ABSTRACT
There is a growing body of research examining the role of technology in supporting the care of--and relationships surrounding--people with dementia, yet little attention has been given to how this relates to younger family members. We conducted a qualitative study based on a series of 6 co-design workshops conducted with 14 young people who had personal experience with dementia. Initially, our workshops focused on understanding the difficulties that young people face when engaging, interacting and being with people with dementia. Initial analysis of workshop data informed the design of three digital tool concepts that were used as the basis for user enactment workshops. Our findings highlight the young people's desire to be more involved in their family discussions around dementia and a need for them to find new ways to connect with their loved ones with dementia. We offer a set of design considerations for future systems that support these needs and reflect on some of the complexities we faced around engaging young people in this difficult topic of discussion.
- Alm Norman, Richard Dye, Gary Gowans, Jim Campbell, Arlene Jean Astell, and Maggie Ellis. 2007. A communication support system for older people with dementia. IEEE Computer. 40, 5: 60--66. DOI: http://dx.doi.org/10.1109/MC.2007.153 Google ScholarDigital Library
- Alzheimer's Association. Communication. 2016. Retrieved August 21, 2016 from http://www.alz.org/nca/in_my_community_22018.aspGoogle Scholar
- Alzheimer's Society. Communicating. 2016. Retrieved August 21, 2016 from https://www.alzheimers.org.uk/site/scripts/documents_i nfo.php?documentID=130Google Scholar
- American Psychiatric Association. 2013. Diagnostic and statistical manual of mental disorders (5th ed.). American Psychiatric Publishing, Arlington, VA.Google Scholar
- Arlene Astell, Norman Alm, Gary Gowans, Maggie Ellis, Richard Dye, and Phillip Vaughan. 2009. Involving older people with dementia and their carers in designing computer based support systems: some methodological considerations. Univers. Access Inf. Soc. 8, 1: 49--58. DOI: http://dx.doi.org/10.1007/s10209-008-0129--9Google ScholarCross Ref
- Susan Mary Benbow, David Jolley. 2012. Dementia: stigma and its effects. Neurodegenerative Disease Management 2,2:165--172. DOI: http://dx.doi.org/10.2217/nmt.12.7 Google ScholarCross Ref
- Frank R. Bentley, Santosh Basapur, and Sujoy Kumar Chowdhury. 2011. Promoting intergenerational communication through location-based asynchronous video communication. InProceedings of the 13th international conference on Ubiquitous computing (UbiComp '11). ACM, NY, NY, USA, 31--40. DOI: http://dx.doi.org/10.1145/2030112.2030117 Google ScholarDigital Library
- Rita Maldonado Branco, Joana Quental, and Óscar Ribeiro. 2016. Playing with personalisation and openness in a codesign project involving people with dementia. In Proceedings of the 14th Participatory Design Conference: Full papers - Volume 1 (PDC '16), Vol. 1. ACM, NY, NY, USA, 61--70. DOI: http://dx.doi.org/10.1145/2940299.2940309 Google ScholarDigital Library
- Virginia Braun and Victoria Clarke. 2006. Using thematic analysis in psychology. Qualitative research in psychology 3, no. 2 (2006): 77--101. DOI: http://doi.org/abs/10.1191/1478088706qp063oaGoogle Scholar
- Louis Burgio, Rebecca Allen-Burge, A. Stevens, L. Davis, D. Marson. 2000. Caring for Alzheimer's disease patients: Issues of verbal communication and social interaction. The gerontological prism: Developing interdisciplinary bridges: 231--258.Google Scholar
- Carer's Trust. What is a young carer? 2012. Retrieved September 21, 2016 from https://www.carers.org/whatyoung-carerGoogle Scholar
- Jill Clark and Ian Hall. The Skype Grannies project final report. Technical report, Newcastle University Centre for Learning and Teaching, 2011. Retrieved September 21, 2016 from http://www.ncl.ac.uk/cflat/news/documents/TheSkype GranniesProjectupdated110811.pdfGoogle Scholar
