skip to main content
10.1145/2470654.2481363acmconferencesArticle/Chapter ViewAbstractPublication PageschiConference Proceedingsconference-collections
research-article

A design-led inquiry into personhood in dementia

Published: 27 April 2013 Publication History

Abstract

Writers and practitioners in dementia care have invoked personhood to offer potential for preserving the agency of people living with dementia. In this context we use personhood to explore how relationships bring agentive potential to experience-centered design through a co-creative, design-led inquiry with Gillian, a woman living with dementia, and John her husband. We designed bespoke probes to empathically engage the couple in the design of both jewellery and digital jewellery to support Gillian's personhood. Our design activity addressed the relationships involved in the context of Gillian's family life and the progression of her illness and how they could be mediated technologically. Reminiscence became, through Gillian and John's own hands, acts of sense making and legacy. The process of design became the way of conducting the inquiry and the designed artifacts became ways of posing questions to make sense of our experiences together.

Supplementary Material

suppl.mov (chi1067-file3.mp4)
Supplemental video

References

[1]
Abas, Y and Dervin, F. Digital Technologies of the Self. Cambridge Scholars Publishing, 2009.
[2]
Boehner, K., Vertesi, J., Sengers, P. and Dourish, P. How HCI interprets the probes. In Proceedings of CHI 2007, ACM Press (2007), 1077--1086.
[3]
Cohen, D. and Eisdorfer, C. The loss of self: A family resource for the care of Alzheimer's disease and related dis-orders. Norton, New York.
[4]
Fontana, A., and Smith, R. W. Alzheimer's disease victims: The 'unbecoming' of self and the normalization of competence. Sociological Perspectives, 32, 1 (1989), 35--46.
[5]
Frohlich, D. and Murphy, R. The Memory Box. Personal and Ubiquitous Computing. 4, 4 (2000), 238.
[6]
Fusakul Sompit, M. Interactive Ornaments: Emotions in Motions Doctoral thesis: Royal College of Art, 2002.
[7]
Gaver, W., Dunne, A. and Pacenti, E. Design: Cultural probes In Interactions: New visions of human-computer interaction 6, 1 (1999), 21--29.
[8]
Harris, P. B. and Keady, J. Editorial: Dementia The International Journal of Social Research and Practice. 5, 1 (2006), 5--9.
[9]
Hassenzahl, M. The interplay of beauty, goodness, and usability in interactive products. Human-Computer Interaction. 19, 4 (2004), 319--349.
[10]
Karapano, E., Zimmerman, J., Forlizzi, J. and Martens, J. 2009. User experience over time: an initial framework. In Proceedings of CHI 2009, ACM Press (2009), 729--738.
[11]
Kettley, S. Crafts praxis for critical wearables design. AI and Society 22, 1 (2007), 5--14.
[12]
Kettley, S. and Smyth, M. The Materiality of Wearable Computers - Craft and Authentic User Experience The Design Journal, 7, 2 (2004), 32--41.
[13]
Kitwood, T. Dementia reconsidered: The person comes first. Open University Press, 1997.
[14]
Kitwood, T. and Bredin, K. Towards a theory of dementia care: Personhood and well-being. Ageing and Society. 12 (1992), 269--287.
[15]
Kontos, P. C. Embodied selfhood in Alzheimer's disease - Rethinking person-centred care. Dementia. 4, 4 (2005), 553--570.
[16]
Kontos, P. C. and Naglie, G. Bridging theory and practice: Imagination, the body, and person-centred dementia care. Dementia 6, 4 (2007), 549--569.
[17]
Lindsay, S., Brittain, K., Jackson, D., Ladha, C., Ladha, K., and Olivier, P. Empathy, participatory design and people with dementia. In Proceedings of CHI 2012, ACM Press (2012), 521--530.
[18]
McCarthy, J. and Wright, P. Technology as Experience. The MIT Press, Cambridge, MA, 2004.
[19]
Norman, D. Emotional design. New York, Basic Books, 2004.
[20]
Olivier, P. and Wallace, J. Digital technologies and the emotional family. International Journal of HumanComputing Studies. 67, 2 (2009), 204--214.
[21]
Petrelli, D., Van den Hoven, E. and Whittaker, S. Making history: intentional capture of future memories. In Proc CHI 2009, ACM Press (2009), 1723--1732.
[22]
Potter, L. My life in a sock drawer: Unworn jewellery and the construction and preservation of identity. homepages.gold.ac.uk/laurapotter/unwornjewellery
[23]
Priimägi, L. Millennium 11. Estonian Academy of Arts, 1997.
[24]
Sabat, S. and Harré, R. The Construction and Deconstruction of Self in Alzheimer's Disease Ageing and Society, 12, 4 (1992), 443--461.
[25]
Tractinsky, N. and Zmiri, D. Exploring attributes of skins as potential antecedents of emotion. In HCI. Aesthetic Computing, P. Fishwick, (Ed.), MIT Press, 2004.
[26]
Wallace, J., McCarthy, J., Wright, P. and Olivier, P. Making Design Probes Work. In Proc CHI 2013, ACM Press (2013).
[27]
Wallace, J., Thieme, A., Wood, G., Schofield, G. and Olivier, P. Enabling self, intimacy and a sense of home in dementia: an enquiry into design in a hospital setting. In Proc CHI 2012, ACM Press (2012), 2692--2638.
[28]
Wallace, J., Dearden, A. and Fisher, T. The Significant Other. In Proceedings of Wearable Futures, University of Wales, Newport, 2005.
[29]
Wallace, J. and Dearden, A. Digital Jewellery as Experience. In Future Interaction Design, A. Pirhonen, H. Isomäaki, C. Roast and P. Saariluoma (Eds.) Springer Verlag, 2004.
[30]
Webster, G., Fels, D. I., Gowans, G. and Hanson, V. L. Portraits of Individuals with dementia: Views of Care Managers. In Proceedings of HCI 2011, British Computer Society (2011), 331--340.
[31]
White H. and Steel E. Agents Of Change: From Collection To Connection. The Design Journal, 10, 2 (2007), 22--34.
[32]
Wright, P. and McCarthy, J. Experience-centered Design: Designers, Users, and Communities in Dialogue, Morgan & Claypool, 2007.
[33]
Wright, P., Wallace, J. and McCarthy, J. Aesthetics and experience-centred design ACM Transactions on Computer-Human Interaction. 15, 4 (2008), 1--21.

