Co-creativity, well-being and agency: a case study analysis of a co-creative arts group for people with dementia

At the heart of this paper is an exploration of artistic co-creativity involving people with dementia and their partners. Co-creativity promotes a relational approach to creativity which nurtures inclusion and participation. This paper investigates how co-creativity can affect well-being from the perspectives of people with dementia and their carers; and explores how well-being and agency might be usefully reconsidered. The article draws on findings from a small-scale study ‘With All’ that focused on music and dance as non-verbal and therefore inclusive artforms. A range of disciplinary perspectives, from psychology, philosophy and social sciences, inform the study. The research used an intrinsic case-study methodology and within this a mixed-methods approach was adopted. This included dialogic interviews, video data analysis and the Canterbury Well-being Scale (CWS). Thematic analysis of the interviews and video data revealed three key themes: autonomy, connections, and art as an enabler. These themes captured the experiences of the participants and facilitated a more nuanced understanding of wellbeing and agency in the context of living with dementia. The analysis of the CWS indicated some improvements in well-being. Following this analysis using multiple data sources, the paper argues that wellbeing and agency are best understood as relational, and ongoing, rather than completed states. Further both wellbeing and agency contain their opposites (ill-being and passivity). This innovative exploration highlighted the importance of co-creative collaboration as a method that was considered valuable by participants, and that therefore should be further considered in future research with people living with dementia

Together yet apart: Rethinking creativity and relational dementia care during the Covid-19 pandemic

Culture Box was a creative project that responded to deprivation and distress experienced by those with dementia in care homes during the COVID-19 pandemic. Remote and digital creative activities were designed and delivered as ‘Culture Boxes’ to care homes, aiming to alleviate social isolation and loneliness for people with dementia. Eighty-eight people with dementia and 33 care staff from 33 care homes across England were recruited to the study, with 68 people with dementia and 28 staff completing the study 12 months later. Participatory Action Research combining mixed methods was used to evaluate the project. Baseline and follow-up surveys and dialogic interviews at 3 time points during the study collected quantitative and qualitative data and were analysed descriptively and via inductive thematic analysis respectively. Qualitative findings indicated that the project activities facilitated relational care through creative experiences characterised by sharing, building relationships, and developing a sense of community. Social health was promoted via participation in social activities and fostering independence. Future studies should further explore the utility of creative practices to develop relational care, to support care staff, and to maximise wellbeing benefits for those living with dementi

Preparatory planning framework for Created Out of Mind: Shaping perceptions of dementia through art and science [version 1; referees: 2 approved]

Created Out of Mind is an interdisciplinary project, comprised of individuals from arts, social sciences, music, biomedical sciences, humanities and operational disciplines. Collaboratively we are working to shape perceptions of dementias through the arts and sciences, from a position within the Wellcome Collection. The Collection is a public building, above objects and archives, with a porous relationship between research, museum artefacts, and the public. This pre-planning framework will act as an introduction to Created Out of Mind. The framework explains the rationale and aims of the project, outlines our focus for the project, and explores a number of challenges we have encountered by virtue of working in this way

Conceptualising and Understanding Artistic Creativity in the Dementias: Interdisciplinary Approaches to Research and Practise

Creativity research has a substantial history in psychology and related disciplines; one component of this research tradition has specifically examined artistic creativity. Creativity theories have tended to concentrate, however, on creativity as an individual phenomenon that results in a novel production, and on cognitive aspects of creativity, often limiting its applicability to people with cognitive impairments, including those with a dementia. Despite growing indications that creativity is important for the wellbeing of people living with dementias, it is less well understood how creativity might be conceptualised, measured and recognised in this population, and how this understanding could influence research and practise. This paper begins by exploring prevailing concepts of creativity and assesses their relevance to dementia, followed by a critique of creativity and dementia research related to the arts. Perspectives from researchers, artists, formal and informal caregivers and those with a dementia are addressed. We then introduce several novel psychological and physiological approaches to better understand artistic-related creativity in this population and conclude with a conceptualisation of artistic creativity in the dementias to help guide future research and practise

