Dementia: Listening, and the Power of Words – Part 2

Written by Active Minds on Friday the 11th of April 2014.


You can read Part 1, here.

The Reading Organisation working in a care home

Photo © of BUPA and The Reader Organisation

In March 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 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.

These are my notes from the discussion between,

·      Penny Fosten, The Reader Organisation

·      David Clegg, Trebus Project

·      Myra Barrs

Partner of James Berry, Poet


·      Susanna Howard, Living Words

The Reader Organisation didn’t start out or set out initially to work with people with dementia. But, Penny explained, a local care home approached the organisation and asked if they would run one of their literary sessions at the home.

“Originally, we couldn’t envisage how it would work” said Penny. But TRO agreed to try it anyway and the first session went ahead with the reading aloud of short stories. It didn’t work.

Yet TRO didn’t give up. Instead they came up with the idea that poetry might work a little better. And it did.

“Maybe it’s the lack of logic and the rhythm”, Penny said.

Something both Susanna (Living Words) and Penny (The Reader Organisation) seemed to agree on is that their work, although different, helps to bring people “into the same space”.

Susanna talked of “trusting in the listening process” and gave her own example of a man with dementia who was not known to speak much, who she’d been sat co-creating a poem with.

When Susanna asked him what he’d like to call his poem, he didn’t say anything for a very long time – a long enough time for Susanna to start to wonder whether he’d heard her, whether he was engaged in thinking about it at all or whether he was elsewhere in his thoughts altogether.

Using the Living Words technique Susanna was in the moment with him – the two of them sat in silence.

More time passed.

And then, just as Susanna was beginning to think about moving on in the process, announced with conviction,

Sensitive Reaction”!

“You just had to really, really wait (for him to talk)”, said Susanna.

Susanna from Living Words delivering co-created poems of those with dementia in care homes

“Listening is key”, David (Trebus Project) said.

In 2001 David (a Sculptor) started visiting a care home for two hours a week to run art activity sessions. His interest in dementia and listening, lead him to start a conversation with one woman that unravelled into a 3-year project and resulted in a 28,000 word written Life Story.

David said he’s done his ‘Mark Twain 10,000+ hours’ of talking with people who have dementia, and organisations now use David’s work to improve their understanding of people with dementia.

Portrait of Sheila and her younger self Trebus Project

When asked by Harriett Gilbert, “What are you hoping to achieve with your work?” Penny talked of The Reader Organisation’s work with their research partner, the University of Liverpool and the opportunity that it gives TRO to try new things out.

Penny made it clear that by working closely with their research partner, TRO wished to measure whether, through the work that they do, the symptoms of dementia can be reduced. She explained that results in this area are cumulative and they have been looking at the difference in results when the consistency of the sessions is once a week, or three times a week, or five times a week.

The other thing we do, explained Penny, is that we enable people “to have new thoughts” and “to still be creative”.

I liked hearing that.

When the subject comes up about the thoughts of those with dementia, the emphasis is so often on memories past, thoughts on repeat, or thoughts forgotten.

Penny’s explanation around TRO’s work helping people to have “new thoughts” is a refreshing reminder that novel thoughts and ideas encourage a fresh way of looking at dementia and time spent with those who have it – TRO creates opportunities for those with dementia to indulge in thoughts that might emerge in the present moment.

Susanna’s answer to the same question was “to offer people an opportunity to be able to communicate, and be listened to.”

“It’s called Living Words for a reason,” she said of her organisation, “because people are alive!”

“Those with dementia need their deepest selves engaged with” said Myra of those with dementia, “and this can be done well through the arts.”

Myra spoke of her experiences with her pertner, James Berry, who has dementia (and who Susanna has worked closely with).

James is a poet who grew up in Jamaica and came to England in the late 1940s. His poems and books have been widely celebrated.

Myra spoke of the many kinds of dementia there are and the generalised so-called ‘stages of dementia’ that people within the medical community and in the online dementia guides use to help the relatives of loved-ones with dementia understand the dementia journey better, but said that her experience of James’ dementia is not as structured as the generalisations make out, saying that “there are all kinds of stages they don’t tell you about”.

And of course that’s true, as every person is unique and every person has a unique experience, even if there are patterns and similarities driving the lists of dementia generalisations.

Myra spoke of James’ love for and use of language in his life, work and career and used examples of how language has now changed for him and how his words are not always comprehensible, to her or to others.

Never the less, she said,

“I recognise his essential self in his words.”


Black and white portrait of poet James Berry

Photo © of Sal Idriss


People Equal

By James Berry

(Read at the event by Malika Booker


Some people shoot up tall.

Some hardly leave the ground at all.

Yet-people equal. Equal.


One voice is a sweet mango.

Another is a nonsugar tomato.

Yet-people equal. Equal.


Some people rush to the front.

Others hang back, feeling they can’t.

Yet-people equal. Equal.


Hammer some people, you meet a wall.

Blow hard on others, they fall.

Yet-people equal. Equal.


One person will aim at a star.

For another, a hilltop is too far.

Yet-people equal. Equal.


Some people get on with their show.

Others never get on the go.

Yet-People equal. Equal.