Fictional storytelling can improve the lives of people living with dementia

Creative expression interventions, such as fictional storytelling, could improve the lives of people living with dementia, according to research from the University of Surrey.

Between 2020 and 2022, Dr. Stephen Fay led a study in Medellín, Colombia, focusing on creative expression for 70 individuals with dementia. The unexpected shift online due to the COVID-19 pandemic extended the study from a 10-week pilot to an 18-month creativity and communication lifeline for the participants and their families.

This transition also enabled the first-ever evaluation of the online delivery of the storytelling method used (known as TimeSlips), yielding promising results.

Dr. Stephen Fay, lead academic on the project and Lecturer in Spanish at the University of Surrey, said, “Storytelling, especially in a collaborative and creative context, taps into a fundamental human need for connection and expression. Even when memory fades, the ability to create and share stories can remain, offering a profound way to communicate and experience joy.”

Dr. Fay found that engagement with the study enhanced quality of life, boosted mood and positive self-perception, and reduced isolation by creating new and strong social bonds—to which the online format was no obstacle.

Dr. Fay is now working to bring this research and its positive results back to the U.K. through his Digital Tools for Wellbeing with Dementia (DoWell) study.

In collaboration with the 3 Nations Dementia Working Group (the U.K.’s leading advocacy organization for and by people with dementia) and with Goldster (a commercial provider of innovative digital well-being programs for older people), the DoWell Study aims to deliver the proven well-being benefits of creative expression activities.

It will also call on the participants’ expertise to evaluate how accessible, inclusive, and enjoyable these activities are for people living with a dementia diagnosis.

Based on their feedback, the study will help create guidelines for designing future digital creative expression programs. Finally, the study will use participants’ creative outputs to foster positive conversations about living with dementia.

Participant voices: Testimonials of Creativity and Joy

A central part of the DoWell Study is empowering people with dementia to rediscover and explore their creativity. The results so far are very promising:

• Regarding accessibility: “It’s like jumping into a swimming pool where you don’t know what the temperature’s like and realizing it’s bloody cold and perhaps you don’t really want to be there. But this was a gradual getting in, and feeling, “Ah, it’s warm. This is nice. I feel safe. I feel comfortable. Perhaps I’ll have a go. I might even get to a point where I’m out of my depth and still feel OK.”
• Regarding enjoyability: “I got so many other things done that day because it really lit the blue touchpaper.”
• Regarding inclusivity: “I would never have dreamed of doing any writing until all this started, and now I can’t stop!”
• One participant, Marilyn, wove memory and imagination together in a creative story about a school choir trip in the 1960s told from the perspective of the hotel mouse, Herr Gunter Ground. Another participant, Anne-Marie, used storytelling to reflect on family history, describing her VIP trip to the Houses of Parliament years after her Suffragette great-great-grandmother had chained herself to the railings outside.

Dr. Fay continued, “Our study highlighted a potent rediscovery of creative passion and flair by participants who had insisted they weren’t creative people and who are living with a disease commonly associated with a radical loss of expressive ability.”