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Co-creating Design Opportunities for Social Technology in the Context of Dementia

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Dementia Lab 2021: Supporting Ability Through Design (D-Lab 2021)

Part of the book series: Design For Inclusion ((DFI,volume 2))

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Abstract

Maintaining social participation in late life is an important component of general well-being. For people with dementia, participating in social interactions may become increasingly challenging with the progression of the condition. Social technologies can potentially support and empower them in this setting, yet there is a need to get a comprehensive understanding of how their social participation is hindered and facilitated through technology. This paper presents the outcomes of four co-creation sessions conducted together with four couples. We explored their experienced social challenges and identified opportunities for design to improve their social participation. These focus on compensating for internal and external barriers through design, enhancing agency through the social and physical environment, and learning from previous experiences with existing social technologies. Furthermore, we provide recommendations for future research in the context of social technologies for people with dementia. We argue that design-research should focus on embracing the importance of a broader social context, sharing meaningful activities, and incorporating social contact into the everyday routines. The significance of these outcomes indicates the relevance of well-designed novel social technologies to enrich people’s with dementia experience in the social context.

The first two authors contributed equally to the paper.

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Notes

  1. 1.

    Manuscript in preparation.

References

  1. Livingston, G., Sommerlad, A., Orgeta, V., Costafreda, S.G., Huntley, J., Ames, D., Ballard, C., Banerjee, S., Burns, A., Cohen-Mansfield, J., Cooper, C., Fox, N., Gitlin, L.N., Howard, R., Kales, H.C., Larson, E.B., Ritchie, K., Rockwood, K., Sampson, E.L., Samus, Q., Schneider, L.S., Selbæk, G., Teri, L., Mukadam, N.: Dementia prevention, intervention, and care (Dec 2017). https://doi.org/10.1016/S0140-6736(17)31363-6

  2. Gaggi, O., Kolasinska, A., Palazzi, C.E., Quadrio, G.: Safety first? users’ perception of wearable sensor networks for aging. Mob. Netw. Appl., 1–9 (Feb 2019). https://doi.org/10.1007/s11036-019-01234-6

  3. Derksen, E., Vernooij-Dassen, M., Gillissen, F., Olde Rikkert, M., Scheltens, P.: Impact of diagnostic disclosure in dementia on patients and carers: qualitative case series analysis. Aging & Ment. Health 10(5), 525–531 (Sep 2006). https://doi.org/10.1080/13607860600638024

  4. Tranvåg, O., Petersen, K.A., Nåden, D.: Relational interactions preserving dignity experience: Perceptions of persons living with dementia. Nurs. Ethics 22(5), 577–593 (Aug 2015). https://doi.org/10.1177/0969733014549882

  5. Van Der Roest, H.G., Meiland, F.J., Comijs, H.C., Derksen, E., Jansen, A.P., Van Hout, H.P., Jonker, C., Dröes, R.M.: What do community-dwelling people with dementia need? a survey of those who are known to care and welfare services. Int. Psychogeriatr. 21(5), 949–965 (2009). https://doi.org/10.1017/S1041610209990147

    Article  Google Scholar 

  6. Dröes, R.M., Chattat, R., Diaz, A., Gove, D., Graff, M., Murphy, K., Verbeek, H., Vernooij-Dassen, M., Clare, L., Johannessen, A., Roes, M., Verhey, F., Charras, K., van Audenhove, C., Casey, D., Evans, S., Fabbo, A., Franco, M., Gerritsen, D., Vittoria Gianelli, M., Gonalves-Pereira, M., Gzil, F., van Hout, H., Innes, A., Hee Jeon, Y., Koopmans, R., Kristensen, F., Losada Baltar, A., McEvoy, P., McHugh, J., Meiland, F., Moniz-Cook, E., Parkes, J., Rymaszewska, J., Spruytte, N., Surr, C., de Vugt, M., Wolf-Ostermann, K., Zuidema, S.: Social health and dementia: a European consensus on the operationalization of the concept and directions for research and practice. Aging Ment. Health 21(1), 4–17 (2017). https://doi.org/10.1080/13607863.2016.1254596

    Article  Google Scholar 

  7. Webb, J.: Conversation takes two: understanding interactions with people with dementia. Disabil. Soc. 32(7), 1102–1106 (Aug 2017). https://doi.org/10.1080/09687599.2017.1321225

