This paper discusses whether current UK social policy promotes the human rights of people with dementia living in England. The author focuses on the role of recent legal reforms and key developments in social care policy--notably the Mental Capacity Act 2005 and the 2009 National Dementia Strategy--in facilitating their human rights to liberty and self-determination, particularly a right to choose to live at home. The extent to which the National Dementia Strategy provides access to services and support which provide an alternative to institutional care is critiqued. Whilst recent legislative change has endorsed the rights of people with dementia to liberty and self-determination, it is suggested there is a lack of commitment in government policy more generally to providing access to social care to enable people with dementia to exercise these human rights.

This paper examines key challenges and strategies for including older people with dementia in an ethnographic study of quality of life in institutional care settings. The methods of interview and observation are described in relation to meeting four research challenges: verbal communication impairment, memory loss, decision-making capacity, and emotional disposition. A range of strategies for privileging the voice of the person with dementia is recommended which include: using different methods bespoke to each person with dementia; greater flexibility and time; preliminary meetings with the person with dementia; discussions with formal and informal carers; and research training. The researchers also conclude that the use of observation and interview are 'meaning-making occasions' which are qualitatively different but equally valuable for understanding quality of life in care settings.

Person-centered care (PCC) has been the subject of several intervention studies, reporting positive effects on people with dementia. However, its impact on staff’s outcomes remains unclear. The purpose of this systematic review was to assess the impact of PCC approaches on stress, burnout and job satisfaction of staff caring for people with dementia in care homes. The databases PubMed, Web of Knowledge, Scopus and EBSCO and reference lists from relevant publications, were searched between December 2012 and March 2013. The review was limited to experimental and quasi-experimental studies, published in English and involving direct care workers (DCWs). Seven studies were included, addressing different PCC approaches: dementia care mapping (n=1); stimulation-oriented approaches (n=2); emotion-oriented approaches (n=2) and behavioral-oriented approaches (n=2). Five studies reported benefits on DCWs, suggesting a tendency towards the effectiveness of PCC on staff. However, methodological weaknesses and heterogeneity among studies make it difficult to draw firm conclusions.

Objectives: The quality of the relationship between people with dementia and their informal caregiver maybe an important determinant of life satisfaction and well-being for both members of the dyad. Taking a dyadic perspective, the aim of this study was to examine whether self- and partner- rated relationship quality influences life satisfaction and well-being for both people with dementia and their caregivers. Design and methods: Using data from 1283 dyads in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) cohort, we examined the impact of current relationship quality on life satisfaction and well-being in dementia caregiving dyads. Data were analysed using the Actor–Partner Interdependence Model (APIM) framework. Results: Self-rated relationship quality was associated with own life satisfaction and well-being for both people with dementia and caregivers. Partner-rated relationship quality did not influence own life satisfaction or well-being for either member of the dyad. Conclusion: This study is the first to use the APIM framework to explore the dyadic associations between relationship quality and life satisfaction and well-being in a large cohort of dementia caregiving dyads. The obtained findings suggest that the individual perception of the quality of the caregiving relationship held by each member of the caregiving dyad is an important factor for that member’s life satisfaction and well-being, while the partner’s perception of relationship quality is not. The findings highlight the importance of considering the individual perspective of both the person with dementia and the caregiver and enabling each to maintain positive perceptions of relationship quality.

The tradition of the oppressed teaches us that the 'state of emergency' in which we live is not the exception but the rule. We must attain to a conception of history that is in keeping with this insight¿.The current amazement that the things we are experiencing are 'still' possible in the twentieth century is not philosophical. This amazement is not the beginning of knowledge, unless it is the knowledge that the view of history which gives rise to it is untenable. (Benjamin, 1940: 248-249) The German-Jewish critical theorist Walter Benjamin (1892-1940) wrote these lines shortly before his death in exile whilst fleeing from the agents of fascism. They seem particularly relevant to a healthcare policy conference with the title ¿Condition Critical¿ taking place almost 70 years later. In this paper one of the things I hope to do is outline how Benjamin¿s concept of the permanent state of emergency relates to health and social care provision for older people with dementia today. Benjamin believed that the Holocaust came about because of the 'amnestic' view of history as an unbroken, linear process of scientific achievement, including the belief in human perfectibility. He suggested that in order to see history stripped of this ideological myth of progress, we need to wake from a collective 'dream history', from our usual somnolent acceptance of surface appearances (Cohen 1993: 5). Similarly it can be argued today that the 20th century 'dream history' of linear progress away from a never-to-be-repeated Holocaust is a myth. My strong claim in this paper is that present day demographic panic related to the economic 'burden of care' for an ageing population is leading to proposed solutions analogous to the ideological killing of psychiatric patients, the physically disabled, Jews and other victims of Nazism in the mid-20th century. Such 'solutions' are fuelled by media propaganda, the profit motives of what has been described as the 'medical-industrial complex' (Bond et al 2004) and a reductive, medicalised, biological determinist model of the cognitive changes of ageing.

