Dementia: Listening, and the Power of Living Words – Part 1

Written by Active Minds on Tuesday the 18th of March 2014.


Last week I attended an English PEN event at the Free Word Centre in Farringdon, London.

The event entitled ‘People with Dementia and the Power of Words’ was chaired by writer and BBC broadcaster Harriett Gilbert and it invited Susanna Howard of Living Words, David Clegg of the Trebus Project, Penny Fosten of The Reader Organisation and Myra Barrs, partner of poet James Berry, to discuss the possibilities and challenges of writing, reading and listening projects for people with dementia.

Author and poet Malika Booker read some of her favourite James Berry poems to close the event.

Photograph of Susanna's hand holding a pen, poised to take down the words of the person with dementia she is sat with

Susanna Howard of Living Words

Working with people with dementia and isolated and disempowered people, Living Words is an arts and literature programme that supports free speech and expression.

Living Words’ work in care homes inspires publications and performances to increase the reach of the works and to break down stigma.

The work enables individuals to feel heard and understood, even when communication seems lost.

Susanna’s inspiring work in care home settings uses the spoken and written word to ‘help people feel present in their lives’. Outcomes such as poems, which have been co-created with the care home residents she’s worked with, are illuminating.

Opening the talk, Susanna spoke about the act of listening, the importance of listening in the work that she does, and the techniques to listen better, such as good eye contact and the discipline of emptying the mind of all other thoughts. It was a reminder of how many different ways there are to listen, each as unique as the circumstance.

With regards to listening to those with dementia, something said to Susanna by one of the people with dementia she was sat with in one of her sessions, might just say it all:

You listen at a different level, because it’s happening at a different level.

I wrote a note to myself at this point in the talk – ‘Wavelengths’. It is ‘happening at a different level’ for someone with dementia. The question is, are we on their wavelength?

Susanna went on to talk about the importance of sharing the work she does with the other residents in her sessions, and their carers, and the difference between the transience of spoken words and the capacity for those words being missed, misunderstood or misinterpreted vs. the response to those same words in their written state.

Sentences, which may otherwise go reasonably unnoticed in their spoken form – lost to the murmurs in the room, or to deaf ears, can suddenly take on a heavyweight status in their written form:

What do you do when you got no brain?”

It’s not uncommon, Susanna mentions, to hear a person with dementia referring to himself or herself in the 3rd person. And this had me wondering about the voices inside our heads – the ones that say to us “Come on, get with it” or “If you don’t do that now, you’ll never do it!”

Maybe those voices are our poets.

In a care home setting, one of the fascinating outcomes of reading aloud the poems and thoughts of those in the room (with their consent), Susannah tells, is that individuals who may be sat next to one another for hours a day and may rarely exchange words, or converse about their feelings, find out about each other in new or different ways. One person exclaiming to Susanna, “I never knew people here felt like me.

Susanna’s work, I thought, is a great reminder that providing an enjoyable, if sometimes only momentary, hiatus to someone with dementia is an incredibly important aspect of care that should never be overlooked.

King or Queen

It’s called ‘Patient Condition’
You must not just say
‘Good morning’, ‘Goodbye’
It minimizes the relationship
Try and appraise, interest
Tenderness, consciousness, confidence
The fact that you are sharing with them
Uplift the feeling
‘Feel better already,’
Make us feel human
Not just a dummy.
Pretend you have all the time
In the world
We feel like King or Queen
© Living Words

As Susanna says, with regards to sitting with someone with dementia, with patience and commitment to engaged and active listening,

“What’s the worse that can happen?”.


Image source:

King or Queen, a co-created poem, by a lady with profound dementia, and Susanna