Kellie Morrissey
ABSTRACT
This paper presents an ethnographic study exploring the role of props and music in dementia care in order to engage participants and inform design. Our findings extend current understandings of participation to reveal that a more nuanced view of participation is required when designing in the dementia context. Our work suggests that participation in music sessions for people with dementia is about touch and intimacy, connection via movement, shifting roles, materiality and using props to disengage. We discuss these themes, their implications for Experience-Centered Design and offer a set of future directions in designing for and with people with dementia that underpin the participation of people with dementia in a meaningful and enriching way.
- Norman Alm, Richard Dye, Gary Gowans, Jim Campbell, Arlene Astell, and Maggie Ellis. 2002. Designing an interface usable by people with dementia. In Proceedings of the 2003 conference on Universal usability (CUU'03). ACM, New York, NY, USA, 156157. DOI=http://dx.doi.org/10.1145/957205.957237 Google Scholar
Digital Library
- Alzheimer's Society of Ireland. 2015. Performance by People with Dementia Set to Challenge Perceptions. Retrieved from: https://alzheimer.ie/getattachment/About-Us/Newsand-Media/Press-Releases/Purple-Pops-Final.pdf.aspx, 17th January 2016Google Scholar
- Alzheimer's Society of Ireland. 2016. Mental Capacity Act 2005. Retrieved from: https://www.alzheimers.org.uk/site/scripts/documents_i nfo.php?documentID=354, 23rd March 2016Google Scholar
- Kristina Andersen and Danielle Wilde. 2012. Circles and props: making unknown technology. Interactions, 19, 3 (May 2012), 60--65. DOI=http://dx.doi.org/10.1145/2168931.2168944 Google ScholarDigital Library
- Majda Azermain. 2015. Dealing with behavioral and psychological symptoms of dementia: a general overview. Psychology Research and Behavior Management, 8 (2015): 181.Google ScholarCross Ref
- Louise Barkhuus, Arvid Engström, and Goranka Zoric. 2014. Watching the footwork: second screen interaction at a dance and music performance. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI'14). ACM, New York, NY, USA, 1305--1314. DOI=http://dx.doi.org/10.1145/2556288.2557369 Google ScholarDigital Library
- Ashok Bharucha, Vivek Anand, Jodi Forlizzi, Mary Amanda Dew, Charles F. Reynolds, Scott Stevens, and Howard Wactlar. 2009. Intelligent assistive technology applications to dementia care: current capabilities, limitations, and future challenges. The American Journal of Geriatric Psychiatry, 17(2): 88--104.Google ScholarCross Ref
- Dawn Brooker. 2003. What is Person-Centred Care in Dementia?. Reviews in Clinical Gerontology, 13(03): 215--222.Google ScholarCross Ref
- Melissa Brotons and Susan Koger. 2000. The impact of music therapy on language functioning in dementia. Journal of Music Therapy, 37 (3): 183--195.Google ScholarCross Ref
- Kathy Charmaz. 2014. Constructing Grounded Theory. London: Sage Publications.Google Scholar
- Hsin Chu, Chyn-Yng Yang, Yu Lin, Keng-Liang Ou, Tso-Ying Lee, PhD, Anthony Paul O'Brien and KueiRu Chou. 2013. The impact of group music therapy on depression and cognition in elderly persons with dementia: a randomized controlled study. Biological Research for Nursing, 16 (2): 209--217.Google ScholarCross Ref
- Ragan Fox. 2010. Remembering daddy: Autoethnographic reflections of my father and Alzheimer's disease. Text and Performance Quarterly, 30 (1): 3--20.Google ScholarCross Ref
- William Gaver, Andy Boucher, John Bowers, Mark Blythe, Nadine Jarvis, David Cameron, Tobie Kerridge, Alex Wilkie, Robert Phillips, and Peter Wright. 2011. The photostroller: supporting diverse care home residents in engaging with the world. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI'11). ACM, New York, NY, USA, 1757--1766. http://doi.acm.org/10.1145/1978942.1979198 Google ScholarDigital Library
- Berto Gonzalez, Erin Carroll, and Celine Latulipe. 2012. Dance-inspired technology, technology-inspired dance. In Proceedings of the 7th Nordic Conference on Human-Computer Interaction: Making Sense Through Design (NordiCHI'12). ACM, New York, NY, USA, 398--407. DOI=http://dx.doi.org/10.1145/2399016.2399078 Google ScholarDigital Library
- Carla F. Griggio, Mario Romero, and Germán Leiva. 2015. Towards an Interactive Dance Visualization for Inspiring Coordination Between Dancers. In Proceedings of the 33rd Annual ACM Conference Extended Abstracts on Human Factors in Computing Systems (CHI EA'15). ACM, New York, NY, USA, 1513--1518. DOI=http://dx.doi.org/10.1145/2702613.2732925 Google ScholarDigital Library
- Lisa Groger. 1995. A nursing home can be a home. Journal of Aging Studies, 9 (2): 137--153.Google ScholarCross Ref
