‘Words come alive’

Des Kelly, Forum Trustee, on the launch of Bringing the Inside Outa new book of poems uses the voice of people living with dementia 

What a year 2020 turned out to be for everyone, especially those in the care home sector. Uplifting news has certainly been in short supply. How wonderful therefore to receive an invitation to the virtual (Zoom) launch of a new book ‘Bringing the Inside Out’ by the arts and literature charity Living Words. Through a pioneering UK-wide project by Living Words, a group of over 60 professional carers, those living with a dementia and their relatives spoke about life in care homes under Covid19 lockdown restrictions with disarming frankness.

To create the book, Living Words ran weekly sessions with carers from 15 care homes across the UK with the words of people with a dementia the primary content of the book. This was followed by phone sessions with professional carers and relatives, in which they wrote their words down using their Listen Out Loud Methodology. Listen Out Loud is the way Living Words works and has been honed over 15 years of working with people with late-stage dementias. A person’s sounds and words are written, as they speak, and edited with them to validate their sense of self when read back. This makes for an unconventional use of grammar and arrangement on the page. Each person taking part in the project has received a copy of their own words as well as the words appearing in the book.

Zoom launch

I was pleased to be one of 61 participants who joined the Zoom launch on 16 December to hear about this wonderful project and the experience of those involved. “Words coming alive” was a phase repeated a number of times during the afternoon and the way the process really “makes you listen”. Carers referred to becoming more conscious about actively listening to people.

Carers and relatives both spoke of feeling abandoned when the lockdown occurred. Not just the fact that it wasn’t possible for relatives and friends to visit care homes or that contact could only happen through virtual means but the effect of PPE difficulties, the feelings of helplessness, coping with death, loss and grief. The way news media reported on care homes.

There was a strong sense of a lack of support, especially from government, as well as lack of acknowledgement of what was happening to care homes in the early stages of the pandemic such as people transferring from hospital with Covid19. There was a reminder too that care homes continue to experience the impact as they are still living through this devastating pandemic. We may have a vaccine but there is still a major task to ensure that as many residents and care staff as possible get the vaccination.

It was an emotional event for sure with carers and relatives recounting their experiences and Living Words reading the words of those living with dementia. I believe the process behind this innovative project could offer a wealth of learning about ways to support care homes remotely that could have application and relevance way beyond the coronavirus pandemic. This project and book are the result of consultancy the charity did during the UK’s first lockdown.

‘Bringing the Inside Out’ was published on 14 December. It is supported by the Dementia Research Centre and the National Care Forum and has supportive comments from actors Brian Cox and Christopher Eccleston. The project and the book have been supported by funding from The Arts Council England, National Lottery Community Fund, Kent Community Foundation and FHCLCT.

My copy of this insightful book is on order and I can’t wait to read it.

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