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 dementia.

Broadening and deepening the understanding of agency in dementia.

Agency has become an essential component of discussions concerning selfhood, well-being, and care in dementia studies but the concept itself is rarely clearly defined and the use of this term can be confusing and conflicting. This paper outlines some of the key ways in which agency has been conceptualised in relation to dementia, highlighting the complexities surrounding this concept and focusing on agency in a way that is tied to our ideas about citizenship, legal and human rights. Seven key dimensions of agency are examined: embodiment, emotions, sense of agency, intentional conscious action, the social context of agency, decision-making and moral responsibility. Using a critical realist approach, this paper brings together the diverse ways in which agency has been understood into an interdisciplinary, laminated understanding of agency. This model is then used in an applied example demonstrating that this model can be used to identify the ways in which an arts intervention can support the agency of people living with dementia. This paper proposes that agency is layered, multidimensional and exists on a continuum.

Enhancing communication between dementia care staff and their residents: an arts-inspired intervention.

Objectives: The arts are increasingly recognised as important and beneficial activities for people living with dementia. However, there is little peer-reviewed published research exploring arts-based learning for dementia care staff. In response, this paper explores (a) how dementia care staff describe forms of communication in care settings, and (b) the impact on communication following four sessions of 'Creative Conversations', an arts-based intervention for skills development.Method: Fourteen care homes received the intervention, delivered as 4 × 2 hour sessions. The intervention uses a range of activities (e.g. poetry, film, music, art making). Twenty-eight care staff were opportunistically sampled (mean age = 42.29), and provided pre-post qualitative data, obtained through interviews. Transcripts were analysed thematically.Results: At baseline, the dominant 'task-focussed' nature of care work was described as a barrier to communication, challenging opportunities for developing meaningful relationships with residents. Post-intervention, three primary themes were identified regarding improving communication: (1) learning through the arts (secondary themes: simplicity and subtlety, innovation in communication, and strengthening the role of non-verbal communication), (2) Enhancing creative approaches to care (secondary themes: element of surprise, confidence to experiment and catalyst for communication) and (3) professional introspection (secondary themes: development of empathy, sharing knowledge and experiences and a new appreciation).Conclusions: The intervention validated staff skills and confidence, enabling meaningful interactions that could be creative, 'in the moment', spontaneous and improvised. This arts-based intervention, which departs from formal education and fact-based learning may be particularly useful for the development of the dementia care workforce.

Making a living moment more resonant: an exploration of the role of the artist in co-creative work with people living with dementia.

Background: Despite a growth in interest in recent years in the benefits of working co-creatively with the Arts for people living with dementia, little attention has been given to understanding the role of the professional artists within this context. Our main question here is 'How do professional artists apply their skills and knowledge in co-creative arts groups with people with dementia?' This paper has been informed by the insights gained from a series of conversations, observations and journals that were kept by four UK based artists (two musicians and two dancers) who reflexively interrogated what they were doing during the course of an 8-week co-creative arts project with people living with dementia. Methods: The research used an empirical case study methodology, with the authors adopting a thematic approach to the analysis of the data. Results: Thematic analysis resulted in three main themes: Authenticity, Enabling Risk and Togetherness. These themes characterise the skills, techniques and specialised knowledge used by the artists during the co-creative sessions. Conclusions: Following this analysis, the article argues that the beneficial effects for people living with dementia of co-creative art-based work come about through the conscious application by the artists of their shared skills and knowledge, acquired through training and ongoing artistic practice. Rather than an assumption that 'The Arts' are in themselves beneficial for people living with dementia, we must consider the active role played by the artists who are so integral to the process.

Codesigning a systemic discharge intervention for inpatient mental health settings (MINDS): a protocol for integrating realist evaluation and an engineering-based systems approach.

INTRODUCTION: Transition following discharge from mental health hospital is high risk in terms of relapse, readmission and suicide. Discharge planning supports transition and reduces risk. It is a complex activity involving interacting systemic elements. The codesigning a systemic discharge intervention for inpatient mental health settings (MINDS) study aims to improve the process for people being discharged, their carers/supporters and staff who work in mental health services, by understanding, co-designing and evaluating implementation of a systemic approach to discharge planning. METHODS AND ANALYSIS: The MINDS study integrates realist research and an engineering-informed systems approach across three stages. Stage 1 applies realist review and evaluation using a systems approach to develop programme theories of discharge planning. Stage 2 uses an Engineering Better Care framework to codesign a novel systemic discharge intervention, which will be subjected to process and economic evaluation in stage 3. The programme theories and resulting care planning approach will be refined throughout the study ready for a future clinical trial. MINDS is co-led by an expert by experience, with researchers with lived experience co-leading each stage. ETHICS AND DISSEMINATION: MINDS stage 1 has received ethical approval from Yorkshire & The Humber-Bradford Leeds (Research Ethics Committee (22/YH/0122). Findings from MINDS will be disseminated via high-impact journal publications and conference presentations, including those with service user and mental health professional audiences. We will establish routes to engage with public and service user communities and National Health Service professionals including blogs, podcasts and short videos. TRIAL REGISTRATION NUMBER: MINDS is funded by the National Institute of Health Research (NIHR 133013) https://fundingawards.nihr.ac.uk/award/NIHR133013. The realist review protocol is registered on PROSPERO. PROSPERO REGISTRATION NUMBER: CRD42021293255.