- Sonja Grover. 2004. Why won't they listen to us? On giving power and voice to children participating in social research. Childhood, 11 (1): 81--93.Google ScholarCross Ref
- Jacob Gubrium. 1975. Living and dying at Murray Manor. Charlottesville: University of Virginia Press.Google Scholar
- Marijke van Haeften-van Dijk, Bart Hattink, Franka Meiland, Ton Bakker, and Rose-Marie Dröes. 2016. Is socially integrated community day care for people with dementia associated with higher user satisfaction and a higher job satisfaction of staff compared to nursing home-based day care?. Aging & Mental Health: 1--10.Google Scholar
- Nancy Harding and Colin Palfrey. (1997). The social construction of dementia: Confused professionals?. London: MacMillan Publications.Google Scholar
- David Hargreaves and Adrian North. 1999. The functions of music in everyday life: Redefining the social in music psychology. Psychology of Music, 27(1): 71--83.Google ScholarCross Ref
- Niels Hendriks, Liesbeth Huybrechts, Andrea Wilkinson, and Karin Slegers. 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 (PDC'14), Vol. 2. ACM, New York, NY, USA, 33--36. DOI=http://dx.doi.org/10.1145/2662155.2662196 Google ScholarDigital Library
- Christina Jonas-Simpson, & Gail J. Mitchell. (2005). Giving voice to expressions of quality of life for persons living with dementia through story, music, and art. Alzheimer's Care Today, 6 (1): 52--61.Google Scholar
- John Killick and Claire Craig. 2011. Creativity and Communication in Persons with Dementia: A Practical Guide. London: Jessica Kingsley Publishers.Google Scholar
- Tom Kitwood. 1997. The experience of dementia. Aging & Mental Health, 1(1): 13--22.Google ScholarCross Ref
- Pia Kontos. 2011. Rethinking sociability in long-term care: An embodied dimension of selfhood. Dementia, 11 (3): 329--346.Google ScholarCross Ref
- Pia Kontos and Wendy Martin. 2013. Embodiment and dementia: Exploring critical narratives of selfhood, surveillance, and dementia care. Dementia, 0 (0): 1--15.Google Scholar
- Kyungho Lee, Donna J. Cox, Guy E. Garnett, and Michael J. Junokas. 2015. Express it!: An Interactive System for Visualizing Expressiveness of Conductor's Gestures. In Proceedings of the 2015 ACM SIGCHI Conference on Creativity and Cognition (C&C'15). ACM, New York, NY, USA, 141--150. DOI=http://dx.doi.org/10.1145/2757226.2757243 Google ScholarDigital Library
- Stephen Lindsay, Katie Brittain, Daniel Jackson, Cassim Ladha, Karim Ladha, and Patrick Olivier. 2012. Empathy, participatory design and people with dementia. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI'12). ACM, New York, NY, USA, 521--530. DOI=http://dx.doi.org/10.1145/2207676.2207749 Google ScholarDigital Library
- Sarah Maiter, Laura Simich, Nora Jacobson, and Julie Wise. 2008. Reciprocity: An ethic for communitybased participatory action research. Action Research, 6 (3): 305--325.Google ScholarCross Ref
- Marina Malthouse. 2011. An autoethnography on shifting relationships between a daughter, her mother and Alzheimer's dementia (in any order). Dementia, 10 (2): 249--256.Google ScholarCross Ref
- Julia M. Mayer and Jelena Zach. 2013. Lessons learned from participatory design with and for people with dementia. In Proceedings of the 15th international conference on Human-computer interaction with mobile devices and services (MobileHCI'13). ACM, New York, NY, USA, 540--545. DOI=http://dx.doi.org/10.1145/2493190.2494436 Google ScholarDigital Library
- John McCarthy and Peter Wright. 2004. Technology as Experience. Cambridge: MIT Press. Google ScholarDigital Library
- John McCarthy and Peter Wright. 2015. Taking {A} part: The Politics and Aesthetics of Participation in Experience-Centered Design. Cambridge: MIT Press. Google ScholarDigital Library
- Gillian McColgan. 2005. A Place to Sit: Resistance Strategies Used to Create Privacy and Home by People with Dementia. Journal of Contemporary Ethnography, 34 (4): 410--433.Google ScholarCross Ref
- Jane McKeown, Amanda Clarke, Christine Ingleton, and Julie Repper. 2010. Actively involving people with dementia in qualitative research. Journal of Clinical Nursing, 19(3--14): 1935--1943.Google Scholar
- Kellie Morrissey and John McCarthy. 2015. Creative and Opportunistic Use of Everyday Music Technologies in a Dementia Care Unit. In Proceedings of the 2015 ACM SIGCHI Conference on Creativity and Cognition (C&C'15). ACM, New York, NY, USA, 295--298. DOI=http://dx.doi.org/10.1145/2757226.2757228 Google ScholarDigital Library
- Audrey Mullender and Gill Hague. 2005. Giving a voice to women survivors of domestic violence through recognition as a service user group. British Journal of Social Work, 35 (8): 1321--1341.Google ScholarCross Ref
