Hannah Zeilig: The arts in dementia care – A Critical Review of cultural and arts practices in dementia care in the UK

Mark Making: Exploring the value of the arts for people living with a dementia

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‘Dementia’ is a condition or syndrome that is elusive and defies any facile definition; it has become a fear-laden term that encapsulates society’s worst terrors. Despite the general lack of consensus about what dementia ‘is’ in neurological terms, there is agreement that dementia is a long-term medical disability. To this end, there are regular reports in the media and elsewhere concerning the prevalence of the condition both in the UK and globally. The recent G8 summit highlighted the importance of countries working together to find a cure for the condition.

However, at the present time finding a cure or even effective drug treatments is proving elusive. In the absence of appropriate pharmacological interventions the social conditions in which those with a dementia live also need urgent attention. Pioneering work by researchers and practitioners has contributed to the understanding that although Alzheimer’s and other dementias may be incurable at present, they are conditions that can be treated and that treatment always includes more than drugs.

This is the socio-political context that has led to a burgeoning of arts and cultural initiatives for people living with a dementia. These initiatives are diverse and include (to name a few) music and drama groups, creative writing programmes, dance groups, painting classes and visits to art galleries. There are also a number of organisations that have emerged in the past decade that have a specific focus on using the arts with this population. These organisations and initiatives reflect a prevalent assumption that the arts and culture play an intrinsically positive role in the health and wellbeing of people living with a dementia.

However, there has been very little critical evaluation or review of these initiatives and interventions. Indeed, the evidence base relating to the real and measurable benefits from cultural activities for people with a dementia remains disjointed. Similarly, there has been little work exploring the views of people living with a dementia concerning their perceptions of the value of arts and culturally based activities.

Mark Making aims to extend and strengthen the knowledge base concerning the efficacy of arts-based approaches for people living with a dementia. The question guiding the project is:

            ‘What is the value of arts and culture for people living with a dementia?’

This question is being explored using a range of methods, including a comprehensive literature review.

In addition, the project team has spent time with the artists and participants of three arts based projects:

  •          Visual to Vocal at Dulwich Picture Gallery
  •          Music for Thought run by Westminster Arts
  •          Verd-de-gris in Hebden Bridge.

These projects all used a multiplicity of arts activities including visual art, art making, music making and poetry.  The two London based projects were led by professional artists (from the Royal Academy of Music and English Touring Opera) and took place in an art gallery and Wigmore concert hall. Verd-de-gris in Hebden Bridge is a smaller scale project that takes place in a town hall. The projects are representative of the varied range and scope of participative arts initiatives for those with a dementia; some of which take place in rural locations on minimal budgets and others (the majority) that are located in London or other major urban centres. In addition, although the London projects were better resourced, securing funds for future projects was an abiding preoccupation for all the groups.

A duet in Dulwich Picture Gallery (part of the Visual to Vocal song cycle)

A duet in Dulwich Picture Gallery (part of the Visual to Vocal song cycle)

Despite differences in funding and resources all of the groups were characterised by the energy and enthusiasm of the leading artists and their active engagement with participants.  As one participant exclaimed during a group ‘Enjoy the day’; she certainly was.  The importance of collaborating with participants living with a dementia to ascertain their views and opinions is a preoccupation for the Mark Making project team. However, pragmatic difficulties have been encountered. These are related to the teams’ problems with developing trusting relationships with individuals in very short spaces of time.  Despite these issues, several in-depth interviews have been carried out and a number of questionnaires have been completed.

Mark Making has used novel methods. A graphic artist helped create a comic explaining the aims of the project to participants living with a dementia. This was extremely well received in one project (where copies were all taken by participants and artists) but the investigators were asked not to distribute it in two projects due to sensitivities about using the term ‘dementia’.  The taboo and stigma associated with the word dementia (even within arts projects designed specifically for those living with a dementia) has piqued the curiosity of the project team.  Above all, it was unclear who felt uncomfortable with the word (carers? project leaders? artists?); as in conversation with the investigators several participants referred loudly and openly to their diagnosis.

