Created Out of Mind: Shaping Perceptions of Dementia Through Art and Science

Part of the Springer Series on Bio- and Neurosystems book series (SSBN, volume 10)


We describe a transdisciplinary research programme called Created Out of Mind which draws together artists, scientists and people living with rarer forms of dementia. The importance of subjective, lived experiences of dementia is highlighted as a key driver of research conducted during our arts-science residency in The Hub, Wellcome Collection. We illustrate our approach through worked examples of how comments and experiences shared by individuals with a visual form of dementia called posterior cortical atrophy inspired and shaped experiments, artworks and other outputs which deepened understanding of that condition.


Dementia Transdisciplinary Patient and public involvement (PPI) Co-creation 



We are indebted to members of Rare Dementia Support for their inspiration and generous contributions to this work. We would particularly like to thank Gaynor Hulme (1948–2018), Pam Hulme and Isabel Phillips for sharing their ‘Am I the right way up?’ conversation, Trina and Graeme Armstrong, John Williamson and Lori Hayden, Pam and Richard, Raena and Nick Frankel-Pollen, Geoff and Joan Moffatt and Valerie Blumenthal for their contributions to Simon Ball’s film Do I See What You See?, and Charlie Murphy and Rachel Wilcock for images of their artworks. This work is presented on behalf of the Created Out of Mind team. This work was supported by the Wellcome Trust [200783] and the Alzheimer’s Society [AS-PG-14-022]. The Dementia Research Centre receives support from the NIHR Queen Square Dementia BRU and the NIHR UCL/H Biomedical Research Centre.


  1. 1.
    Arends, B., Thackara, D.: Experiment: conversations in art and science. Wellcome Trust, London (2003)Google Scholar
  2. 2.
    Benson, D.F., Davis, R.J., Snyder, B.D.: Posterior cortical atrophy. Arch. Neurol. 45(7), 789–793 (1988)CrossRefGoogle Scholar
  3. 3.
    Brotherhood, E., Ball, P., Camic, P.M., Evans, C., Fox, N., Murphy, C., Walsh, F., West, J., Windle, G., Billiald, S., Firth, N., Harding, E., Harrison, C., Holloway, C., Howard, S., McKee-Jackson, R., Jones, E., Junghaus, J., Martin, H., Nolan, K., Rollins, B., Shapiro, L., Shapiro, L., Twigg, J., van Leeuwen, J., Walton, J., Warren, J., Wray, S., Yong, K., Zeilig, H., Crutch, S.: Preparatory planning framework for created out of mind: shaping perceptions of dementia through art and science. Wellcome Open Res. 6(2), 108 (2017). Scholar
  4. 4.
    Callard, F., Fitzgerald, D.: Rethinking interdisciplinarity across the social sciences and neurosciences. Palgrave Macmillan, UK (2015).
  5. 5.
    Callard, F., Staines, K., Wilkes, J. (eds.): The restless compendium: interdisciplinary investigations of rest and its opposites. Palgrave Macmillan, Cham (2016).
  6. 6.
    Camic, P.M., Crutch, S.J., Zeilig, H., Harrison, C., Strohmaier, S., Harding, E., Firth, N., West, J., Wray, S., Murphy, C., Windle, G.: Conceptualising artistic creativity in the dementias: interdisciplinary approaches to research and practice. Front. Psychology 9, 1–12 (2018). Scholar
  7. 7.
    Crutch, S.J., Schott, J.M., Rabinovici, G.D., Murray, M., Snowden, J.S., van der Flier, W.M., Dickerson, B.C., Vandenberghe, R., Ahmed, S., Bak, T.H., Boeve, B.F., Butler, C., Cappa, S.F., Ceccaldi, M., de Souza, L.C., Dubois, B., Felician, O., Galasko, D., Graff-Radford, J., Graff-Radford, N.R., Hof, P.R., Krolak-Salmon, P., Lehmann, M., Magnin, E., Mendez, M.F., Nestor, P.J., Onyike, C.U., Pelak, V.S., Pijnenburg, Y., Primativo, S., Rossor, M.N., Ryan, N.S., Scheltens, P., Shakespeare, T.J., Suárez González, A., Tang-Wai, D.F., Yong, K.X.X., Carrillo, M., Fox, N.C.: Alzheimer’s association ISTAART atypical alzheimer’s disease and associated syndromes professional interest area. Consensus classification of posterior cortical atrophy. Alzheimer’s & Dementia. 13(8),870–884 (2017).
  8. 8.
    Crutch, S.J., Yong, K.X., Peters, A., Ocal, D., Kaski, D., Gonzalez, A.S., Ryan, N., Ball, S., Harrison, C.R., Murphy, C., Hulme, P., Phillips, I., Hulme, G., Brown, A., Brown, L., Riley, P., Ramsey, L., Woods, A., Day, B.: Contributions of patient and citizen researchers to ‘Am I the right way up?’ study of balance in posterior cortical atrophy and typical Alzheimer’s disease. Dementia (London). 17(8), 1011–1022 (2018). Scholar
  9. 9.
    Harrison, C.R., Carton, A.M., Brotherhood, E.V., Hardy, C.J.D., Cohen, M.H., Warren, J.D., Crutch, S.J.: Profiles in paint: contrasting responses to a common artistic exercise by people with different dementias. Arts Health (2017). Epub ahead of print.
  10. 10.
    Thomas, G.E.C., Crutch, S.J., Camic, P.M.: Measuring physiological responses to the arts in people with a dementia. Int. J. Psychophysiol. 123, 64–73 (2018). Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  1. 1.Dementia Research Centre, UCL Queen Square Institute of NeurologyUniversity College LondonLondonUK
  2. 2.Created Out of Mind, The Hub, Wellcome CollectionLondonUK
  3. 3.Salomons Centre for Applied PsychologyCanterbury Christ Church UniversityTunbridge Wells, KentUK
  4. 4.Whole-Body Sensorimotor Lab, Department of Clinical and Motor Neurosciences, UCL Queen Square Institute of NeurologyUniversity College LondonLondonUK
  5. 5.WellcomeLondonUK

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