Cited By

View all
  • (2024)Sondas Culturais: bases, adaptações e sua aplicação com idosos com demênciasBlucher Design Proceedings10.5151/cidiconcic2023-82_649954(1251-1262)Online publication date: Jun-2024
  • (2024)Zineography: A Community-Based Research-through-Design Method of Zine Making for Unequal ContextsProceedings of the 13th Nordic Conference on Human-Computer Interaction10.1145/3679318.3685390(1-17)Online publication date: 13-Oct-2024
  • (2024)Know Me Inside-Out: Conversational and Quiz-Based System for Reminiscence Therapy for People with DementiaCompanion of the 2024 on ACM International Joint Conference on Pervasive and Ubiquitous Computing10.1145/3675094.3678377(809-815)Online publication date: 5-Oct-2024
  • Show More Cited By

Index Terms

  1. A design-led inquiry into personhood in dementia

    Recommendations

    Comments

    Information & Contributors

    Information

    Published In

    cover image ACM Conferences
    CHI '13: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems
    April 2013
    3550 pages
    ISBN:9781450318990
    DOI:10.1145/2470654
    Permission to make digital or hard copies of all or part of this work for personal or classroom use is granted without fee provided that copies are not made or distributed for profit or commercial advantage and that copies bear this notice and the full citation on the first page. Copyrights for components of this work owned by others than ACM must be honored. Abstracting with credit is permitted. To copy otherwise, or republish, to post on servers or to redistribute to lists, requires prior specific permission and/or a fee. Request permissions from [email protected]

    Sponsors

    Publisher

    Association for Computing Machinery

    New York, NY, United States

    Publication History

    Published: 27 April 2013

    Permissions

    Request permissions for this article.