- Allison Druin, Benjamin B. Bederson, and Alex Quinn. 2009. Designing intergenerational mobile storytelling. In Proceedings of the 8th International Conference on Interaction Design and Children(IDC '09). ACM, NY, NY, USA, 325--328. DOI: http://dx.doi.org/10.1145/1551788.1551875 Google ScholarDigital Library
- Erik H. Erikson. 1968. Identity: Youth and Crisis. NY: Norton.Google Scholar
- Daniel Fitton, and Beth Bell. 2014. Working with Teenagers within HCI Research: Understanding TeenComputer Interaction. In Proceedings of the 28th International BCS Human Computer Interaction Conference on HCI 2014-Sand, Sea and Sky-Holiday HCI, pp. 201--206. BCS, 2014.Google ScholarDigital Library
- Daniel Fitton, Janet C. Read, Matthew Horton, Linda Little, Nicola Toth, and Yukang Guo. 2012. Constructing the cool wall: a tool to explore teen meanings of cool. PsychNology 10, 2: 141--162.Google Scholar
- Daniel Fitton, Janet C. Read, and Matthew Horton. 2013. The challenge of working with teens as participants in interaction design. In CHI '13 Extended Abstracts on Human Factors in Computing Systems (CHI EA '13). ACM, NY, NY, USA, 205--210. DOI: http://dx.doi.org/10.1145/2468356.2468394 Google ScholarDigital Library
- Verena Fuchsberger, Julia Nebauer, Christiane Moser, and Manfred Tscheligi. 2012. Design challenges and concept for intergenerational online learning. In Proceedings of the 11th International Conference on Interaction Design and Children (IDC '12). ACM, NY, NY, USA, 192--195. DOI=http://dx.doi.org/10.1145/2307096.2307123 Google ScholarDigital Library
- Fleur Gabriel. 2014. Sexting, selfies and self-harm: young people, social media and the performance of self-development. Media International Australia, 151,1: 104--112. DOI: http://dx.doi.org/10.1177/1329878X1415100114 Google ScholarCross Ref
- Marie Glasemann, Anne Marie Kanstrup, and Thomas Ryberg. 2010. Making chocolate-covered broccoli: designing a mobile learning game about food for young people with diabetes. InProceedings of the 8th ACM Conference on Designing Interactive Systems (DIS '10). ACM, NY, NY, USA, 262--271. DOI: http://doi.acm.org/10.1145/1858171.1858219 Google ScholarDigital Library
- Kirstie Hawkey, Kori M. Inkpen, Kenneth Rockwood, Michael McAllister, and Jacob Slonim. 2005. Requirements gathering with alzheimer's patients and caregivers. In Proceedings of the 7th international ACM SIGACCESS conference on Computers and accessibility (Assets '05). ACM, NY, NY, USA, 142--149. DOI: http://dx.doi.org/10.1145/1090785.1090812 Google ScholarDigital Library
- 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, NY, NY, USA, 33--36. DOI: http://dx.doi.org/10.1145/2662155.2662196 Google ScholarDigital Library
- Matthew K. Hong, Lauren Wilcox, Daniel Machado, Thomas A. Olson, and Stephen F. Simoneaux. 2016. Care Partnerships: Toward Technology to Support Teens' Participation in Their Health Care. In Proceedings of the 2016 CHI Conference on Human Factors in Computing Systems (CHI '16). ACM, NY, NY, USA, 5337--5349. DOI: http://dx.doi.org/10.1145/2858036.2858508 Google ScholarDigital Library
- David Hounsell. 2013. Hidden from View: The Experiences of Young Carers in England. The Children's Society. Retrieved September 21, 2016 from http://www.childrenssociety.org.uk/sites/default/files/tc s/report_hidden-from-view_young-carers_final.pdfGoogle Scholar
- Amanda Lenhart,, Maeve Duggan, Andrew Perrin, Renee Stepler, Harrison Rainie, and Kim Parker. Teens, social media & technology overview 2015. 2015. Pew Research Centre. Retrieved September 21, 2016 from http://www.pewinternet.org/2015/04/09/teens-socialmedia-technology-2015/Google Scholar
- 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, NY, NY, USA, 521--530. DOI: http://dx.doi.org/10.1145/2207676.2207749 Google ScholarDigital Library
- 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, NY, NY, USA, 540--545. DOI: http://dx.doi.org/10.1145/2493190.2494436 Google ScholarDigital Library
