Personalization and Compassionate Design

Part of the Human–Computer Interaction Series book series (HCIS)


How can designers and technologists navigate the complex ethical issues that are involved in designing for people living with dementia? How is it possible to design appropriately and with sensitivity so that a person’s dignity and sense of self can be retained even when the person can no longer remember who they are? How can successful design solutions be created when the user can no longer communicate verbally and is unable to relate to the world around them? This chapter will propose that Compassionate Design provides a useful way forward. This approach prioritizes personalization, sensory stimulation and designing to maintain connections between people and the world around them. By keeping the person living with dementia at the very heart of the design process, understanding their lived experiences and personal histories, it is possible to create appropriate, meaningful and useful solutions to assist in dementia care. Person centred and relational approaches to care provide the context for this chapter and the importance of including dementia ‘experts by experience’ in the design process is explained.


  1. Alzheimer’s Research UK (2016) All about dementia. A. Society. Cambridge, Alzheimer’s Research UK. AAD-1114-1116, p 20Google Scholar
  2. Bennett P, Hinder H, Cater K (2016) Rekindling imagination in dementia care with the resonant interface rocking chair. In: CHI EA ‘16 proceedings of the 2016 CHI conference extended abstracts on human factors in computing systems. ACM, San Jose, California, USAGoogle Scholar
  3. Branco RM (ed) (2017) Dementia lab: stories from design and research 2. Dementia Lab, GermanyGoogle Scholar
  4. Branco RM, Quental J, Ribeiro Ó (2017) Personalized participation: an approach to involve people with dementia and their families in a participatory design project. CoDesign 13:127–143CrossRefGoogle Scholar
  5. Brooker D, Kitwood TM (2019) Dementia reconsidered, revisited: the person still comes first. Open University Press, London, EnglandGoogle Scholar
  6. Cohen-Mansfield J, Marx MS, Freedman LS, Murad H, Thein K, Dakheel-Ali M (2012) What affects pleasure in persons with advanced stage dementia? J Psychiatr Res 46(3):402–406CrossRefGoogle Scholar
  7. Critten V, Kucirkova N (2017) ‘It brings it all back, all those good times; it makes me go close to tears’. Creating digital personalized stories with people who have dementia. Dementia 0(0):1471301217691162Google Scholar
  8. DEEP (2014) Dementia words matter: guidelines on language about dementia. DEEP Guides. UK, DEEP The UK Network of Dementia Voices, p 4Google Scholar
  9. Dewing J (2008) Personhood and dementia: revisiting Tom Kitwood’s ideas. Int J Older People Nurs 3(1):3–13CrossRefGoogle Scholar
  10. Hendriks N, Wilkinson A (eds) (2017) Dementia lab: the role of design. Dementia Lab, BelgiumGoogle Scholar
  11. Hendriks N, Huybrechts L, Wilkinson A, Slegers K (2014) Challenges in doing participatory design with people with dementia. In: Proceedings of the 13th participatory design conference: short papers, industry cases, workshop descriptions, doctoral consortium papers, and keynote abstracts—volume 2. ACM, Windhoek, Namibia, pp 33–36Google Scholar
  12. Higgins P (2013) Involving people with dementia in research. Nurs Times 109(28):20Google Scholar
  13. Holton R (2016) Memory, persons and dementia. Stud Christ Ethics 29(3):256–260CrossRefGoogle Scholar
  14. Hughes JC (2014) How we think about dementia: personhood, rights, ethics, the arts and what they mean for care. Jessica Kingsley, LondonGoogle Scholar
  15. Jakob A, Collier L (2017) Sensory design for dementia care—the benefits of textiles. J Text Res Pract 5(2):232–250. Scholar
  16. Kenning G (2017) Making it together: reciprocal design to promote positive wellbeing for people living with dementia. University of Technology Sydney, Sydney, AustraliaGoogle Scholar
