EMPOWERING PEOPLE WITH DEMENTIA TO SHARE AND SOCIALIZEJiamin Dai, McGill University, email@example.com
AbstractPeople with dementia face major challenges in maintaining active social interaction. This work aims to develop a social sharing platform consistent with the needs and preferences of people with early-middle stage dementia and integrated with common caregiving practices. Situated in a local storytelling and social program, the fieldwork involves semi-structured interviews and observations to identify challenges that people with dementia face in their social lives, along with best practices for supporting their storytelling and socializing. The identified challenges and best practices will guide the upcoming system design and evaluation. We will explore opportunities for information and communication technologies to address existing challenges, mobilize effective prompting materials, and better support people with dementia in social sharing.
Active social interaction is an essential component of quality of life, but people with dementia (PwD) face major challenges in their social lives due to deterioration in mental functions including memory, communication, attention, and behaviour regulation. Sharing stories can engage PwD in conversations and strengthen interpersonal relationships, which, in turn, can ease caregiving burdens . Existing tools often provide passive sharing opportunities, but PwD can engage more actively to improve social interaction. Especially lacking are tools that focus on PwD’s social communication and support the sharing of original content created by PwD .
This study is situated in the Tales & Travels program, a storytelling and social series for PwD in Greater Montreal, Canada. The Tales & Travels program was initiated at the Gail Borden Public Library District in Illinois and offers toolkits for librarians and caregivers under Creative Commons licensing [12,13]. In collaboration with the Alzheimer Society of Montreal, the Westmount Public Library has adapted the program and held structured weekly sessions since 2016. This program encourages participation, conversation, and expression by inviting PwD to explore a country through books and images, sharing stories and memories, tasting featured snacks, and watching travel guide videos . It provides a friendly group setting for PwD (usually in the early-middle stages) to share stories and socialize with each other, caregivers, and facilitators.
Recent frameworks such as critical dementia and technology narrative help reposition research approaches to interaction design for and with people living with cognitive impairments. By positioning PwD as competent, engaged, and capable of expressing themselves in meaningful ways, HCI researchers engage with them in an empathic and empowering way, encouraging their perspective, creativity, engagement, and rich emotional expression . Researchers also aim to understand the lived experience of people with cognitive impairments and change the emphasis from suffering the impacts of impairments to enjoying life with the support of technology .
To date, the HCI community has mobilized a variety of technologies, such as ambient displays , multimedia systems , mobile applications , interactive frames , and virtual reality environments , to facilitate PwD’s creating and sharing. Person-centered design approaches accommodate PwD’s diverse needs, preferences, and responsive behaviours. PwD have been appropriating media content  and personalizing interactive media for their preference and enjoyment . Many tools draw materials from PwD’s life stories and focus on positive memories and feelings, instead of asking for the correct answers and recollections. Reminiscence materials are carefully chosen to avoid triggering distress or unpleasant memories . Similarly, generic prompts are found effective in avoiding possible frustration or tension when PwD fail to recognize some personal items .
Sharing stories and experiences within a group could be challenging for both PwD and facilitators, and technology can help relieve some facilitation burdens. For example, conversation aids make it easier to facilitate a shared interaction with PwD, with no need for caregivers to prompt one question after another to keep the conversation going . Interactive group activities, such as quizzes with the help of print media devices, prove to be enjoyable and successful in fostering co-created experiences .
From recent work on making as expression in art therapy , we can explore how collaborative design engagements empower PwD. We can investigate through creating space for expression, further personalization with better-tailored experiences, and more group-oriented, multisensory activities. PwD can create original content and enjoy communicating with other people, and the lack of personally tailored social sharing tools opens an opportunity to develop a collaborative platform for families and communities to aid in caregiving and social integration.
We have adopted a human-centered approach consisting of an iterative process of fieldwork, design, and evaluation. Before starting the fieldwork in March 2019, the doctoral candidate was a registered volunteer for the Alzheimer Society of Montreal and volunteered for 9 Tales & Travels sessions from February 2018. This preliminary work helped in understanding the procedures and activities, getting to know the participants, and becoming a part of the community.