- Maurice Mulvenna, Suzanne Martin, Stefan Sävenstedt, Johan Bengtsson, Franka Meiland, Rose Marie Dröes, Marike Hettinga, Ferial Moelaert, and David Craig. 2010. Designing & evaluating a cognitive prosthetic for people with mild dementia. In Proceedings of the 28th Annual European Conference on Cognitive Ergonomics (ECCE '10). ACM, NY, NY, USA, 11--18. DOI: http://dx.doi.org/10.1145/1962300.1962306 Google ScholarDigital Library
- Joanna Murray, Justine Schneider, Sube Banerjee, & Antony Mann. 1999. EUROCARE: A crossnational study of co-resident spouse carers for people with Alzheimer's disease: II--A qualitative analysis of the experience of caregiving. International Journal of Geriatric Psychiatry, 14, 662--667. Google ScholarCross Ref
- Toshihiro Nakae, Shiro Ozawa, and Naoya Miyashita. 2010. O-Link: augmented object system for intergenerational communication. ACM SIGGRAPH 2010 Posters. ACM, 2010.Google ScholarDigital Library
- National Alliance for Caregiving and United Hospital Fund. Young Caregivers in the U.S.: Report of Findings; September 2005. Retrieved September 21, 2016 from www.caregiving.orgGoogle Scholar
- William Odom, John Zimmerman, Scott Davidoff, Jodi Forlizzi, Anind K. Dey, and Min Kyung Lee. 2012. A fieldwork of the future with user enactments. In Proceedings of the Designing Interactive Systems Conference (DIS '12). ACM, NY, NY, USA, 338--347. DOI=http://dx.doi.org/10.1145/2317956.2318008 Google ScholarDigital Library
- William Odom, John Zimmerman, and Jodi Forlizzi. 2011. Teenagers and their virtual possessions: design opportunities and issues. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '11). ACM, NY, NY, USA, 14911500. DOI: http://dx.doi.org/10.1145/1978942.1979161 Google ScholarDigital Library
- J.B. Orange. (1991). Perspectives of family members regarding communication changes. In R.B. Lubinski, J.B. Orange, D. Henderson & N. Stecker (Eds.), Dementia and communication (pp. 168--186). Philadelphia, PA: Mosby.Google Scholar
- Martin Prince, Anders Wimo, Maelenn Guerchet, et al. 2015. The Global Impact of Dementia: An analysis of prevalence, incidence, cost and Trends. Alzheimer's Disease International, London.Google Scholar
- Janet C. Read, Matthew Horton, Ole Iversen, Daniel Fitton, and Linda Little. 2013. Methods of working with teenagers in interaction design. In CHI '13 Extended Abstracts on Human Factors in Computing Systems (CHI EA '13). ACM, NY, NY, USA, 3243--3246. DOI: http://dx.doi.org/10.1145/2468356.2479657 Google ScholarDigital Library
- Pamela Roach., John, Keady., Penny Bee., Sion Williams. (2013). "We can't keep going on like this": identifying family storylines in young onset dementia. Ageing and Society, 34(8), 1397--1426. doi:10.1017/S0144686X13000202 Google ScholarCross Ref
- Marie Y. Savundranayagam, Mary Lee Hummert, & Rhonda JV Montgomery. 2005. Investigating the effects of communication problems on caregiver burden. The Journals of Gerontology, Series B: Psychological Sciences and Social Sciences 60, 1 (2005), S48-S55. Google ScholarCross Ref
- Karin Slegers, Andrea Wilkinson, and Niels Hendriks. 2013. Active collaboration in healthcare design: participatory design to develop a dementia care app. In CHI '13 Extended Abstracts on Human Factors in Computing Systems (CHI EA '13). ACM, NY, NY, USA, 475--480. DOI: http://dx.doi.org/10.1145/2468356.2468440 Google ScholarDigital Library
- Petr Slovák, Anja Thieme, David Murphy, Paul Tennent, Patrick Olivier, and Geraldine Fitzpatrick. 2015. On Becoming a Counsellor: Challenges and Opportunities to Support Interpersonal Skills Training. In Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing (CSCW '15). ACM, NY, NY, USA, 1336--1347. DOI: http://dx.doi.org/10.1145/2675133.2675190 Google ScholarDigital Library
- Jeff A. Small, Kathy Geldart, & Gloria Gutman. 2000. Communication between individuals with dementia and their caregivers during activities of daily living. American Journal of Alzheimer's Disease & Other Dementias. 15: 291--302. Google ScholarCross Ref
- Robert Strom, & Paris Strom. 2013. Grandparents and reciprocal learning for family harmony. In P. Hughes (Ed). Achieving quality education for all: Perspectives from the Asia-Pacific Region and beyond. NY, NY: Springer Google ScholarCross Ref
