Creating Vignettes of Early Onset Dementia: An Exercise in Public Sociology

Jenkins, Nicholas; Keyes, Sarah; Strange, Liz

doi:10.1177/0038038514560262

Cited by 12 publications

(10 citation statements)

References 42 publications

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“…A burgeoning interest in creativity in the context of dementia has also manifested in a growing and diverse body of studies that have used innovative research methods to develop understandings of the subjective experience of living with dementia (e.g. Aadlandsvik, 2008; Bartlett, 2012; Buse & Twigg, 2016; Capstick & Ludwin, 2015; Gjengedal, Lykkeslet, S⊘rb⊘, & Sæther, 2014; Jenkins et al., 2016; Keady, Hydén, Johnson, & Swarbrick, 2017; Kontos, Miller, & Kontos, 2017). Examples of these include co-creational arts-based research methods such as poetry (Aadlandsvik, 2008), drama (Jenkins et al., 2016) and participatory film-making (Capstick & Ludwin, 2015), diary methods (Bartlett, 2012) and methods privileging material and embodied experience (Buse & Twigg, 2014, 2016, 2018; Kontos et al., 2017).…”

Section: Creative Methods Used To Study the Experience Of Dementiamentioning

confidence: 99%

“…The person-centred paradigm, while enacting a welcome shift in emphasis from the biomedical features of dementia to the person living with the condition, has arguably concretised an individual, rather than relational, focus. We propose that viewing the self as a social, relational process (Jenkins, Keyes, & Strange, 2016) rather than as an atomised, interior phenomenon, may offer a broader perspective on creativity which could be usefully adopted in a critical approach.…”

Section: Researching Arts-based Interventions For People With Dementiamentioning

confidence: 99%

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Broadening the debate on creativity and dementia: A critical approach

Bellass

Balmer²,

May

et al. 2018

Dementia

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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 with regard to how such creativity is used by people living with 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.

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Section: Creative Methods Used To Study the Experience Of Dementiamentioning

confidence: 99%

Section: Researching Arts-based Interventions For People With Dementiamentioning

confidence: 99%

Broadening the debate on creativity and dementia: A critical approach

Bellass

Balmer²,

May

et al. 2018

Dementia

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“…Participatory methods were used to involve people with dementia in hands-on processes including filmmaking (Capstick & Ludwin, 2015), writing and acting (Jenkins et al, 2016), diary keeping (Bartlett, 2012), design (Boman et al, 2014;Martin et al, 2013;van Hoof, Sprong, Marston, & Janssen, 2015), and autobiographical narrative production (Benbow & Kingston, 2014). In these studies, innovation was consistently demonstrated in both the hands-on processes and the methods used to explore them.…”

Section: Participatory Methodsmentioning

confidence: 99%

“…The therapeutic potential of engaging in participatory studies was highlighted (Benbow & Kingston, 2014;van Hoof et al, 2015), but participatory methods also included creative processes whose purpose extended beyond the therapeutic. Tangible outputs included the development and testing of assistive technology (Boman et al, 2014;Martin et al, 2013) and the production of filmed theatrical vignettes used for public and academic education (Jenkins et al, 2016). Participatory methods were identified as paying particular attention to issues of power and inclusion and the construction of shared understandings.…”

Section: Participatory Methodsmentioning

confidence: 99%

“…Two explanations were commonly cited for the screening and exclusion of people with advanced dementia including concerns about communication and memory and concerns about informed consent. The use of familiar locations, reminders, repeat contact with researchers, and dedicated time for relationship building were cited as contributing to a safe and productive research environment (Bartlett, 2012;Bisiani & Angus, 2013;Jenkins, Keyes, & Strange, 2016;Wiersma, 2011). Several studies identified that they used a "process consent" approach whereby informed consent is sought at multiple ongoing time points in order to facilitate a more genuine experience of choice and control for the person with dementia (Martin et al, 2013;Tanner, 2012).…”

Section: Charting the Datamentioning

confidence: 99%

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More Than Talking

Phillipson

Hammond

2018

International Journal of Qualitative Methods

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Participation in qualitative research frequently relies upon recall and verbal expression, which may be difficult for some people with dementia. While the use of arts-based and visual methods are transforming dementia care, exploratory research and evaluation methods have lagged behind with regard to the use of innovative qualitative approaches. This scoping review identified innovative qualitative methods that have been used to effectively engage and involve people with dementia in social and health research. Systematic searches of academic databases, Google Scholar, and hand searches identified 24 peer-reviewed articles published since 2010 for inclusion. Analysis focused on a description of both the motivation and methods ascribed by the researchers and how the capacities of people with dementia were engaged as part of the research process. The most frequently used innovative method was Photovoice. Action research, case study, narrative production, ethnography, participatory filmmaking and theater, co-research, and mixed methods were also used. Regardless of methodology, most studies used a participatory approach that incorporated visual methods alongside adapted semistructured or unstructured interviews. Researchers were focused on inclusion, empowerment, selfexpression, flexibility, and communication when selecting methods. Providing an appropriate research environment and committing time for repeat contact, observation, and engagement were important considerations.

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Lifelong Learning and Dementia

Quinn¹,

Blandon²

2020

Palgrave Studies in Adult Education and Lifelong Learning

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In this chapter we introduce the key arguments of this book. First, a posthumanist perspective helps understand and value the lives of people with dementia and second, they are capable of learning and teaching. It introduces dementia as a global social issue and cultural phenomenon and critiques the dominant narratives of loss and punishment surrounding it. Drawing on interviews with families of people with

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Creating Vignettes of Early Onset Dementia: An Exercise in Public Sociology

Cited by 12 publications

References 42 publications

Broadening the debate on creativity and dementia: A critical approach

Broadening the debate on creativity and dementia: A critical approach

More Than Talking

Lifelong Learning and Dementia

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