About Blog Events Team Partners Protocal Minutes Search Results More Anonymous quotations about testing, taken from touring events and one to one conversations Clinician - “You collude with where they (individuals and family) want to be.” PLWD – “why repeat the tests so many times!?” PLWD – “I was there for 3 hours and I hated it.” Carer – “I didn’t feel listened to as part of the diagnostic process” Carer – “The carer is always right” Carer – “Just getting to the point of testing can be difficult - GP’s can be the enemy” Carer – “Forcing something makes you want to do it less.” Carer – “Services seem to only be provided when things are at their worst” PLWD – “I was told to stop driving out of the blue!” PLWD – “These days people are employed based of how they score rather than who they are” PLWD – “the MMSE is useless!” PLWD – “How do you measure distraction?” PLWD – “Everybody is different. Testing doesn’t seem to reflect this.” Health Expert – “Make sure you leave a little extra time, so things aren’t rushed.” Carer – “The test was done at our family home in relaxed surroundings. It made a difference.” Clinician – “…testing should be implicit and not explicit questions that tap into someone’s real-world difficulties while they are living their normal life.” Carer – “I very much remember the way it (testing) was carried out left a lasting impression on me… there was no talking-over but engagement. Afterwards they also engaged in conversation over what the results showed, and their time was our time.”

Testing Situations About Blog Events Team Partners Protocal Minutes Search Results More Project Lead Artist Charlie Harrison has been collaborating with researchers and building projects that foreground the creative strengths of people with rare dementias for the past 5 years. He is particularly focussed on opening up broad public conversations about the experience of cognitive testing and how art might be a useful tool to shape best practice. Collaborators & Advisors Prof Seb Crutch ’s research has focused on the neuropsychological investigation of perceptual function and language in individuals with neurodegenerative disease and stroke. Particular interests include the exploration of visual disorders and disease progression in posterior cortical atrophy (PCA), and analysis of refractory access disorders, and abstract and concrete conceptual knowledge. Emeritus Prof Elizabeth Warrington is a true trailblazer in cognitive testing devising materials and methods of assessment that are used widely by researchers, clinicians and neuropsychologists. Now retired, Elizabeth continues to be an honorary member of the UCL Dementia Research Centre, sharing her knowledge with scientists and artists in the field. Prof Brian Day has studied many different aspects of motor control in people who are either healthy or suffer from a wide range of neurological diseases. His current research is devoted to understanding multi-sensory processes that control and integrate whole-body motor activities. Prof. Paul Camic is a clinical health psychologist who has a long term interest in the arts and healthcare. He also has a particular interest in public health approaches to dementia care. Emma Harding is a social scientist doing mostly qualitative research (home-based interviews and observations) with people with different kinds of dementia. She is interested in how people describe, rate and otherwise capture or express their experiences of having a diagnosis of a dementia and in finding new and innovative ways to do this. Keir Yong is a research psychologist whose work has primarily focused on investigating how Alzheimer’s disease and posterior cortical atrophy affect visual perception and spatial awareness. His research combines approaches of neuropsychological and engineering disciplines to develop and evaluate strategies supporting independent activities. Bhupendra and Urvashi Desai were part of the ‘Neva’ film project, and continue to make valuable contributions to this work. They are particularly interested in shifting the focus to include human attributes such as love, compassion, laughter and wisdom. Rose de Paeztron and Keith Roberts were active participants in many projects at Created Out of Mind, including the 'Neva' film. They have also been keen members of YOYO, a support group for people with young onset dementia in North London with a focus on activities such as creative learning, dance, singing and music therapy. Mhari McLintock was a narrator for the Neva film and has also recently participated in a number of research trials. Mhari has a mantra of “if not now, when?” and likes to get around on a tandem. Roberta McKee Jackson has been actively involved in several Rare Dementia Support groups, and now provides regional support for the charity. Through her work Roberta hopes to raise awareness of rare dementias and the importance of support groups for those living with dementia and their families/carers Charlie Murphy is an artist investigating visual, linguistic and scientific metaphors and tools used to describe, analyse and understand the impact of dementias. Charlie is creating a range of artworks, performances and events which aim to raise awareness about the varied and unexpected impacts of dementias at social, personal and cellular levels. See examples of work in progress here Emilie Brotherhood is a PhD student and Research Fellow at the Dementia Research Centre, UCL, with a background in cognitive neuroscience. Emilie was a collaborator in the Created Out of Mind residency, and continues to work with Charlie Harrison on the Rare Dementia Support Impact study and ethical considerations for artists working in the field. Dr Chris Hardy is a Postdoctoral Research Fellow at the Dementia Research Centre (UCL) funded by Action on Hearing Loss and the Dunhill Medical Trust. His current work focuses on understanding the relationship between hearing loss and dementia, and he has a special interest in a rare group of ‘language-led’ dementias known as the primary progressive aphasias Dilek Ocal , Phd student and study coordinator, has been involved in Alzheimer’s research for the past 5 years. Her work combines behavioural and cognitive assessments with novel and more conventional neuroimaging methods to uncover the relationship between dementia related brain changes and the diverse behavioural and cognitive presentations within the Dementia syndrome. Kirsty Lu has been researching Alzheimer’s disease for 7 years, focussing on measuring the earliest changes in memory and thinking. As someone who administers cognitive tests week by week, she is interested in the strengths and limitations of this type of assessment, and in reflecting on the different ways that people respond to the experience of being tested. Hannah Carr is a psychology research assistant working on projects focusing on ageing, memory and cognition. She administers many different tasks to tap into these three elements and is interested in how different people perform on these tasks and how they respond to them. Testing Situations owes a huge debt of thanks to a number of other people whose valuable contributions of time, conversations, participations and friendships have shaped this work immeasurably. Rare Dementia Support Nikki Zimmerman Eva Tait John Fowler Rosemary Fowler Sheila Keegan Chris Pouncey Clive Smith Christine Smith Helen Smith Created Out of Mind Kailey Nolan Gill Windle Julian West Hannah Zeilig Millie van der byl Williams Harry MacQueen Natasha Trotman Caroline Evans Janette Junghaus Fergus Walsh Susanna Howard Janneke van Leeuwen Nicholas Firth UCL Suzie Barker Ivanna Pavisic Jason Warren George Thomas Elia Benhamou Amy Peters Matthew Bancroft Diego Kaski Wellcome Harriet Martin Tony Woods Bridie Rollins Natasha Wright Touring Contacts Helen Craig Claire Robertson Diane Garfield Robina Maslen Julie Negus Kester Muller Sabrina Moxom Marine Begault Carolyn Goodwin Clare Hankinson John-Paul Muir Catherine Butcher Karen Inglis John Lewis James Upton Sarah Nolan Viviana Checchia Other Amelia Carton Daniel Fridholm Katie Simpson Hannah Fridholm Richard Day

