Amanda Lazar
ABSTRACT
Designing new technologies with and for individuals with dementia is a growing topic of interest within HCI. Yet, predominant societal views contribute to the positioning of individuals with dementia as deficient and declining, and treat technology as filling a gap left by impairment. We present the perspective of critical dementia as a way of reflecting on these views in the context of recent epistemological shifts in HCI. In addition to articulating how HCI can leverage the perspective of critical dementia, we present a case analysis of technology design in art therapy involving people with dementia aimed at challenging conventional narratives. This paper calls attention to and helps solidify an agenda for how the CHI community approaches dementia, design, and technology.
- Trevor Adams. 1996. Kitwood's approach to dementia and dementia care: a critical but appreciative review. Journal of advanced nursing 23, 5: 948--953. Google Scholar
Cross Ref
- Liam J. Bannon. 1991. From Human Factors to Human Actors: The Role of Psychology and Human-Computer Interaction Studies in Systems Design. In Design at work: Cooperative Design of Computer Systems, Joan Greenbaum and Morten Kyng (eds.). Lawrence Erlbaum Associates, Inc., 25--44.Google Scholar
- Ruth Bartlett and Deborah O'Connor. 2007. From personhood to citizenship: Broadening the lens for dementia practice and research. Journal of Aging Studies 21, 2: 107--118. http://doi.org/10.1016/j.jaging.2006.09.002 Google ScholarCross Ref
- Raewyn Bassett and Janice E. Graham. 2007. Memorabilities: enduring relationships, memories and abilities in dementia. Ageing and Society 27, 4: 533. http://doi.org/10.1017/S0144686X07005971Google ScholarCross Ref
- Anne Davis Basting. 2003. Looking back from loss: Views of the self in Alzheimer's disease. Journal of Aging Studies 17, 1: 87--99. http://doi.org/10.1016/S0890-4065(02)00092-0 Google ScholarCross Ref
- Renée L. Beard, Jenny Knauss, and Don Moyer. 2009. Managing disability and enjoying life: How we reframe dementia through personal narratives. Journal of Aging Studies 23, 4: 227--235. http://doi.org/10.1016/j.jaging.2008.01.002Google ScholarCross Ref
- Susan M. Behuniak. 2011. The living dead? The construction of people with Alzheimer's disease as zombies. Ageing and Society 31, 1: 70--92. http://doi.org/10.1017/S0144686X10000693 Google ScholarCross Ref
- Mark Blythe, Peter Wright, John Bowers, et al. 2010. Age and experience: ludic engagement in a residential care setting. Proceedings of the 8th ACM Conference on Designing Interactive Systems (DIS '10): 161--170. http://doi.org/10.1145/1858171.1858200 Google ScholarDigital Library
- Susanne Bødker. 2006. When second wave HCI meets third wave challenges. Proceedings of the 4th Nordic conference on Human-computer interaction: changing roles (NordiCHI '06), ACM Press, 1--8. http://doi.org/10.1145/1182475.1182476 Google ScholarDigital Library
- Susanne Bødker. 2015. Third-wave HCI, 10 years later - participation and sharing. interactions 22, 5: 24--31. http://doi.org/10.1145/2804405Google ScholarDigital Library
- Kirsten Boehner, Rogério DePaula, Paul Dourish, and Phoebe Sengers. 2005. Affect: From Information to Interaction. Proceedings of the 4th decennial conference on Critical computing: between sense and sensibility (CC '05), ACM Press, 59--68. http://doi.org/10.1145/1094562.1094570Google ScholarDigital Library
- Robin Brewer and Anne Marie Piper. 2016. "Tell It Like It Really Is": A Case of Online Content Creation and Sharing Among Older Adult Bloggers. Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16), ACM Press, 5529--5542. http://doi.org/http://dx.doi.org/10.1145/2858036.28Google ScholarDigital Library
- Dawn Brooker. 2003. What is person-centred care in dementia? Reviews in Clinical Gerontology 13, 3: 215--222. http://doi.org/10.1017/S095925980400108X Google ScholarCross Ref
- Linda L. Buettner. 1999. Simple Pleasures: A multilevel sensorimotor intervention for nursing home residents with dementia. American Journal of Alzheimer's Disease and Other Dementias 14, 1: 41--52. http://doi.org/10.1177/153331759901400103 Google ScholarCross Ref
