Living well with dementia: the state of the arts
Pasiecznik Parsons M, Coaten R (2024) Living well with dementia: the state of the arts. Journal of Dementia Care 32(6) 23-26.
Maria Pasiecznik Parsons and Richard Coaten reflect on changes and challenges in creative arts and dementia that they set out in their forthcoming book.
Author Details
Maria Parsons is Chief Executive, Creative Dementia Arts Network (CDAN) and Dr Richard Coaten is dance and movement psychotherapist, CDAN
In September 2019, the Creative Dementia Arts Network (CDAN) partnered with the Journal of Dementia Care to run a conference at the Midlands Arts Centre in Birmingham. There we celebrated the value of creative arts for the health and well-being of people living with dementia, highlighting some of the key drivers for the rapid expansion of this field, and offering examples of good practice. Maria’s article in JDC at the time (Parsons 2019) reviewed developments and looked forward with optimism. This was CDAN’s tenth annual conference; little did we know that it would be our last for some time, as work and life then took a different turn.
What a difference five years makes
The pandemic impacted heavily on the lives of people living with dementia, on caregivers, on communities and wider society, and in its aftermath came the cost-of-living crisis and continuing pressures on the NHS and social care. Most services are struggling to respond to current demand resulting in many individuals living with unmet needs especially psychological and social needs. Increasing prevalence of dementia is also likely to drive up demand for services further.
Repeated lockdowns, social distancing, masking and disease control measures introduced to stop COVID-19 from spreading resulted in the widespread loss of work and income for creative arts practitioners, and closures of arts organisations and cultural venues. However, the pandemic also provided new opportunities for participation in creative arts (Bradbury et al 2021). Arts materials, colouring and activity booklets, letters, and postcards were sent to people living with dementia isolating in the community (Armstrong et al 2021), to patients in hospital
while many creative arts practitioners connected with care home residents in care homes online (Tischler et al 2023) including the Dementia Craftists, artists living with dementia. There was an exponential increase in streamed performances of plays, shows and concerts, while museums and galleries sped up the digitalisation of their collections to make these more widely available. Creative arts practitioners amply demonstrated their resourcefulness and flexibility:
Reflection
We spent some time reflecting on the lessons of the pandemic, while with characteristic resourcefulness and resilience creative arts practitioners slowly returned to engaging people living with dementia in arts, music, dance, poetry. Post-pandemic however, the dearth of training and professional development, self-care and support remained acute. Arts subjects in schools, colleges and universities continued to fall out of favour while the absence of a clear education and training pathway into participatory arts with people living with dementia was an additional obstacle for students, and early career practitioners, the much needed practitioners of tomorrow.
CDAN considered how best we could support creative arts practitioners now and in the future. Both Maria and Richard have been involved in working with people living with dementia for almost 30 years and have both developed and led training and professional development courses for arts practitioners. Maria developed and ran FLOURISH, a short course that equips arts practitioners to work with people living with dementia. This will soon be offered as blended learning. Richard continues to deliver dance and movement programmes in the UK and in Europe. Over the years we have both produced subject guides for course members, pulling together a plethora of useful resources and their location (increasingly online) with Maria producing a comprehensive collection of creative arts and dementia resources for FLOURISH. However when we searched for a practice handbook of creative arts and dementia we failed to find one. So we consulted many colleagues about the contents of a practice handbook and gathered feedback from arts practitioners during our online webinars.
Our goal became to produce a “state of the art” good practice learning resource that would serve to update experienced creative arts practitioners, inspire younger generations and inform arts, health and social care commissioners, managers, professionals and care staff about the value of creative arts for people living with dementia. We became co-editors and were fortunate that 25 insightful co-authors agreed to write chapters —including people living with dementia, carers, creative arts practitioners and therapists, managers of arts organisations and voluntary sector organisations, academics, researchers and health professionals.
The state of the art in creative arts and dementia
Here we highlight three areas of change and development that have influenced creative arts and dementia care since 2019:
Policy context
UK healthcare policies are continuing to reallocate more resources from acute medical care to primary and community care, to support the management of long-term chronic conditions (Parkin & Baker 2021). Prevention is a major goal particularly for addressing the social determinants of health via public health education, integration of health and social care, personalisation of care and social prescribing (SP) including SP of creative arts.