    Check for updates

    Author Tags

    1. dementia
    2. empathy
    3. experience-centered design
    4. memory
    5. personhood
    6. probes
    7. reflection
    8. reminiscence
    9. self

    Qualifiers

    • Research-article

    Conference

    CHI '13
    Sponsor:

    Acceptance Rates

    CHI '13 Paper Acceptance Rate 392 of 1,963 submissions, 20%;
    Overall Acceptance Rate 6,199 of 26,314 submissions, 24%

    Upcoming Conference

    CHI 2025
    ACM CHI Conference on Human Factors in Computing Systems
    April 26 - May 1, 2025
    Yokohama , Japan

    Contributors

    Other Metrics

    Bibliometrics & Citations

    Bibliometrics

    Article Metrics

    • Downloads (Last 12 months)146
    • Downloads (Last 6 weeks)30
    Reflects downloads up to 16 Feb 2025

    Other Metrics

    Citations

    Cited By

    View all
    • (2024)Sondas Culturais: bases, adaptações e sua aplicação com idosos com demênciasBlucher Design Proceedings10.5151/cidiconcic2023-82_649954(1251-1262)Online publication date: Jun-2024
    • (2024)Zineography: A Community-Based Research-through-Design Method of Zine Making for Unequal ContextsProceedings of the 13th Nordic Conference on Human-Computer Interaction10.1145/3679318.3685390(1-17)Online publication date: 13-Oct-2024
    • (2024)Know Me Inside-Out: Conversational and Quiz-Based System for Reminiscence Therapy for People with DementiaCompanion of the 2024 on ACM International Joint Conference on Pervasive and Ubiquitous Computing10.1145/3675094.3678377(809-815)Online publication date: 5-Oct-2024
    • (2024)Mariana's Song: Materializing Personhood through Non-Linear Multisensory Experiences Designed for People Living with Advanced DementiaProceedings of the 2024 ACM Designing Interactive Systems Conference10.1145/3643834.3660724(819-843)Online publication date: 1-Jul-2024
    • (2024)Towards Designing for Multimodal Remembering: Findings from an Interview StudyExtended Abstracts of the CHI Conference on Human Factors in Computing Systems10.1145/3613905.3647965(1-6)Online publication date: 11-May-2024
    • (2024)Family Caregiver Experiences of Using a Mobile App for Music-based Training to Support Dementia CareProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642308(1-16)Online publication date: 11-May-2024
    • (2024)Designing for Caregiver-facing Values Elicitation ToolsProceedings of the 2024 CHI Conference on Human Factors in Computing Systems10.1145/3613904.3642214(1-20)Online publication date: 11-May-2024
    • (2024)Designing sensory and cognitive stimulation activities with and for people living with moderate to late-stage dementiaDesign for Health10.1080/24735132.2024.2434376(1-19)Online publication date: 3-Dec-2024
    • (2024)Reflections beyond the thesis—exploring wellbeing, emotional work and research identity following a PhDThe Design Journal10.1080/14606925.2024.241918927:6(1081-1100)Online publication date: 24-Oct-2024
    • (2023)Time to Reflect. Exploring wellbeing, emotional work and research identity following a PhD.Blucher Design Proceedings10.5151/ead2023-5GLA-02FULL_TimetoReflect_Robertson_Lim(893-903)Online publication date: Dec-2023
    • Show More Cited By

    View Options

    Login options

    View options

    PDF

    View or Download as a PDF file.

    PDF

    eReader

    View online with eReader.

    eReader

    Figures

    Tables

    Media

    Share

    Share

    Share this Publication link

    Share on social media