  8. Wallace, J., Wright, P.C., McCarthy, J., Green, D.P., Thomas, J., Olivier, P.: A design-led inquiry into personhood in dementia. In: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems—CHI ’13, p. 2617. ACM Press, New York, New York, USA (2013). https://doi.org/10.1145/2470654.2481363

  9. Kitwood, T., Bredin, K.: Towards a theory of dementia care: personhood and well-being. Ageing Soc. 12(3), 269–287 (1992). https://doi.org/10.1017/S0144686X0000502X

    Article  Google Scholar 

  10. Sabat, S.R., Harré, R.: The construction and deconstruction of self in alzheimer’s disease. Ageing Soc. 12(4), 443–461 (1992). https://doi.org/10.1017/S0144686X00005262

    Article  Google Scholar 

  11. Dewing, J.: Process consent and research with older persons living with dementia. Res. Ethics 4(2), 59–64 (2008). https://doi.org/10.1177/174701610800400205

    Article  Google Scholar 

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

    Google Scholar 

  13. McCormack, B., Reed, J.: Editorial: ‘evidence-based healthcare—a lot of bull?’. Int. J. Older People Nurs. 1(3), 129–130 (sep 2006). https://doi.org/10.1111/j.1748-3743.2006.00035.x

  14. Constant, E., Pickering, A.: The mangle of practice: time, agency, and science. Technol. Cult. 38(3), 815 (Jul 1997). https://doi.org/10.2307/3106908

  15. Suchman, L.: Agencies in technology design: feminist reconfigurations. In: Online Proceedings of the 5th European Symposium on Gender ICT

    Google Scholar 

  16. Tholander, J., Normark, M., Rossitto, C.: Understanding agency in interaction design materials. In: Conference on Human Factors in Computing Systems—Proceedings, pp. 2499–2508. ACM Press, New York, New York, USA (2012). https://doi.org/10.1145/2207676.2208417

  17. Lazar, A., Edasis, C., Piper, A.M.: Supporting people with dementia in digital social sharing. In: Conference on Human Factors in Computing Systems—Proceedings, vol. 2017–May, pp. 2149–2162. Association for Computing Machinery, New York, NY, USA (may 2017). https://doi.org/10.1145/3025453.3025586

  18. Lazar, A., Edasis, C., Piper, A.M.: A critical lens on dementia and design in HCI. In: Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems—CHI ’17. pp. 2175–2188. ACM Press (2017). https://doi.org/10.1145/3025453.3025522

  19. Hodge, J., Balaam, M., Hastings, S., Morrissey, K.: Exploring the design of tailored virtual reality experiences for people with dementia. In: Conference on Human Factors in Computing Systems—Proceedings, vol. 2018–April, pp. 1–13. Association for Computing Machinery, New York, New York, USA (Apr 2018). https://doi.org/10.1145/3173574.3174088

  20. Houben, M., Brankaert, R., Bakker, S., Kenning, G., Bongers, I., Eggen, B.: Foregrounding everyday sounds in dementia. In: DIS 2019—Proceedings of the 2019 ACM Designing Interactive Systems Conference, pp. 71–83. Association for Computing Machinery, Inc, New York, New York, USA (Jun 2019). https://doi.org/10.1145/3322276.3322287

  21. Morrissey, K., McCarthy, J., Pantidi, N.: The value of experience-centred design approaches in dementia research contexts. In: Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems—CHI ’17, pp. 1326–1338. ACM Press, New York, New York, USA (2017). https://doi.org/10.1145/3025453.3025527

  22. Thoolen, M., Brankaert, R., Lu, Y.: AmbientEcho: exploring interactive media experiences in the context of residential dementia care. In: Proceedings of the 2020 ACM Designing Interactive Systems Conference. pp. 1495–1508. ACM, New York, NY, USA (Jul 2020). https://doi.org/10.1145/3357236.3395432

  23. Branco, R.M., Quental, J., Ribeiro, Ó.: Personalised participation: an approach to involve people with dementia and their families in a participatory design project. CoDesign 13(2), 127–143 (2017). https://doi.org/10.1080/15710882.2017.1310903

    Article  Google Scholar 

  24. Hendriks, N., Huybrechts, L., Slegers, K., Wilkinson, A.: Valuing implicit decision-making in participatory design: a relational approach in design with people with dementia. Des. Stud. 59, 58–76 (2018). https://doi.org/10.1016/j.destud.2018.06.001

    Article  Google Scholar 

  25. Morrissey, K., Wood, G., Green, D., Pantidi, N., McCarthy, J.: ’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—DIS ’16, vol. 32, pp. 1008–1020. ACM Press, New York, New York, USA (2016). https://doi.org/10.1145/2901790.2901798