- Helene Burt. 2012. Art Therapy and Postmodernism: Creative Healing Through a Prism. Jessica Kingsley Publishers, London.Google Scholar
- Peter Byrne. 1995. From the depths to the surface: Art therapy as a discursive practice in the postmodern era. The Arts in Psychotherapy 22, 3: 235--239. Google ScholarCross Ref
- Kathy Charmaz. 2014. Constructing Grounded Theory. Sage Publications, London.Google Scholar
- Andy Clark. 2008. Supersizing the Mind: Embodiment, Action, and Cognitive Extension. Oxford University Press. Google ScholarCross Ref
- Jiska Cohen-Mansfield, Marcia S. Marx, Maha Dakheel-Ali, Natalie G. Regier, and Khin Thein. 2010. Can Persons With Dementia Be Engaged With Stimuli? American Journal of Geriatric Psychiatry 18, 4: 351--362. http://doi.org/10.1097/JGP.0b013e3181c531fd Google ScholarCross Ref
- Jiska Cohen-Mansfield, Marcia S. Marx, Khin Thein, and Maha Dakheel-Ali. 2010. The impact of past and present preferences on stimulus engagement in nursing home residents with dementia. Aging & mental health 14, 1: 67--73. http://doi.org/10.1080/13607860902845574 Google ScholarCross Ref
- Raymundo Cornejo, Robin Brewer, Caroline Edasis, and Anne Marie Piper. 2016. Vulnerability, Sharing, and Privacy: Analyzing Art Therapy for Older Adults with Dementia. Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (CSCW '16), ACM Press, 1572--1583. Google ScholarDigital Library
- Claire Craig. 2004. Reaching Out with the Arts: Meeting with the Person with Dementia. In Dementia and Social Inclusion: Marginalised groups and marginalised areas of dementia research, care and practice, Anthea Innes and Carole Archibald (eds.). Jessica Kingsley Publishers, 184--198.Google Scholar
- Paul Dourish. 2001. Where the Action is: The Foundations of Embodied Interaction. MIT Press.Google Scholar
- Sherry L. Dupuis, Jennifer Gillies, Jennifer Carson, et al. 2011. Moving beyond patient and client approaches: Mobilizing "authentic partnerships" in dementia care, support and services. Dementia 11, 4: 427--452. http://doi.org/10.1177/1471301211421063 Google ScholarCross Ref
- Robert M. Emerson, Rachel I. Fretz, and Linda L. Shaw. 2011. Writing Ethnographic Fieldnotes. University of Chicago Press. Google ScholarCross Ref
- Christopher Frauenberger. 2015. Disability and Technology: A Critical Realist Perspective. Proceedings of the 17th International ACM SIGACCESS Conference on Computers & Accessibility (ASSETS '15), ACM Press, 89--96. http://doi.org/10.1145/2700648.2809851 Google ScholarDigital Library
- Linda Garand, Jennifer H. Lingler, Kyaien O. Conner, and Mary Amanda Dew. 2009. Diagnostic Labels, Stigma, and Participation in Research Related to Dementia and Mild Cognitive Impairment. Research in Gerontological Nursing 2, 2: 112--122. Google ScholarCross Ref
- Gary Gowans, Jim Campbell, Norm Alm, Richard Dye, Arlene Astell, and Maggie Ellis. 2004. Designing a Multimedia Conversation Aid for Reminiscence Therapy in Dementia Care Environments. Extended Abstracts on Human Factors in Computing Systems (CHI EA '04), ACM Press, 825--836. http://doi.org/10.1145/985921.985943Google ScholarDigital Library
- Jacqueline A. Guendouzi and Nicole Müller. 2012. Critical approaches to discourse. In Approaches to discourse in dementia. Psychology Press, 141--167.Google Scholar
- Nancy Harding and Colin Palfrey. 1997. The Social Construction of Dementia: Confused Professionals? Jessica Kingsley Publishers.Google Scholar
- Steve Harrison, Phoebe Sengers, and Deborah Tatar. 2011. Making epistemological trouble: Third-paradigm HCI as successor science. Interacting with Computers 23, 5: 385--392. http://doi.org/10.1016/j.intcom.2011.03.005 Google ScholarDigital Library
- Steve Harrison, Deborah Tatar, and Phoebe Sengers. 2007. The three paradigms of HCI. Proceedings of alt.chi, CHI '07, 1--18. http://doi.org/10.1234/12345678Google Scholar
- J. Neil Henderson and John W. Traphagan. 2005. Cultural Factors in Dementia. Alzheimer Disease & Associated Disorders 19, 4: 272--274. http://doi.org/10.1097/01.wad.0000190806.13126.5Google ScholarCross Ref
