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

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Samuel Ladkin: Against Value in the Arts

Against Value in the Arts

“Claims for the high morality of art may conceal a deep horror of life. And yet nothing perhaps is more frivolous than that horror, since it carries within it the conviction that, because of the achievements of culture, the disasters of history somehow do not matter. Everything can be made up, can be made over again, and the absolute singularity of human experience – the source of both its tragedy and its beauty – is thus dissipated in the trivializing nobility of a redemption through art.”

Leo Bersani, The Culture of Redemption

“Against Value in the Arts” sounds like a counter-intuitive way to go about describing and defending the value of the arts. The project proposes, however, that it is often the staunchest defenders of art who do it the most harm, by suppressing or mollifying its dissenting voice, by neutralizing its painful truths, and by instrumentalizing its potentiality, so that rather than expanding the autonomy of thought and feeling of the artist and the audience, it makes art self-satisfied, or otherwise an echo-chamber for the limited and limiting self-description of people’s desires.

This project does not argue that the arts have no value: quite the opposite. It argues instead that value judgments can behave insidiously, and incorporate aesthetic, ethical or ideological values fundamentally opposed to the “value” they purportedly name and describe. It argues that even the most ostensibly virtuous of values can become oppressive when disseminated bureaucratically, and as a set of official renderings or statements of artistic accounts. This is the prevalence of an audit culture.

“Against Value in the Arts” argues that the greatest possible value of the arts has been, and might continue to be, to oppose, rigorously and constitutively, dominant and dominating ascriptions of value. “Against Value” proposes that the best way to engage critically with our society is to suspend presumptions of value, to propose an incommensurability, the critique of any “common measure”, even if that common measure pretends to be as neutral as “value”. It seeks to antagonize questions about who gets to ascribe value, and how, and to interpret those ascriptions ideologically.

“Against Value”, which will culminate in a short monograph and an edited collection of essays (co-edited with Robert McKay (Sheffield) and Emile Bojesen (Winchester)), includes thinking about five iterations of against value: 1. against value as a pragmatic recognition of the harm the auditing of value can cause, 2. against value as a critique of the ideology of value 3. against value as a particular kind of making, that is, a preference for bad, wrong, hateful, or failing work. 4. against value as the critical function of art; 5. against value as irrecuperably against value, that is, by thinking through negation (Adorno) or impoverishment (Bersani). Throughout, the project is informed by Jacques Rancière’s reading of “dissensus”, the interpretation not of conflicts of received values, but instead engaged in a “dispute over what is given”.

The quotations that open and close this post provide something of a bookend for my thinking on the project. From the first by psychoanalytic critic Leo Bersani I take a deep suspicion of the redemptive claims made for art, and suspicion of the motivations of those who make such claims. The second is from the social anthropologist Marilyn Strathern whose reading of audit cultures as bad ethnography substantially motivated the first iteration of the Against Value project at the University of Sheffield in 2012. Here it is the great precision of the words “against” and “despite” to which I draw attention. Firstly, there is an imperative here to suspend instrumentalizing our knowledge as though it were sufficient or complete, or in fact could ever be sufficient or complete, whether that is in the description of people and their values, or in the description of their potentiality. Secondly, and in a way that also suggests dissensus, we might resolve to maintain commonality amongst cultural difference, and the potentials within cultures, by conceptualizing that commonality “despite” all descriptions. This can be figured as neither an intrinsic, instrumental, nor exchangeable value; its only commonality is negative.

“I like to think that anthropologists could assert the potentials there are in being human against everything they know about people, individually or collectively, and against how they form particular social relationships[…] I suspect we do not really want our descriptions of ourselves to become true; we hope they are partial enough to hold out promise of better things. No particular description is in any case adequate to the possibilities human beings are capable of, any more than any particular set of relations encompasses people’s capacity for social life. So anything we might use in claiming common humanity is just that: a claim. Rather than redescribe the world in order to find humanity within it, one might wish to conserve the concept beyond and outside descriptions of it, and even despite them.”

