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Reflections from a dementia training retreat

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approaches to dementia care, arts and theatre, communication, education and training

Throughout my life, I’ve cultivated a particularly cherished relationship with words. Words are awesome. I’ve always been drawn to the energy of language, the tide of prose, the lilt of conversation. Words can be delicate, powerful, sustaining. Zesty and dynamic. They can transport us through time, across borders, into minds. Words can give birth to new ideas, and raise the dead. They can of course, also be mundane, practical and underwhelming.

Crucially, words are often a portal to emotion, and meaning. That very metaphor however – the image of words as an opening or a gateway – hints at how they can be problematic. It suggests there is a threshold to be crossed, a door to be opened. The implication being that one needs a key, or indeed a password, in order to be let through. Extrapolated, the conclusion is that words could have the potential to exclude or refuse entry to those attempting to access their cavern of treasures.

In June, I was fortunate enough to spend a life changing week at the Memory Bridge dementia training retreat just outside of Bloomington, Indiana. At the Tibetan Mongolian Buddhist Cultural Centre, I was enveloped by beautiful woodland, space for reflection and a stunning group of fellow participants brimming with generosity, wisdom and heart. Memory Bridge is an organisation based in America, which seeks to understand and bring an end to the social and emotional isolation frequently experienced by people living with dementia. This isolation is often not as a result of the condition itself, but rather, how we as a society interact with people following a diagnosis.  The retreat was secular though spiritual, and the Buddhist principles of compassion, reciprocity and harmony chimed with our education and learning.

The week offered a stimulating kaleidoscope of discussion, teaching and listening. From a drumming circle to early morning meditation, analysis of Tolstoy and García Márquez to daily visits to the local Alzheimer’s care home – all while being filmed for a TV documentary – this was a glowing immersive experience unlike any other. 

When friends, family and colleagues have asked me about my trip to the States, the irony is, I’ve struggled to put into words such an incredible adventure. And it is this revelation about words and communication which is perhaps one of the most important realisations I had during the retreat. Feelings and words are not always compatible. Words can have limitations.

I truly began to appreciate that the quality of an interaction is not dependent on the words that are shared, offered or exchanged. Just because two people are both capable of verbal communication, it does not follow that should be the default medium used for expression and making meaning. Language is simultaneously both universal and highly personal. Familiar words might be employed in a conversation, but the intention or connotations sitting behind the words might be individualised and unique. Words can be like codes – without the relevant person-centred manual, there can be no hope of translation. And especially during interactions rich with emotion, like those with people living with dementia, sometimes words just aren’t enough. Sometimes, with words, we fall short. Words aren’t always the best, right or only way to make a connection. I learnt that silence between two people doesn’t necessarily mean emptiness, but rather an opportunity for mindful attendance. And that sometimes the holding of a hand, or a gaze, can be the most supportive dialogue of all.

Words are just one possible means that we have for conversing with people with dementia. Yet again, this helps to make the case for the arts – which grant opportunities to use the body, respond to textures, play with colour, react to sound – as crucial for holistic and enriching dementia care. As an avid reader and talker, words will always be my friend. But now I am more sensitive and aware of their imperfections and alternatives. Words may help to lay a foundation. But it takes many materials to build a bridge. 

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