Telling it like it is

Poetry Therapy for Dementia

John Killick

John Killick has been practising in this area for twenty-two years. It is different from the other creative outlets, like painting or singing, because most people with dementia are unable to pursue the art physically. This means that he has had to turn himself into a listener, transcriber and shaper of the words on the page. He started this working one-to-one, and latterly has experimented with group composition.
He considers writing a most significant expressive medium because it enables participants to explore verbal possibilities, and for them to put their thoughts and feelings out there, and to evaluate them in some measure, rather than having them locked inside them. It also enables the rest of us to get to know the preoccupations and interpretations of those with the condition; this is essential for maintaining contact with them as persons, and learning how to react to them in positive ways.
The process is one of relationship-building through general conversation, followed by silence from the facilitator whilst the person speaks on whatever subject interests them. Their words are written down or tape-recorded and later transcribed. If a poem emerges, well and good; there will always be a text to hand back in any event. Permission for any sharing that may occur has to be sought.
Here is a poem by Peter Van Spyk, a man attending a day centre:


This is heaven
because for a lot of people it helps them.
You do it on a one-to-one
and that’s right.
I feel I’m very lucky
because I’ve got something like poetry.

I’ve lots of memories, good and bad.
Most of my friends, they never say a thing —
I think they’re frightened:
I’ve got a friend in London
and he’s only phoned once in three years.

We’ve just come back from Madeira.
My wife noticed it and told me.
I said “I’ve got Alzheimers”.
I could see the same signs.
He was there with his wife.
She had it. On the last three days
we stayed together,
we found a rapport.

Some people can’t handle it.
They think, how can they carry on?
But I don’t think I want these things round my neck —
I want to live!

I’m not wanting to get rid of myself,
I’ve never even thought of it.
I really mean it:
if you take your courage in both hands
it can be done!

Aside from any qualities this poem may have as a work of art, we can appreciate Peter’s attitude towards his diagnosis, and the nature of his resolve to stay in charge of his life; we can encourage him on this basis. So there is often a practical outcome of this work.
On the other hand, some poems, like the following by Mary Williams, are to be valued primarily for their objective content: outward-looking and reminiscent; Mary doesn’t say what she feels; this is implicit in the telling:


Once I slept with my grandmother and watched her dress.
First one petticoat, then another, then another,
then another, then another. And I said, how many
do you wear, grandmother?
And she said, only
one more.

She’d start with her flannelette one — always wool
next to the skin — then her linen ones, and then
her skirt. And over the top she’d wear her apron.
She was a tiny little woman.
And in her hat she’d wear
a long hatpin
to hold it on.

Poems of this kind allow people to evaluate and celebrate their lives: an important contribution to wellbeing.
Of course dementia affects fluency of both thought and language, and there are some individuals with whom it is difficult if not impossible to communicate with on a verbal level. With those who appear to be losing language but can still contribute something, the communal poem offers real possibilities. John has found that a group of up to eight people with the condition, carefully selected to represent a range of abilities, with staff or volunteers to assist those with the more severe difficulties, can work well. There needs to be a stimulus to set people talking. This can be an object to taste or smell or touch, or a piece of music, or a poem (particularly one with a dominant shape), or a painting or photograph. In every case multiples must be provided: a single artefact is insufficient to consistently engage interest as it is passed around. In the case of a picture (his favoured stimulus) it must be large, have some sense of mystery about it, be mounted on card and laminated. Everyone studies the picture and calls out reactions to it. These are written on a flipchart by the facilitator. By a process of negotiation a final version with title is arrived at. Some poems assembled by this method can be long and detailed. Here is an example of a cogent and insightful one composed by a group of seven persons; the original stimulus is not needed for enjoyment of the finished product:


Don’t you know that’s Gabriel
blowing his horn?
And that’s the dark world
where we are
and up there, that’s where
we aspire to be.

It takes a lot of facing, to know exactly
what it’s supposed to be.
It takes a lot of focusing
to excel at what you’ve got.

In a one-to-one with someone who is linguistically challenged, time and patience are needed, but the reward, when it comes, can be commensurately greater. One need not disguise the confusion. With skill it can be integrated into the whole. It may be that the poem emerges from a much larger body of material. Here the skill of the facilitator is in perceiving a common thread of coherence within a mass of perseveration. It offers reassurance to the participant when something of value is rescued in this way. Here is an example of the end-product of such a process, a poem by Ann Boyd on the subject of language itself:


It’s amazing what you can get in.
I read a lot about it myself.

Well, from what I can remember.
From being a small child, as I got older,

started collecting them.. Oh well
you’re a good judge for it, I’m sure.

Always look out for people who’ve got
a little something different.

Of course, people have borrowed
from me for quite a while now

so not got everything here now.

There are, of course, issues arising from this work, such as who does a poem belong to? Though it consists of the words of the person (none of these have been added to) it has been shaped by another. It is surely best thought as a collaboration, where the facilitator has succeeded in maintaining the authenticity of the original utterance.
Another issue is that of confidentiality. It is important if work is to be shared that permission is granted. This can usually be obtained verbally and in writing, but conditions may change and a situation can arise in which doubts creep in as to whether the agreement still obtains. This applies to other art-forms as well, but somehow where words are concerned there is an added responsibility for the practitioner. John puts an emphasis on sharing because work of this kind has the potential for challenging the stigma which is still rife in the area of dementia.
These, and many other characteristics of writing with individuals, are considered in depth by the Australian Trisha Kotai-Ewers in Listen to the Talk of Us: People with Dementia Speak Out, the only full-length study so far published on the therapeutic aspects of the work.
One significant characteristic is the contribution that natural speech can make to the future of poetry. Peter Elbow in his groundbreaking book Vernacular Eloquence speaks of the qualities which have been overlooked in the rush to literacy: a directness of language and feeling which is to be treasured. The poetry of people with dementia is truly ‘telling it like it is’ and accomplishing a quiet revolution in the process.
The poem ‘It Can Be Done’ is from The Elephant in the Room, Cambridgeshire Libraries. Copies of the book can be obtained free from them.
The poem ‘Watching Grandmother Dress’ is from Bee’s Knees and Pickled Onions, published by The Courtyard Centre for the Arts, Hereford. Copies are available for a small charge.
‘Gabriel’ and ‘The Word Collector’ are from a forthcoming selection from the same source.
Trisha Kotai Ewers’s book Listen to the Talk of Us: People with Dementia Speak Out is published by Alzheimer’s Western Australia.
Peter Elbow’s book Vernacular Eloquence: What Speech Can Bring to Writing is published by Oxford University Press.