Marilyn Strathern, Shiftng Contexts: Transformations in Anthropological Knowledge 

Miriam Bernard: Ages and Stages

‘Cultural value can mean what you want it to mean and can mean nothing’

‘Cultural value? You can’t put a price on it, but you can buy a ticket for it although you don’t know what you’ll get!’

These are just two very preliminary thoughts expressed by a couple of participants in our ‘Ages and Stages’ project. We are delighted to have two awards under the Cultural Value Project: one exploring the cultural value of older people’s experiences of theatre making, and the other, a linked critical review on ‘Ageing, Drama and Creativity’. Both have been inspired by the continuing collaboration between researchers at Keele University and practitioners at the New Vic Theatre, Newcastle-under-Lyme. Their roots stretch back to 2004/5 when, with local funding, we mounted a small project which brought older people together with members of the New Vic’s Youth Theatre to explore what life was like for both groups. The resulting intergenerational performance piece – ‘Stages’ – was performed at two conferences and, ever since then, we had been looking for a suitable opportunity to do further work together.

However, it wasn’t until we received funding in 2009 under the national cross-council New Dynamics of Ageing programme (see: www.newdynamics.group.shef.ac.uk/), that we were able to realise this opportunity. Between October 2009 and July 2012, our interdisciplinary team explored historical representations of ageing within the Vic’s well known social documentaries and interviewed 95 older people who had been involved with the theatre as volunteers, actors and employees, audience members, and sources for the documentaries. That initial research was drawn together to create a new hour-long documentary drama called Our Age, Our Stage and the associated Ages and Stages Exhibition. This was followed by a year of knowledge translation activities in which we were able to establish the Ages & Stages Company; devise and tour a new interactive forum theatre piece: Happy Returns; develop, deliver and evaluate a pilot inter-professional training course; and scope out, with a range of partners, the potential for a Creative Age Festival in Stoke-on-Trent and North Staffordshire.

But what has all of this been like for the older people who have participated, since 2009, in what is now the Ages and Stages Company? What do they make of their experiences of theatre making – especially given the fact that, for many of them, this was the first time in their lives they had ever been on stage? And what meaning, if any, does that phrase ‘cultural value’ have for them? This is what our small ‘case study’ of ‘Ages and Stages’ is trying to uncover. We have also been going back to our original interviews with Company members and – this is the new and exciting bit – ‘training’ and supporting them to interview each other about their experiences. By the time you read this, Company members – who by the way are aged from their sixties to their mid-nineties – will have completed a series of recorded research discussions exploring the impact ‘Ages and Stages’ has had on themselves, and on others (e.g. their families; friends; the younger people they have performed with). In the New Year, the Company will be back together to co-evaluate the research process with us; to look at the transcribed interviews and begin to select and agree the issues to be developed into a new piece – or pieces – designed to show, through live performance, the cultural value of what they have been involved in.

We are setting these explorations in the wider context of a critical review which will examine both the published and ‘grey’ literature in this area. What, we are asking, does the research and literature tell us about the cultural value older people derive from their involvement with theatre in general and theatre-making in particular? What conceptual and theoretical frameworks, if any, have been used to research older people’s experiences of theatre/theatre-making? And, what methodologies and research designs have been employed in existing studies?

We are approaching both the review and the empirical work from our roots in critical gerontology and in participatory drama-based practice, and from a shared commitment to what colleagues Meredith Minkler and Martha Holstein in the United States have termed ‘passionate scholarship’. This provides an important corrective to the negative and ageist assumptions which pervade our society and which, more often than not, frame older people as a ‘problem to be solved’ rather than recognising, acknowledging and building on their skills, abilities, contributions and life experiences. Our ongoing work is, we hope, a small contribution to challenging stereotypical views and existing deficit models of old age and the ageing process. We will be showcasing the results at a workshop/symposium at the New Vic on May 9th 2014 as a stimulus to further discussions with an invited audience of older people, practitioners, policy makers and academic colleagues. If you’d like to find out more about what we have done so far, you can go to our website (www.keele.ac.uk/agesandstages/) and/or we can send you packs which include DVDs of our productions to date. If you’d like to be put on the invitation list for the symposium, please contact our Administrator Tracey Harrison on t.l.harrison@keele.ac.uk