• Bay Tree Voices: Inclusive practice in the involvement of people with dementia in practitioner education.

      Capstick, Andrea (2012)
      Dementia has been a latecomer to the field of service user involvement. Although there are now beginning to be welcome signs of improvement in the inclusion of the service-user voice, at present those with milder cognitive impairment, those who are still living at home, and those who come from white, professional backgrounds are over-represented. The BSc/MSc Dementia Studies programmes at the University of Bradford recruit part-time students who are already employed in the field of dementia care. The majority of students work in long-term or intermediate care, with smaller sub-groups working in the community, in acute care and on general hospital wards. The client groups with dementia they encounter in these settings are diverse, and tend to have different needs and perspectives from those articulated by mainstream service user groups. For this reason we have been seeking to develop an inclusive approach to service user involvement in the degree programmes we run, in order to ensure that the whole range of experiences of dementia is covered. Over the last five years this has involved developing an outreach programme in order to involve people with dementia in the environments where they spend their time, rather than restricting service user involvement to on-site activities at the University. This presentation showcases one such project which involved members of the course team working with clients attending a resource centre for older people with dementia to develop a series of short film clips (Bay Tree Voices) which were then embedded into the course learning materials in order to model alternative approaches to communication. The presentation includes formal and informal evaluations of these film-based teaching resources from service users, students and care staff.
    • Behind the stiff upper lip: war narratives of older men with dementia.

      Capstick, Andrea; Clegg, D. (2013)
      The concept of the stiff upper lip stands as a cultural metaphor for the repression and figurative ¿biting back¿ of traumatic experience, particularly in military contexts. For men born in the first half of the 20th century, maintaining a stiff upper lip involved the ability to exert high levels of cognitive control over the subjective, visceral and emotional domains of experience. In the most common forms of dementia, which affect at least one in five men now in their 80s and 90s, this cognitive control is increasingly lost. One result is that, with the onset of dementia, men who have in the intervening years maintained a relative silence about their wartime experiences begin to disclose detailed memories of such events, in some cases for the first time. This article draws on narrative biographical data from three men with late-onset dementia who make extensive reference to their experience of war. The narratives of Sid, Leonard and Nelson are used to explore aspects of collective memory of the two World Wars, and the socially constructed masculinities imposed on men who grew up and came of age during those decades. The findings show that in spite of their difficulties with short term memory, people with dementia can contribute rich data to cultural studies research. Some aspects of the narratives discussed here may also be considered to work along the line of the counter-hegemonic, offering insights into lived experiences of war that have been elided in popular culture in the post-War years.
    • Broadening the debate on creativity and dementia: A critical approach

      Bellass, S.; Balmer, A.; May, V.; Keady, J.; Buse, C.; Capstick, Andrea; Burke, L.; Bartlett, Ruth L.; Hodgson, J. (2019-11-01)
      In recent years there has been a growing interest in person-centred, ‘living well’ approaches to dementia, often taking the form of important efforts to engage people with dementia in a range of creative, arts-based interventions such as dance, drama, music, art and poetry. Such practices have been advanced as socially inclusive activities that help to affirm personhood and redress the biomedical focus on loss and deficit. However, in emphasizing more traditional forms of creativity associated with the arts, more mundane forms of creativity that emerge in everyday life have been overlooked, specifically as regards how such creativity is used by people living dementia and by their carers and family members as a way of negotiating changes in their everyday lives. In this paper, we propose a critical approach to understanding such forms of creativity in this context, comprised of six dimensions: everyday creativity; power relations; ways to operationalise creativity; sensory and affective experience; difference; and reciprocity. We point towards the potential of these dimensions to contribute to a reframing of debates around creativity and dementia.
    • The carnival is not over: cultural resistance in dementia care environments

      Capstick, Andrea; Chatwin, John (2016-04)
      Within the still-dominant medical discourse on dementia, disorders of language (such as dysphasia, aphasia, and perseveration) feature prominently among diagnostic criteria. In this view, changes in ability to produce coherent speech or understand the speech of others are considered to be a direct and inevitable result of neuropathology. Whilst an alternative psychosocial account of communicative challenges in dementia exists, emphasis here is placed largely on the need to compensate for deficits in the language or comprehension of the diagnosed individual and on his or her social positioning by ‘healthy others’. Rather less emphasis has been placed to date people with dementia as social actors who create meaning and draw on contextual clues in order to give shape to their interactions. In this article we draw on Mikhail Bakhtin’s concepts of the carnivalesque, heteroglossia, polyphony and dialogism to analyse a series of interactions involving people with dementia in day and residential care environments. Two main findings are foregrounded. The first, consistent with previous studies, is that many of the communicative challenges faced by people with dementia arise from the social environments in which they find themselves. The second is that the utterances of people with dementia in the face of these social challenges show many of the hallmarks of cultural resistance identified by Bakhtin.
    • Challenging representations of dementia in contemporary Western fiction film: from epistemic injustice to social participation

      Capstick, Andrea; Chatwin, John; Ludwin, Katherine (2015)
      Fiction film is one of the most influential vehicles for the popularization of dementia. It is likely to have a particular influence on the way dementia is constructed by society at large, not least due to its consumption in the guise of entertainment. In this paper, we will argue that such popularization is rarely innocent or unproblematic. Representations of people with dementia in film tend to draw heavily on familiar tropes such as global memory loss, violence and aggression, extreme dependency on heroic carers, catastrophic prognosis, and early death. Audiences may therefore uncritically absorb discourses which reinforce negative stereotypes and perpetuate the biomedical orthodoxy that everything a person with dementia says or does is ‘a symptom of the disease.’
    • Cine-med-ucation and dementia: Whatever happened to representation theory?

