This article reports findings from a three-year project on ‘Communication patterns and their consequences for effective care’ that explored communication in dementia-care settings. As the proportion of people with dementia living in British care-homes continues to grow, there is a need to understand better their care. Using a range of qualitative methods, the project set out to identify the constituent elements of dementia-care practice and the patterns that characterise day-to-day relations in care homes. The tightly prescribed and standardised nature of the interactions between staff and residents is described: it raises questions about the capacity for dementia care to be truly person-centred. The project found that people with dementia are both capable of communication, and invest much effort in seeking to engage those around them, but are excluded from the monitoring, planning and provision of care in ways that we argue are discriminatory. The case is made for promoting and supporting communication as key skills and competencies for care workers. The value of measuring the level and quality of communication as a means to evaluate care is demonstrated. The authors question the priorities that currently guide care practice and argue that we need to listen to people with dementia and rethink what lies at the heart of dementia care.

BackgroundThis paper synthesises research evidence about the effectiveness of services intended to support and sustain people with dementia to live at home, including supporting carers. The review was commissioned to support an inspection regime and identifies the current state of scientific knowledge regarding appropriate and effective services in relation to a set of key outcomes derived from Scottish policy, inspection practice and standards. However, emphases on care at home and reduction in the use of institutional long term care are common to many international policy contexts and welfare regimes.MethodsSystematic searches of relevant electronic bibliographic databases crossing medical, psychological and social scientific literatures (CINAHL, IngentaConnect, Medline, ProQuest, PsychINFO and Web of Science) in November 2012 were followed by structured review and full-text evaluation processes, the latter using methodology-appropriate quality assessment criteria drawing on established protocols.ResultsOf 131 publications evaluated, 56 were assessed to be of ‘high’ quality, 62 of ‘medium’ quality and 13 of ‘low’ quality. Evaluations identified weaknesses in many published accounts of research, including lack of methodological detail and failure to evidence conclusions. Thematic analysis revealed multiple gaps in the evidence base, including in relation to take-up and use of self-directed support by people with dementia, use of rapid response teams and other multidisciplinary approaches, use of technology to support community-dwelling people with dementia, and support for people without access to unpaid or informal support.ConclusionsIn many areas, policy and practice developments are proceeding on a limited evidence base. Key issues affecting substantial numbers of existing studies include: poorly designed and overly narrowly focused studies; variability and uncertainty in outcome measurement; lack of focus on the perspectives of people with dementia and supporters; and failure to understanding the complexities of living with dementia, and of the kinds of multifactorial interventions needed to provide holistic and effective support. Weaknesses in the evidence base present challenges both to practitioners looking for guidance on how best to design and deliver evidence-based services to support people living with dementia in the community and their carers and to those charged with the inspection of services.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-015-0053-9) contains supplementary material, which is available to authorized users.

Little is known about the experiences of people with dementia, as there has been relatively little research carried out that includes their perspectives. In the past, user perspectives on experiences of dementia and on services have mostly been solicited from family carers, rather than from people with dementia themselves. It has been suggested that these studies may lack information and insight into the experiences of people with dementia. This study aimed at eliciting the views and feelings of people in all stages of dementia, as well as those of their relatives, on care services and on experiences of dementia. Twenty-seven people with dementia from residential and day care settings were interviewed and their daily lives videotaped. Interviews were also conducted with next of kin. This article reports on findings and issues arising from the study.

Background: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.

This study aimed to explore the lived experience of assuming the primary caregiver role in a group of spouses of individuals living with a traumatic spinal cord injury (injuries ranged from paraplegia to quadriplegia). Individual in-depth interviews were conducted with eleven participants who were both the spouse and primary caregiver of an individual with a spinal cord injury; of these, ten were female and one was male.All interviews were transcribed verbatim and were subjected to Interpretative Phenomenological Analysis (IPA). Here we present three inter-related master themes: "The emotional impact of spinal cord injury"; "Post-injury shift in relationship dynamics"; and "Impact of caregiving on identity". Regarding the emotional impact of spinal injury, participants reported an almost instantaneous sense of loss, emptiness and grief during the injured person's rehabilitative period and feelings of anxiety were reported in anticipation of their return to the family home. A distinct change in role from spouse and lover to care provider was reported and this ultimately contributed to relationship change and a loss of former identity. The findings are discussed in relation to extant caregiver literature and recommendations for future caregiver support are highlighted.