The fieldwork aims to answer two research questions: (1) What challenges do PwD encounter when sharing stories and socializing within a small group? (2) What materials and prompts are effective in supporting PwD’s social sharing? Semi-structured dyad interviews with people with early-middle stage dementia and their primary family caregivers (e.g., the spouse) are aimed at understanding the dyads’ experience of sharing stories and attending social activities, giving voice to both care-recipients and caregivers. These interviews also help reveal how communication and socializing change over the progression of dementia. Individual caregiver interviews are considered in cases where PwD are not available for a joint interview. Semi-structured interviews with facilitators of the Tales & Travels program provide their perspectives on PwD’s preferences and challenges when sharing stories and socializing, as well as the use of prompting materials. Finally, observations of the Tales & Travels sessions focus on PwD’s verbal and nonverbal cues as an indication of their preferences and challenges in social sharing, providing insight into the effects of the multimedia and multisensory materials as prompts for social sharing. We conduct thematic analysis on the interview transcripts and observational field texts .
On the basis of the fieldwork findings, we will carry out user-centered design with PwD and caregivers. An iteration of design and testing will include prototyping, observing participants’ interaction with the prototypes, conducting further interviews as needed, developing a suitable platform, and running usability tests. We will integrate testing and feedback into every stage to allow for timely adjustments. Once the platform is developed, we will run an empirical evaluation involving users to assess its effectiveness in promoting social interaction. After a period of deployment, we will collect system log data to statistically analyse its usage. We will also combine interviews with scales and questionnaires to concretely establish the usefulness of our platform.
As of the end of July 2019, we have completed 5 dyad interviews, 3 individual caregiver interviews, 4 facilitator interviews, and 8 observation sessions. The initial findings from our observations and facilitator interviews highlight the strengths of a normalized environment in which PwD can engage in spontaneous or unsupervised communications in a public venue. Without dementia being mentioned, PwD enjoy sharing travel experiences, life stories, news, knowledge, and humour. It is often a collaborative working and mutual learning process to explore a country’s nature, culture, fun facts, and cuisines, with well-received large prints of images and maps, music and videos, and themed food and objects. Facilitators manage to bond with PwD and build upon previously told stories to discover new layers of experiences, turning repetitions into opportunities. Due to limited resources and number of facilitators, the program has a waitlist for participants. Interactive technologies could help relieve some facilitation burdens, and, additionally, offer more activities and richer materials that can make the program more engaging and successful.
We expect to find that collaborative and inclusive applications will engage PwD and caregivers by respecting the roles of both storytellers and listeners and inviting everyone to become a contributor. We will support both one-on-one and group discussions and mobilize multimedia and multisensory materials to promote interaction and social sharing. We will explore artefacts and tangible user interfaces (e.g., 3D-printed items, interactive maps or videos, and touch projectors) to offer more engaging prompts than paper-based materials. Such digital toolkits can be widely used in both private and public settings, expanding the existing limited number of ‘suitcase’ kits on loan from the library for family gatherings and residential facilities.
This research will probe storytelling as a form of social sharing and characterize PwD’s sharing and socializing with each other in a group setting. The developed person-centered, socialization-enabled platform could find widespread use for PwD as an aid to stimulating their memories, enhancing self-esteem, and improving social interaction. The implementation of our platform has a strong potential to enhance the quality of life for both PwD and caregivers, as well as advance the system design guidelines and evaluation methods relevant to PwD. Further developing the established collaborations with our organizational partners (the Alzheimer Society of Montreal and the Westmount Public Library), we will actively communicate our findings to bridge accessibility research, community outreach, and caregiving practice.
The doctoral candidate is in the third year of the PhD program and is hoping to receive feedback on better interpreting the fieldwork findings and translating the knowledge into the upcoming design. She also looks forward to refining the initial design ideas.
This research is funded by the Natural Science and Engineering Research Council of Canada (NSERC), the AGE-WELL Network of Centers of Excellence (AGE-WELL NCE), and the Fonds de recherche du Québec – Nature et technologies (FRQNT). We would like to thank all the participants, the Westmount Public Library, and the Alzheimer Society of Montreal.