- Rachel Thompson. 2011. Using life story work to enhance care. Nursing Older People 23 (8): 16--21. DOI: http://dx.doi.org/10.7748/nop2011.10.23.8.16.c8713 Google ScholarCross Ref
- UNESCO. http://www.unesco.org/new/en/social-andhuman-sciences/themes/youth/youth-definition/Google Scholar
- Frank Vetere, Hilary Davis, Martin R. Gibbs, Peter Francis, and Steve Howard. 2006. A magic box for understanding intergenerational play. In CHI '06 Extended Abstracts on Human Factors in Computing Systems (CHI EA '06). ACM, NY, NY, USA, 1475--1480. DOI: http://dx.doi.org/10.1145/1125451.1125722 Google ScholarDigital Library
- Mary Webster, Emma Foster, Rob Comber, Simon Bowen, Tim Cheetham, and Madeline Balaam. 2015. Understanding the lived experience of adolescents with tyouthse 1 diabetes: opportunities for design. In Proceedings of the 14th International Conference on Interaction Design and Children(IDC '15). ACM, NY, NY, USA, 140--149. DOI: http://dx.doi.org/10.1145/2771839.2771854 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. InProceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '12). ACM, NY, NY, USA, 26292638. http://dx.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. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '13). ACM, NY, NY, USA, 2617--2626. http://dx.doi.org/10.1145/2470654.2481363 Google ScholarDigital Library
- Barbara Watson, Lisa Dawn Aizawa, Marie Y. Savundranayagam, & J.B. Orange. Links among communication, dementia and caregiver burden. Canadian Journal of Speech-Language Pathology and Audiology 36, 4 (2012), 276--284.Google Scholar
- Barry Wellman and Scot Wortley. 1990. Different Strokes from Different Folks: Community Ties and Social Support. American Journal of Sociology 96, 3, 558--588 Google ScholarCross Ref
- Bob Woods, Aimee E Spector, Catherine A Jones, Martin Orrell, and Stephen P Davies. Reminiscence therapy for dementia. Cochrane Database Syst Rev 2 (2005). DOI: http://dx.doi.org/10.1002/14651858.CD001120.pub2 Google ScholarCross Ref
- Tony J Young, Chris Manthorp, David Howells, & Ellen Tullo. 2011. Developing a carer communication intervention to support personhood and quality of life in dementia. Ageing and Society, 31(6), 1003--1025.Google ScholarCross Ref
- Tony J Young, Chris Manthorp, David Howells and John Vines. 2013. DemTalk: Dementia Toolkit for effective communication. Retrieved September 21, 2016 from http://www.demtalk.org.uk/Google Scholar
Index Terms
- DemYouth: Co-Designing and Enacting Tools to Support Young People's Engagement with People with Dementia
Recommendations
Ticket to Talk: Supporting Conversation between Young People and People with Dementia through Digital Media
CHI '18: Proceedings of the 2018 CHI Conference on Human Factors in Computing SystemsWe explore the role of digital media in supporting intergenerational interactions between people with dementia and young people. Though meaningful social interaction is integral to quality of life in dementia, initiating conversation with a person with ...
Designing Health and Fitness Apps with Older Adults: Examining the Value of Experience-Based Co-Design
PervasiveHealth '18: Proceedings of the 12th EAI International Conference on Pervasive Computing Technologies for HealthcareIdentifying useful features of health and fitness technologies has the potential to lead to more effective pervasive technology interventions. Through collaborative creative processes, co-design provides useful insight and direction for the design of ...
Co-Designing an Experience Sampling Method Digital Platform to Investigate Self-Harm Among Young People
CHI EA '22: Extended Abstracts of the 2022 CHI Conference on Human Factors in Computing SystemsSelf-harm is particularly prevalent amongst young people, with adverse consequences in terms of later wellbeing, vocational outcomes, and increased risk of suicide. Although many studies have explored self-harm, it remains difficult to predict and ...
Comments