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

19

‘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

Advertisements

Stephanie Pitts – Dropping in and dropping out: understanding cultural value from the perspectives of lapsed or partial arts participants.

I have been interested in musical participation for some time (see Pitts, 2005), and have carried out a number of case studies that have investigated the experiences and motivations of amateur performers and composers, and of regular audience members at jazz and classical events. While the richness of participants’ musical experiences is always fascinating, and the social and personal satisfaction that they gained from their involvement demonstrates ‘cultural value’ in everyday life, the question that has increasingly troubled me is “If musical participation is so great, why aren’t more people doing it?”

Previous researchers have identified a sector of ‘culturally aware non-attenders’ (Winzenried, 2004; Dobson & Pitts, 2012) – people who are receptive to arts involvement, but are currently minimally engaged. These people seemed like the ideal starting point for an investigation of cultural value ‘from the edges’: being well-disposed towards the arts, they might be willing to contribute to the research, but being minimally involved, their perspectives on arts engagement might be different from regular participants, so shedding light on what makes one person join a choir or go to the theatre while another in similar circumstances uses their time and energy differently. The next challenge, then, was where to find such people…

With my research assistant, Katy Robinson, I have embarked on three interlinked studies of lapsed and partial arts involvement. The first of these (confusingly labelled Study 2 in my initial planning) is a questionnaire survey of arts audiences in Sheffield, in which we ask respondents about their knowledge and experience of a range of arts, genres and venues, and also to describe and evaluate their most recent arts attendance. Thanks to interest from cultural venues in Sheffield, we hope to extend this study to include an ‘audience exchange’ element, where regular concert goers, for instance, will be taken to some contemporary theatre and then join a focus group to discuss their experience of being in an unfamiliar audience. We have been distributing flyers for our survey at cultural events around the city, through mailing lists and social media, and are so far receiving a steady flow of interesting responses, to be followed up in the new year with Study 3: life history interviews with a range of survey respondents to explore their varied routes into adult arts engagement.

Finally (rather than first) we have Study 1, or ‘the violin in the attic’: here we are interested specifically in music, and in those amateur musicians who have ceased to play or had a long gap in their membership of choirs and ensembles. We’ve begun this study with a pilot that follows up on Katy’s MA research, and that of her classmate at Sheffield, Kunshan Goh: both of them completed dissertations looking at musical participation in adulthood, and so we are returning to some of the ensembles that they worked with to seek out members or ex-members who have stories to tell about dropping in and out of ensembles. We are also beginning to approach other ensembles, to ask their members to complete short questionnaires about their current involvement, and to help us recruit lapsed musicians amongst their former members or from their own past experience.

Our data collection is in its early stages but progressing well, and we hope that our findings will help broaden the debate about what ‘cultural value’ means from a range of peripheral perspectives, from lapsed arts participants to occasional arts attenders, and so to bring new insight to what is already known about the use of the arts in everyday life.

You can keep up with our progress on the Sheffield Performer and Audience Research Centre website http://www.sparc.dept.shef.ac.uk/