- Arlene J. Astell, Maggie P. Ellis, Lauren Bernardi, Norman Alm, Richard Dye, Gary Gowans, Jim Campbell. 2010. Using a touch screen computer to support relationships between people with dementia and caregivers. Interacting with Computers, 22, 4: 267-275. http://dx.doi.org/10.1016/j.intcom.2010.03.003
- Virginia Braun, Victoria Clarke. 2006. Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 2: 77-101. http://dx.doi.org/10.1191/1478088706qp063oa
- Masashi Crete-Nishihata, Ronald M. Baecker, Michael Massimi, Deborah Ptak, Rachelle Campigotto, Liam D. Kaufman, Adam M. Brickman, Gary R. Turner, Joshua R. Steinerman, Sandra E. Black. 2012. Reconstructing the past: Personal memory technologies are not just personal and not just for memory. Human-Computer Interaction, 27(1–2): 92–123. http://dx.doi.org/10.1080/07370024.2012.656062
- Sarah Foley, Daniel Welsh, Nadia Pantidi, Kellie Morrissey, Tom Nappey, John McCarthy. 2019. Printer Pals: Experience-centered design to support agency for people with dementia. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '19), 1-13. http://dx.doi.org/10.1145/3290605.3300634
- James Hodge, Madeline Balaam, Sandra Hastings, Kellie Morrissey. 2018. Exploring the design of tailored virtual reality experiences for people with dementia. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '18), 1-13. http://dx.doi.org/10.1145/3173574.3174088
- James Hodge, Kyle Montague, Sandra Hastings, Kellie Morrissey. 2019. Exploring media capture of meaningful experiences to support families living with dementia. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '19), 1-14. http://dx.doi.org/10.1145/3290605.3300653
- Amanda Lazar, Caroline Edasis, Anne Marie Piper. 2017. A critical lens on dementia and design in HCI. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '17), 2175-2188. http://dx.doi.org/10.1145/3025453.3025522
- Amanda Lazar, Caroline Edasis, Anne Marie Piper. 2017. Supporting people with dementia in digital social sharing. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '17), 2149-2162. http://dx.doi.org/10.1145/3025453.3025586
- Amanda Lazar, Jessica L. Feuston, Caroline Edasis, Anne Marie Piper. 2018. Making as expression: Informing design with people with complex communication needs through art therapy. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '18), 1-16. http://dx.doi.org/10.1145/3173574.3173925
- Amanda Lazar, Hilaire J. Thompson, George Demiris. 2016. Design recommendations for recreational systems involving older adults living with dementia. Journal of Applied Gerontology, 37, 5: 595-619. http://dx.doi.org/10.1177/0733464816643880
- Galina Madjaroff, Helena Mentis. 2017. Narratives of older adults with mild cognitive impairment and their caregivers. In Proceedings of the SIGACCESS Conference on Computers and Accessibility (ASSETS '17), 140-149. http://dx.doi.org/10.1145/3132525.3132554
- Mary Beth Riedner, Karen Maki, Miriam Anderson Lytle. 2018. Becoming a dementia friendly library. In The Relevant Library: Essays on Adapting to Changing Needs, Vera Gubnitskaia and Carol Smallwood (eds.). McFarland, Jefferson, NC, 187-194.
- Tales and Travel Memories. 2019. Toolkit for Librarians. Retrieved June 17, 2019 from http://talesandtravelmemories.com/for-librarians/
- Daniel Welsh, Kellie Morrissey, Sarah Foley, Roisin McNaney, Christos Salis, John McCarthy, John Vines. 2018. Ticket to Talk: Supporting conversation between young people and people with dementia through digital media. In Proceedings of the SIGCHI Conference on Human Factors in Computing Systems (CHI '18), 1-13. http://dx.doi.org/10.1145/3173574.3173949
- Westmount Public Library. 2019. Tales & Travels Series. Retrieved September 23, 2019 from https://westlib.org/iguana/www.main.cls?p=*&v=83c2ef0c-1da2-46ee-8d03-e2a3840b0921