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.