      Capstick, Andrea; Ludwin, Katherine (2009)
      This paper is concerned with a variety of contemporary representations of dementia in both mainstream made-for-box-office cinema and in TV soap and drama. Such representations frequently draw on familiar tropes of global memory loss, violence and aggression, extreme dependency on heroic carers, catastrophic prognosis, and early death. Whilst such narrative devices may be excusable to some extent in film made for purposes of entertainment, the producers have considerable responsibility for public awareness and understandings of dementia, which, we would argue, should be discharged in a socially responsible way, rather than purely in order to achieve dramatic effect. Moreover, it has been widely argued in recent years (eg Alexander et al 2005) that film of this nature can be used ¿as it stands¿ in the education of health and social care practitioners. Instead, we would argue that students and practitioners need to learn the basic principles of representation theory, in order to understand and critique how film works to influence and socially construct views of health, illness and regimes of truth around them, paying central attention always to the question of whose interests are served by the representation in question.
    • 'Cine-med-ucation' and the hermeneutics of suspicion: representations of amnesia and cognitive impairment in film.

      Capstick, Andrea (2009)
      In recent years there has been a resurgence of interest in the use of arts, humanities and media-based approaches to teaching students in medicine, health, and social care-related disciplines. Here, it is widely assumed that 'the arts' are an undifferentiated force for good which will humanise curricula dominated by medical and scientific perspectives. Such approaches tend, however, to be implemented in something of a theoretical vacuum with little consideration of critical perspectives derived from cultural studies. 'Cinemeducation' is a term recently coined for the use of mainstream films which touch on particular medical conditions or 'disorders' in the education of medical students (Alexander et al, eds 2005). What is overlooked by advocates of this approach is that such films often perpetuate stereotypical views of the nature and causes of physical and emotional ill-being, and collude in their medicalisation. Scriptwriters and directors may also give in to the temptation to sensationalise or misrepresent conditions because this makes for box office success. Finally, there are subtleties related to denotation and connotation in film which mean that little can straightforwardly be assumed about educational outcomes. This presentation will draw on a study of both independent and mainstream films related to memory loss and cognitive impairment in the context of my own teaching in dementia studies, and will include clips from source material. Drawing on Ricoeur's concept of the hermeneutics of suspicion I seek to introduce a note of caution to the current 'arts and health' agenda.
    • Dancing to the music of time: an experiential learning exercise in dementia care.

      Capstick, Andrea (28/05/2013)
      This article presents findings from an experiential learning exercise in which 34 care practitioners enrolled on a part-time BSc programme in Dementia Studies were asked to identify their own favourite music, and then to investigate the musical preferences of one of their clients with dementia. For both groups, practitioners and clients, three dominant themes influencing choice of music emerged: loving relationships; significant life events and places, and a sense of physical enjoyment. This exercise enabled the group of practitioners involved to identify commonalities between their own musical memories and those of their clients with dementia. They also uncovered considerable amount of new information about their client¿s life histories. On this basis they were able to make a number of new recommendations for improving care practice.
    • Dementia as a disability: Implications for ethics, policy and practice. A Discussion Paper.

      Gove, Dianne M.; Andrews, J.; Capstick, Andrea; Geoghegan, C.; Georges, J.; Libert, S.; McGettrick, G.; Rochford-Brennan, H.; Rohra, H.; Vehmas, S.; et al. (2017)
      People experience dementia in different ways, not just in terms of the type and severity of symptoms, but also in terms of how they react to and manage living with dementia. Increasingly, people with dementia are expressing a desire to get on with their everyday lives. They want to avoid being defined solely in relation to dementia and to continue to be considered as valued members of society. This is particularly important as the term dementia often has negative connotations. It is widely considered as a stigma. Neurological impairment may interfere with people’s ability to get on with their lives, as may differences in coping skills, financial resources, the emotional and psychological impact of dementia, and access to timely and good quality support. Reactions of relatives, friends and fellow citizens are also important, as well as society’s response to dementia. This was highlighted by Kitwood in the 1990s when he outlined what came to be known as the biopsychosocial model of dementia . There are also differences at the level of society, reflected in practices, attitudes and structures. These may, on the surface, seem fair or neutral (i.e. “that’s just the way it is”). In many cases, however, they reflect a lack of consideration and failure to act in a responsible, ethical and even legal way towards people with dementia... In this report, we focus on the possible implications for ethics, policy and practice of raising awareness about the potential of framing dementia as a potential disability.
    • Digital life storytelling and dementia: linear narratives or lines of flight?