Ex Memoria is a short film - just 15 minutes long - which focuses on the experience of Eva, a woman with dementia living in a nursing home. The film - which is the result of a collaboration between Bradford Dementia Group (BDG), writer/director Josh Appignanesi, and producer Mia Bays - attempts to show how life might be experienced from Eva's point of view, in her 'version of reality'. In this article I will outline the background to the making of Ex Memoria, explain how the film is being used on the Dementia Studies courses provided by BDG, and - without giving away too much of the story for people who haven't yet seen the film - summarise some of the responses to it.

In recent years walking interviews have emerged as a valuable alternative to the standard research interview, particularly in studies related to place, community, and the urban environment (Clark and Emmel 2010). Although there is little literature on the use of walking interviews with people who have dementia, the method is particularly appropriate for this participant group, due to the strong memories for place and past events that are usually retained by people with dementia, even when short term memory deteriorates (Chaudhury 2008). Narrative biography work with people who have dementia shows a repeated tendency to use geographical markers as ¿signposts¿ to particular memories (Bryce et al 2010). In 2010 the authors piloted the use of walking interviews with three people with dementia within a care home environment. The film record of the process suggests that the combination of physical movement and reminiscence which was involved both facilitated and enhanced communication for people with dementia. These findings led to the present work which is based on walking interviews with people who have dementia in places which have particular meaning for them, such as the street where they grew up; the school they attended; a former workplace; public park; sports ground or other familiar space. The oral presentation will include film clips, contrasting ¿static¿ communication with each participant, with his or her verbal production, or non-verbal communication, in response to environmental prompts and recovered sights and sounds. In addition, we will draw on the film data to explore a series of thought-provoking questions related to changing inner and outer landscapes, the vagaries of memory, and the psychogeography of dementia. Can the frequently pathologised ¿wandering¿ of people with dementia in time and space be rehabilitated using situationist concepts such as the dérive and the flaneur?

Since 2001 the Trebus Project has been collecting first-person narrative biographies of people with dementia, the majority of whom were living in UK care homes. In 2012 David Clegg, the director of the Trebus Project, received funding from the Wellcome Trust's Arts Awards to carry out an interdisciplinary exploration of the narratives of three people with dementia who, by coincidence, had occupied the same care home room (Room 21) at different times. Analysis of the three narratives to date has discovered some uncanny echoes and resonances. The narrators make frequent reference to other rooms which are temporally or spatially connected with Room 21 in some way. There are worm-hole-like exits and entrances to past times and places, and intimations of other rooms within, behind, and underneath this present living space. At points, events in national and social history sheer dizzyingly away from the accounts of them we have inherited from official sources. Extracts from the narratives of Room 21's three inhabitants, Frances, Peter and Shirley, will be presented in a way that juxtaposes the experience of dementia and post-war postmodern consciousness: liminal, fragmentary, frequently surreal, and beyond the reach of universalising accounts of either the 'illness experience' or revisionist history. Plans to disseminate the findings of the project by means of film and dramatic reconstruction will be discussed.

This study assessed the effects of a psycho-educational intervention on direct care workers' person-centredness during morning care to residents with dementia. A controlled pretest–posttest study was conducted in four aged-care facilities with 56 direct care workers (female, mean age 44.72 ± 9.02). Two experimental facilities received a psycho-educational intervention comprising person-centred care competences and stress management skills; control facilities received an education-only intervention, without stress support. In total, 112 video-recorded morning care sessions were coded using the Global Behaviour Scale. Both groups reported significantly higher scores on eight of 11 items of the Global Behaviour Scale and on the Global Behaviour Scale total score at posttest (F=10.59; p=0.02). Global Behaviour Scale total score improvements were higher for the experimental group, with values close to significance (F=3.90; p=0.054). The findings suggest that a psycho-educational intervention may increase care workers' person-centredness. Further research is needed to explore the long-term sustainability and extent of its benefits on workers and residents.

An experimental study using a pre-posttest control group design was conducted to assess the effects of a person-centred care based psycho-educational intervention on direct care workers’ stress, burnout and job satisfaction. The intervention aimed to develop person-centred care competences and tools for stress management. Four aged care facilities were randomly assigned to a psycho-educational or an education-only intervention (control). Data were collected from fifty-six direct care workers (female, mean age 44.72±9.02) through measurements of burnout (Maslach Burnout Inventory), job satisfaction (Minnesota Satisfaction Questionnaire-short form) and stress (Perceived Stress Scale) and focus-group interviews. Results showed significant positive effects in emotional exhaustion (p=0.029) and positive but no significant effects in stress and job satisfaction. According to qualitative data, the experimental group perceived enhanced group cohesion, emotional management and self-care awareness. Psycho-educational interventions may contribute to reduce direct care workers’ burnout. Further work is needed to determine the extent of its benefits.