et al, 1998). Silverstein and colleagues (2002) captured the caring but paternalistic and risk-averse mood of the time: ‘If someone with dementia can walk, that person can wander and become lost. If someone with dementia is missing, that person is lost. And if someone with a dementia is lost, that person is at risk of harm’ (p 7).

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In the Introduction to this book, we proposed that dementia and place are co-constitutive, discursively and experientially, but to date this relationship has yet to be given full consideration. This is not to overlook an extensive tradition of research into dementia and the environment, but rather to suggest that an explicit focus on how dementia comes to shape understandings and experiences of place, and vice versa, remains underdeveloped in the field of dementia studies. The preceding chapters find common ground or, more accurately, share a common starting point, of seeking to understand experiences of dementia through the locational lens of the neighbourhood. Yet while most of the chapters start out from here, few end up at the same end point. In part, this may be because a neighbourhood is a somewhat slippery concept, implying simultaneously a scale of perspective as well as a lived phenomenon worth investigating. Indeed, what emerges overall is how neighbourhoods can offer a particular position from which to enhance our understanding of life with dementia and, in turn, of how living with dementia provides sometimes unique and valuable ways of knowing what neighbourhoods are about.

The chapters demonstrate the diversity of theoretical and conceptual thinking about how we might approach and understand place-based experiences for those living with dementia. They also inform and extend the conceptual and theoretical stock of dementia studies, drawing on ideas already in circulation, such as personhood and social citizenship (Chapter 10), and borrowing from other disciplines and perspectives, such as transactional perspectives and place integration (Chapter 4), relational space (Chapter 2), models of social health (Chapter 11) and performativity (Chapter 7).

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Housing has often been regarded as a ‘wobbly pillar’ of the welfare state due to its disjointed position between the public and private realms and the intractability of some problems to policy solutions. Indeed, we can ask whether a ‘housing sector’ exists at all, due to complex systems of governance, financialisation, policy divergence and overall fragmentation of housing-related social policy throughout the UK. However, the COVID-19 pandemic has highlighted the importance of housing policy, putting ‘the home’ and neighbourhoods into the spotlight. This chapter looks at some of the key emerging and re-emerging issues for housing policy in the UK through the lens of the COVID-19 pandemic. The chapter firstly outlines why housing was considered the ‘wobbly pillar’ going into 2019, including issues surrounding the financialisation of housing. Key COVID-19 housing-related policy responses are then examined in the context of emerging evidence that the pandemic is reinforcing inequalities in housing. The COVID-19 pandemic has exacerbated underlying housing issues faced by more vulnerable groups, yet it has also created an opportunity to showcase radical policy options and highlight the importance of future-proofing housing to be more flexible, dynamic and better quality.

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This chapter explores what neighbourhoods mean for people living with dementia. While the built environment, and the economic and political apparatus they comprise of such as shops, services and localised campaigning, are certainly important, our attention focuses on how people living with dementia understand neighbourhoods as sites of relationally constituted ordinary or everyday social connection, engagement and interaction. The chapter outlines the nature of associations individuals have with the wider social sphere of their immediate locale and considers how these ostensibly geographical proximate (or local) social connections might support people to live as well as they might with dementia. In doing so, it considers why it matters to understand the socio-spatial dimensions of neighbourhoods as relational and interconnected phenomena and considers the importance of thinking about neighbourhoods as more than environments in need of intervention or modification in order to support people living with dementia.

In a review published in 2012, Keady and colleagues noted that a surprisingly small amount of literature has focused specifically on the importance of neighbourhoods for people living with dementia. The review identified three domains of activity: outdoor spaces, the built environment, and everyday technologies. The first examines how the outdoor environment can be better designed and/or modified to support people living with dementia. This includes work on the design of streetscapes and road layouts to better support mobility, as well as ongoing work to enable easier access to a range of different environments such as green and recreational spaces.

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Neighbourhoods have been integral to the rapid changes occurring within dementia care in recent years, although have not always been acknowledged as such. Dementia, like aged and mental health care before it has been absorbed into a project of deinstitutionalisation occurring within healthcare systems across much of the affluent west (Anttonen and Karsio, 2016). In the UK, deinstitutionalising dementia has involved large-scale reductions to hospital beds available to people with dementia and reduced duration of stay (Alzheimer’s Society, 2009). In basic terms, it has meant the relocation of care and support from one type of material and social setting to another, and as such marks a changing geography of care. In many parts of Europe, this ‘re-placing’ of dementia care has not stalled at the shift to community-based support. The ongoing retrenchment of public services driven by a policy of fiscal consolidation (that is austerity) has led to widespread closures of traditional council-led day care services (Needham, 2014) alongside tightening of eligibility criteria for admission to care homes and for Continuing Health Care (RCN, 2012), resulting in significant reductions in collective forms of community-based provision. People with dementia are increasingly less likely to be clustered in designated care settings while segregated from the wider community. Instead, policy intentions have shifted to supporting people to age in place through a focus on Personalisation (DoH, 2019; Malbon et al, 2019; Manthorpe and Samsi, 2016).

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This chapter draws on qualitative research using participatory methods to explore the experience of people with dementia who live alone. Drawing on data gathered in Sweden and the UK, the chapter highlights the distinct challenges of living alone with dementia and explores the different ways that people remain connected to neighbourhood places. We argue that the invisibility of such experiences to dementia policy and strategies (which typically assume the presence of a cohabiting carer or household member to provide support) needs to be addressed if dementia-friendly initiatives are to be truly inclusive.

Demographic projections show that the number of people living in single households will continue to increase steadily in many western and northern European countries and that older women are the fastest-growing section of the single householder population (Sundström et al, 2016; United Nations, 2017). The ageing population living alone in Europe also includes an increasing proportion of people with dementia (Prescop et al, 1999; Gaymu and Springer, 2010; Prince et al, 2015). In Canada, France, Germany, the UK and Sweden, between one third and one half of the population of people with dementia residing in a neighbourhood context live in single households (Ebly et al, 1999; Nourhashemi et al, 2005; Alzheimer’s Society, 2013; Eichler et al, 2016; Odzakovic et al, 2019). Despite this increase in single householders with dementia, there is currently limited awareness of the particular challenges associated with living alone with dementia, even within emerging discourses and practices associated with dementia-friendly communities (Alzheimer’s Society, 2013; Age UK, 2018; Odzakovic et al, 2018).

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