What If We've Been Asking the Wrong Question?

Like many people working in dementia care, we read the recent reports of a woman with advanced Alzheimer's who experienced a temporary return of abilities following supervised administration of psilocybin with great interest.

The improvements described seem remarkable. According to the reports, she became more engaged, more communicative, more independent and appeared to regain access to memories and aspects of herself that had seemed absent. It is important to point out that this was a single case report. It does not prove that psilocybin is a treatment for dementia, and the researchers themselves have been careful not to make such claims.

But what caught my attention was not so much the treatment itself, but the question it raises.

"If an ability can briefly reappear, where was it?"

For many of us involved in dementia care, this question may feel familiar. For me, it brings to mind the phenomenon sometimes referred to as terminal lucidity. Unexpected moments when a person who has been living with profound cognitive impairment suddenly appears more present, more aware, or more able to communicate for a period of time shortly before death.

Many families who have spent time around dementia have their own version of this story. A fleeting conversation. A moment of recognition. A joke that seems to come from nowhere. A glimpse of someone others believed had already gone. Science doesn't understand these moments particularly well, but they are well documented.

I'm not rash enough to suggest that these observations mean dementia is somehow reversible, or that the whole person remains unchanged beneath the condition. It's undeniable that dementia causes profound changes, and those changes are very real. But stories like this continue to raise an intriguing question for me.

Is it possible that some aspects of experiencing dementia are the result of abilities being inaccessible rather than absent?

From where I am now, looking back on how this all started, I realise this is a question I have been circling for years, first through my own experiences with my father, and later through our work at Timeless Presents.

One of the things that seems to have been a constant was how often we encountered moments that challenged our assumptions. Someone who appeared unable to engage would suddenly become curious. Someone who seemed withdrawn would respond to a familiar image or object. A conversation that seemed impossible would unexpectedly emerge. These moments are often brief, but they matter.

Over time, they contributed to an idea explored in our recent book, The Dementia Interface Lens.

The book is purely practical and does not attempt to explain the biology of dementia, nor does it claim to offer a new scientific theory. Instead, it explores the possibility that dementia may also involve disruption to the processes that help us maintain continuity with the world around us. At its heart, the Interface Lens asks whether some of the difficulties we see in dementia might arise not simply because abilities have disappeared, but because a person's ability to access and express them has become disrupted.

Memory, prediction, communication, recognition, orientation. The countless processes that allow us to make sense of where we are and who we are in relation to everything around us. From this perspective, some of what we observe in dementia may reflect not only loss, but also a disruption in access.

I don't know whether the recent psilocybin case has anything to do with this. Perhaps future research will reveal a completely different explanation. But I find it interesting that phenomena as diverse as terminal lucidity, unexpected moments of engagement, and now this case report all seem to point towards a similar question.

How much of what we interpret as absence might actually be inaccessibility?

I have no definitive answer. What I do know is that experiences like these remind me to be cautious about assumptions. When someone can no longer communicate in the ways we expect, it is easy to conclude that there is less going on than there once was.

Perhaps the safer position is curiosity. To remain open to the possibility that a person's inner world may be richer, more complex and more intact than we can easily observe.

Whether future research supports that view or not, I suspect it is a useful place from which to approach dementia care. Because if there is one thing this work has taught me, it is that people continue to surprise us when we give them the opportunity.