- Donna Newman-Bluestein. 2015. What was the colourful thing with arms on the finale of Blunt Talk? Retrieved from: http://www.dancetherapymusings.com/2015/11/whatwas-the-colorful-thing-with-arms-on-the-season-finaleof-blunt-talk.html, 17th January 2016Google Scholar
- Steven Sabat and Joanna Lee. 2011. Relatedness among people diagnosed with dementia: Social cognition and the possibility of friendship. Dementia, 11 (3): 315--327.Google ScholarCross Ref
- Mayumi Sakamoto, Hiroshi Ando, and Akimitsu Tsutou. 2013. Comparing the effects of different individualized music interventions for elderly individuals with severe dementia. International Psychogeriatrics, 25(05): 775--784.Google ScholarCross Ref
- Teppo Särkämö, Eckart Altenmüller, Antoni Rodríguez-Fornells, and Isabelle Peretz. 2016. Editorial: Music, Brain, and Rehabilitation: Emerging Therapeutic Applications and Potential Neural Mechanisms. Frontiers in Human Neuroscience, 10: 103.Google ScholarCross Ref
- Dieneke Smit, Jacomine de Lange, Bernadette Willemse, Jos Twisk, and Anne Margriet Pot. 2016. Activity involvement and quality of life of people at different stages of dementia in long term care facilities. Aging & Mental Health, 20 (1): 100--109.Google ScholarCross Ref
- Jocelyn Spence, David M. Frohlich, and Stuart Andrews. 2013. Performative experience design. In CHI'13 Extended Abstracts on Human Factors in Computing Systems (CHI EA'13). ACM, New York, NY, USA, 2049--2058. DOI=http://dx.doi.org/10.1145/2468356.2468723 Google ScholarDigital Library
- Tomomi Uedaa, Yoshimi Suzukamoa, Mai Satoa, Shin-Ichi Izumia. 2013. Effects of music therapy on behavioral and psychological symptoms of dementia: a systematic review and meta-analysis. Ageing Research Reviews, 12(2): 628--641.Google ScholarCross Ref
- John Vines, Gary Pritchard, Peter Wright, Patrick Olivier, and Katie Brittain. 2015. An Age-Old Problem: Examining the Discourses of Ageing in HCI and Strategies for Future Research. ACM Trans. Comput.-Hum. Interact. 22, 1, Article 2 (February 2015), 27 pages. DOI=http://dx.doi.org/10.1145/2696867 Google ScholarDigital Library
- Jayne Wallace, John McCarthy, Peter C. Wright, and Patrick Olivier. 2013. Making design probes work. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI'13). ACM, New York, NY, USA, 3441--3450. DOI=http://dx.doi.org/10.1145/2470654.2466473 Google ScholarDigital Library
- Jayne Wallace, Peter C. Wright, John McCarthy, David Philip Green, James Thomas, and Patrick Olivier. 2013. A design-led inquiry into personhood in dementia. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI'13). ACM, New York, NY, USA, 2617--2626. http://doi.acm.org/10.1145/2470654.2481363 Google ScholarDigital Library
- Peter Wright and John McCarthy. 2010. ExperienceCentred Design. Cambridge: MIT Press.Google Scholar
- Yupeng Zhang, Teng Han, Zhimin Ren, Nobuyuki Umetani, Xin Tong, Yang Liu, Takaaki Shiratori, and Xiang Cao. 2013. BodyAvatar: creating freeform 3D avatars using first-person body gestures. In Proceedings of the 26th annual ACM symposium on User interface software and technology (UIST'13). ACM, New York, NY, USA, 387--396. DOI=http://dx.doi.org/10.1145/2501988.2502015 Google ScholarDigital Library
Index Terms
- '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
Recommendations
The Value of Experience-Centred Design Approaches in Dementia Research Contexts
CHI '17: Proceedings of the 2017 CHI Conference on Human Factors in Computing SystemsExperience-Centred Design (ECD) has been applied in numerous HCI projects to call attention to the particular and dialogical nature of people's experiences with technology. In this paper, we report on ECD within the context of publicly-funded, long-stay ...
Community engagement for research: contextual design in rural CSCW system development
C&T '13: Proceedings of the 6th International Conference on Communities and TechnologiesIn order to bring about innovation within a community-based context, different stakeholder communities often need to be engaged so that they may appropriately take part in the design process. The 'invisible' work of engagement is frequently overlooked, ...
The human touch: participatory practice and the role of facilitation in designing with communities
PDC '12: Proceedings of the 12th Participatory Design Conference: Research Papers - Volume 1Traditional PD research offers a range of methods for participant engagement. Yet little is shared of the microdynamics of participation at its most intense, when the designer as facilitator is challenged by a range of social contingencies. Engaging ...
Comments