The Creative Dementia Network: Digital Tools for Wellbeing with Dementia (DoWell)

Start date

September 2023

End date

July 2024


The human and economic costs of dementia are staggering. There are 55 million people currently living with dementia, but this is expected to rise to 140 million by 2050. Dementia care costs $1.3 trillion a year, but this will rise to $2.8 trillion by 2050. 
Drug treatments for dementia remain limited, but there’s growing evidence that non-drug therapies can make life with dementia better, if not longer. Studies using creative expression (CE) programmes based on arts, drama, storytelling and others have proved particularly effective in ameliorating certain neuropsychiatric symptoms, positively impacting quality of life, and amplifying the voices of people with dementia to thereby counter stigmas surrounding the disease. 
Dr Stephen Fay has extended this evidence in important new directions. From February 2020, he led the Proyecto Narrativas study using the TimeSlips storytelling method with more than 70 participants in Medellín, Colombia. The outbreak of the COVID-19 pandemic led to an urgent transition to digital delivery, which was both a challenge and an opportunity. Over the next 18 months, Proyecto Narrativas became the longest, largest and first online evaluation of this method, and a communication and creativity lifeline for participants. 
The Digital Tools for Wellbeing with Dementia (DoWell) project, funded through the University of Surrey’s Arts & Humanities IAA, will bring the benefits of Stephen’s work to the UK and deliver positive impacts to people living with dementia (all members of the 3 Nations Dementia Working Group). Working with the participants, industry partners and inclusive design specialists, DoWell will co-create an accessible toolkit for the design and delivery of future digital health and wellbeing programmes for people with dementia. 


Planned Impact

There is an urgent need to extend the positive impacts of digital health and wellbeing programmes to people living with dementia in the UK. There is also a need to capitalise on the vital experiences of the COVID-19 pandemic to create toolkits that will enable designers, practitioners and policy makers to support scaled-up access to these digital therapies for large populations at relatively low cost. 
This project will extend the positive impacts of the Proyecto Narrativas digital CE study and facilitate access to Goldster’s comprehensive digital activities suite to people living with dementia in the UK. The project will go further and ensure its impacts are targeted, sustainable and replicable through the cocreation with key stakeholders of a toolkit for the design and delivery of future dementia-focused eHealth and eWellbeing solutions. 

Phase 1 Outcomes

In this first phase of the DoWell study, we used the Timeslips method to create group stories inspired by visual stimuli. This gradual immersion into creative storytelling was welcomed by the participants.

"It wasn't like jumping into a swimming pool where you don't know what the temperature is like and realising it's cold and perhaps you don't really want to be there. 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."  - Study Participant

Phase 2 Outcomes

The sessions in this phase were led by David Mark, an award-winning novelist and creative writing coach with Goldster. Inspired by the participants' insistence that memory wasn't a dirty word for people living with dementia, David first prompted them to write stories based on their own reminiscences.
Later in this phase we started to make creative magic by combining memory and make believe, often following David's prompt to tell our remembered stories from someone (or something) else's perspective. This also extended to the participants' imaginative reflections on their dementia diagnoses, which became some of the project's most powerful stories.