Living in a Bubble

Understanding the Dementia Experience

Dementia is a complex and deeply personal condition, and one way that helps me to understand its effects is by imagining life within a bubble. This metaphor illustrates how someone like me, with dementia, might experience the world—a reality that is simultaneously familiar yet increasingly detached from the shared experiences of others.

The Bubble of Memory and Perception

Imagine a bubble as a protective yet isolating sphere. For someone with dementia, memories and perceptions become confined to a world that feels safe and self-contained, even as it drifts further from the present.

The familiar faces, routines, and environments can become the pillars of this inner sphere. Yet, as our disease progresses, these anchors may start to blur or fade, leaving behind a shimmering but fragile world that can seem both comforting and confining.

A Shifting Sense of Reality

In this bubble, time and space don’t always follow the rules most of us take for granted. Moments from the past might vividly resurface, making it hard to distinguish between what was and what is.

This can lead to confusion when current events or surroundings no longer align with the memories that fill the bubble. For example, a favourite song from decades past may transport me back to a cherished moment, even as the world around me has moved on.

For a while, I am that young man queuing outside the Marquee Club in London before a Who concert. It is 1970. I can smell the patchouli and feel the press of the crowd and the excitement and anticipation.

In the moment, it is perfectly real. I am transported. This blending of eras can feel like being caught between two worlds—one that is tangible and one that is a vivid recollection. It is both wonderful and unsettling.

For me, the worst part of my condition is lucid dreaming.

Imagine drifting off to sleep and suddenly realising you’re in a world where the rules are yours to write. That’s the charm of lucid dreaming—a playful state where you might find yourself soaring over psychedelic landscapes or having tea with a long-lost friend.

For some people with dementia, these lucid dream moments can offer a delightful escape, a secret doorway to a realm where creativity and joy abound. Still, they usually manifest as a bleak landscape where I wander around a foreign country, lost and seeking a destination that I never quite arrive at.

Every night is a re-run. My waking life can sometimes feel like a foggy day. Yet when sleep takes over, the dream world often becomes a place of great clarity, populated with people I knew decades ago.

In these lucid moments, familiar faces may appear as gentle guides, leading me through a fantastical journey that defies time. Still, more often, they are malevolent and cruel. One night, I could be strolling through a serene garden of old memories, and the next, I might be in a strange Cold War European city looking for a way back to my family.

It’s a reminder that even when reality seems challenging, the mind’s ability to conjure up an emotional pseudo-reality remains vibrant and intense.

Often, I dread the prospect of falling asleep and tumbling into a world that is strangely familiar yet completely alien at the same time.

The Emotional Landscape Within the Bubble

Living within this bubble is not just about memory loss—it’s also about the emotional weight that accompanies it. The bubble may provide comfort through familiar patterns and cherished routines, yet it can also create a sense of isolation.

People with dementia can feel misunderstood or disconnected because the world outside the bubble often moves at a different pace.

This isolation can sometimes lead to feelings of loneliness or frustration as we struggle to communicate experiences that are deeply personal and often ineffable.

Navigating Life With Compassion

Understanding the bubble metaphor can guide us toward more empathetic care. Recognising that a person with dementia is not simply forgetting but is instead living in a world built on layers of memories and emotions helps shift our perspective.

Caregivers and loved ones can:

• Create Familiar Environments: Maintaining routines and surroundings that echo positive memories can help ground us within our bubble.

• Practice Patient Communication: Listening and responding gently can bridge the gap between our internal world and the external reality of the now.

• Engage Through Reminiscence: Encouraging the sharing of memories can validate our experiences and foster meaningful connections, even if these memories are from a different time.

The Beauty and the Challenge

The metaphor of the bubble reminds us that while the inner world of someone with dementia is rich and layered, it is also increasingly isolated from the shared reality. There is a poignant beauty in how memories and emotions continue to define a person’s identity, even as the lines between past and present blur.

At the same time, it is a call to action for carers, family members, and society to approach dementia with understanding, patience, and compassion.

In essence, the bubble is not just a symbol of confinement—it’s a testament to the enduring nature of personal identity, even in the face of overwhelming cognitive challenges.

By peering into this bubble, we can gain insights into a tender and tumultuous world, reminding us to cherish the memories we all hold dear while offering support to those whose minds have retreated into their own private space.

Living with dementia is an experience that transforms everyday reality into a landscape where memories serve both as anchors and as isolating barriers.

By embracing the bubble metaphor, we can better understand the inner life of someone with dementia and foster a more compassionate, patient approach to care.