The arts in dementia care - A Critical Review of cultural and arts practices in dementia care in the UK

Lead Research Organisation: University of the Arts London
Department Name: London College of Fashion

Abstract

It is generally accepted that the 'arts' improve the lives of those who live with a dementia. Consequently there has been a proliferation of arts based activities for people with dementia. However, there has been little or no critical evaluation of these initiatives. Similarly there has been little work exploring the views of people with a dementia who participate in arts activities. This lack of research has resulted in an uncertainty regarding the approaches that may be most effective. The proposed review will provide a corrective to this lack of clarity. The work will supply an analytical overview of the existing arts and cultural interventions that are used in dementia care. It will map some of the approaches being used and the gaps in research and knowledge concerning the use of the arts for dementia care. Above all, it will seek the views of people living with a dementia and integrate these in the final report.

The major outputs arising from the review will include a critical report on current arts based approaches to dementia care that will contribute towards a new critical paradigm for the assessment of arts and culture based approaches to dementia care. In addition, the review will articulate the perceptions of people living with a dementia concerning the value of arts and cultural interventions to their well-being and health and these views will be central to the re-appraisal of prevalent assumptions about the benefits of arts and culture in the lives of those living with a dementia. An additional major output from the 6 month project will be the development of a dedicated website that disseminates findings in accessible language and therefore reaches beyond academic boundaries to people living with a dementia, their carers and the dementia care workforce.

The project will benefit from a uniquely qualified inter-disciplinary team comprising: the PI - Dr. Hannah Zeilig (a research fellow at both the University of the Arts, London and the University of East Anglia) who has over two decades of experience as a gerontologist and has used numerous arts based approaches with people living with a dementia; Chris Fox who will provide clinical/research guidance and is a leading international dementia researcher and consultant old age psychiatrist and the input of the innovator and pioneer of arts based approaches to dementia care: John Killick.

Planned Impact

Impact Objectives:
The long-term aim of this initially small-scale critical review is to fill a significant gap in the current knowledge base concerning the role of arts and culture in the lives of people living with a dementia. The critical review will therefore have a significant and far reaching potential impact because it will draw together existing knowledge on the role of the arts and culture in dementia care and also investigate the views of some of those participants living with a dementia who take part in arts and cultural activities.

Who will benefit from this research?
It is unlikely that the critical review will immediately lead to the establishment of a fully-formed critical paradigm. However, by addressing a range of key questions concerning the role that arts and culture play in the lives of people living with a dementia and through involving interdisciplinary and cross-sectoral discussants and those who live with dementia; it is expected that critical dialogue will be stimulated between lay, provider and specialist participants. In particular:
i) Diverse UK charities would benefit directly from this review (including: Ladder to the Moon, Arts 4 Dementia, Dementia Care Matters, Arts & Dementia network).
ii) Those engaged in creating 'dementia friendly communities' would learn from this work as would those who are developing 'dementia friends and champions' (including the Alzheimer's Society).
iii) People living with a dementia and their carers would benefit.
iv) Museums, art galleries and theatres that promote arts and culture for those with a dementia would gain from a critical understanding concerning the impact of the arts on people living with a dementia,
v) Professional artists and performers who have been working with people living with a dementia would gain from an enhanced consciousness of the views of people living with a dementia about arts based interventions.
vi) Medical and health professionals will benefit from an enhanced reflexivity and critical awareness of the role of arts and culture in dementia care.
vii) Policy makers who are planning the development of services for and communities amenable to people with a dementia will be able to take the fruits of this research into account.

There will be further specific benefits to this research. One objective of the critical review is to contribute to a framework for identifying, defining and evaluating some of the components of cultural value. This 6 month project will pinpoint some of the central advantages and disadvantages of arts and culture based approaches to dementia care. The development of a website for the project will ensure a source of open-access information and a forum for dialogue that is directly available to policy-makers within international, national, local government and voluntary sector bodies. The dedicated website will draw together and place in dialogue a broad range of people who are involved in various ways with arts and culture in dementia care and will be designed to reach beyond academic boundaries. It is expected that the critical review will contribute to improving social welfare and public services by enhancing knowledge and improving understanding about the arts based approaches that are most effective for people living with a dementia. The benefits of arts and cultural activities for mental health, including conditions like dementia, are not as well understood as in other areas (such as in secondary health care). The critical review would therefore address this lacuna in knowledge by adding to the evidence base in this area.

