The lines are open: An artist’s experience of working with dementia research

Dementia 0(0) 1–8 ! The Author(s) 2017 Reprints and permissions: DOI: 10.1177/1471301217734097

Charles R Harrison; on behalf of the Created Out of Mind team Created Out of Mind Residency, The Hub, Wellcome Collection, London, UK

Abstract This paper offers a first-hand account from a visual artist working with people living with a rare dementia. It explores the processes and motivations involved in situating an individual artistic practice in the field of dementia research. The paper discusses the potential role of creative artmaking for neuropsychological testing and some of the complexities of interpretation that this involves. This account also highlights the ways in which working with people with dementia can be personally and artistically transformative. Keywords Visual art, dementia, painting, collaboration, testing

Introduction In 2013, I was making paintings that considered the moment that abstract shapes coalesce to form something recognisable. At around the same time I made the acquaintance of a neuropsychologist at a London University who introduced me to research surrounding rare and young onset dementias, particularly posterior cortical atrophy (PCA); most commonly a form of Alzheimer’s disease that affects the back of the brain, and so disrupts visual perception (Crutch et al., 2017). I became intrigued by neuropsychological testing and was particularly taken by a test called Object Decision (Warrington & James, 1986) whereby people are asked to identify the silhouette of a real object amongst three other made-up shapes. I created a series of paintings based on Object Decision (Figure 1), and when exhibited, we asked members of the Corresponding author: Charles R Harrison, Created Out of Mind Residency, The Hub, Wellcome Collection, London, UK. Email: [email protected]


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Figure 1. Object Decision, 2014. Paintings made in response to Visual processing tests.

Figure 2. Profiles in Paint, 2015. Paintings made by four people each with a different diagnosis of dementia, and four healthy participants.

general public to try and identify the real objects amongst the fake silhouettes. This opportunity to put people into the testing situation and to give a sense of what it is like to have your cognitive abilities put on the spot was most compelling. Following this project, we worked with four people who had expressed a current interest in painting and drawing through their involvement with the research networks at the Dementia Research Centre. Each of these participants had a different diagnosis of dementia (behavioural variant frontotemporal dementia (FTD) (Rascovsky et al., 2011), primary progressive aphasia (unclassifiable) (Gorno-Tempini et al., 2011), typical Alzheimer’s disease (Dubois et al., 2014) and PCA), and we also worked with four people of a similar age who did not have a diagnosis of dementia but had a similar interest in art-making. Each participant was visited at their home by myself and a researcher and presented with a grey box containing the same 12 objects and an identical set of materials. Participants were asked to open the box, identify and describe each object and were then left to arrange the objects however they wished and complete a painting of their arrangement in their own space and time (Figure 2).



The paintings created have been a catalyst for many interesting conversations and whilst each of the paintings by someone with dementia communicates something of that specific form of dementia, it is also possible to use the paintings to mistakenly diagnose creative decisions as symptoms of disease. Unpicking what elements of paintings have been created through a controlled choice, by variations in ability and what is a result of illness is very challenging, and this perhaps highlights some of the dangers of assessing artistic proficiency in the context of dementia (Bergeron, Verret, Potvin, Duchesne, & Laforce, 2016) This project was the first time I had knowingly met someone with dementia and I remember having anxieties about what it is and what its effects are. There is no doubt about the devastating consequences for the people we worked with, but I had gone into the project naively believing something else – that dementia happens elsewhere is out of control, depressed and other. This was no doubt partly due to the contemporary media and cultural representations I had been exposed to; I felt distanced and therefore fearful of dementia. I found of course that life goes on; that many people are fantastic at managing difficult situations and genuinely creative in maintaining quality of life day in day out. This was certainly the most inspiring part of the project and has fundamentally changed the way I see the world. I have become aware how fragile all of our perceptions can be and tried to be more understanding and accepting of the difference.