Mark Making is ongoing – the final report will be complete by June. It is therefore not yet clear what the recommendations will be. However, the team expects to contribute to the wider cultural value project in several ways:

  •         By capturing and questioning tacit assumptions about the inherent value of arts and culture for people living with a dementia.
  •          By advancing the ways in which we think about and discuss the value of the arts and culture in the UK both generally and specifically in relation to their role for people living with a dementia.
  •          The literature review and study of the projects is beginning to synthesise the disjointed evidence base regarding the use of arts and culture for those living with a dementia.

Please read more about our work here:

http://mmaking.co.uk

Michael Eades: Bloomsbury Festival in a Box – Engaging Socially Isolated People with Dementia

Dementia has been in the news in a big way over the past week. Tuesday the 11th of December saw the first ever G8 Dementia Summit opening in London, with a headline grabbing promise from David Cameron to double funding for dementia research by 2025. This follows similar promises of urgent action on dementia put forward last year in the Prime Minister’s Challenge on Dementia, which in fact promises (rather more generously) to ‘[m]ore than double […] overall funding for dementia research to over 66m by 2015’.

Dementia, its treatment, prevention, and (one day, we might hope) ‘cure’, has shot up the national agenda over the last few years. In the process, a discourse has developed around the topic which—as is so often the case with discussions of culture in the public sphere—has drawn upon largely economic measures of value. A language of costs, budgets, investments and returns has shaped the media headlines over the past week, matching the immensity of the social ‘problem’ of dementia with talk of eye-wateringly (and eye-catchingly) huge sums of money.

As part of the Cultural Value Project, our research has a stake in these discourses. From July onwards we have been working on an initiative entitled ‘Bloomsbury Festival in a Box: engaging socially isolated people with dementia’. On a basic level, this project aims to take a peripatetic version of the Bloomsbury Festival—a community focussed arts festival in the heart of London—out to local residents unable to leave their homes and engage with it directly. Specifically, we have been working closely with Age UK Camden’s Dementia Befriending Service, and with the Faculty of Brain Sciences at University College London, to develop and analyse a cultural outreach for those living with dementia.

The idea here is to offer a chance for such people to engage not just in the reception, but in the collaborative creation of cultural experience. Working with Age UK Camden, and with a pool of Bloomsbury Festival artists, we have initiated a programme of weekly visits that take a number of specially designed Festival Boxes out to people’s homes. Each weekly visit comprises a short cultural activity designed to prompt reminiscence—singing, painting, ceramics work, a poetry recital or writing workshop—followed by a short narrative interview reflecting on the experience. Visits are audio-recorded, and a quantitative single-question happiness measure is also taken at the beginning and close of each session. All artists and researchers also keep research journals reflecting on their experience.

Over the course of the project, each of these Festival Boxes has developed into a unique cultural experience. They have become a personalised ‘archive of engagement’ for each participant, and this has allowed us to respond sensitively to the participants’ needs, and to focus on what Tom Kitwood (1997) has famously described as ‘the personhood of people with dementia’. The Festival in a Box project has therefore developed opportunities for reminiscence and narrative storytelling, but also offered an opportunity for analysing the core value of cultural experience itself. By working with participants who, as a result of their memory loss, tend to experience cultural engagement ‘in the moment’, within a disordered narrative present, we have been able to gather valuable material on the affective experience of culture amongst a traditionally ‘hard to reach’ population.

The project is now moving towards its concluding stages, in which the transcribed data gathered from our visits will be analysed via a series of close textual readings across our research team. As well as offering valuable research data, this project will also provide an opportunity for reflecting upon the ‘value’ of socially isolated people within a ‘cultural’ context. It will provide a means through which—we hope—to reintegrate the stories of those living with dementia into the broader narrative of the Bloomsbury Festival, of Camden, and of London itself.

Reflections on the course of the research so far can be found on the dedicated project blog: http://blogs.sas.ac.uk/category/bloomsbury-festival-in-a-box/