The role of arts in western societies has changed and evolved over decades (Belfiore & Bennett 2018) as have views about their value, function and impact. While arts have an intrinsic value, they have long been associated with healing and increasingly used instrumentally to achieve social and economic goals (Mattarosso 1997).
Arts has become part of health interventions across multiple disciplines including medicine, nursing, psychology, and occupational therapy, while the social value of the arts for individual and community development, initially championed by the community arts movement, has become central to place-based health policies aimed at improving population health, reducing health inequalities, enhancing public education about chronic illness and addressing social isolation.
In both spheres, interest in creative arts for people living with dementia has focused on their capacity to address “behavioural and psychological symptoms of dementia”, to reduce anxiety and agitation, lift mood and decrease behaviour that challenges staff (and research reveals this to be the case — e.g. Schneider 2018). This is especially the case in care homes, where training in person-centred care, social engagement and activities was found to improve quality of life, reduce agitation and use of anti-psychotics (Ballard et al 2028) while music therapy (Thompson et al 2023) and dance (Bungay et al 2022) were also reported to be effective for facilitating better health and wellbeing outcomes for hospital patients living with dementia.
In many ways these developments highlight progress in arts for health and wellbeing following the All-Party Parliamentary Group (APPG) on Arts, Health and Wellbeing whose landmark report Creative Health: The Arts for Health and Wellbeing (APPG 2017) aimed to enable health and social care systems to integrate arts in their service provision, setting out the evidence gathered not only from research but also from individuals, groups and organisations about the benefits of arts for health and wellbeing across the life span for all ages and conditions including a key section devoted to arts and dementia. Some of the report’s key recommendations have been actioned, including two new bodies that have been set up to lead work at different levels on embedding creative arts within mainstream health policy and NHS services.
The National Centre for Creative Health (NCCH) was established to lead strategic development work on Creative Health a construct that refers to the use of creative activities to promote health and wellbeing and prevent illness. NCCH’s plans for how creative health can become an integral part of a 21st-century health and social care system were set out in the Creative Review: How Policy can embrace Creative Health (NCCH 2023).The Culture, Health and Wellbeing Alliance (CHWA) is a free-to-join membership organisation for creative health across England that provides support networks and resources for promoting health and wellbeing for all through creative and cultural practice.
The NCCH is working in collaboration with the CHWA, with national Arts Councils, the National Association for Social Prescribing (NASP) and the Baring Foundation and with professional bodies representing arts, music drama and dance and movement psychotherapists’ government departments, the NHS and social care bodies and systems including Integrated Care Boards. The Arts Council of Wales is a partner for the delivery of the Wellbeing of Future Generations Act 2015, while the Arts, Culture, Health and Wellbeing Scotland (CHWS) network leads arts, culture, health and wellbeing initiatives and the Arts Council of Northern Ireland works closely with Arts Care, Northern Ireland’s regional arts health and wellbeing organisation.
Creativity and dementia
We begin our forthcoming book by considering the art of communication, and stress the importance of hearing the voices of people living with dementia who speak and write about their lived experience. Keith Oliver, a poet, writer, artist and campaigner living with dementia, emphasises that it is availability and quality of social interaction and support that enable him to live with dementia and yet to be himself, to have agency, to be creative.
This view challenges the notion of the “gifted creative genius” who develops an original or novel product and makes a significant contribution to public life in the sciences, industry and art. We can also reframe creativity with a big ‘C’ by understanding and focusing on creativity as a process rather than a product (Killick & Craig 2012) and co-creativity as a key aspect of good practice in working with people living with dementia. A study by Zeilig et al (2018) identified several important aspects of working co-creatively, including: levelling power relationships i.e. working non-hierarchically with a focus on the process, sharing the creative task and thus erasing distinctions between the producer (artist) and the participant, noting that improvisation was a key practice skill required for working as co-creators.
Camic et al (2018) noted the heterogeneity of dementia and the differing ways in which individuals shape and mediate the condition, observing that “…even as artistic expression may change over the course of the dementias…and as cognitive abilities decline, there remain possibilities for artistic creativity to develop.”