Current research The Hub at Wellcome Collection in London is a place that invites uncertainty. The space has been designed to observe how people work together as much as what they work on. In October 2016, a group that includes people with dementia, carers, scientists, artists, musicians, broadcasters and clinicians came together as Created Out of Mind for the Hub’s second residency, aiming to explore, challenge and shape perceptions and understanding of the dementias. Created Out of Mind is a research project that puts collaboration and interdisciplinary at its core. As a resident artist and researcher, there is some expectation to represent the experiences of people living with dementia, but to appropriate seems inappropriate. Part of my role, therefore, involves facilitation and friendship – enabling people with dementia to use their own creativity and express their own experience, usually working one-to-one. One of the people I work with is Richard (a pseudonym) who has a diagnosis of semantic dementia (Lambon-Ralph, & Patterson, 2008) which makes it extremely difficult for him to find the right words. Nevertheless, Richard can converse effectively given the time and space, and it can be tremendously satisfying to be part of this successful communication. Since his diagnosis, Richard has discovered a passion for painting, and in my view, he is a natural artist – he has told me that he is not a fan of big art groups but prefers to focus his time making his paintings at home and developing his unique voice. Every time we meet, I try and bring two new technical challenges or ideas – one that seems a safe bet and one that is a bit more experimental. This has worked well and his paintings are developing all the time. The relationship is also reciprocal – Richard gave me some of his old tools as a gift and I have been making my own paintings of these tools (Figure 3). I have been trying to understand what it is like to see, touch and feel an object but find it challenging to know what it is for or how to use it. For me, this sharing adds to the collaboration and perhaps the most rewarding part is that although Richard struggles to use language to express himself, when he talks about his paintings, the animation and joy and frustration come through – he


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Figure 3. Gifted Tools, 2017. Painting made as part of ongoing collaboration.

does not need words because his enthusiasm for painting communicates his perspective so profoundly. My own research for Created Out of Mind is called Single Yellow Lines. I have invited 116 people (so far) who have attended Rare Dementia Support groups, public events and who are currently involved in research to each paint a line on two separate canvasses. People are asked to paint the straightest line possible between the two dots on the first canvas, and on the second canvas, the participant can paint whatever line they would like. The only rule is that each of the lines must be a single movement; once the brush is put to canvas, the line must be completed in one go before removing the brush, similar to a move in chess (Figure 4). Although it is tempting to analyse these lines, the extent to which this might reveal insights into the dementias is unclear and any analysis must be tentative. However, it is possible to say that people with PCA and perceptual problems have the most difficulty with the straight line and are also most likely to opt for an abstract, de-centred expressive line. It is also possible to posit that people with PPA and language problems are most likely to use the expressive line to communicate something concrete and figurative – a heart or a flower for example. From our observations, thus far, it is even possible to say that people with FTD are most likely to paint another straight line or circle for their expressive line. I am not certain how useful this sort of interpretation can be – not everyone who paints a circle has FTD, not everyone that paints a flower has PPA and not everyone that opts for abstract expression has perceptual difficulties. Another way of looking at the lines could be metaphorically (Zeilig, 2014). There are numerous different types of waves and spirals painted; perhaps they represent the ups and downs of living with dementia, or the feeling that things are spiralling out of control? It may be that the most interesting lines are the ones where people have consciously chosen to break the rules; a broken straight line or a swapping round of the instructions to name a couple.



Figure 4. Single Yellow Lines, 2017. Ongoing research aiming to characterise aspects of the controlled and expressive gesture.

The invitation presents itself both as a test and as an opportunity to be expressive; perhaps in this activity, the scope to subvert and break the rules might provide new and unexpected insights into dementia and creativity. Gestures can embody the minds and movements of people and are valuable recordings of that individual at that time. The next phase of Single Yellow Lines will also be looking at the bodies behind the gestures. How do people approach, execute and withdraw from the gesture? Are there physiological and emotional differences between a controlled and expressive


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Figure 5. Single Yellow Lines, 2017 (Example).

gesture? What happens when the canvas gets bigger or the activity is repeated? What aspects of hesitation and motivation can be captured? We will be using sensors and monitors alongside a range of other technologies to further explore the embodied experiences of people with dementia (Hyden, 2013); specifically working with people with PCA, typical Alzheimer’s and a control group. With dementia, the individual gestures of a body may remain identifiable when other forms of communication are blunted, so whilst I am interested in what scientific methodologies can offer a study of controlled and expressive gestures, I also hope to expose broad similarities that we share. One of my favourite moments with this project was when a man with FTD painted his line and became terrifically joyous. His daughter told me that this was the most animated she has seen him in a long time and that she would go straight out and get him some paints. When I asked five members of our project team to independently choose their favourite line, three of them picked this man’s line. Although it seemed like nothing special at first, it appeared to embody a profound emotional experience. As one interviewee observed, ‘It is subtle, small and constrained but there is a lot of richness contained within – it feels more considered and complicated than it first appears’ (Figure 5).

