This new research method enabled people with dementia, family carers, student social workers and members of the public to gain insight into the experience of living with dementia. 

Reading groups were formed where extracts from famous literary books about dementia such as Still Alice and Elizabeth is Missing were shared to test how fictional characters might help readers with different experiences of dementia to develop empathy towards people with dementia. Over six weeks, extracts were shared from these novels in a carefully controlled, on-line reading group setting. 

The study involved researchers coming from all backgrounds including social gerontology, policy, linguistics, charities, people with dementia and carers, contributing to the research as well award-winning creative writer Jan Carson as outreach officer.    

Speaking about the research, Dr. Gemma Carney, Senior Lecturer in Social Policy and Ageing, from the School of Social Sciences, Education and Social Work at Queen’s University said: “This research builds on a growing body of knowledge which listens to and amplifies the experience of people living with dementia. It is important as it counteracts dominant public misinformation that all older people will get dementia and that people with dementia cannot read, engage with others, or have a sense of humour. 

“Our research helps to counter negative and ageist assumptions of people with dementia and older people more generally. It also breaks new ground in using reader response to investigate how fictional characters affect readers’ views on dementia.” 

Dr Carney continued: “The title of our article is a quotation from one of the readers with dementia – who cited fictional character Saul Reimer’s claim that he had ‘Sometimer’s’ rather than Alzheimer’s was an accurate depiction of the ebb and flow of symptoms from one day to the next.  It is unlikely that we would have reached this conclusion without using the fictional character’s experience as a starting point. 

“Ultimately, our conclusion is that if we were to listen to the people who have experience of living with dementia, to hear what they say when they describe what it is going on inside their heads, people with dementia begin to resemble other disabled advocates. Equally, the argument that they deserve the same rights as any other disabled people gains ground.” 

Each reading group was distinct, allowing people with dementia to speak freely about their inner lives. The results are reported in a recent issue of the Gerontologist. 

Collaborating on the project included researchers Dr, Paula Devine from the School of School of Social Sciences, Education and Social Work and Dr Jane Lugea from School of Arts, English and Languages at Queen’s University and Dr Carolina Fernandez Quintanilla from the Universidad de Grenada. 

 

Media

For media inquiries please contact Michelle Cassidy at Queen's Communications Office on email m.cassidy@qub.ac.uk