Profiles in Paint 2014 - present Paintings could offer insight into the varied experiences of people with different dementias. In this project, a single exercise – the painting of a group of objects in still-life – was used to capture artistic production in four artists with different diagnoses of dementia and four healthy artists. Whilst quantitative studies provide important insights into the neuroanatomical supports for artistic actions, autonomous art exercises may yield deeper understanding of the individual creative experience in the context of neurodegenerative disease. Find the full text here Back

About Blog Events Team Partners Protocal Minutes Search Results More Ethical questions for artistic engagement and research with people living with dementia How is consent gained (& ongoing consent)? Does consideration of capacity and consent exclude people from participation? Does the project encompass differences in emotional range (not one size to fit all)? What is the comparative value to the participant to the practitioner? What happens (to the project, people, work, data etc) after the activities end? Process vs product (for whose benefit)? How do audiences change as the project progresses? Is it problematic for ‘dementia’ to act as an inspiration for artistic work / research? To what extent does the project interact with the person vs the illness? What considerations are there in place in terms of carer involvement? Does the extent of engagement offered suit the form and aims of the project? Are the activities culturally and socially inclusive? If work is by nature exploratory, how is this (uncertainty) communicated? How can the value of uncertainty in the process be aligned with clear, structured pre-emptive protocols? What is the justification for appropriation (in art and research)? Is criticality of the methods used embedded in the project and are there ways to adapt and change? Can the benefits of criticality outweigh the benefits of positive engagement? What is meant by positive engagement? i.e. what sort of experiences are to be encouraged?

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About Blog Events Team Partners Protocal Minutes Search Results More Throughout the tour we'll be gathering an archive of learning about how testing affects people's lives whilst considering the ethics of these artistic practices. Any information included here should be considered ongoing and flexible. Please click the links below for further details: - Anonymous quotations about testing, taken from touring events and one to one conversations - Ethical questions for artistic engagement and research with people living with dementia - Field notes

