'I can see what's going on without being nosey ': What matters to people living with dementia about home as revealed through visual home tours.

OBJECTIVES: This paper considers home from the perspective of people living with dementia supporting ongoing discourse around ageing in place and the significance of creating more inclusive communities. METHODS: Forty-six home tour interviews led by people living with dementia were conducted in England and Scotland to better understand the connectivity between home and neighbourhood for people living with dementia. These interviews used a range of participatory and creative approaches including video, photographic images and in situ interviews. Data were analysed via reflexive thematic analysis. RESULTS: Three themes were identified in data analysis. 1. Connected home and neighbourhood, where participants revealed the dynamic relationship between home and neighbourhood; 2. Practices of home, where participants discussed the everyday nature of their homes and routines; and 3. Displaying home and family, which reflected participant's biographical homes in the context of living with dementia. DISCUSSION: The findings show that home holds multiple meanings for people living with dementia. For example, home is understood as a part of the neighbourhood and an extension of the home space into gardens and backyards, thus extending existing discourses that solely focus on the inside of people's homes. For people living with dementia, homes are also sites of negotiation and renegotiation where new meanings are created to reflect the changing nature and context of the home. There is not one fixed solution to these issues. Support and understanding for people living with dementia will need to evolve to adapt to the shifting dynamics and multiple meanings of home.

Getting lost with dementia: Encounters with the time-space of not knowing.

In this paper we explore the experience and implications of getting lost with dementia. While getting lost has become culturally emblematic of dementia, speaking as it does to a widespread fear of losing our place in the world, it is marked by an overall absence of critical attention. We argue that this critical hesitancy is part of a broader unease with 'dementing' that reveals a paradox in dementia scholarship as growing emphasis on strengths-based and capacity-oriented approaches to the condition shift attention away from episodes of disorientation, forgetting and unknowing that commonly arise after onset. We therefore explore getting lost with dementia, not only as a route to better understanding what happens during such events and the meaning it holds but also to consider the implications for a broader politics of the social inclusion of people living with dementia. Reporting findings from a five-year international study of the neighbourhood experiences of people with dementia, we suggest that through such experiences as getting lost, people with dementia have a unique and distinctive contribution to make to the ever-evolving character of public space and civic culture. In particular, we argue that getting lost and the subsequent recovery or reconstitution that ensues can help inform efforts to reimagine public space. This includes looking beyond risk reduction in responses to dementia and public and outdoor settings to consider how freedom of movement for people with dementia might be enhanced rather than curtailed. Our learning points to the value of making the process of dementing more visible and central to the politics and practices of social inclusion.

Taking time: The temporal politics of dementia, care and support in the neighbourhood.

Dementia is a global health challenge and currently the focus of a coordinated international response articulated through the notion of 'dementia-friendly communities and initiatives' (DFCIs). Yet, while increasing research attention has been paid to the social and spatial dimensions to life with dementia in a neighbourhood setting, the temporalities of dementia have been largely overlooked. This article sets out different aspects of the lived experience of time for people with dementia and unpaid carers, before exploring the temporal politics of formal dementia care and support. The authors show that time is a site for material struggle and a marker of unequal relations of power. People with dementia and unpaid carers are disempowered through access to formal care, and this is illustrated in their loss of (temporal) autonomy and limited options for changing the conditions of the care received. The authors advocate for a time-space configured understanding of the relationship with neighbourhood and foreground a tempo-material understanding of dementia. Set against the backdrop of austerity policy in the UK, the findings reveal that ongoing budgetary restrictions have diminished the capacity for social care to mediate in questions of social justice and inequality, at times even compounding inequity.

Neighbourhoods as relational places for people living with dementia.

An increase in the number of people living independently with dementia across the developed world has focused attention on the relevance of neighbourhood spaces for enabling or facilitating good social health and wellbeing. Taking the lived experiences and daily realities of people living with dementia as a starting point, this paper contributes new understanding about the relevance of local places for supporting those living with the condition. The paper outlines findings from a study of the neighbourhood experiences, drawing on new data collected from a creative blend of qualitatively-driven mixed methods with people living in a diverse array of settings across three international settings. The paper details some of the implications of neighbourhoods as sites of social connection based on material from 67 people living with dementia and 62 nominated care-partners. It demonstrates how neighbourhoods are experienced as relational places and considers how people living with dementia contribute to the production of such places through engagement and interaction, and in ways that may be beneficial to social health. We contend that research has rarely focused on the subjective, experiential and 'everyday' social practices that contextualise neighbourhood life for people living with dementia. In doing so, the paper extends empirical and conceptual understanding of the relevance of neighbourhoods as relational sites of connection, interaction, and social engagement for people living with dementia.

The lived neighborhood: understanding how people with dementia engage with their local environment.