  26. Lazar, A., Edasis, C., Piper, A.M.: A critical lens on dementia and design in HCI. In: Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems—CHI ’17, pp. 2175–2188. ACM Press (2017). https://doi.org/10.1145/3025453.3025522

  27. Foley, S., Welsh, D., Pantidi, N., Morrissey, K., Nappey, T., McCarthy, J.: Printer pals: experience-centered design to support agency for people with dementia. Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems—CHI ’19, pp. 1–13 (2019). https://doi.org/10.1145/3290605.3300634

  28. Thoolen, M., Brankaert, R., Lu, Y.: Sentic: A tailored interface design for people with dementia to access music. In: Companion publication of the 2019 on designing interactive systems conference 2019 companion—DIS ’19 Companion, pp. 57–60. ACM Press, New York, New York, USA (2019). https://doi.org/10.1145/3301019.3325152

  29. Wright, P., McCarthy, J.: Experience-centered design: designers, users, and communities in Dialogue. Synth. Lect. Hum.-Cent.Ed Inform. 3(1), 1–123 (Jan 2010). https://doi.org/10.2200/S00229ED1V01Y201003HCI009

  30. Welsh, D., Morrissey, K., Sarah, F., McNaney, R., Salis, C., McCarthy, J., Vines, J.: Ticket to talk: supporting conversation between young people and people with dementia through digital media. In: Proceedings of the 2018 CHI Conference on Human Factors in Computing Systems—CHI ’18 (2018). https://doi.org/10.1145/3173574.3173949

  31. Suijkerbuijk, S., Brankaert, R., de Kort, Y.A., Snaphaan, L.J., den Ouden, E.: Seeing the first-person perspective in dementia: a qualitative personal evaluation game to evaluate assistive technology for people affected by dementia in the home context. Interact. Comput. 27(1), 47–59 (jan 2015). https://doi.org/10.1093/iwc/iwu038

  32. Treadaway, C., Kenning, G.: Sensor e-textiles: person centered co-design for people with late stage dementia. Work. Older People 20(2), 76–85 (Jun 2016). https://doi.org/10.1108/WWOP-09-2015-0022

  33. Meiland, F., Innes, A., Mountain, G., Robinson, L., van der Roest, H., García- Casal, J.A., Gove, D., Thyrian, J.R., Evans, S., Dröes, R.M., Kelly, F., Kurz, A., Casey, D., Szczesniak, D., Dening, T., Craven, M.P., Span, M., Felzmann, H., Tsolaki, M., Franco-Martin, M.: Technologies to support community—dwelling persons with dementia: a position paper on issues regarding development, usability, effectiveness and cost-effectiveness, deployment, and ethics. JMIR Rehabil. Assist. Technol. 4(1), e1 (jan 2017). https://doi.org/10.2196/rehab.6376

  34. Mäki, O., Topo, P.: User needs and user requirements of people with dementia: multimedia application for entertainment. Assist. Technol. Res. Ser. 24, 61–75 (2009)

    Google Scholar 

  35. Astell, A.J., Ellis, M.P., Bernardi, L., Alm, N., Dye, R., Gowans, G., Campbell, J.: Using a touch screen computer to support relationships between people with dementia and caregivers. Interact. Comput. 22(4), 267–275 (2010). https://doi.org/10.1016/j.intcom.2010.03.003

  36. Bartlett, R.: Modifying the diary interview method to research the lives of people with dementia. Qual. Health Res. 22(12), 1717–1726 (2012). https://doi.org/10.1177/1049732312462240

  37. Bourgeois, M.S., Dijkstra, K., Burgio, L., Allen-Burge, R.: Memory aids as an augmentative and alternative communication strategy for nursing home residents with dementia. AAC: Augment. Altern. Commun. 17(3), 196–210 (2001). https://doi.org/10.1080/aac.17.3.196.210

  38. Pinto-Bruno, A´. C., García-Casal, J.A., Csipke, E., Jenaro-Río, C., Franco-Martín, M.: ICT-based applications to improve social health and social participation in older adults with dementia: a systematic literature review. Aging Ment. Health 21(1), 58–65 (2017). https://doi.org/10.1080/13607863.2016.1262818

  39. Bourgeois, M.S.: Enhancing conversation skills in patients with alzheimer’s disease using a prosthetic memory aid. J. Appl. Behav. Anal. 23(1), 29–42 (Mar 1990). https://doi.org/10.1901/jaba.1990.23-29

