Memory Aids as Collaboration Technology by Michael Chi Hung Wu A thesis submitted in conformity with the requirements for the degree of Doctor of Philosophy Graduate Department of Computer Science University of Toronto © Copyright by Michael Chi Hung Wu 2010 Memory Aids as Collaboration Technology Michael Chi Hung Wu Doctor of Philosophy Graduate Department of Computer Science University of Toronto 2010 Abstract The loss of memory can have a profound and disabling effect on individuals. People who acquire memory impairments are often unable to live independent lives because they cannot remember what they need to do. In many cases, they rely on family members who live with them. When I carried out ethnographic fieldwork to explore this domain, I observed that individuals with amnesia were surrounded by family members who provided extensive memory support (e.g. reminders). I found that such families very worked closely together to accomplish everyday activities, such as coordinating a family outing or planning a doctor’s appointment. However, these activities were often undermined by family members forgetting. This led me to view memory aids as collaboration technology, rather than as tools that only support an individual’s memory. My dissertation explores this idea and how it can lead to more appropriate designs of assistive technology. To design collaborative assistive technology, I involved persons with amnesia and their family members in a process of participatory design. The design team included six individuals with amnesia, two neuropsychologists, and myself. Five family members were also involved in later stages. This team envisioned the design of a shared calendar application, called Family-Link, that I implemented for Palm mobile devices. ii I evaluated Family-Link by comparing it to the commercially available Palm Calendar in a six- month study with four families. I found that participants had significantly more shared events when using Family-Link than when using Palm Calendar. Qualitative evidence suggests that Family-Link increased all participants’ awareness of other family members’ schedules, provided caregivers with a greater a sense of security by enabling them to track their family member with amnesia, and reduced the amount of effort that caregivers needed to coordinate. Family-Link also fulfilled the individual needs of persons with amnesia by providing an information storage and retrieval mechanism. However, persons with amnesia and caregivers differed in their opinions about which features were useful. Family-Link can be a particularly important tool for families where members are not co-located throughout the day. iii Acknowledgments The road to my PhD could not have been possible without the help of a great number people. It would be impossible to mention everyone who has supported me along the way, but I will try my best to highlight those who have made noteworthy contributions. Firstly, I would like to thank my family: mom, dad, and my two sisters, Jenny and Sylvia (as well as my brother-in-law, Darren). I would also like to thank my closest friend, Floria Lee. They have all been very supportive of my academic pursuits and have been there to listen to me whenever my thoughts weighed heavily. I owe a debt of gratitude to my supervisor, Dr. Ron Baecker, who has been a wonderful mentor throughout my time at the University of Toronto. He has nurtured my academic growth and given me the tools I need to succeed in research. I really appreciate that he is always willing to find extra time in his demanding schedule to meet with me and provide guidance. My collaborator from Baycrest, Dr. Brian Richards, is such a patient and knowledgeable person and I have learned a substantial amount of psychology while working with him at Memory-Link. I regret not having learned a single cooking technique from this former sous-chef but will ask him about his recipes soon. Thanks also to my other hospital collaborators Dr. Eva Svoboda, Dr. Kelly Murphy, Dr. Guy Proulx, Dr. Larry Leach, and staff member Ruby Nishioka. I am grateful for the opportunity to collaborate with talented researchers from academia and industry. I would like to thank Dr. Elliot Cole for being my external examiner and my multidisciplinary committee members Dr. Gillian Einstein (Psychology and Public Health Sciences), Dr. Steve Easterbrook (Computer Science), and Dr. Barry Wellman (Sociology) for helping to shape my thesis with their insights and ideas. During my time at the University of Toronto, I have also been able to work with and learn from Dr. Ravin Balakrishnan and Dr. Khai Truong. I am grateful to Dr. Jeremy Birnholtz who played an instrumental role in assisting me with the data analysis of my ethnographic study. During my internships, Dr. Chia Shen (MERL) and Dr. Michael Muller (IBM Research) have been extraordinary mentors to me. Finally, I would not have even considered pursuing my doctoral degree without the support of Dr. Maria Klawe and I thank her for encouraging me at the very beginning. iv I am thankful to my colleagues from DGP and TAGlab. In particular, Karyn Moffatt took the time to review my thesis and share her statistics expertise. I am also grateful to Abhishek Ranjan, Mike Massimi, Alyssa Rosenzweig, Nigel Morris, Cosmin Munteanu, Nick Shim, and Miller Peterson. As well, thanks to my colleagues from other universities, particularly Tony Tang, Kim Tee, and Mark Hancock. On the administrative side of things, Kelly Rankin (KMDI), Joan Allen (DCS), and Linda Chow (Graduate office) were particularly helpful whenever I stopped by their office. Thanks to my Toronto friends who were there to listen to me and share laughs, especially Vince Cheung, Yue Liu, Tim Tran, Mia Clemente-Short, and Yvonne Chang. I would like to thank my CCF Grad Group friends Hannah and Byron Chan, Amelia and Dan Yu, Henry and Diana Sui, Vicky and Steve Chin, Jacqueline Kwong, Ivanna Yau, Richard Lee, and Bernie Ma. I would also like to thank my Vancouver friends: James Dai, Edward Ho, and Benita Fong. I appreciate all the financial assistance I have received from my funding organizations: the Natural Sciences and Engineering Research Council of Canada, Health Care, Technology, and Place, the Department of Computer Science at the University of Toronto, and the Ontario Government. As this Acknowledgments section concludes, I want to end off with an important note. My experience has been deeply enriched by clients of Memory-Link and their family members. I especially would like to thank my study participants and design partners for their time and energy. Working with such extraordinary people has been humbling; they have reinforced in me many intangible lessons such as how to persevere and laugh in the face of unexpected and difficult challenges. I will cherish and remember all the time I spent with them. v Table of Contents Acknowledgments .......................................................................................................................... iv Table of Contents ........................................................................................................................... vi List of Tables ............................................................................................................................... xiii List of Figures ............................................................................................................................. xvii 1 Introduction .............................................................................................................................. 1 1.1 Research Motivation ...................................................................................................... 1 1.2 Problem Statement ......................................................................................................... 3 1.3 Terminology and Style ................................................................................................... 3 1.4 Research Objectives ....................................................................................................... 3 1.5 Organization ................................................................................................................... 3 2 Related Work ........................................................................................................................... 7 2.1 Anterograde Amnesia ..................................................................................................... 7 2.2 Cognitive Rehabilitation ................................................................................................ 8 2.2.1 Memory-Link ..................................................................................................... 9 2.3 Memory Aids ............................................................................................................... 10 2.3.1 Electronic Calendar Systems ............................................................................ 18 2.4 Theoretical Framework: Distributed Cognition ........................................................... 21 2.4.1 History and Key Concepts ............................................................................... 22 2.4.2 Cognitive Systems ............................................................................................ 23 2.4.3 General Properties of Cognitive Systems ........................................................ 23 2.4.4 Propagation of Representational State Across Media .....................................