Skip to main content
SpringerLink
Log in

Personalization and Compassionate Design

  • Chapter
  • First Online:
HCI and Design in the Context of Dementia

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

Abstract

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.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 84.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 109.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 109.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Notes

  1. 1.

    http://dementiavoices.org.uk/wp-content/uploads/2015/03/DEEP-Guide-Language.pdf (accessed 05.05.2019).

  2. 2.

    See Hughes (2014) ‘How we think about dementia’ for further guidance on ethical issues.

  3. 3.

    https://www.nesta.org.uk/blog/dementia-citizens-learning-from-a-citizen-science-platform-for-dementia-research/ acc 02.02.19.

  4. 4.

    There are many other similar apps including: Our Story; My Story; Book Creator; Story Maker; CIRCA project; Living in the moment project.

  5. 5.

    Free to download from: https://www.laughproject.info/wp-content/uploads/2018/04/Compassionate-Design_toolkit.pdf.

  6. 6.

    LAUGH project 2015-2018 Funder by UK Arts and Humanities Research Council Grant ref: AH/M005607/1.

References

  • Alzheimer’s Research UK (2016) All about dementia. A. Society. Cambridge, Alzheimer’s Research UK. AAD-1114-1116, p 20

    Google Scholar 

  • 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, USA

    Google Scholar 

  • Branco RM (ed) (2017) Dementia lab: stories from design and research 2. Dementia Lab, Germany

    Google Scholar 

  • 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 13:127–143

    Article  Google Scholar 

  • Brooker D, Kitwood TM (2019) Dementia reconsidered, revisited: the person still comes first. Open University Press, London, England

    Google Scholar 

  • 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):402–406

    Article  Google Scholar 

  • 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):1471301217691162

    Google Scholar 

  • DEEP (2014) Dementia words matter: guidelines on language about dementia. DEEP Guides. UK, DEEP The UK Network of Dementia Voices, p 4

    Google Scholar 

  • Dewing J (2008) Personhood and dementia: revisiting Tom Kitwood’s ideas. Int J Older People Nurs 3(1):3–13

    Article  Google Scholar 

  • Hendriks N, Wilkinson A (eds) (2017) Dementia lab: the role of design. Dementia Lab, Belgium

    Google Scholar 

  • 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 33–36

    Google Scholar 

  • Higgins P (2013) Involving people with dementia in research. Nurs Times 109(28):20

    Google Scholar 

  • Holton R (2016) Memory, persons and dementia. Stud Christ Ethics 29(3):256–260

    Article  Google Scholar 

  • Hughes JC (2014) How we think about dementia: personhood, rights, ethics, the arts and what they mean for care. Jessica Kingsley, London

    Google Scholar 

  • Jakob A, Collier L (2017) Sensory design for dementia care—the benefits of textiles. J Text Res Pract 5(2):232–250. https://doi.org/10.1080/20511787.2018.1449078

    Article  Google Scholar 

  • Kenning G (2017) Making it together: reciprocal design to promote positive wellbeing for people living with dementia. University of Technology Sydney, Sydney, Australia

    Google Scholar 

  • Kitwood T (1997) Dementia reconsidered: the person comes first. Open University Press, London

    Google Scholar 

  • Kitwood T, Bredin K (2008) Towards a theory of dementia care: personhood and well-being. Ageing Soc 12(3):269–287

    Article  Google Scholar 

  • Kontos P, Martin W (2013) Embodiment and dementia: exploring critical narratives of selfhood, surveillance, and dementia care. Dementia 2013:12

    Google Scholar 

  • Kontos PC, Naglie G (2006) Expressions of personhood in Alzheimer’s: moving from ethnographic text to performing ethnography. Qual Res 6(3):301–317

    Article  Google Scholar 

  • LeDoux JE (1998) The emotional brain: the mysterious underpinnings of emotional life. Weidenfeld & Nicolson, London

    Google Scholar 

  • 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 Lancet

    Google Scholar 

  • 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. https://doi.org/10.3402/qhw.v9.23888. https://doi.org/10.3402/qhw.v9.23888

  • Milne A (2010) The ‘D’ word: reflections on the relationship between stigma, discrimination and dementia. J Mental Health 19(3):227–233

    Article  Google Scholar 

  • 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 1008–1020

    Google Scholar 

  • 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 1326–1338

    Google Scholar 

  • Mullins J (2018) A suitcase of memories: a sensory ethnography of tourism and dementia with older people. Ph.D., Cardiff Metropolitan University

    Google Scholar 

  • Patterson C (2018) World Alzheimer’s Report 2018. Alzheimer’s Disease International, London September 2018

    Google Scholar 

  • 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. London

    Google Scholar 

  • Sabat SR, Harré R (1992) The construction and deconstruction of self in Alzheimer’s disease. Ageing Soc 12(4):443–461

    Article  Google Scholar 

  • Treadaway C, Kenning G (2016) Sensor e-Textiles: person centered co-design for people with late stage dementia. Working with Older People 20(2):76–85

    Article  Google Scholar 

  • Treadaway C, Fennell J, Prytherch D, Kenning G, Prior A, Walters A (2018a) Compassionate design: how to design for advanced dementia. Cardiff Metropolitan University, Cardiff

    Google Scholar 

  • Treadaway C, Taylor A, Fennell J (2018b) Compassionate design for dementia care. Int J Des Creativity Innov 7(3):1–14

    Google Scholar 

  • 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 136–151

    Google Scholar 

  • Treadaway C, Fennell J, Taylor A, Kenning G (2019) Designing for playfulness through compassion: design for advanced dementia. Design for Health, pp 1–21

    Google Scholar 

  • 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 2617–2626

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Cardiff Metropolitan University, Cardiff, Wales

    Cathy Treadaway

Authors
  1. Cathy Treadaway
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Cathy Treadaway .

Editor information

Editors and Affiliations

  1. University of Technology Eindhoven, Eindhoven, The Netherlands

    Rens Brankaert

  2. University of New South Wales, Sydney, Australia

    Gail Kenning

Rights and permissions

Reprints and permissions

Copyright information

© 2020 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Treadaway, C. (2020). Personalization and Compassionate Design. In: Brankaert, R., Kenning, G. (eds) HCI and Design in the Context of Dementia. Human–Computer Interaction Series. Springer, Cham. https://doi.org/10.1007/978-3-030-32835-1_4

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-32835-1_4

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-32834-4

  • Online ISBN: 978-3-030-32835-1

  • eBook Packages: Computer ScienceComputer Science (R0)

Publish with us

Policies and ethics

Search

Navigation