  40. Astell, A., Alm, N., Gowans, G., Ellis, M., Dye, R., Campbell, J.: CIRCA: a communication prosthesis for dementia. Assist. Technol. Res. Ser. 21, 67–76 (2008)

    Google Scholar 

  41. Smith, K.L., Crete-Nishihata, M., Damianakis, T., Baecker, R.M., Marziali, E.: Multimedia biographies: a reminiscence and social stimulus tool for persons with cognitive impairment. J. Technol. Hum. Serv. 27(4), 287–306 (Nov 2009). https://doi.org/10.1080/15228830903329831

  42. Hodge, J., Montague, K., Hastings, S., Morrissey, K.: Exploring media capture of meaningful experiences to support families living with dementia, pp. 1–14 (2019). https://doi.org/10.1145/3290605.3300653

  43. van Boekel, Wouters, Grimberg, van der Meer, Luijkx: Perspectives of stakeholders on technology use in the care of community-living older adults with dementia: a systematic literature review. Healthcare 7(2), 73 (2019). https://doi.org/10.3390/healthcare7020073

  44. Smith, S.K., Mountain, G.A.: New forms of Information and Communication Technology (ICT) and the potential to facilitate social and leisure activity for people living with dementia. Int. J. Comput. Healthc. 1(4), 332 (2012). https://doi.org/10.1504/IJCIH.2012.051810

    Article  Google Scholar 

  45. Lorenz, K., Freddolino, P.P., Comas-Herrera, A., Knapp, M., Damant, J.: Technology-based tools and services for people with dementia and carers: mapping technology onto the dementia care pathway. Dementia 18(2), 725–741 (2019). https://doi.org/10.1177/1471301217691617

    Article  Google Scholar 

  46. Zimmerman, J., Forlizzi, J.: Research through design in HCI. In: Olson, J.S., Kellogg, W.A. (eds.) Ways of knowing in HCI, pp. 167–189 (2014). https://doi.org/10.1007/978-1-4939-0378-8

  47. Brankaert, R.: Design for dementia: a design-driven living lab approach to involve people with dementia and their context. Ph.D. thesis, TU Eindhoven (2016)

    Google Scholar 

  48. Hendriks, N., Huybrechts, L., Wilkinson, A., Slegers, K.: Challenges in doing participatory design with people with dementia. In: Proceedings of the 13th Participatory Design Conference on Short Papers, Industry Cases, Workshop Descriptions, Doctoral Consortium papers, and Keynote abstracts—PDC ’14, vol. 2, pp. 33–36. ACM Press, New York, New York, USA (2014). https://doi.org/10.1145/2662155.2662196

  49. Lindsay, S., Brittain, K., Jackson, D., Ladha, C., Ladha, K., Olivier, P.: Empathy, participatory design and people with dementia. In: Proceedings of the 2012 ACM annual conference on Human Factors in Computing Systems—CHI ’12. p. 521. No. March 2014, ACM Press, New York, New York, USA (2012). https://doi.org/10.1145/2207676.2207749

  50. Suijkerbuijk, S., Nap, H.H., Cornelisse, L., Ijsselsteijn, W.A., De Kort, Y.A., Minkman, M.M., Baglio, F.: Active involvement of people with dementia: a systematic review of studies developing supportive technologies. J. Alzheimer’s Dis. 69(4), 1041–1065 (2019). https://doi.org/10.3233/JAD-190050

    Article  Google Scholar 

  51. Sanders, E.B., Stappers, P.J.: Probes, toolkits and prototypes: three approaches to making in codesigning (2014). https://doi.org/10.1080/15710882.2014.888183

  52. Nygård, L.: How can we get access to the experiences of people with dementia? Scand. J. Occup. Ther. 13(2), 101–112 (Jan 2006). https://doi.org/10.1080/11038120600723190

  53. Den Haan, M.C., Brankaert, R.G.A., Lu, Y.: The leisure time canvas. Conf. Proc. Acad. Des. Innov. Manag. 2(1), 4–14 (Nov 2019). https://doi.org/10.33114/adim.2019.01.421

  54. Herron, R., Dansereau, L., Wrathall, M., Funk, L., Spencer, D.: Using a flexible diary method rigorously and sensitively with family carers. Qual. Health Res. 29(7), 1004–1015 (2019). https://doi.org/10.1177/1049732318816081

    Article  Google Scholar 

  55. Bartlett, R.: Modifying the diary interview method to research the lives of people with dementia. Qual. Health Res. 22(12), 1717–1726 (2012). https://doi.org/10.1177/1049732312462240

