This is a reflective account that has already appeared on the Medical Humanities BMJ blog. All names have been changed.
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. 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.
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 an integral part of life whether you have dementia or not.
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.