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Mark Making: An Experience of Dementia and the Arts by Hannah Zeilig

28 Apr, 15 | by BMJ

Rose sensed that I was nervous. My façade of confidence was not convincing, I was holding my papers a little too defensively across my chest and my shoulders were tense. I stood awkwardly at the edge of the circle of people, feeling outside their camaraderie. It was strange but also salutary to feel an outsider amidst a group of people with dementia. Instinctively, I wanted to make a note about this. However, the point of the day was that I should participate so reluctantly and feeling slightly naked I put my notebook down. I wondered how I could remember without notes. If we are our memories, then I am contained in small black notebooks. Then Rose made her well timed move. Loudly pushing her chair away she stood up and came to embrace me. ‘Enjoy the day’ she exhorted me loudly in a rich Jamaican voice. Rose’s warmth dissolved my hesitations. I began to understand that I might not need my notebooks here and that I would remember ‘feelingly’ to borrow a phrase from King Lear.

 

From this point onwards, I joined the music making, art viewing or tea drinking: all activities that were integral to the participative arts projects that I worked with during Mark Making. This AHRC funded project was an exploration of the participative arts for people with dementia. In the last decade, arts activities for people living with dementia have flourished; these include singing, drama, painting, photography and puppetry (to name a few). The context for this burgeoning interest in the arts and dementia includes a widespread awareness that in the absence of cures, interventions that emphasise quality of life are important [1]. Despite being a small-scale project Mark Making tackled some big, existential issues. These include what we mean when we refer to ‘dementia’, what we think the ‘arts’ are and can do and what value means in the context of the arts. Of course we do not have satisfactory answers and this was never our goal. However, it was through actively participating in arts projects that we came closest to asking the right sorts of questions.

 

Putting aside pens and digital recorders helped me shed my own assumptions and enter the moment creatively with others there. I was too occupied attempting to singing notes in harmony or exploring John Van Ruisdael’s Waterfall to do anything other than feel the presence of other participants intuitively. In a brief period, my identity as a researcher and reliance on analytical, cognitive skills to investigate how the arts ‘work’ disappeared. I noticed that other group members, the majority of whom were living with some form of dementia, were perceptive about my feelings and could sense when I felt hesitant about singing out my name or using a shaker. On one memorable occasion, during a session of music making Edith showed me how to use the shaker. She took it from me to demonstrate and said laughingly: ‘The shaker will be your best friend.’

 

Due to past experiences of working with people with dementia, I knew that when I engaged attentively with individuals I was able to learn a lot about their feelings and experiences. I have also spent time educating the dementia care workforce, students including medics and nurses and the general public in an effort to dispel the prejudices that continue to cloud our collective vision about dementia. Until I worked closely with the arts projects that I was also researching, I did not suspect that I still had my own prejudices concerning what people with dementia can do.

 

However, by becoming part of the sessions that I attended I began to understand the creative process in way that was embodied rather than solely intellectual. Along with other participants I experienced how the arts projects provided an opportunity to become part of an alternative group that was engaged in a structured activity distinct from the everyday routines that define normal life. Thus living with dementia became a social experience (as opposed to an isolated, singular experience).

 

During the focus group one participant eloquently articulated his sense that he was part of a group:

‘We became a little group within ourselves. …’

In addition, the security of being part of this new group was evident, as the same respondent noted:

‘It wasn’t only me, there were other people’.

The sense of collective identity that to some extent afforded participants (and myself when I was there) a sense of camaraderie mirrors observations by other researchers that supportive social contexts can promote identity adjustment.

However, attending a public concert in the Wigmore Hall with the group of participants from Music for Thought really challenged my preconceptions. Despite my lively imagination I could not quite predict how the diverse group of individuals would experience the concert. There were practical issues including how we would physically access the concert hall with our group, some of whom walked with several canes, others who were without language but prone to making unexpected sounds and others who needed the toilet at regular intervals. The pre-concert meeting with tea proved essential. This allowed us all to gather and reconfigure ourselves as a ‘group’. I spent time with Harold who treated me as both a co-conspirator and later as his date. He called me his gal. I felt delighted as he held my arm proprietorially in the concert hall.

 

There was some anxiety about ensuring that everyone was able to get upstairs into the main concert hall and find their seats before the concert began. The concert was a formal event, performers were in suits and ball gowns and it consisted of a song cycle based on Goethe’s poetry set to music. To my surprise and delight the group seemed able to concentrate throughout the performance (in some cases better than myself); there was a tacit understanding about how to behave in this environment.