  56. Kenning, G.: Reciprocal design: inclusive design approaches for people with late stage dementia. Des. Health 2(1), 142–162 (2018). https://doi.org/10.1080/24735132.2018.1453638

    Article  Google Scholar 

  57. Hodge, J., Foley, S., Brankaert, R., Kenning, G., Lazar, A., Boger, J., Morrissey, K.: Relational, flexible, everyday: learning from ethics in dementia research. In: Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems, pp. 1–16. ACM, New York, NY, USA (Apr 2020). https://doi.org/10.1145/3313831.3376627

  58. Braun, V., Clarke, V.: Using thematic analysis in psychology. Qual. Res. Psychol. 3(2), 77–101 (Jan 2006). https://doi.org/10.1191/1478088706qp063oa

  59. Sanders, D., Scott, P.: Literature review: technological interventions and their impact on quality of life for people living with dementia. BMJ Health Care Inform. 27(1), 1–10 (2020). https://doi.org/10.1136/bmjhci-2019-100064

    Article  Google Scholar 

  60. Lazar, A., Thompson, H.J., Demiris, G.: Design recommendations for recreational systems involving older adults living with dementia. J. Appl. Gerontol. 37(5), 595–619 (May 2018). https://doi.org/10.1177/0733464816643880

  61. Yasuda, K., Kuwahara, N., Morimoto, K.: Remote reminiscence talking and scheduling prompter for individuals with dementia using video phone. Lecture Notes in Computer Science (including subseries Lecture Notes in Artificial Intelligence and Lecture Notes in Bioinformatics) 5614 LNCS (PART 1), 429–438 (2009). https://doi.org/10.1007/978-3-642-02707-949

  62. Shannon, K., Bail, K., Neville, S.: Dementia-friendly community initiatives: an integrative review. J. Clin. Nurs. 28(11–12), 2035–2045 (Jun 2019). https://doi.org/10.1111/jocn.14746

  63. Kontos, P.C., Naglie, G.: Bridging theory and practice. Dementia 6(4), 549–569 (Nov 2007). https://doi.org/10.1177/1471301207084394

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Acknowledgements

We would like to thank all participants that shared their experiences during the study. We are grateful to ZonMW for funding our ‘Dementia Dynamics in Design’ project in the Create Health program, a multi-disciplinary consortium consisting of researchers from the Department of Industrial Design of the Eindhoven University of Technology, the Tilburg School of Social and Behavioral Sciences, a Mental Care institute (GGzE), and an innovation network for active and healthy ageing (Corporation Slimmer Leven 2020).

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Authors and Affiliations

  1. Department of Industrial Design, Eindhoven University of Technology, Eindhoven, The Netherlands

    Agnieszka Barbara Kolasinska, Myrte Thoolen, Sebastiaan Peek, Yuan Lu & Rens Brankaert

  2. Department of General Psychology, University of Padua, Padua, Italy

    Agnieszka Barbara Kolasinska

  3. School of Social and Behavioral Sciences, Tilburg University, Tilburg, The Netherlands

    Sebastiaan Peek

  4. School for Allied Health Professions, Fontys University of Applied Sciences, Eindhoven, The Netherlands

    Rens Brankaert

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  1. Agnieszka Barbara Kolasinska
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Correspondence to Myrte Thoolen .

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Editors and Affiliations

  1. Department of Industrial Design, Eindhoven University of Technology, Eindhoven, The Netherlands

    Rens Brankaert

  2. Health Design Lab, Emily Carr University of Art + Design, Vancouver, BC, Canada

    Caylee Raber

  3. Department of Industrial Design, Eindhoven University of Technology, Eindhoven, The Netherlands

    Maarten Houben

  4. Health Design Lab, Emily Carr University of Art + Design, Vancouver, BC, Canada

    Paulina Malcolm

  5. Health Design Lab, Emily Carr University of Art + Design, Vancouver, BC, Canada

    Jon Hannan

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Kolasinska, A.B., Thoolen, M., Peek, S., Lu, Y., Brankaert, R. (2021). Co-creating Design Opportunities for Social Technology in the Context of Dementia. In: Brankaert, R., Raber, C., Houben, M., Malcolm, P., Hannan, J. (eds) Dementia Lab 2021: Supporting Ability Through Design. D-Lab 2021. Design For Inclusion, vol 2. Springer, Cham. https://doi.org/10.1007/978-3-030-70293-9_11

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