This study explores the relationships between people living with dementia and their neighbourhood as they venture out from home on a regular and often routine basis. Here, we report findings from the Swedish fieldsite of an international 5-year project: Neighbourhoods: our people, our places. The aims of this study were to investigate the lived experience of the neighbourhood for people with dementia and through this to better understand the meaning that neighbourhood held for the participants. In this study, we focus on the walking interviews which were conducted with 14 community-dwelling people with dementia (11 men and 3 women) and were analysed using an interpretative phenomenological method. Four themes were revealed from these interviews: life narratives embedded within neighbourhood; the support of selfhood and wellbeing through movement; the neighbourhood as an immediate social context; and restorative connections to nature. These themes were distilled into the 'essence' of what neighbourhood meant for the people we interviewed: A walkable area of subjective significance and social opportunity in which to move freely and feel rejuvenated. We have found that the neighbourhood for community-dwelling people with dementia holds a sense of attachment and offers the potential for freedom of movement. Our research indicates that a dementia diagnosis doesn't necessarily reduce this freedom of movement. The implications for practice and policy are considered: future research should explore and pay closer attention to the diverse living conditions of people living with dementia, and not least the particular challenges faced by people living alone with dementia.

SummaryThe National Dementia Strategy in England has performed an essential role in transforming health and social care services and improving the commissioning architecture. However, to date, little attention has been paid to understanding the ways in which the outdoor and built environment impacts and intersects with the lives of people with dementia and their carers. One way of better understanding the outdoor and built environment is through a focus on the ‘neighbourhood’ as this is an area of public policy where attempts are being made across disciplines to unpack its meanings, significance and identity. This paper adopts a realist review method to detail the key findings and messages from the body of work that links the experience of living with dementia to the neighbourhood. Our findings from this review are assimilated and defined/presented under three headings, namely: outdoor spaces, built environment, and everyday technologies. These headings and our definitions are not discrete properties and there is some overlap in content. We found no research that sets out to enquire about how people with dementia might define their neighbourhood or that explores everyday neighbourhood practices for those living with the condition. Emerging concepts such as citizenship and, in the UK, the Coalition Government advancement of the ‘Big Society’, promote a vision of civic responsibilities and networked, dementia-capable communities, but evaluation of such initiatives are virtually absent from the literature. The review did uncover some interesting and innovative research methods that extend neighbourhood working, such as the ‘walking interview’. In order to develop a neighbourhood model for dementia, future research should examine the relationship and interaction between the neighbourhood as a social space and as a physical space alongside the active role of people with dementia as ‘place-makers’.

Individual semi-structured interviews were conducted with 17 individuals who had experienced a traumatic spinal cord injury (SCI), focusing on the participants' lived experience of SCI. The interviews were transcribed verbatim and were analysed for recurrent themes using interpretative phenomenological analysis (IPA). Here, we present three inter-related recurrent themes all concerning difficulties in adjusting to home life following hospital discharge: "loss of camaraderie", "lack of post-discharge care" and "other people's reactions to spinal cord injury". Participants reported that the camaraderie they formed with fellow patients during their rehabilitative stay in hospital generated feelings of security and community. This was discussed in stark contrast to the isolation and loneliness that they subsequently experienced post-hospital discharge. A perceived lack of physical, practical and psychological support coupled with negative and stigmatising reactions of the wider community served to make adjustment to home life post-SCI particularly difficult for the participants. The findings are discussed in relation to extant SCI literature, and recommendations for future health care of individuals with SCI are made.