It is expected that the impact of the review would be long-term and disseminated by the publication of peer-reviewed articles (in Dementia, Ageing and Society, International Journal of Ageing and Later Life, The Medical Humanities) and conference papers (including at British Society of Gerontology annual conference and Royal College of Psychiatry).

Publications

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Zeilig H (2016) Mark Making: Methodologies and methods (innovative practice). in Dementia (London, England)

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Zeilig H (2014) The participative arts for people living with a dementia: a critical review in International Journal of Ageing and Later Life

 
Title Comic or graphic pamphlet 
Description For Mark Making we worked with graphic artist Keara Stewart to create a comic explaining the project this was specifically aimed at people with a dementia who might decide to participate. The comic outlines the sorts of questions we hoped to ask and the questions that would not be asked including anything that involves personal or private information. 
Type Of Art Artwork 
Year Produced 2013 
Impact During the Visual to Vocal project at Dulwich Picture Gallery, copies of the comic were placed on every table during the final session. Every copy was taken by somebody present (carer or person living with a dementia or staff / artist on Visual to Vocal). The non-threatening playful nature of the comic enabled people to approach us with direct questions about Mark Making. It is perhaps no coincidence that everyone present (those living with a dementia, their carers and the artists and staff of Visual to Vocal) completed questionnaires. 14 people with a dementia answered the questionnaire in total and the research team felt that having a tangible item that presented information about the study in colourful and graphic form helped ensure that people were well informed about the project. 
URL http://markmaking.arts.ac.uk/methods/
 
Title Visual accounts of the participative arts projects 
Description Two graphic artists - Keara Stewart and Abigail Jones, accompanied the PI to two of the participative arts projects and recorded their impressions of the way in which the projects were engaging people with dementia. These visual representations add original and important insights that are occasionally appropriately quirky to the more traditional written account in the report. 
Type Of Art Artwork 
Year Produced 2014 
Impact The drawings and associated text give a richer picture of how the arts projects engaged with people with dementia. When these are presented in lectures the audience responds with empathy and warmth in ways that traditional accounts cannot achieve. 
URL http://markmaking.arts.ac.uk/2014/02/19/visual-to-vocal/
 
Description Mark Making has investigated ways in which a wide variety of artists have been working with people with a dementia. The questions central to Mark Making included: What is the value of the arts for people living with a dementia? How can the opinions and views of people living with a dementia be privileged? How should arts projects be evaluated? How can arts projects for this population be strengthened? These questions have been addressed by analysing the extant literature and also by working with a number of arts projects and seeking the views of participants, artists and staff alike. Reliable knowledge about the syndrome dementia remains limited and the reasons governing human engagement with the arts are notoriously hard to unravel. Therefore the insights from Mark Making are offered as provisional rather than certain. Above all, we have endeavoured to clarify the questions rather than to provide answers.
Exploitation Route Participative arts projects for people with dementia may be strengthened by knowing some of the aspects that are most valued by participants. Policy makers will have a fuller understanding about the role and value of arts projects for people with dementia. Biomedical knowledge about dementia may be enhanced with insights into the creativity and embodied abilities that remain for people living with a dementia and that can be accessed by the participative arts.
Sectors Communities and Social Services/Policy

Creative Economy

Healthcare

Other

URL http://markmaking.arts.ac.uk
 
Description The literature review that formed part of this award has already been useful for others who are exploring the role of the arts for people with dementia, in particular those on the 'Dementia and Imagination' project. During presentations on the project, there has been a great deal of interest in the innovative methods used for eliciting informed consent (in particular at the international conference in Linkoping University, Sweden). The executive director of Alzheimer's International is exploring possibilities of extending the Mark Making map so that projects across Europe and North America are included. The department of health team 'action against dementia' have expressed interest in exploring the role of the arts for people with dementia as a result of this project.
First Year Of Impact 2014
Sector Communities and Social Services/Policy,Healthcare,Culture, Heritage, Museums and Collections
Impact Types Cultural

