Words by Smiley Team
People living with advanced dementia are often thought to be beyond meaningful communication.
Carers, relatives and loved ones ask questions and try to have conversations, but often find it almost impossible to make sense of the answers they receive.
But the charity Living Words are transforming this experience, by setting up collaborations between artists and writers who work closely with dementia patients in care homes to make sure they feel truly heard and valued.
Each partnership would normally last between eight and 15 weeks and involves the writer noting down everything the person says, as they say it, with their permission. They then read the words back to them, and over the course of the project threads and stories begin to emerge.
These words are then recorded, often as poems, in a Living Words book that is owned and treasured by the patient, their carers and families.
However, as all visitors to care homes were banned during the pandemic, the charity had to change its approach.
Founder Susanna Howard (pictured) instead began to hold a series of online workshops to train care home staff in the methods Living Words use. Artists and writers then worked with carers and family members over the telephone to record their words, and the ones they had written down on behalf of those with dementia.
In total 65 people who work in, live in or visit care homes in the UK took part and a book - called Bringing The Inside Out - was created to document their experiences of the Covid-19 crisis.
Susanna explained: “This project came about following a consultancy towards the end of England’s first lockdown.
“Professional care staff told us that they felt isolated from the experiences that they knew other care staff across the country were facing. They felt unheard, and unseen – by each other, and the wider world.
“We believe that if we truly listen, we give another the validation and belief to express themselves, free from shame, wholly as we are. Through truly hearing another person’s experiences, we can build towards a better future.”
Care home staff found the project particularly empowering, as their experiences were shared alongside those they care for and their families.
Liz Clarke is a nurse in a care home in Wirral, Merseyside, who took part in the project. She said: “It’s very powerful as nurses and carers to see our voices reflected in the book. It’s not very often that we get asked how we feel, and as professionals, we don’t make enough time to look after each other.
“It’s a little bit daunting in some ways to share your thoughts and feelings and see them written down and published, but it also feels very liberating to be heard.
“It's the same for our residents. Some of them have very advanced dementia and it’s easy to think they can no longer communicate. But when their words are written down and made into a book, it’s something to be treasured.”
To find out more about Living Words and to purchase the book visit their website or connect with them on Facebook.
Donate here.
