Featured HQP is a new initiative from AGE-WELL, where we will showcase one HQP’s expertise, experience, and happenings to the AGE-WELL network. Feel free to comment down below on your favorite part of the interview!
Hollis Owens completed her undergraduate degree in Biomedical Engineering at the University of Virginia, and then moved on to SFU in Vancouver, BC to obtain her Master’s in Education, specializing in Educational Technology and Learning Design.
In August, she successfully defended her thesis, which focused on co-creating & digital storytelling for people with dementia. Hollis worked with 6 different individuals living with dementia and used different types of media [music, photos, videos, etc.] to help them write their digital stories. Keep reading to find out more about Hollis and her insights after completing this project.
“It was really interesting because it was focused on looking at their experience in creating their digital stories, instead of telling them how to make their stories, but it was open to whatever was meaningful in their lives and whatever they wanted to create.”
Why did you originally to get involved with digital storytelling and dementia – what led you to that?
“Originally, I became interested because I had a black lab, Skye, and trained her to be a therapy dog. We would volunteer at different senior care homes and work with people who have dementia through dog therapy. And in my undergrad, I worked with people who had Alzheimer’s disease on various projects (music therapy, Alzheimer’s support groups, simple device testing, etc.). From these experiences, I became very interested in doing something in that field and working with that group of people.
When I came to do my Master’s with David, he was talking to different people that we collaborated with across Canada, and he mentioned the potential of collaborating with a digital storytelling project at UofA, and working with dementia patients – and that was what I was interested in.”
How was the switch from Biomedical Engineering to Education Technology?
“I love working with people, so I really enjoyed my research in education tech because I was able to work one-on-one with people who have dementia and see the direct outcome of my research. Whereas in engineering, sometimes you work on something but don’t see impact on people you’re working with for quite a while because it has to go through a lot of testing, etc.
I didn’t know anything about education or that field when I came into my degree, and I learned a lot about that – but I also think coming from engineering that you gain a set of skills that can prepare you for almost any field. You’re taught how to problem-solve – so I felt that it prepared me well for almost any degree.
Also, David Kaufman [Hollis’ masters’ supervisor] also has a background in engineering before he did educational technology so it was a good match.”
“A lot of people have an idea that a person with dementia is like this or that but I found that each person’s story unique and the way he coped with living with dementia was really unique and a lot of people were very touched by his story.”
In your thesis project, you mention common themes you discovered while working with the participants – could you tell me a bit more about that?
“I completed individual case studies with 6 different people living with early stage dementia. The reason I did individual case studies was because their backgrounds, their situation, type of dementia, age, and so many things about them were so different – so I wanted to look at each individual person and what was their distinct experience. Within that, for each person, I did a thematic analysis on the final interview that I did with them.
One overlapping theme I found was the value of legacy. For half the people I worked with, legacy was very important. The digital storytelling allowed them to leave a legacy for their families, or even for their communities. The idea of preserving their story for future generations was important to them.
One of the most interesting themes was raising awareness for dementia – this was something that wasn’t touched on in the literature I found. The digital stories facilitated communication about dementia and what it’s like to live with dementia. They want to combat the stigma associated with dementia and raise awareness.
One participant shared his digital story on Facebook – and some strangers decided to share it as well, opening a dialogue for other people and that was a great result. And actually the Alzheimer’s Society of Canada did a campaign called “I live with Dementia” and they profiled both of us and included a link to his digital story. That was a very interesting part of my project and it would be interesting to look more into how digital stories are created and how we can use them to promote awareness about dementia. “
What was the most challenging aspect of working with dementia patients?
“It’s always a bit unpredictable. One person I worked with, when I initially met him, he was onboard and ready to create his story, but when I would come back at first he wouldn’t remember who I was.
Each time I would have to re-introduce myself and start from the beginning [to explain] what we were doing. By the end he remembered who I was and what I was doing, but I learned to print out his story and bring things with me so the participants knew what we were doing in case they might not remember what we did a couple days before. For some people I worked with, that wasn’t an issue, they knew who I was and they remembered me. It depends on the person, the type of dementia, their age, etc.
Also, sometimes I would go to the residence and they would just not be feeling well. You might take transit to the residence but when you arrive, they are sleeping or aren’t having a good day, so you have to come back and that can delay the process.”
How has being part of the AGE-WELL network helped you?
“It was great being able to share my research at conferences and getting funding to work here in Vancouver with David. It’s also great learning about different projects and being able to collaborate with other groups and people within the network.
For example – Ron Beleno, as a caregiver, was able to be part of our project and provide us so much input – it was really helpful. And the digital storytelling project was initially started at SFU as a collaboration with UofA, and then UofT started doing the project as well, so a variation of our project was at different sites across Canada. Even though we are in separate cities, we are able to start projects together [through AGE-WELL].”
Do you have anything that you learned that you would like to pass onto other HQP who want to work with dementia patients/advice?
“My advice is to realize that each person is an individual person, and each story, experience, and challenge they have [living with dementia] is very unique. It’s important not to lump everyone into a group or think if someone has dementia they will act a certain way. Really learn their stories, know where they are coming from, and how they cope with dementia, and what they particularly struggle with.”