The labyrinth of memory: unveiling emotional safety in Dementia

By Nicole Thomas

September 2023

In the intricate tapestry of human existence, few threads are as delicate and profound as memory. Dementia, a condition that gradually erases the pathways of remembrance, leads us to a junction where vulnerability and resilience converge. As I explore these unfamiliar corridors, I have found myself returning to beacons of light, which helped me navigate my own vulnerability and resilience.

Brene Brown, a torchbearer of shame resilience research, sheds light on the importance of emotional safety in all of her work. Trevor Noah's insights from being born a crime remind me of the role language plays in shaping our sense of safety, as well as feeling represented by those around us. I have found a new beacon in David Truswell’s book which weaves together insights from multiple diverse perspectives of dementia, unveiling the hidden link between traumatic backgrounds and the meandering paths of memory. I am also connected somehow by the experience of watching my non-verbal autistic son transform with the help of teachers who put all learning aside to assist him in navigating his emotional turbulence first.

In the realm of human emotions, shame is a force that can both shatter and fortify. There is a nuanced dance between shame and emotional safety that occurs within us in nearly all of our interactions with others, even those who are strangers to us. Possibly especially so. As individuals with dementia tread the uncertain ground of fading memories, with those who were once familiar becoming unrecognisable, the spectre of shame can cast a long shadow. David Truswell's wisdom reveals that for those with traumatic backgrounds, the memory loss journey might intertwine with revisiting moments that were once obscured. Memories, like ancient whispers, rise to the surface, revealing the complex interplay between our past and our present state of vulnerability.

Within the intricate corridors of the mind, secrets find sanctuary. Truswell's perspective provides a thought-provoking lens through which to view the link between memory loss and hidden histories. Imagine an Irish immigrant escaping religious persecution, their memory morphing into a refuge where secrets of forbidden love and societal nonconformity come to life. As dementia chips away at the walls of short-term memory, the past resurfaces, and those concealed narratives return. The fear of exposure, the dread of lost secrets coming to light, becomes a haunting ghost for those navigating dementia.

In the mosaic of human experience, familiarity is a balm for the soul. As dementia erodes the landscapes of recent memories, individuals instinctively revert to what feels safe and known. Just as Trevor Noah, growing up in apartheid-era South Africa as a mixed-race boy, turned to language as a lifeline in the unfamiliar territories of his youth, those with dementia cling to what makes them feel secure. Noah's experience sheds light on the power of language as a bridge between vulnerability and safety. He, as a light-skinned individual, faced the paradox of being both a target and an outsider among various family clans and tribes. His appearance, a striking contrast against the backdrop of his surroundings, made him a vulnerable mark. However, as he endeavoured to learn multiple languages, he unveiled a tool of survival. By speaking the languages of his fellow South Africans, he transcended the barriers of appearance and ventured into a realm where his speech resonated with the echoes of belonging. The formidable walls of tribal divisions softened as his words carried the rhythms of shared identity. This shared identity, as Truswell enlightens us, emerges as a balm that soothes the anxious mind grappling with its loss of bearings.

For me, as the healthcare realm converges with the labyrinth of dementia, the concept of emotional safety takes centre stage. For the pragmatic minds, it might be tempting to overlook the nuances of emotional safety in translating theories into practice. However, for those who embrace a Critical Realist perspective, understanding the facets of human experience becomes paramount. Like a guiding star, emotional safety illuminates the path for public health, primary care, and secondary care researchers exploring the unknown paths of dementia in the search for new knowledge.

When we look at healthcare systems and services through the prism of emotional safety, a paradigm shift occurs. The questions we pose, the designs we craft, the expectations we harbour, all transform when viewed through the lens of "what keeps people safe." The fundamental driver of human behaviour, the cornerstone of our interactions with one another and our social systems, lies in feeling seen, heard, loved, and secure.

As I reflect on the intricate details of memory, shame resilience, and emotional safety, a profound truth emerges. Dementia teaches us that the essence of being human, our identity, rests in the delicate balance between vulnerability and resilience. Brene Brown's wisdom, David Truswell's insights, and Trevor Noah's multilingual journey serve as guideposts in this exploration. In the world of healthcare, acknowledging and prioritising emotional safety is not merely a footnote; it's the linchpin that holds it all together. As I decipher the sophisticated dance of memory and emotions, it unveils the essence of humanity itself – the pursuit of safety, love, and belonging in a world which can make us feel our most vulnerable, even when it doesn’t intend to.

Presently, it seems as though we are constructing pathways towards health services, positioning them at the labyrinth's core, complete with a multitude of maps and instructions on how to arrive. We wait, frustrated at the lack of arrivals, creating more and more maps and pathways to the centre. What if instead, we traced our way back to their sanctuaries of safety? Instead of a tsunami of information to accompany them on their lonely journey towards help, we could create an army of scouts, meeting them where they reside. This reframing urges us not only to anticipate individuals finding their way through the labyrinth, but to become companions on a profoundly personal expedition.

Together, we navigate an ever-shifting realm moulded by fading memories and the reshaping of reality, as lived by those with dementia.