- Kristine Holbø, Silje Bøthun, and Yngve Dahl. 2013. Safe Walking Technology for People with Dementia: What Do They Want? Proceedings of the 15th International ACM SIGACCESS Conference on Computers and Accessibility (ASSETS '13), ACM Press. http://doi.org/10.1145/2513383.2513434 Google ScholarDigital Library
- Jonathan Hook, Rachel Clarke, John McCarthy, Kate Anderson, Jane Dudman, and Peter Wright. 2015. Making the Invisible Visible: Design to Support the Documentation of Participatory Arts Experiences. Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems (CHI '15): 2583--2592. http://doi.org/10.1145/2702123.2702187 Google ScholarDigital Library
- Kristina Höök, Martin P. Jonsson, Anna Ståhl, and Johanna Mercurio. 2016. Somaesthetic Appreciation Design. Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16): 3131--3142. http://doi.org/10.1145/2858036.2858583 Google ScholarDigital Library
- Edwin Hutchins. 1995. Cognition in the Wild. MIT Press.Google Scholar
- Tom Kitwood. 1997. Dementia Reconsidered: the person comes first. Open University Press, Buckingham.Google Scholar
- Ann M. Kolanowski, Mark S. Litaker, and Patricia A. Catalano. 2002. Emotional Well-Being in a Person With Dementia. Western Journal of Nursing Research 24, 1: 28--48. Google ScholarCross Ref
- P. C. Kontos. 2005. Embodied selfhood in Alzheimer's disease: Rethinking person-centred care. Dementia 4, 4: 553--570. http://doi.org/10.1177/1471301205058311 Google ScholarCross Ref
- P. C. Kontos. 2012. Rethinking sociability in longterm care: An embodied dimension of selfhood. Dementia 11, 3: 324--346. http://doi.org/10.1177/1471301211421073 Google ScholarCross Ref
- Pia C. Kontos. 2004. Ethnographic reflections on selfhood, embodiment and Alzheimer's disease. Ageing and Society 24, 6: 829--849. http://doi.org/10.1017/S0144686X04002375 Google ScholarCross Ref
- Edith Kramer. 2000. The Art Therapist's Third Hand: Reflections on Art, Art Therapy and Society at Large. In Art As Therapy: Collected Papers. Jessica Kingsley Publishers, 47--70.Google Scholar
- Amanda Lazar, Raymundo Cornejo, Caroline Edasis, and Anne Marie Piper. 2016. Designing for the Third Hand: Empowering Older Adults with Cognitive Impairments through Creating and Sharing. Proceedings of the 2016 ACM Conference on Designing Interactive Systems (DIS '16), 1047--1058. Google ScholarDigital Library
- Ann Light, Tuck W. Leong, and Toni Robertson. 2015. Ageing Well with CSCW. Proceedings of the 14th European Conference on Computer Supported Cooperative Work (ECSCW 2015), 19--23. http://doi.org/10.1007/978-3-319-20499-4 Google ScholarCross Ref
- Stephen Lindsay, Daniel Jackson, Cas Ladha, Karim Ladha, Katie Brittain, and Patrick Olivier. 2012. Empathy, participatory design and people with dementia. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '12), ACM Press, 521--530. http://doi.org/10.1145/2207676.2207749 Google ScholarDigital Library
- Nancy L. Mace. 1987. Principles of activities for persons with dementia. Physical & Occupational Therapy in Geriatrics 5, 3: 13--27. http://doi.org/http://dx.doi.org/10.1300/J148v05n03 _03Google ScholarCross Ref
- Sarah MacPherson, Michael Bird, Katrina Anderson, Terri Davis, and Annaliese Blair. 2009. An art gallery access programme for people with dementia: "you do it for the moment". Aging & Mental health 13, 5: 744--752. http://doi.org/10.1080/13607860902918207 Google ScholarCross Ref
- Carol Magai, Carl Cohen, David Gomberg, Chris Malatesta, and Clayton Culver. 1996. Emotional expression during mid- to late-stage dementia. International psychogeriatrics 8, 3: 383--395. http://doi.org/10.1017/S104161029600275X Google ScholarCross Ref
- Jennifer Mankoff, Gillian R. Hayes, and Devva Kasnitz. 2010. Disability studies as a source of critical inquiry for the field of assistive technology. Proceedings of the 12th international ACM SIGACCESS conference on Computers and accessibility (ASSETS '10), ACM Press, 3--10. http://doi.org/10.1145/1878803.1878807 Google ScholarDigital Library
- John McCarthy and Peter Wright. 2004. Technology as Experience. Interactions 11, 5: 42--43. http://doi.org/10.1109/TPC.2005.859719 Google ScholarCross Ref
