Living Words // Shutnell

A brain themed game of piñata offers up the first of many glimpses into the world of those living with a dementia. Eleven minutes of fragmented insights. The thrum of an MRI scan; just ankles, stripy socks and a mark on the bottom of one shoe to contemplate on.  We wait for a bomb to detonate, loud beeps marking the countdown. A calm plunge into deep water as internal chatter is left behind. The jerky mesmeric dance of communication even in the end stages of a disease that has stripped away brain function. Words. A soundtrack of words. We are asked to consider the invisible thread that links two brains through the medium of communication. Where does one person end and the other begin?

Susanna Howard, artistic director of the Living Words charity, has spent a decade working with people living with a dementia. Going into care homes and hospices, her team of writers offer people the opportunity to rediscover their voice. A voice they might have lost during the progression of the disease. By recording and reading aloud the words of those they work with, they gift families and the individual themselves a chance to see themselves as a person again at a time when it is all to easy to see just a disease. Howard has previously written, directed and produced two stage productions on similar themes for the Normal? festival and this year her process has evolved into a short film of enquiry into the quiet, noisy, joyful, tearful, angry, peaceful world of a dementia.

Tracy (published poet), Wayne (passionate campaigner) and Glynis (keen gardener) join Susanna both in the film and on stage afterwards for a discussion around what it's like living with a disease that affects one in three people over the age of 65 in the UK, and increasingly those nowhere near that age. David comments on the choice to include three people recently diagnosed with a dementia rather than those in the end stages, and we are reminded that each of these human beings are living well in abundant family and friend filled lives.

I leave the auditorium considering the importance of the acceptance of life of life’s terms, no matter the steep cliff faces we have to climb and the immeasurable value that comes from being a mindful and aware participant in the journey. In a world fraught with division, anger, isolation and lives often lived out of sync, I'm reminded of the potential for interconnectedness that breathes and evolves through communication, no matter its shape. 

‘It's like we become each other when we are really listening.’


- Melissa Jacob


Living Words - http://livingwords.org.uk

Dementia Friendly Kent - http://dementiafriendlykent.org.uk

Alzheimers Society UK - http://www.alzheimers.org.uk

Finding the Poetry in Dementia - https://www.agingcare.com/articles/finding-poetry-in-dementia-157152.htm

Only the Lonely - https://www.unforgettable.org/blog/only-the-lonely-dealing-with-loneliness-and-isolation-in-dementia/