When language fades: How literature and imagination can help us understand people living with dementia
A new study explores how we can understand and recreate the stories and experiences of people living with advanced dementia — people who can no longer express themselves in words.
When dementia progresses, people often lose the ability to communicate verbally. Thoughts, emotions, and experiences become difficult to express, and their personal stories and identities risk being lost. Researchers refer to this as “narrative loss” or narrative dispossession — a situation where others take over the story of a person’s life when that person can no longer tell it themselves.
However, a new study from the National Institute of Public Health, University of Southern Denmark, published in the journal Medical Humanities, suggests that there are still ways to preserve these voices, even when language fails.
Assistant Professor Frederik Schou-Juul, one of the researchers behind the study, explains:
“When language and memory break down, people’s inner experiences don’t necessarily disappear — or at least, we can’t know that for sure. Evidence suggests that they may still remain, to some extent. We therefore have to assume that their experiences and inner world might still be there, and find creative, empathetic, and ethically sensitive ways of listening to and recreating their voices. Trying to preserve their stories is important — both for their dignity and for how we understand and care for them.”
Frederik Schou-Juul and colleagues from universities in Spain, England, and Germany have examined how literature, storytelling, and a practice known as critical fabulation can help relatives and caregivers preserve these “lost” voices and engage with the narratives of people living with dementia.
The study draws on analyses of literature, philosophy, ethics, critical theory, and experiences from care practice.
The role of imagination and empathy
A central concept in the study is critical fabulation. The term was originally developed to recreate the life stories of people who had been silenced in history — for instance, enslaved people who were denied the chance to tell their own stories.
“Critical fabulation is about using imagination, empathy, and ethical reflection to envision what a person might have experienced or felt — without claiming to know the whole truth. In dementia research, this means respectfully and creatively trying to reconstruct possible narratives for people who can no longer express them,” says Frederik Schou-Juul.
But the approach is not without challenges. How can we avoid putting words into the mouths of people who can no longer speak?
“That’s one of the biggest dilemmas. When we try to imagine voices we don’t have access to, we must approach the task with humility. However, we should never assume we know the full truth. Interpretation requires great care — attention to body language, small signs — and we must always remember that we can only approach, never fully speak for, the other person,” he says.
From glances to storytelling
Even when language and memory fail, a person’s inner life does not necessarily vanish. It may still surface in fragments — a look, a gesture, a sound. This is where literature and art can play a vital role.
“Stories written by people with dementia — or by their relatives — offer insight into how the disease is experienced from within, and by those closest to them. They can challenge stereotypical views of dementia and make us more receptive to the experiences and voices that are easily lost,” explains Frederik Schou-Juul.
Why communication still matters
The study does not provide concrete advice to caregivers or relatives on how to communicate with people with dementia in daily life. Instead, it points to more fundamental principles: empathy, humility, and attentiveness to the small signs that might contain fragments of a story.
“Maintaining some form of communication is crucial — for the person living with dementia and for their relatives or caregivers. For the person, it means being met as a human being with feelings, dignity, and identity. For relatives, it may help preserve the relationship and offers ways to stay close, even when words disappear,” says Frederik Schou-Juul.
Contact: Frederik Schou-Juul, Assistant Professor, National Institute of Public Health, University of Southern Denmark, Phone: +45 6550 7747, Email: fsch@sdu.dk