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

  1. I am not sure I agree with the following rather harsh assertions made by Hannah: “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”.

    The present blog entry fails to place research with people with dementia and the arts into a context. In particular, there is no mention that evaluation and research in this area is in its infancy. I disagree that it is “disjointed” There has been little enough published in this area to be disjointed nor has there been enough research to claim, “there has been little critical evaluation” and it is flat out incorrect that “little work (has been undertaken) exploring the views of people living with a dementia concerning their perceptions of the value of arts and culturally based activities”.

    ~For exmple, no mention has been made of Meet Me at MoMa, the Musuem of Modern Art’s 10 year programme for people with dementia and caregivers. Studies completed in 2011 in singing, and an RCT completed in 2013 also in singing and music, were undertaken with this population and published in peer reviewed journals. Likewise, an Australian study (2009) and UK studies in 2012 and 2013, all occuring in musuems/art galleries, all report views of people with dementia through quotes and qualitative analysis.

    It is equally disturbing to read your comments about the the word “dementia” being a “taboo” or “stigma”. The “curiosity” of the research team is reported as being “piqued” because 2 studies did not endorse the use of that term, and by implication, somehow may have interfered with your project. As someone involved with arts and dementia research at one of the projects I do not recall being asked why we may have objected to the use of it. Let me tell you now: “Dementia” is a syndrome covering several neurological problems.

    As a researcher and clinician I always ask participants and clients how they would like to be characteristed. In my 6-7 years doing arts and dementia work not one person has requested to be described as having dementia. My sample size is limited to about 80 people so in no way representative but part of the point of non pharmacologcal dementia care–which all these projects are–is to look at possibilities that are not based on a medical model of diagnosis. I do not think you appreciate the disstinction. It is not about stiigma. It IS about not being bounded by a diagnosis or reductive terminology. As I understand it, you were given permission to undertake reseach in ongoing projects. It is not for you, as an external researcher, to impose your values on projects you did not initiate, develop or have ethical responsibiliy.

  2. Hannah Zeilig says:

    A quick note in response to Prof Camic’s comments.

    The full literature review that will be part of the final critical report provides a great deal of context and includes reference to the studies he cites. In particular, I have been indebted to the invaluable work done by Prof Camic and his team. I entirely agree that work in the area is in its infancy and it is for this reason that I believe that there are some gaps in the evidence base concerning the value of the participative arts for people living with a dementia.

    Whilst I acknowledge that there are some excellent studies that do incorporate the views of people living with a dementia – especially in the last few years (including important work by Prof Camic), the literature review that I have undertaken indicates that these were unusual.

    Above all, it is important to stress that the research team were not imposing preconceived values on the groups at any time. As soon as any objection to the use of the word ‘dementia’ was articulated, the comic was withdrawn and neither was the word used during interviews with the participants, unless they initiated its use. We understand that the word ‘dementia’ can be a term that is reductive and this led to a lively, interesting debate within one of the projects between the staff, artists and students who had been leading the group.

    I agree wholeheartedly that the fundamental importance of the participative arts for people living with a dementia is that they represent non-pharmacological approaches to a complex condition that must be understood without solely resorting to medical models of diagnosis.

  3. In my 21 years (so far!) of working creatively with people with dementia, writing about the process, and in some instances evaluating other people’s projects as well as carrying out constant evaluations of my own, I have never done other than put the person with the condition first. I would not have got involved with Mark Making if I had not been convinced that this would be the approach followed. Everything I have seen and done in its name has upheld that principle.

    That is not to say that we have not encountered problems: some to do with access, some to do with planning, some to do with language, some to do with the sensitivities of artists, volunteers, relatives, and people with dementia themselves. It is the raison d’etre of this project to report these where they are found and to consider the implications for further endeavours in this fast-developing but still youthful area of arts and health.
    .

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