Charles Harrison is an artist based in London, working with painting, sculpture and installation. Home Contact B. 1986, based in Nottingham and London. Charlie Harrison is an artist, curator and creative health researcher working across contemporary art, neuroscience and public engagement. His art practice remodels common forms, drawing attention to perceptual fragility through distortions of material and sensual codes. Sculptural works are usually poorly fabricated and often placed within unsuspecting public environments. Recent developments have moved towards documentation, slow making and drawing. Charlie often works through collaboration and his artistic methods and conceptual understanding have shaped alongside artists, curators, social scientists, neuropsychologists, motor-neuroscientists and people living with rare dementias. Some of these collaborations have particularly focussed on the historical development, values and deficiencies of standardised testing methods and have led to novel social science and arts and health research funded by Wellcome Trust, University College London (UCL) and the Economic and Social Research Council (ESRC). Charlie works at UCL Institute of Neurology, contributing to research, education, public and patient involvement and coordinating health and wellbeing projects alongside people living with rare dementias through the Rare Space community venture. Charlie also manages the planned Gallery Walk artist residency and development programme in South Lincolnshire. Selected Exhibitions and Events 2025 Der Augenring , MAUVE, Vienna. Oct-Nov 2025 Mascara Film Club 33 , Sessions House, Spalding, March 2025 2024 Speedboat , The Gliderdrome, Boston. August 2024 The Shoe Museum , Outhouse Gallery, London. July 2024 Oracle Opticians , Chemist Gallery, London. June-July 2024 2023 Neptune's Laundrette , Art Lacuna, London. Oct-Nov 2023 Talking Lines , Drawing Room, London. Oct-Dec 2023 2022 Understanding Intelligence, Open House , PRAKSIS, Oslo. Dec 2022 Ghost Show , Copeland Park, London, Oct 2022 I Have Eaten It , Refettorio Felix, London. Feb 2022 2021 Sandman Mattresses. 61 Rollins St, London. April/May 2021 2019 B18_0103-0107 . Barbican Centre, London. October 2019 H2OME TESTING for N — E º W ˝( S ) Seasonal School, Jupiter Woods. London March 2019 Testing Situations. Jupiter Woods, London Jan/Feb 2019 2018 Bollards . Deptford X Fringe, London. September 2018 Created Out of Mind Residency Showcase . Wellcome Collection, London. July 2018 Life at the Edges (Extremophile Conference Performer). Science Gallery, Dublin. June 2018 Overground . Nigel, London. May 2018 Normal? Festival of the Brain . Quarterhouse, Folkestone. May 2018 Conditions for Ongoingness// 1.2 The Gathering . Jupiter Woods, London. March/April 2018 ARUK Reframe Dementia . Oxo Gallery, London. March 2018 Trajectories . Lifespace, Dundee. February-June 2018 Wet Paint on Wall . Various Locations, London. December/January 2018 2017 Pint of Science, Dimensions of Dementia . Studio Spaces, London. October 2017 Refused . Various Locations, London/Brighton. July 2017 The Art of Gesture . Wellcome Collection, London. July 2017 We Are All Involved in this Mess . Enclave Lab, London. April, 2017 2016 Bollards . Upper Brockley Road, London. December 2016 #7 . The Koop Project, Brighton. July 2016 Lost in Thought . Science Museum, London. April 2016 Friendship Rules . The Quadrant, Brighton. February 2016. 2015 A Rational Question . TrafalgarWorks, Portslade. June 2015 CRH . TrafalgarWorks, Portslade. June 2015 2014 WP70 . Community Arts Centre, Brighton. November 2014 ArtNeuro . The Rag Factory, London. November 2014 Horror Hotel . Ghost Train on the Pier, Brighton. October 2014 WP43 . Community Arts Centre, Brighton. May 2014 Important Information . Neue Froth Kunsthalle, Hove. March 2014 2013 Work Programme 17 . Community Arts Centre, Brighton. May 2013 2010 Nature:Humanity:Technology . Inham Hall, Wisbech St Mary. June 2010 NEWS Current exhibition at MAUVE, Vienna Clive from accounts & Sandman Mattresses (album cover collaboration) Listen: Oracle Opticians conversation with Rebecca Edwards Read: Oracle Opticians article in Post Art Clarity Co-authored Research Papers & Press ‘Talking lines’: the stories of diagnosis and support as told by those with lived experience of rare forms of dementia, 2024 Talking Lines: A Research Protocol Integrating Verbal and Visual Narratives to Understand the Experiences of People Affected by Rarer Forms of Dementia, International Journal of Qualitative Methods, 2023 Contributions of patient a nd citizen researchers to ‘Am I the right way up?’ st udy of balance in posterior cortical atrophy and typical Alzheimer’s disease . Dementia, 2018 Mobile Brain-Body Imaging and the Neuroscience of Art, Innovation and Creativity. (book chapter). Springer, November 2019 Conceptualising and Understanding Artistic Creativity in the Dementias: Interdisciplinary Approaches to Research and Practice . Frontiers in Psychology, September 2018. Exploring dementia through art and science. Fergus Walsh, BBC News, May 2018 Profiles in paint: contrasting responses to a common artistic exercise by people with different dementias. Arts & Health, November 2017 Preparatory planning framework for Created Out of Mind: Shaping perceptions of dementia through art and science. Wellcome Open Research, November 2017 The lines are open: An artist’s experience of working with dementia research. Dementia, October 2017 Forgetting but not gone: dementia and the arts . Philip Ball, The Observer, March 2017 Object & Display. Dupe, The Dark Issue. May 2014 Links & Education Rare Space - Website Dementia and the Arts: Sharing Practice, Developing Understanding and Enhancing Lives - Online course The Many Faces of Dementia - Online Course Rare Dementia Support - Website Commercial painting

Speedboat,2024 Star prize for Katie and Charlie Extraganza bingo. Created with Teal Griffin , photography by Carl Gent , claimed by Aunty Bindy. Previous Project Next Project