Bringing the Magic of Life: The Power of Co- Constructing Digital Storytelling with People with Dementia by Hollis Anne Owens B.S., (Biomedical Engineering), University of Virginia, 2015 Thesis Submitted in Partial Fulfillment of the Requirements for the Degree of Master of Arts in the Educational Technology and Learning Design Program Faculty of Education © Hollis Anne Owens 2018 SIMON FRASER UNIVERSITY Summer 2018 Copyright in this work rests with the author. Please ensure that any reproduction or re-use is done in accordance with the relevant national copyright legislation. Approval Name: Hollis Owens Degree: Master of Arts (Educational Technology and Learning Design Title: Bringing the Magic of Life: The Power of Co- Constructing Digital Storytelling with People with Dementia Examining Committee: Chair: Yaroslav Senyshyn Professor David Kaufman Senior Supervisor Professor Susan O’Neill Supervisor Associate Dean, Academic and Research Andrew Sixsmith Internal Examiner Professor Gerontology Date Defended/Approved: August 9, 2018 ii Ethics Statement iii Abstract The number of people living with dementia is continuing to increase. Past research found benefits of digital storytelling for persons with dementia, including enhanced relationships, communication, improved well-being, and social citizenship. My research explored the experience of digital storytelling for people living with early stage dementia as part of a cross-Canada project including three sites: Edmonton, Vancouver and Toronto. The Vancouver research was conducted as my thesis research. In Vancouver, six participants were recruited from retirement residences, a care facility, and the Alzheimer Society of B.C. I met with participants for 6 to 16 sessions to create digital stories. Data collected included observational field notes, audio recordings from the sessions, and interviews that were transcribed and analyzed. The process illuminated the experience of digital storytelling for people living with dementia. Aspects of participant’s experience included creating a legacy, dementia awareness-raising, facilitated reminiscence, engagement in the process of creation, and generativity. Keywords: Digital Storytelling; Dementia; Legacy; Awareness-Raising; Reminiscence; Generativity iv Dedication I would like to dedicate my thesis to my family and community of friends that have supported me at every step. v Acknowledgements I would like to acknowledge the incredible support of my senior supervisor David Kaufman. I truly had the best supervisor who inspired me with knowledge, creativity, and patience, and I loved your jokes haha! I also want to acknowledge Robyn Schell for your help with my data analysis and for your encouragement and creativity. I want to acknowledge each and every friend who supported me and prayed for me throughout this process. Your love and patience made this possible. I am truly grateful for each participant that participated in my thesis. I learned from your life and experiences, and I am inspired by your courage and perseverance. vi Table of Contents Approval .......................................................................................................................... ii Ethics Statement ............................................................................................................ iii Abstract .......................................................................................................................... iv Dedication ....................................................................................................................... v Acknowledgements ........................................................................................................ vi Table of Contents .......................................................................................................... vii List of Tables ................................................................................................................... x List of Figures................................................................................................................. xi Chapter 1. Introduction .............................................................................................. 1 1.1. Overview ............................................................................................................... 1 1.2. Research Questions .............................................................................................. 2 1.3. Study Organization and Research Team Responsibilities ...................................... 3 1.4. Thesis Outline ....................................................................................................... 4 1.5. Digital Story Links .................................................................................................. 5 Chapter 2. Literature Review ..................................................................................... 6 2.1. Introduction ............................................................................................................ 6 2.2. Review of the Literature ......................................................................................... 7 2.2.1. Dementia Defined .......................................................................................... 7 2.2.2. Classification for Mild (Early Stage) Dementia ............................................... 8 2.2.3. Meaningful Activities for People Living with Dementia ................................... 8 2.2.4. Personhood ................................................................................................... 9 2.2.5. Storytelling ..................................................................................................... 9 2.2.6. Digital Storytelling ........................................................................................ 11 2.2.7. Technology Use by People Living with Dementia ........................................ 12 2.2.8. Reminiscence .............................................................................................. 13 2.2.9. Digital Storytelling for People Living with Dementia ..................................... 14 2.3. Summary ............................................................................................................. 17 Chapter 3. Methods .................................................................................................. 19 3.1. Introduction .......................................................................................................... 19 3.2. Digital Storytelling ................................................................................................ 19 3.2.1. Introduction .................................................................................................. 19 3.2.2. Process Details ............................................................................................ 19 3.2.3. Technology .................................................................................................. 20 3.2.4. Content and Timeline ................................................................................... 20 3.3. Research Design and Rationale .......................................................................... 21 3.3.1. Research Paradigm: Constructivism ............................................................ 21 3.3.2. Case Study Research Framework ............................................................... 22 3.4. Ethics .................................................................................................................. 22 3.5. Consent and Recruitment .................................................................................... 23 vii 3.5.1. Consent and Assent .................................................................................... 23 3.5.2. Participant Information ................................................................................. 24 Participants ............................................................................................................ 24 Sample Size ........................................................................................................... 24 3.5.3. Recruitment ................................................................................................. 24 3.5.4. Payment/Reimbursements........................................................................... 27 3.6. Data Collection .................................................................................................... 27 3.6.1. Phases ........................................................................................................ 27 3.6.2. Instruments .................................................................................................. 28 Semi-Structured Interviews .................................................................................... 29 Mini-Mental State Exam (MMSE) ........................................................................... 31 Observational Field Notes ...................................................................................... 31 3.7. Data Management ............................................................................................... 32 3.7.1. Recordings, Transcription, Data Organization ............................................. 32 3.7.2. Participant Confidentiality Measures ............................................................ 32 3.8. Data Analysis .....................................................................................................