Published on 14/04/2021
Elderly dementia sufferer in Havana, Cuba
  • Aston University-led project using photographs to stimulate life stories among people with dementia in Colombia
  • Academic heading research has drawn on his experience in Cuba, which included working as one of Fidel Castro’s translators
  • Resulting therapy learnings could eventually bring dementia research back to help people with dementia in Aston University and the West Midlands

An Aston University lecturer is helping to break new ground in the global fight against dementia through his involvement in a study thousands of miles away.

The narrative therapy project, which uses photographs to stimulate patients' imagination, is centred on a "global hotspot" for early onset dementia in Colombia, believed to be a legacy of the Spanish Conquistadors in the 16th century.

Dr Stephen Fay, a lecturer in Spanish at the School of Social Sciences and Humanities at Aston University, spoke about his work as part of the 'Society matters' podcast series, presented by journalist Steve Dyson.

He said: "It all started in the early 1990s when I spent a year in Cuba teaching English at a university there as a teenager."

A year became five, during which Dr Fay also worked as one of Cuban leader Fidel Castro's translators, "working by candle-light with a pencil on his eight-hour speeches through the night".

Dr Fay, who also worked for a Cuban radio station as a "cultural journalist", returned to the UK to do a PhD on Cuban national identity.

"There was this prevalent image of Cuba as a sickly patient, and the idea of revolution as a cure-all that would help Cubans on the road to recovery."

But Dr Fay said he began to explore different narratives, "looking at how real people have used imaginary story-telling to try to make sense of, and tell people about, the very subjective human experience of illness. Living in Cuba definitely got me thinking about collective stories, to communicate, influence, inspire and even cure people."

Many years later, at Aston University, Dr Fay tried unsuccessfully to set up a narrative therapy project in Cuba involving people with dementia.

"There are currently 50 million people living with dementia and that is expected to double over the next 20 years. I got to thinking about the use of narratives, to tell life stories of people with dementia and, specifically and poignantly, from the perspective of people with dementia themselves."

Fortunately, Dr Fay met up with a cognitive neuroscientist from Colombia who was working on a dementia project in a region that is a global hotspot for hereditary early onset Alzheimer's Disease. This, he was told, was a result of a rare genetic mutation brought to Colombia by the Spanish Conquistadors.

"There are approximately 5,000 people with this genetic mutation that leads, in 50 per cent of cases, to this hereditary early onset Alzheimer's. In a cruel irony it also makes these people really interesting for dementia research."

Dr Fay said the "massive" dementia drug programme focused on preventative rather than restorative measures. His offer of narrative therapy research was accepted, with financial backing from the Global Challenge Research Fund paid by government to universities.

The project began with 32 people with the genetic mutation taking part in narrative workshops in Colombia. When COVID-19 put an end to the face-to-face research, the work continued on Zoom.

"Quite simply, we show the participants a photograph, a visual stimulus, and then collectively and gradually we build stories together, everybody contributing their own ideas about what's going on in the story.

"The final results are not in yet, but the observational evidence is leaving us in absolutely no doubt that these workshops have had a positive impact on things like mood, self-confidence, playfulness, communicative ability, and willingness to socialise, and their imaginations have taken off."

Dr Fay said they were now looking to spread the online therapy workshops across Latin America, including a pilot project in Cuba later this year. And he said they were also exploring ways of working with Aston University’s Research Centre for Healthy Ageing to bring the work home to the West Midlands.

Notes to editors

About Aston University

Founded in 1895 and a University since 1966, Aston is a long established university led by its three main beneficiaries – students, business and the professions, and our region and society. Aston University is located in Birmingham and at the heart of a vibrant city and the campus houses all the university’s academic, social and accommodation facilities for our students. Professor Alec Cameron is the Vice-Chancellor & Chief Executive.

Aston University was named University of the Year 2020 by The Guardian and the University’s full time MBA programme has been ranked in the top 100 in the world in the Economist MBA 2021 ranking. The Aston MBA has been ranked 12th in the UK and 85th in the world. The University also has TEF Gold status in the Teaching Excellence Framework. 

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