Rights in mind: Thinking differently about dementia and disability

The aim of this paper is to argue for the utility of a relational model of disability, as a way of conceptualizing dementia. We explore whether dementia should be considered as a disability, and whether people with dementia might consider themselves as disabled people. We review examples of, and issues raised by, the political activism of people with dementia. We consider how language constructs dementia negatively. We discuss how the environment influences the experience of dementia. In conclusion, we show that a relational model of dementia lays the basis for a human rights approach to the condition, based on collaborative partnerships between people with dementia and people from other disability communities

Applying a multicentre, interdisciplinary approach to strengthen the generalisability of qualitative dementia research: the experience and challenges faced by the MinD project in Europe

Background: Generalisation of findings is an important aspect of research and essential for evidence-based practice. While generalisation is common in quantitative research, there is a lack of generalisability in qualitative research. This paper presents the experience and challenges faced by the Designing for People with Dementia (MinD) project in meeting the requirements to strengthen the generalisation of findings on the lived experience of people living with dementia and their engagement to co-create designs to empower their everyday living. Methods: Polit and Beck (2010)’s strategies to generalise qualitative findings were applied: (1) replication in sampling; (2) replication of studies; (3) meta-synthesis of findings; (4) reflexivity and conceptualization; (5) immersion with the data; and (6) thick description. Results: While it is possible to increase the generabilisabilty of qualitative evidence through the replication of the sampling to attain a large, heterogeneous sample in different and multiple contexts and environments; implementation of sound and robust research; conducting in-depth analysis and interpretation collaboratively for emergent themes; and meeting the thick description requirement, there are challenges that the project team faced in implementing some of the Polit and Beck’s strategies because of the condition, namely dementia, that our participants are having. Other challenges faced were: the language and cultural diversity in the team; diverse work and organisational procedures; and the inter-disciplinary differences relating to the methods of enquiry, approaches and techniques to conduct research. These challenges will need to be identified and addressed at the start of the project with a strong leadership to ensure a seamless journey to complete the project successfully. Trust between the researchers and participants, and time to build this trust are critical to recruitment and participation in the study; these factors are of utmost important in research involving participants with condition such as dementia

The critical use of narrative and literature in gerontology

It is now widely accepted that ‘‘age’’ and ‘‘ageing’’ are cultural concepts that are open to question. The thinking encouraged by critical gerontology has been crucially important in provoking questions about the complexities of later life, age and ageing. Similarly, the interrogation of stories of age and ageing via narrative approaches and as found in literature are increasingly recognised as an important source of knowledge for mining the intricacies of later life. There are close links between the interests of critical gerontologists and those who engage in narrative and literary gerontology. However, the potential that critical gerontology has for illuminating and probing these stories of age has often been neglected. The central argument of this article is that narrative and literary approaches to age and ageing when allied to perspectives from critical gerontology can furnish scholars with important perspectives for interpreting and re-configuring ‘‘age’’. The focus is upon how a genuinely dialogic relationship between critical gerontology and narrative and literary gerontology can be forged. In this way, the full potential of these stories of ageing; their epistemological status for enriching theoretical work on ageing, might be better exploited

Gaps and spaces: Representations of dementia in contemporary British poetry

This article considers the work of a number of contemporary British poets who have attempted to articulate some of the experiences that dementia entails. The unique potential of poetry as a means of portraying the dislocations and reinventions of self that dementia involves has been mostly overlooked. The insights offered by critical gerontology are central to this article. This perspective calls for critical thought about the ways in which dementia has been socially constructed. The challenges posed by poets such as Vuyelwa Carlin, Valerie Laws and Jo Shapcott in particular, are examined. The complex poetic representations offered by these poets acknowledge the pathological declines of dementia and simultaneously celebrate the individuality and life of their subjects. Considering dementia with reference to the work of contemporary poets and critical gerontology is one way in which we can deepen our understanding of what this illness involves and humanise those who suffer from it