ABSTRACTBackground:In this paper, we report progress on "Neighborhoods: our people, our places" an international study about how people living with dementia interact with their neighborhoods. The ideas of social health and citizenship are drawn upon to contextualize the data and make a case for recognizing and understanding the strengths and agency of people with dementia. In particular, we address the lived experience of the environment as a route to better understanding the capabilities, capacities, and competencies of people living with dementia. In doing this, our aim is to demonstrate the contribution of social engagement and environmental support to social health. METHODS: The study aims to "map" local spaces and networks across three field sites (Manchester, Central Scotland and Linkoping, Sweden). It employs a mix of qualitative and participatory approaches that include mobile and visual methods intended to create knowledge that will inform the design and piloting of a neighborhood-based intervention. RESULTS: Our research shows that the neighborhood plays an active role in the lives of people with dementia, setting limits, and constraints but also offering significant opportunities, encompassing forms of help and support as yet rarely discussed in the field of dementia studies. The paper presents new and distinctive insights into the relationship between neighborhoods and everyday life for people with dementia that have important implications for the debate on social health and policy concerning dementia friendly communities. CONCLUSION: We end by reflecting on the messages for policy and practice that are beginning to emerge from this on-going study.

Healthy partnerships, healthy citizens? An international review of partnerships in health and social care and patient/user outcomes.

As a result of changes in the governance of health and social care organizations across developed welfare states they are under increasing pressure to work in partnership with each other (at an organizational and inter-professional level) and with the private and voluntary sector. Drawing on a comparative literature review of the theoretical and empirical evidence from health and social care partnerships across developed welfare states, this paper aims to examine the policy drivers behind such changes and the effects the changes have had on the governance of health and social care, the results for service commissioners and practitioners, and particularly the results for patients and service users. It examines some of the evidence that suggests that patient/user involvement and outcomes may at best be unaffected, and at worst be negatively compromised by shifts towards increasing partnership working in health and social care. It will conclude by discussing what lessons can be drawn about service re-organization and user involvement in welfare organizations generally, and how best to protect the interests of vulnerable and disenfranchised groups of service users.

Social services representation in Primary Care Groups and Trusts.

Against a rapidly changing policy backdrop, health providers and social services departments in England are attempting to develop partnerships in order to effectively provide services. Relations between health and social care organisations have long been recognised as being problematic, in terms of historically poor relationships between GPs and social services departments and the non-coterminous natures of many organisational boundaries. The development of Primary Care Groups and Trusts has provided an opportunity to try to overcome some of these problems. This paper draws on a national survey of a sample of Primary Care Groups/Trusts and associated in-depth case studies to describe the roles of the social services representatives on Primary Care Group Boards/Trust Executive Committees and discusses the extent to which closer collaboration in the development of services is occurring and its potential for development in the future. It highlights the importance of greater organisational stability and the need for time to form effective partnership arrangements in the future.

Primary health and social care services in the UK: progress towards partnership?

There has been a shift in the theoretical debates around the ways in which organisations deliver the state's objectives of providing health and social care services for its citizens, focusing on issues of welfare governance and the encouragement of partnership working between organisations. This article develops these theories by focusing on developments in primary health and social care policy in the UK, which have undergone a radical change recently. Responsibility for commissioning health care services now falls to primary care groups and trusts (PCG/Ts), run by general practitioners, other primary care practitioners, managers and lay members, and there is some pressure on primary care groups and primary care trusts to engage in partnership working with social services, for example, to cut hospital waiting lists or provide intermediate care services. One policy option is for these organisations to form Care Trusts, integrating the commissioning of health and social care for older people and ending the historical organisational divisions between health and social care in the UK. This paper examines evidence from the first stage of a 3-year longitudinal quantitative and qualitative study of the development of partnership working between PCG/Ts and social services departments in England. It examines whether the evidence suggests that the integration of health and social care is feasible or desirable in older people's services.

New kinds of care, new kinds of relationships: how purchasing services affects relationships in giving and receiving personal assistance.

This paper draws on interviews with users of direct payments and focus group discussions with the personal assistants (PAs) who assist them with personal and daily living activities. It discusses the benefits and the drawbacks of directly employing such assistance, from the perspectives of both the purchasers and the providers of these services. The paper shows that direct payments can enable disabled people to purchase a much wider range of flexible help, better continuity, greater control and an enhanced quality of life, compared with conventional services. PAs also valued the trust and close relationships they developed with their employers. However, these benefits were much less marked when direct payment users recruited and employed personal assistants through care agencies. On the other hand, both direct payment users and PAs also sometimes experienced difficulties in managing the relationships between them. Some of these problems could be alleviated by changes in the support provided by direct payment schemes themselves; other difficulties were more intractable and arose from the nature of the work and the close relationships which it entailed. The paper recommends a number of measures which could reduce the risks and vulnerability of both disabled direct payment users and personal assistants, without reducing the enhanced quality of life which direct payments can confer.

Changes in primary health care policy: the implications for joint commissioning with social services.

Both the primary health care team (PHCT) and social services departments in the UK have undergone substantial changes to their organization and function since 1990. This paper looks at developments in primary health care policy that have affected the relationships between them regarding the commissioning of health and social care services. It focuses on evidence from seven initiatives designed to involve members of the PHCT in commissioning social care services. It examines some of the benefits and challenges of working together to commission services for health authority managers, GPs, district nurses, care managers and social work team managers in the light of impending changes to the PHCT, particularly the abolition of fundholding and the introduction of Primary Care Groups.