- M. McFadyen. 1984. The measurement of engagement in the institutionalized elderly. In Psychological approaches to the care of the elderly, I. Hanley and J. Hodje (eds.). Croom Helm, London.Google Scholar
- Franka Meiland, Rose-Marie Dröes, Stefan Sävenstedt, Birgitta Bergvall-Kåreborn, and AnnaLena Andersson. 2010. Identifying User Needs and the Participative Design Process. In Supporting People with Dementia Using Pervasive Health Technologies, Maurice D Mulvenna and Chris D Nugent (eds.). Springer-Verlag London Limited, 79--100.Google Scholar
- Harry R. Moody. 1993. Overview: What is Critical Gerontology and Why Is It Important. In Voices and Visions of Aging: Towards a Critical Gerontology, Robert Kastenbaum and Susan J. Eklund (eds.). vii--xi.Google Scholar
- Kellie Morrissey and John Mccarthy. 2015. Creative and Opportunistic Use of Everyday Music Technologies in a Dementia Care Unit. Proceedings of the 2015 ACM SIGCHI Conference on Creativity and Cognition (C&C '15), 295--298. Google ScholarDigital Library
- Kellie Morrissey, Gavin Wood, David Green, Nadia Pantidi, and John Mccarthy. 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. Proceedings of the 2016 ACM Conference on Designing Interactive Systems (DIS '16): 1008--1020. Google ScholarDigital Library
- Michael J. Muller. 1993. PICTIVE: Democratizing the Dynamics of the Design Session. In Participatory Design: Principles and Practices, Doughlas Schuler and Aki Namioka (eds.). Lawrence Erlbaum Associates, Inc.Google Scholar
- Rafael Núñez and Walter J. Freeman (eds.). 1999. Reclaiming cognition: the primacy of action, intention and emotion. Imprint Academic, Thorverton, UK. Retrieved from http://books.google.com/books?id=G01LhJnzUWMCGoogle Scholar
- Deborah O'Connor, Alison Phinney, and Wendy Hulko. 2010. Dementia at the Intersections: A unique case study exploring social location. Journal of Aging Studies 24, 1: 30--39. http://doi.org/10.1016/j.jaging.2008.08.001 Google ScholarCross Ref
- Roger Orpwood, Sidsel Bjørneby, Inger Hagen, Outi Mäki, Richard Faulkner, and Päivi Topo. 2004. User Involvement in Dementia Product Development. Dementia 3, 3: 263--279. http://doi.org/10.1177/1471301204045160 Google ScholarCross Ref
- Jonathan Parker. 2005. Constructing Dementia and Dementia Care: Daily Practices in a Day Care Setting. Journal of Social Work 5, 3: 261--278. http://doi.org/10.1177/1468017305058935 Google ScholarCross Ref
- Hester Parr. 2006. Mental health, the arts and belongings. Transactions of the Institute of British Geographers 31, 2: 150--166. http://doi.org/10.1111/j.1475-5661.2006.00207.x Google ScholarCross Ref
- T. Perrin. 1997. Occupational need in severe dementia: a descriptive study. Journal of advanced nursing 25, 5: 934--41. http://doi.org/10.1046/j.13652648.1997.1997025934.xGoogle ScholarCross Ref
- Tessa Perrin. 1997. The Positive Response Schedule for Severe Dementia. Aging & mental health 1, 2: 184--191. http://doi.org/10.1080/13607869757290 Google ScholarCross Ref
- Yvonne Rogers and Gary Marsden. 2013. Does he take sugar? Moving beyond the rhetoric of compassion. interactions 20, 4: 48--57. http://doi.org/10.1145/2486227.2486238Google ScholarDigital Library
- Yvonne Rogers, Jeni Paay, Margot Brereton, Kate Vaisutis, Gary Marsden, and Frank Vetere. 2014. Never Too Old: Engaging Retired People Inventing the Future with MaKey MaKey. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '14), ACM Press, 3913--3922. Google ScholarDigital Library
- Julia Rozanova. 2010. Discourse of successful aging in The Globe & Mail: Insights from critical gerontology. Journal of Aging Studies 24, 4: 213--222. http://doi.org/10.1016/j.jaging.2010.05.001 Google ScholarCross Ref
- Steven R. Sabat. 2006. Implicit memory and people with Alzheimer's disease: Implications for caregiving. American Journal of Alzheimer's Disease and Other Dementias 21, 1: 11--14. http://doi.org/10.1177/153331750602100113 Google ScholarCross Ref
