Breaking Well-Formed Opinions and Mindsets by Designing with People Living with Dementia

Conference paper

Abstract

This paper presents ongoing research that highlights how design thinking and acting can contribute significantly to breaking down preconceived ideas about what people living with dementia are capable of doing. The research, undertaken in collaboration with Alzheimer Scotland and other dementia organisations across the UK, has adopted a range of disruptive design interventions to break the cycle of well-formed opinions, strategies, mindsets and ways-of-doing that tend to remain unchallenged in the health and social care of people living with dementia. The research has resulted in a number of co-designed interventions that help change the perception of dementia by showing that people living with dementia can offer much to UK society after diagnosis. Moreover, it is envisaged that the co-designed activities and interventions presented here will help reconnect people recently diagnosed with dementia to help build their self-esteem, identity and dignity and help keep the person with dementia connected to their community, thus delaying the need for formal support and avoid the need for crisis responses. The paper reports on three design interventions where the authors have worked collaboratively with nearly 200 people diagnosed with dementia across the UK in co-design and development activities. The paper concludes with a number of innovative recommendations for researchers when co-designing with people living with dementia.

References

  1. All Party Parliamentary Group on Dementia (2016) Dementia rarely travels alone. APPG on Dementia, London, UKGoogle Scholar
  2. Alzheimer Scotland (2008) Meeting our needs: the level and quality of dementia support services in Scotland. Alzheimer Scotland, Edinburgh, UKGoogle Scholar
  3. Batsch NL, Mittelman MS (2012) World Alzheimer report 2012: overcoming the stigma of dementia. Alzheimer’s Disease International, London, UKGoogle Scholar
  4. Bisson C, Luckner J (1996) Fun in learning: the pedagogical role of fun in adventure education perspectives. J Exp Educ 19(2):108–112Google Scholar
  5. Brown T (2009) Change by design: how design thinking transforms organisations and inspires innovation. HarperCollins, New York, NY, USGoogle Scholar
  6. Bury M (1982) Chronic illness as biographical disruption. Sociol Health Illn 4(2):167–182CrossRefGoogle Scholar
  7. Christensen C, Overdorf M (2000) Meeting the challenge of disruptive change. Harvard Bus Rev 78(2):66–76Google Scholar
  8. Gorb P, Dumas A (1987) Silent design. Des Stud 8(3):150–156CrossRefGoogle Scholar
  9. Heath C, Heath D (2011) Switch: how to change things when change is hard. Random House, London, UKGoogle Scholar
  10. Hendriks N, Slegers K, Duysburgh P (2015) Codesign with people living with cognitive or sensory impairments: a case for method stories and uniqueness. CoDesign 11(1):70–82CrossRefGoogle Scholar
  11. Holcombe S (2010) The arrogance of ethnography: managing anthropological research knowledge. Aust Aboriginal Stud 2:22–32Google Scholar
  12. Katsuno T (2005) Dementia from the inside: how people with early-stage dementia evaluate their quality of life. Ageing Soc 25:197–214CrossRefGoogle Scholar
  13. Kelley T, Kelley D (2015) Creative confidence: unleashing the creative potential within us all. William Collins, London, UKGoogle Scholar
  14. Kinnaird L (2012) Delivering integrated dementia care: the 8 pillars model of community support, September. Alzheimer Scotland, Edinburgh, Scotland, UKGoogle Scholar
  15. Kitwood T (1990) The dialectics of dementia: with particular reference to Alzheimer’s disease. Ageing Soc 10:177–196CrossRefGoogle Scholar
  16. Lam B, Dearden A, William-Powlett K, Brodie E (2012) Exploring co-design in the voluntary sector. In: Proceedings of VSSN/NCVO annual conference, University of Birmingham, Birmingham, AL, USGoogle Scholar
  17. Leadbeater C (2009) We think. Profile Books, London, UKGoogle Scholar
  18. Manzini E, Rizzo F (2011) Small projects/large changes: participatory design as an open participated process. CoDesign 7(3–4):199–215CrossRefGoogle Scholar
  19. Matthews E (2006) Dementia and the identity of the person. In: Hughes JC, Louw SJ, Sabat SR (eds) Dementia: mind, meaning and the person. Oxford University Press, Oxford, UK, pp 163–177Google Scholar
  20. Office for National Statistics (2017) Overview of the UK population: July 2017. ONS, London, UKGoogle Scholar
  21. Prince M, Prina M, Guerchet M (2013) World Alzheimer report 2013. Journey of caring: an analysis of long-term care for dementia. Alzheimer’s Disease International, London, UKGoogle Scholar
  22. Reitan JB (2006) Inuit vernacular design as a community of practice for learning. CoDesign 2(02):71–80CrossRefGoogle Scholar
  23. Rodgers PA, Tennant A (2014) Disrupting health and social care by design. In: Proceedings of the 9th international conference on design & emotion, Bogota, ColombiaGoogle Scholar
  24. Sanders EB-N, Stappers PJ (2014) Probes, toolkits and prototypes: three approaches to making in codesigning. CoDesign 10(1):5–14CrossRefGoogle Scholar
  25. Scharmer CO (2011) Leading from the emerging future. In: Minds for change—future of global development ceremony to mark the 50th anniversary of the BMZ Federal Ministry for Economic Cooperation and Development, Berlin, GermanyGoogle Scholar
  26. Van Klaveren R (2012) Artistic participatory practices as a vehicle for togetherness. In: Proceedings of the CUMULUS conference, Helsinki, Finland, pp. 1–11Google Scholar
  27. Wilson S, Roper A, Marshall J, Galliers J, Devane N, Booth T (2015) Codesign for people with aphasia through tangible design languages. CoDesign 11(1):21–34CrossRefGoogle Scholar

Copyright information

© Springer International Publishing AG 2018

Authors and Affiliations

  1. 1.ImaginationLancaster UniversityLancasterUK

Personalised recommendations