Disease-modifying drugs for Alzheimer’s offer a meaningful glimpse of hope for many people who fear dementia. Alzheimer’s disease is the most common cause of dementia, but dementia itself is an umbrella term for symptoms such as memory loss, confusion and changes in thinking.
Unlike older dementia drugs, which help with symptoms but do not change the underlying disease, disease-modifying treatments are designed to slow the disease process itself. So far, these treatments appear to delay symptom progression by several months rather than years. They also carry a small but serious risk of side-effects, including swelling and bleeding in the brain. At present, they are suitable only for some people in the early stages of Alzheimer’s disease, meaning that many others will still face dementia with no cure on the horizon.
The fact that scientists are now achieving some degree of disease modification has generated enormous interest in dementia research. That attention is essential if these advances are to continue. But public excitement can also narrow the conversation, drawing attention towards the biology of dementia and away from the lives of the people experiencing it.
For many years, social scientists have argued for a broader understanding of dementia. Dementia begins with changes in the brain, but it affects the whole person. It can change how someone remembers, communicates, relates to others and makes sense of the world.
That means dementia care has to do more than slow biological decline. It also has to ask what helps a person feel recognised, connected and still themselves. Even when medicine cannot offer a cure, care can still reduce distress, support identity and create moments of meaning. Music, poetry, storytelling, theatre, visual art, dance and museum work can give people with dementia ways to respond and connect, especially when ordinary conversation becomes difficult.
The value of this work can be hard to measure. A person singing along to a familiar song, recognising an image, laughing at a shared joke or becoming briefly more engaged with others does not fit neatly into the same evidence framework used to assess a drug.
As these interventions become more common, and increasingly extend beyond the very early stages of the disease, they make visible the humanity of people living well into the dementia process. Such work can challenge harmful stereotypes in print and social media, where dementia is often portrayed as a “living death” and people with dementia are reduced to “zombies” or “empty shells”. Language like this encourages the idea that a person with dementia has already disappeared, even while they are still alive, responsive and capable of connection.
Yet there is a further risk. If public attention focuses mainly on people who can still speak, sing, paint, perform or respond in recognisable ways, those with very advanced dementia may be treated as unreachable. They are already frequently considered unsuitable for research, and sometimes even unsuitable for creative or relational engagement.
In dementia, this can create a damaging divide between those who can still communicate in familiar ways and those whose communication has become harder to understand.
Alex Kornhuber, Author provided (no reuse)
In a recent publication, we explored the limits and possibilities of engaging with people living in the very late stages of dementia. The paper examined two ideas that can help us think about this problem: narrative dispossession and critical fabulation.
Narrative dispossession means being deprived of control over your own story. As dementia progresses, people may become less able to explain themselves, describe memories, correct misunderstandings or tell others what matters to them. Their life does not stop being meaningful, but their ability to narrate that life in conventional ways may become diminished.
This creates a serious ethical problem. How should carers, researchers, artists or family members respond when a person can no longer tell their own story clearly? What should we do with the fragments that remain: a gesture, a glance, a touch, a sound, a facial expression, or even an absence of response?
Critical fabulation offers one possible approach. The term comes from work on history, archives and silence. It describes a careful form of imaginative reconstruction, used when direct evidence is partial, missing or impossible to recover. In dementia care and research, it can help us think about how to engage ethically with the inner lives of people whose communication has become profoundly limited.
At its best, critical fabulation is tentative and restrained. It allows us to ask what a person might be feeling, remembering or communicating, while remaining honest about the limits of interpretation.
That interpretation must be humble. A caregiver may know a person’s history, habits, preferences and fears better than anyone else. This familiarity can deepen understanding, but it does not guarantee accuracy. Even those closest to a person with dementia must remain alert to the risks of projection, over interpretation and reading their own assumptions into another person’s experience. Or, even, taking over someone else’s story entirely.
If we refuse all imaginative engagement, we may leave people in the latest stages of dementia in silence. That silence can become a form of erasure.
For this reason, critical fabulation in dementia care and research must remain anchored in restraint and relational care. It means examining our own assumptions, motives and power, and requires us to ask what this person might be experiencing, but also what right we have to narrate that experience.
New drugs may help some people stay in the earlier stages of Alzheimer’s disease for longer. But dementia care also requires us to think about those for whom these drugs will do little or nothing, and those who are already far beyond the point at which they can tell us their stories in familiar ways.
Their lives still require attention. Their silence should not be mistaken for absence.
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