- Steven R. Sabat, Ann Johnson, Caroline Swarbrick, and John Keady. 2011. The "demented other" or simply "a person"? Extending the philosophical discourse of Naue and Kroll through the situated self. Nursing Philosophy 12: 282--292. Google ScholarCross Ref
- Carol Bowlby Sifton. 2000. Maximizing the Functional Abilities of Persons with Alzheimer's Disease and Related Dementias. In Interventions in Dementia Care: Toward Improving Quality of Life. Springer Publishing Company, New York, New York, 11--37.Google Scholar
- Carol Bowlby Sifton. 2000. Well-Being and Doing: Enabling Occupation with Persons with Dementia. Alzheimer's Care Quarterly 1, 2: 7--28.Google Scholar
- Gwi-Ryung Son, Barbara Therrien, and Ann Whall. 2002. Implicit Memory and Familiarity Among Elders with Dementia. Journal of Nursing Scholarship 34, 3: 263--267. http://doi.org/10.1111/j.1547-5069.2002.00263.x Google ScholarCross Ref
- Lucy A. Suchman. 1987. Plans and situated actions: the problem of human-machine communication. Cambridge University Press, New York.Google ScholarDigital Library
- Janelle S. Taylor. 2008. On Recognition, Caring, and Dementia. Medical Anthropology Quarterly 22, 4: 313--335. http://doi.org/10.1111/j.15481387.2008.00036.xGoogle ScholarCross Ref
- John Vines, Rachel Clarke, Peter Wright, John McCarthy, and Patrick Olivier. 2013. Configuring participation: on how we involve people in design. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '13), ACM Press, 429--438. http://doi.org/10.1016/S0142694X(98)00026-XGoogle ScholarDigital Library
- 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 Transactions on Computer-Human Interaction 22, 1. Google ScholarDigital Library
- Jayne Wallace, Anja Thieme, Gavin Wood, Guy Schofield, and Patrick Olivier. 2012. Enabling self, intimacy and a sense of home in dementia: An Enquiry into Design in a Hospital Setting. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '12), ACM Press, 2629--2638. http://doi.org/10.1145/2207676.2208654 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. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '13), ACM Press, 2617--2626. http://doi.org/10.1145/2470654.2481363 Google ScholarDigital Library
- Rupert Wegerif and Yang Yang. 2011. Technology and Dialogic Space: Lessons from History and from the "Argunaut" and "Metafora" Projects. Connecting Computer-Supported Collaborative Learning to Policy and Practice: CSCL2011 Conference Proceedings.Google Scholar
- Terry Winograd and Fernando Flores. 1986. Understanding Computers and Cognition: A New Foundation for Design. Ablex Publishing Corporaton.Google ScholarDigital Library
- Peter Wright and John McCarthy. 2008. Empathy and experience in HCI. Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '08): 637--646. http://doi.org/10.1145/1357054.1357156 Google ScholarDigital Library
- Livescribe Sound Stickers. http://store.livescribe.com/sound-stickers-1-1.html.Google Scholar
Index Terms
- A Critical Lens on Dementia and Design in HCI
Recommendations
The turn to practice in HCI: towards a research agenda
CHI '14: Proceedings of the SIGCHI Conference on Human Factors in Computing SystemsThis paper argues that a new paradigm for HCI research, which we label the 'practice' perspective, has been emerging in recent years. This stands in contrast to the prevailing mainstream HCI paradigm, which we term the 'interaction' perspective. The '...
Taking an (Embodied) Cue From Community Health: Designing Dementia Caregiver Support Technology to Advance Health Equity
CHI '21: Proceedings of the 2021 CHI Conference on Human Factors in Computing SystemsDementia affects >50 million worldwide, causing progressive cognitive and physical disabilities. Its caregiving burden falls largely onto informal caregivers, who experience their own health problems, and face tremendous stress with little support–all ...
Applying the lens of sensory ethnography to sustainable HCI
Special issue on practice-oriented approaches to sustainable HCISociological appropriations of practice theory as applied to sustainable design have successfully problematized overly simplistic and individualistic models of consumer choice and behavior change. By taking everyday practices as the principal units of ...
Comments