  17. Kitwood T (1997) Dementia reconsidered: the person comes first. Open University Press, LondonGoogle Scholar
  18. Kitwood T, Bredin K (2008) Towards a theory of dementia care: personhood and well-being. Ageing Soc 12(3):269–287CrossRefGoogle Scholar
  19. Kontos P, Martin W (2013) Embodiment and dementia: exploring critical narratives of selfhood, surveillance, and dementia care. Dementia 2013:12Google Scholar
  20. Kontos PC, Naglie G (2006) Expressions of personhood in Alzheimer’s: moving from ethnographic text to performing ethnography. Qual Res 6(3):301–317CrossRefGoogle Scholar
  21. LeDoux JE (1998) The emotional brain: the mysterious underpinnings of emotional life. Weidenfeld & Nicolson, LondonGoogle Scholar
  22. Livingston G, Sommerlad A, Orgeta V, Costafreda SG, Huntley J, Ames D, Ballard C, Banerjee S, Burns A, Cohen-Mansfield J, Cooper C, Fox N, Gitlin LN, Howard R, Kales HC, Larson EB, Ritchie K, Rockwood K, Sampson EL, Samus Q, Schneider LS, Selbæk G, Teri L, Mukadam N (2017) Dementia prevention, intervention, and care. The LancetGoogle Scholar
  23. Lykkeslet E, Gjengedal E, Skrondal TH, Storjord MB (2014) Sensory stimulation-a way of creating mutual relations in dementia care. Int J Qual Stud Health Well-being 9.
  24. Milne A (2010) The ‘D’ word: reflections on the relationship between stigma, discrimination and dementia. J Mental Health 19(3):227–233CrossRefGoogle Scholar
  25. Morrissey K, Wood G, Green D, Pantidi N, McCarthy J (2016) I’m a rambler, I’m a gambler, I’m a long way from home: the place of props, music, and design in dementia care. In: Proceedings of the 2016 ACM conference on designing interactive systems. ACM, pp 1008–1020Google Scholar
  26. Morrissey K, McCarthy J, Pantidi N (2017) The value of experience-centred design approaches in dementia research contexts. In: Proceedings of the 2017 CHI conference on human factors in computing systems. ACM, pp 1326–1338Google Scholar
  27. Mullins J (2018) A suitcase of memories: a sensory ethnography of tourism and dementia with older people. Ph.D., Cardiff Metropolitan UniversityGoogle Scholar
  28. Patterson C (2018) World Alzheimer’s Report 2018. Alzheimer’s Disease International, London September 2018Google Scholar
  29. Prince M, Wimo A, Guerchet M, Ali G, Wu Y, Prina M (2015) World Alzheimer Report 2015: the global impact of dementia—an analysis of prevalence, incidence, cost and trend. LondonGoogle Scholar
  30. Sabat SR, Harré R (1992) The construction and deconstruction of self in Alzheimer’s disease. Ageing Soc 12(4):443–461CrossRefGoogle Scholar
  31. Treadaway C, Kenning G (2016) Sensor e-Textiles: person centered co-design for people with late stage dementia. Working with Older People 20(2):76–85CrossRefGoogle Scholar
  32. Treadaway C, Fennell J, Prytherch D, Kenning G, Prior A, Walters A (2018a) Compassionate design: how to design for advanced dementia. Cardiff Metropolitan University, CardiffGoogle Scholar
  33. Treadaway C, Taylor A, Fennell J (2018b) Compassionate design for dementia care. Int J Des Creativity Innov 7(3):1–14Google Scholar
  34. Treadaway C, Fennell J, Prytherch D, Kenning G, Walters A (2018b) Designing for well-being in late stage dementia. In: Coles R, Costa S, Watson S (eds) Pathways to well-being in design: examples from the arts and humanities. Routledge, London, pp 136–151Google Scholar
  35. Treadaway C, Fennell J, Taylor A, Kenning G (2019) Designing for playfulness through compassion: design for advanced dementia. Design for Health, pp 1–21Google Scholar
  36. Wallace J, Wright PC, McCarthy J, Green DP, Thomas J, Olivier P (2013) A design-led inquiry into personhood in dementia. In: Proceedings of the SIGCHI conference on human factors in computing systems. ACM, Paris, France, pp 2617–2626Google Scholar

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© Springer Nature Switzerland AG 2020

Authors and Affiliations

  1. 1.Cardiff Metropolitan UniversityCardiffWales

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