Societal

 
Description Development of a practice guide - Becoming a dementia friendly arts venue
Geographic Reach National 
Policy Influence Type Influenced training of practitioners or researchers
URL https://www.alzheimers.org.uk/site/scripts/download_info.php?downloadID=1747
 
Description Meeting at Baring Foundation to discuss arts for dementia friendly communities
Geographic Reach National 
Policy Influence Type Contribution to a national consultation/review
 
Description Member of the research team 
Organisation National Institute for Health Research
Department ESRC-NIHR Dementia Research Initiative
Country United Kingdom 
Sector Public 
PI Contribution I worked with Chris Fox, a consultant old age psychiatrist and helped him question the biomedical model of dementia. I also worked closely with John Killick (internationally renowned innovator in dementia care using the arts).
Collaborator Contribution Chris Fox provided expertise concerning how to structure a questionnaire for people with a dementia and also put me in touch with many relevant academics and policy makers through his extensive network. John Killick provided detailed guidance on many aspects of the research process, including how to work with people with a dementia in the community.
Impact A questionnaire designed to explore the role of the arts for people with a dementia. A dedicated website: http://markmaking.arts.ac.uk A peer-reviewed article that has been accepted for publication. The disciplines involved in this collaboration were psychiatry and the arts.
Start Year 2011
 
Description Member of the research team 
Organisation University of East Anglia
Department School of Medicine UEA
Country United Kingdom 
Sector Academic/University 
PI Contribution I worked with Chris Fox, a consultant old age psychiatrist and helped him question the biomedical model of dementia. I also worked closely with John Killick (internationally renowned innovator in dementia care using the arts).
Collaborator Contribution Chris Fox provided expertise concerning how to structure a questionnaire for people with a dementia and also put me in touch with many relevant academics and policy makers through his extensive network. John Killick provided detailed guidance on many aspects of the research process, including how to work with people with a dementia in the community.
Impact A questionnaire designed to explore the role of the arts for people with a dementia. A dedicated website: http://markmaking.arts.ac.uk A peer-reviewed article that has been accepted for publication. The disciplines involved in this collaboration were psychiatry and the arts.
Start Year 2011
 
Description Keynote paper at British Library 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Public/other audiences
Results and Impact This was a public event and a wide range of people attended. A great deal of discussion was stimulated.

I was asked to make a film about my research and have also been invited to participate in a special themed issue of the journal 'Working with Older People'.
Year(s) Of Engagement Activity 2014
 
Description Lecture on ethics to MA students at University of the Arts, London 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach Local
Primary Audience Postgraduate students
Results and Impact Over 60 postgraduate students attended this discussion and it provoked heated debate about what might be considered ethical behaviour in research, especially when working with vulnerable groups such as people with dementia.

Many students evaluated the session positively and asked for further details about how to gain informed consent in research and how to design ethical research projects.
Year(s) Of Engagement Activity 2014
 
Description Medical Humanities seminar King's College London 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Postgraduate students
Results and Impact Approximately 15 postgraduate students from the Medical Humanities at King's College London and from other universities, including Manchester University attended a day long seminar that explored ways of thinking about and working with people who live with dementia. The subsequent discussion was lively and has directly led to my collaboration with Dr Lucy Burke.
Year(s) Of Engagement Activity 2014
 
Description New Economics Foundation 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Third sector organisations
Results and Impact I was invited to give a keynote presentation to a group of up to 100 people involved with using the arts for people living with dementia. The questions that followed were provocative and have led to my engagement with a theatre company devising plays for people with dementia.
Year(s) Of Engagement Activity 2015
 
Description Presentation at conference 'Life with dementia: relations' in Sweden 
Form Of Engagement Activity A talk or presentation
Part Of Official Scheme? No
Geographic Reach International
Primary Audience Other academic audiences (collaborators, peers etc.)
Results and Impact At least 50 international colleagues, academics, practitioners and educators attended the presentation and a heated debate ensued concerning the role and value of the arts for people with dementia.

Various members asked for copies of the 'comic' that had been used in the project and have subsequently been in touch to discuss methods of gaining informed consent from people with dementia.
Year(s) Of Engagement Activity 2014
URL http://www.isv.liu.se/ceder/ett-liv-med-demenssjukdom-relationer-konferens?l=en