I was sitting on the sofa across from Christine in her home. She offered me a cup of coffee. Each time I visited, she sat in the same spot — the place where she felt most comfortable and safe. She had shared stories from the past and decided to talk about the birth of her daughters, grandchildren and great grandchildren.
For Christine, a research participant in a multi-sited study into dementia and digital storytelling, the fear dementia brings is that she won’t be able to be a part of special moments such as the celebration of birth.
As we worked together in Edmonton, creating a multimedia story from her memory, Christina started to remember new things. She became emotional when she talked about her daughters becoming mothers themselves. She pointed out that the project was so much more powerful than looking through a photo album. Like many participants, she said she recalled stories she hadn’t thought about for years.
As a post-doctoral fellow in occupational therapy under the supervision of Dr. Lili Liu, at the University of Alberta I worked with several participants in this study. Funded by the Canadian Consortium on Neurodegeneration in Aging, one of our goals was to investigate quality of life and how technology affects the lived experiences of persons with dementia.
Technology and quality of life
In this research project we defined digital storytelling as using media technology — including photos, sound, music and videos — to create and present a story.
Most previous research on digital storytelling and dementia has focused on the use of digital media for reminiscence therapy, creating memory books, or enhancing conversation. Collaboratively creating personal digital stories with persons with dementia is an innovative approach, with only one similar study found in the United Kingdom.
During this project, I met with seven participants over eight weeks. Our weekly sessions included a preliminary interview to discuss demographics and past experiences with technology. Then we worked on sharing different meaningful stories, selecting one to focus on and building and shaping the story. This included writing a script, selecting music, images and photographs and editing the draft story.
Participants worked on a variety of topics. Some told stories about family and relationships, while others talked about a particular activity or event that was important to them. After all participants completed their digital stories, we had a viewing night and presented the stories to family members.
Happiness in the moment
It was an intense process. Eight sessions working one-on-one with persons with dementia required a significant amount of thinking, remembering and communicating for the participants. There were challenges, such as when participants found themselves unable to express their thoughts or remember details.
Although many participants were tired after a session, they all felt that it was a beneficial and meaningful activity. Working in their homes on a personally gratifying activity with a tangible outcome seemed to keep them motivated and eager to continue. The process was also enjoyable and gave the participants something to look forward to each week.
There was a sense of happiness in the moment. And the way that participants responded to me, along with their ability to remember who I was and the purpose of our sessions, all indicated a deeper positive connection. The participants all felt a sense of accomplishment and family members were proud to see the end product at the viewing night.
Into the future
I have met with one of the research participants again recently, and she still remembers me. I would like to follow up with the others to get a sense of the long term impact of this digital storytelling project. I am also eager to see how the findings in Edmonton line up with those from the studies in Vancouver and Toronto.
For the participants, talking about memories helped them open up about having dementia. Getting past the fear and looking ahead with optimism was the message I heard, and one that I hope to keep hearing.