 

This event demonstrated the ability that some people with dementia have for participating in cultural events, even those living with a fairly advanced dementia. The grandeur of the setting, the emotions expressed by the performers, the vibrations of the music which could be felt physically as well as aurally, combined to create a space in which the condition dementia was less relevant than the sense of being present in the musical moment. Even if there were moments when those with dementia were not fully engaged it seemed a more appropriate activity than, for example, watching TV. This is because it was a form of living communication that was facilitated by the immediacy of the performance. In addition, the equality of simply being part of a concert-going audience was noticeable.

 

Concluding thoughts

Mark Making demonstrated that the participative arts groups stimulated a distinct social experience, one that was partly connected with a shared identity but that was also characterised by an ability to transcend the habitual constraints that define life with a dementia. I felt lucky to be able to learn from those people with dementia that I worked with and humbled by how much I am also hampered by judgements and assumptions. However, I am heartened by the ability of the arts to dispel stigma by uniting groups of people who are otherwise disparate in generation, gender, occupation and physical or mental health. After all, the arts rely on taking a broad, imaginative view – appreciating context and privileging feelings rather than relying on certitudes. Living with uncertainty is something we should all aspire to, as it is a fundamental part of life whether you have dementia or not.

Reference:

  1. Zeilig, H., J. Killick and C. Fox (2014). “The participative arts for people living with a dementia: a critical review.” International Journal of Ageing and Later Life: 1-28.

Further Information: http://markmaking.arts.ac.uk

Correspondence:

Dr Hannah Zeilig

University of the Arts, London

h.zeilig@fashion.arts.ac.uk

 

 

 

James Poskett: Material and visual culture of conferences

9 Dec, 11 | by James Poskett

Conferences can be somewhat dry affairs. Papers delivered as long droning monologues are liable to send even the most hardened academics into a dreary stupor. The more enticing discussions can also take their toll as the days wear on, debate often returning to ancient disputes. So what better way to break up the day and keep everyone fresh than with an outing to the cinema?

At the recent Communicating Reproduction conference we were all sent to see Helga (1967). Of course, this outing wasn’t frivolous but rather an opportunity for us to engage with the substance of the conference: the history of reproduction through communication including text, images, film and sound.

more…

Singing for the Motherland, Singing Medicine’s Cure.

4 Jun, 11 | by Ayesha Ahmad

A recent evening attending a live Greek music ensemble revealed some important characteristics about human nature; and significances for medicinal practices about the interconnectedness of our human condition with the Land on which we are born, live, love, suffer, and die.

The words of the song bore no meaning until my friend kindly whispered its translation, and then, suddenly I could understand the deep, lonely sentiments conveyed by the singer’s gaze and harmonies.

The song spoke of the distress of having to migrate from Greece during the 1960’s, forging his adoration to the land from where he was borne with the endearing reference of “Mother-land”.

For so much of medical practice, the gaze is on the life as it is now. We often, carelessly, forget that the origins of where we once were endured the beginning of our story, and carved the paths within our bodies towards both our health and our illness.

more…

Dr Ciraj A.M. writes about ‘An Unusual Annual Day’ in an Indian Medical School

16 May, 10 | by Deborah Kirklin

This write up will share the experiences of an educational intervention with a difference.  It narrates the story from a medical school located at the southern tip of the Indian peninsula. For the annual day celebrations of this school, the faculty used to host a cultural show as a mark of their love and reverence to the students. The cultural performances used to take different forms, ranging from songs, skits, dances and a lot more. On this year’s annual day, they decided to perform something unique. The movement was spearheaded by microbiologists who incidentally had many of their members involved in medical education research and cultural coordination committee.  A meeting was convened and the medium of theatre and dance was finalized to depict certain educational themes.  As usual, the process gained momentum just two days before the event. more…

Medicine, Literature, Art and Music: Royal Society of Medicine, London 1st April 2009.

18 Mar, 09 | by Deborah Kirklin

If you’re in the London region you might be interested in this symposium on medicine and the humanities. Focussing on literature, art and music it features some excellent speakers. In keeping with other RSM events, lively debate is sure to follow.

http://www.rsm.ac.uk/academ/hsg106.php

Venue: The Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE

Speakers to include: Stephen Golding, Aileen Adams, Richard Hull and Anne Hargreaves.

Boston Medics Make Music in London: 21st -29th June 2008

16 Jun, 08 | by Deborah Kirklin

Please see below details of a musical tour of London with a medical humanities flavour. 

Details provided by Dr Lisa M. Wong, President and Violinist Longwood Symphony Orchestra. more…

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