      Capstick, Andrea; Ludwin, Katherine (2015-09-17)
      Digital storytelling using a standard software package such as Photostory 3 can work to impose a linear format on a slideshow of visual images. By contrast the forms of self-expression adopted by people who have a diagnosis of dementia can often be digressive, circuitous and rhizomatic, corresponding more closely to Deleuze and Guattari’s concept of ‘lines of flight’. Preparatory to completing digital stories with ten people with a diagnosis of dementia who were living in a long-term social care environment, we used both linear (visual narrative) and non-linear (collaging) storyboarding techniques. This presentation draws on examples of both, together with extracts from one completed digital life story, to highlight why we need to avoid linear form dictating digital storytelling practice.
    • Doing visual archaeology: archive images and participatory film-making

      Capstick, Andrea; Ludwin, Katherine (2015)
      Visual sociology often relies for its content on researcher-created or participant-created images. In this article we discuss our use of existing local history archive images in a participatory film-making project with ten people living in residential dementia care in the Northern UK. We draw on the concept of archaeology in two ways: first, as used by Foucault (1972), who contends that archaeology is a metaphor for exploring traces left by the past in order to understand the present. Secondly, in a more obvious sense–many of the most salient cultural references for our participants related to public buildings and local landmarks that had been demolished, repurposed, or dramatically changed in appearance since their youth.
    • Drawn from life: Cocreating narrative and graphic vignettes of lived experience with people affected by dementia

      Capstick, Andrea; Dennison, Alison; Oyebode, Jan R.; Healy, Lesley; Surr, Claire A.; Parveen, Sahdia; Sass, C.; Drury, Michelle (Wiley, 2021)
      Background: The growing literature on Patient and Public Involvement and Engagement (PPIE) and dementia identifies specific problems related to the influence involvement has on research outcomes, over-reliance on family members as proxies, and lack of representation of seldom-heard groups. Adaptations to the PPIE process are therefore needed in order to make possible the involvement of a broader spectrum of people living with dementia. Objective: To adapt the PPIE process in order to make participation in co-creation by people living with dementia accessible and meaningful across a spectrum of cognitive abilities. Design: Narrative elicitation, informal conversation, and observation were used to co-create three vignettes based on PPIE group members’ personal experience of dementia services. Each vignette was produced in both narrative and graphic formats. Participants: Nine people living with dementia and five family members. Results: Using enhanced methods and outreach it was possible to adapt the PPIE process so that not only family members and people with milder cognitive difficulties could participate, but also those with more pronounced cognitive problems whose voices are less often heard. Conclusions: Making creative adaptations is vital in PPIE involving people living with dementia if we wish to develop inclusive forms of PPIE practice. This may, however, raise new ethical issues, which are briefly discussed.
    • Ethnography in Dementia Care Research: observations on ability and capacity

      Ludwin, Katherine; Capstick, Andrea (2016)
      This case outlines the rationale and methods used when carrying out ethnographic fieldwork in a care home environment with research participants who were living with a dementia diagnosis. Although concerns had been raised at ethics approval about the use of such methods – visual ethnography in particular – we found that there were ethical benefits for the participants whose capacity for research participation, and for social participation generally, was, in every case, higher than anticipated at the outset. By comparison we found that formal methods for assessing ability to give informed consent often appeared to create excess disability, and to exacerbate ill-being for people with dementia. The case draws on specific examples to show how issues related to methods and to ethical conduct of research are frequently intertwined, and should be considered together rather than in isolation.
    • Ex Memoria: In Eva's case - some memories fade - others keep returning.

      Capstick, Andrea (2007)
      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.
    • From Room 21: Narratives of liminality, shared space, and collective memory in dementia care

      Clegg, D.; Capstick, Andrea (2013)
      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.
    • 'How far we have come together': findings from a 3-phase strategy to involve people with dementia in practitioner education.

      Capstick, Andrea; Dunnett, R.; Gallagher, P.; Jarvis, A.; Jureidin, D.; Peet, M. (2011)
      The Division of Dementia Studies at the University of Bradford has a 3-stage strategy to involve service users with dementia in practitioner education. This year¿s conference will be a perfect opportunity for us to show how the involvement of people with dementia in our Dementia Studies courses has moved from rhetoric to reality over the past three years. We now have people with dementia involved in the management, delivery and assessment of our degree programmes. A participatory video outreach project carried out in a day centre for people with dementia in 2009 produced a variety of audio-visual material including voice recordings, photographs, and film which people with dementia were directly involved in making, and which are now used as learning resources for students. In a parallel project, former carers contributed to a DVD that was developed as part of a dedicated training programme for Bupa care staff. Students on the MSc Dementia Studies (Training in Dementia Care) pathway are now also beginning to include people with dementia in the training they provide in order to complete their award. A further project to pilot methods of involving service users in long-term care, including those with severe dementia is to begin in March 2011, and early findings from this will also be presented. The presenters include an academic course lead, a MSc student, a researcher, a service user/campaigner, and current and former family carers. We will present using a variety of formats including small case studies, film, audio, photographs and service user narratives. We will also be open to questions and comments about the practical, ethical and educational challenges arising from this ongoing work.