Subjective wellbeing in people living with dementia: exploring processes of multiple object handling sessions in a museum setting.

Background: Dementia care guidance highlights the importance of supporting people living with dementia to access engaging and meaningful activities to promote their quality of life. There is a growing evidence base for the efficacy of heritage settings and arts-based interventions to provide social prescribing opportunities to help support wellbeing in this population. This study extended previous research and explored the potential processes underlying this effect in multiple small group object handling sessions in a museum setting.    Methods: A mixed-methods design was used comprising a measure of subjective wellbeing and thematic analysis to explore in-the-moment session content across multiple sessions. Four people with dementia participated in three, one-hour group object handling sessions led by two facilitators. Results: Pre-post wellbeing scores showed increases after each session though this was largely not significant. Qualitative findings provided more compelling results, however, and identified four key themes: facilitating, interest in exploring objects, active participation, and group collaboration; interpretations were made around the dynamic interaction of themes and subthemes over the course of three sessions. Conclusions: This is the first study we are aware of that has taken an in-depth look at multiple museum-based group object handling sessions for people living with dementia. Findings offer ways to optimise object handling sessions for people with dementia by providing in-depth information about the processes involved across multiple object handling sessions facilitated by museum/heritage professionals in a museum setting. This has useful implications for community-based activities as part of dementia care planning and public health programming. The study contributes to a deeper understanding and elucidates the processes that enhance wellbeing for this population who participate in such sessions. It also helps to develop further theoretical understanding about why these types of activities are helpful in community-based dementia care. Limitations and implications for future research are discussed.

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.

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 well-being 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.

Perspectives on ICD-11 to understand and improve mental health diagnosis using expertise by experience (INCLUDE Study): an international qualitative study.

Developed in collaboration with WHO Department of Mental Health and Substance Abuse, this study (conducted in India, the UK, and the USA) integrated feedback from mental health service users into the development of the chapter on mental, behavioural, and neurodevelopmental disorders for ICD-11. The ICD-11 will be used for health reporting from January, 2022. As a reporting standard and diagnostic classification system, ICD-11 will be highly influential by informing policy, clinical practice, and research that affect mental health service users. We report here the first study to systematically seek and collate service user perspectives on a major classification and diagnostic guideline. Focus groups were used to collect feedback on five diagnoses: depressive episode, generalised anxiety disorder, schizophrenia, bipolar type 1 disorder, and personality disorder. Participants were given the official draft diagnostic guidelines and a parallel lay translation. Data were then thematically analysed, forming the basis of co-produced recommendations for WHO, which included features that could be added or revised to better reflect lived experience and changes to language that was confusing or objectionable to service users. The findings indicated that an accessible lay language version of the ICD-11 could be beneficial for service users and their supporters.

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.

Preparatory planning framework for Created Out of Mind: Shaping perceptions of dementia through art and science.

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.

Mark Making: Methodologies and methods (innovative practice).

Mark Making is a recently completed AHRC-funded review exploring the role of the participative arts for people with dementia in the UK. Key concerns underlying Mark Making were both how to privilege the views and feelings of people with a dementia and also how best to understand the value of the arts for people with a dementia. These issues were tackled using a variety of qualitative methods. Methods included a rigorous literature review, the development of a unique web-based map locating many participative arts projects and above all working with people with a dementia to ascertain their views. This brief article will concentrate on some of the innovative methods that the Mark Making team used, with particular reference to comics as a mode of engagement as used in the Descartes project. The article will provide an insight into some of the methodological challenges confronted by Mark Making as well as the inspirations and successes that were enjoyed.

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.

Dementia as a cultural metaphor.

This article contributes to debates about the category "dementia," which until recently has been dominated by biomedical models. The perspectives of critical gerontology are pertinent for extending knowledge about dementia and guiding this analysis. These perspectives encourage examination of cultural and historical influences and thus question how societies have constructed and defined dementia. This article queries the stories told about dementia and the language that we use to tell these stories. Central to the article is an analysis of some of the stories about dementia that are contained within and framed by contemporary culture. A number of films, TV documentaries, news reports, theatre, memoirs, novels, and poems that portray some of the experiences associated with dementia are interrogated. These representations are examined as they either perpetrate or challenge stereotypes about living with dementia. Analysis of these representations demonstrates the sociocultural construction of dementia and the extent to which dementia is a diachronic phenomenon. Above all, the article considers (a) the social and political dimensions of dementia, (b) the ways in which the metaphors persistently used to explain dementia shape our consciousness about this condition, and (c) the extent to which dementia is an inherent part of contemporary life.