Furthermore Beghetto and Kaufman (2007) offer a more inclusive lens for viewing creativity in dementia as a creative spark (or mini ‘c’) a concept that refers to novel but personally creative processes, experiences and activities related to learning. Frames of Mind digital artists for example supported care home residents living with moderate cognitive impairment to create digital portraits using a Pro-Create App on their iPads and stop-go animation to tell stories about personally meaningful material objects (Flynn & Chapman 2011) and to sit and pull a cord to activate a camera and take a photograph of another resident.
Everyday creativity (little ‘c’)has become increasingly linked to dementia as it a type of creativity that involves small, everyday actions, ideas, and solutions that are useful and enrich our lives(Bellas et al 2019) many of which occur in various ways during participation in leisure which “enables people living with dementia to sustain their place in the world” (Gray, Russell & Twigg 2023 p.3).
Photograph by Jerry Moran, Oxford
Transient “in the moment” creative experiences are nevertheless authentic experiences that researchers practitioners and relatives have noted (MacPherson et al 2009). In our handbook John, who is living with mixed dementia and is an established painter, reflects on his creativity, suggesting that it aids temporality: “Abstract painting is very much to do with the present. It doesn’t need the memory of trees or people. It is a contemporary act, maybe that’s why it’s become the dominant mode for me, because it’s concerned with the present. Colours don’t have a past. Colours have no memory or history.” (One of John’s paintings is illustrated left.)
Ronald, living with a stroke related dementia declares: “The biggest thing that keeps me going is creative expression through art. Art makes me breathe.”
Creative arts and the workforce
We define creative arts practice as follows:
The purposeful application of person-centred values to creative arts practice which engages with, and relates to, people living with dementia in ways that facilitate meaningful, imaginative and emotional experience and promote health and wellbeing. Creative arts include both direct participation and/or non-direct appreciative involvement in arts, cultural and heritage activities and experiences.
The inclusion of creative and cultural activities reflects the importance of acknowledging that many creative arts provide a medium for participating in an activity that gives access to a culture that may not be familiar, such as museum object handling sessions, or reinforces cultural identity — e.g. the Calypso music of Trinidad, Ska music with roots in Jamaica, or Scottish country dancing. Culture is a major focus of strategies produced by national Arts Councils of England, Wales and Scotland whilst Northern Ireland plans focus on developing a thriving arts sector.
Creative arts include: painting, drawing and crafting, digital arts; music including singing, playing and listening; dance and movement; creative writing, especially poetry; storytelling and reminiscence using prompts such as music, objects, and sensory stimuli. Indirect (appreciative) participation takes place in arts and cultural venues where museum collections, exhibitions, plays, and heritage arts are made more accessible by curating the experience for participants with different needs, abilities and strengths. Many arts venues have become dementia friendly (Allen et al 2015).
Our definition emphasises the values underpinning creative arts and the way they are planned and facilitated by a members of diverse workforce. These include professionally registered creative arts therapists (CATs) including arts therapists, music therapists, drama therapists and dance and movement psychotherapists, and non-therapists who are creative arts practitioners (CPs) activity coordinators, and community artists. There are also staff in arts, health and social care whose job titles may not refer to direct practice but who nevertheless work with people living with dementia using participatory arts. The strategic direction and goals of Creative Health broadly align with creative arts for dementia care. There is merit in being part of an overarching entity and for CATs and CPs to be viewed as part of a larger group of creative health practitioners (CHPs).
A short tour of the Practice Handbook
The handbook has three sections:
Introductory chapters that conceptualise and contextualise creativity arts and dementia and reflect on good practice informed by person centredness, personhood and the Creative Health Quality Framework (CHQF) (CHWA) a set of principles that underpin good practice and enable creativity to flourish.
Creative Practice: the breadth and diversity of the field presented in eleven chapters from many different perspectives. The section ends with a chapter written by the manager and senior staff of large arts organisations who reflect on their experience of the local social prescribing of the arts, and lessons learned.
Informing, Developing and Supporting: in this section the focus is on training and developing the creative health workforce, including self-care and support and guidance for practitioners, an examination of research and evaluation and its importance for practice, then a dive into the working lives of three independent creative practitioners that offers their insights and practical advice.
In many ways the future of creative arts and dementia is here now in the form of increasing prevalence of dementia in the UK and globally. There is increasing need for support particularly psychological and social support, not only for individuals, but crucially, also for family carers. The arts offer many benefits for health and wellbeing, especially hope and a reason to be. That is the message of the book’s final chapter.
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