Conclusion Through this work I have lost my fear of dementia and gained many friends. The opportunity to meet and work with a broad range of unique individuals has given an incomparable view on the richness of human experience whilst exploring, experimenting and researching aspects of creativity and methodology continues to be an exceptional adventure. The creative gesture is not restricted to the surface of the canvas but is able to roam and explore the landscape. The route that presents itself for exploration is different for everyone, depending on an individual perspective and the obstacles and landmarks that lie ahead. For now, my continuing expedition has an eye on testing, assessment and objectivity. Testing enables scientists to make standardised decisions about cognitive dysfunction with greater confidence and without this methodology, diagnosis would be left to guesswork and



speculation. The site of testing is under constant development, and I think there are many ways to think creatively about its future. If a functional object is being tested then we can say that knowing the qualities, performance and reliabilities of that object is valuable for its use. After all, if you are going to hit a nail with a hammer, you want to know that the hammer will not break. But what if the object of assessment is a person? What does it mean for an individual to fall outside of ‘normal’ expectations? We are all to some degree seen as equivalent to our usefulness and to be useless is to be disposable; left with little to contribute. Working in dementia research, I have been privileged to observe how much people with dementia can and do contribute. Perhaps the strength of a hammer is not in its head but in how we handle the swing.

Consent All participants provided written consent to participate and share the paintings produced as part of the Profiles in Paint project. At the time of writing the manuscript, all participants were re-consented specifically regarding consent to publication. This was possible for all but one participant who had endured significant unrelated illness, whose partner gave verbal consent. The collaborator, ‘Richard’s’ name has been changed. Participants of the Single Yellow Lines project are anonymous. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding The author (s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The Profiles in Paint project was funded by a UCL Public Engagement Pathways grant and ongoing projects for C reated Out of Mind are funded by a Wellcome Trust Hub Award (200783/Z/16/Z).

References Bergeron, D., Verret, L., Potvin, O., Duchesne, S., & Laforce, R., Jr. (2016). When the left brain’s away, the right will play – Emergent artistic proficiency in primary progressive apraxia of speech. Cortex, 76, 125–127. Crutch, S. J., Schott, J. M., Rabinovici, G. D., Murray, M., Snowden, J. S., van der Flier, W. M., Fox, N. C. (2017). Consensus classification of posterior cortical atrophy. Alzheimer’s and Dementia, 13(8), 870–884. Dubois, B., Feldman, H. H., Jacova, C., Hampel, H., Molinuevo, J. L., Blennow, K., Cummings, J. L. (2014). Advancing research diagnostic criteria for Alzheimer’s disease: The IWG-2 criteria. Lancet Neurology, 13, 614–629. Gorno-Tempini, M. L., Hillis, A. E., Weintraub, S., Kertesz, A., Mendez, M., Cappa, S. F., Grossman, M. (2011). Classification of primary progressive aphasia and its variants. Neurology, 76, 1006–1014. Hyden, L. C. (2013). Storytelling in dementia: Embodiment as a resource. Dementia, 12(3), 359–367. Lambon-Ralph, M. A., & Patterson, K. (2008). Generalization and differentiation in semantic memory – Insight from semantic dementia. Annals of the New York Academy of Sciences, 1124, 61–76.


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Rascovsky, K., Hodges, J. R., Knopman, D., Mendez, M. F., Kramer, J. H., Neuhaus, J., Miller, B. L. (2011). Sensitivity of revised diagnostic criteria for the behavioural variant of frontotemporal dementia. Brain, 134, 2456–2477. Warrington, E. K., & James, M. (1986). Visual object recognition in patients with right-hemisphere lesions: Axes or features. Perception, 15(3), 355–366. Zeilig, H. (2014). Dementia as a cultural metaphor. The Gerontologist, 54(2), 258–267.

Charles R Harrison has been collaborating with researchers and building projects that foreground the creative strengths of people with different forms of dementia for the past 4 years. Charles’ background is in painting, sculpture and installation, and his current research aims to characterise creativity through singular gestures whilst studying the curious intersections between neuropsychological testing and conceptual art.

The lines are open: An artist's experience of working with dementia research.

This paper offers a first-hand account from a visual artist working with people living with a rare dementia. It explores the processes and motivations...
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