Many hundreds of thousands of people with dementia continue to be voiceless, alone, isolated. The very elderly and frail people who live with dementia and those who care for them continue to need advocation on their behalf. There is still much to do. In the words of a person I met recently 'I'm old and unimportant'. Professor Graham Stokes suggested that the difficulty is dementia attracts the stigma of mental illness and many who live with it are subject also to ageism. This may well be true.
So on with the positive then, else the challenges above will remain unresolved....
Jeremy Hughes, leader and CEO of the Alzheimer's Society stated in his key note address that there must be efforts on the part of us all to work in collaboration. He also referenced the precarious position of Adult social care, stating that there must be more from Health Services too. These are welcome remarks, as this is recognition of what we in the NHS can offer people if we are supported to do so. The case for more specialist nurses was heard loudly at this congress, directly from people living with dementia and carers, from those nurses themselves, and from many of the speakers throughout the three days.
Keith Oliver, living with dementia reminded us all very aptly that tokenistic consulatation of people with dementia, to 'tick the box', is the biggest threat to the ability of health and care professionals to working truly alongisde people with dementia. The NHS can be a very hierarchical place, with a certain 'way of doing things'. We can work with people we support without insisting they come to the 'steering group', we can ask them directly what our care environments and services should look and feel like. We don't have to pass people from service to service. Yet we did hear lots of discussion around the fact that this is still happening, quite a lot of the time.
Larry Gardiner, living with dementia says 'Don't spend months worrying and arguing about what the memory problem is.....help me with the memory problem!! That's as pointless as trying to argue that a duck is not a duck' Common sense indeed! Larry's words struck me profoundly, we in the NHS are just a little bit silly sometimes....we don't mean to be, but the systems in which we operate render us less able to do things differently.
Larry Gardiner, second from left...speaking with colleagues on what we professionals can learn from people who live with dementia. It was a really well received session.
So back to working together then. We can do that. I work very much in partnership with local colleagues from the Alzheimer's society. I work with Admiral Nurses who work in a different trust. I work with Dementia Support Workers closely. I work with commissiomers and managers at varying levels. The key to this is respecting the hierarchy but not fearing it, and not being afraid to ask why we can't do things jointly.
Nationally, people like Jeremy Hughes are uniquely placed to advocate for joint working, by recongising the value of services like Admiral Nurses, by acknowledging no organisation or indiviudal is better than another. We all in the end share the same common aim of wanting to help people with dementia. As Larry Gardiner says, that's the great thing....and the problems come when we don't work well together.
On the final day there was a workshop around the use of poetry as a way of communicating and connecting. I'll be honest....I wondered if it might be a bit fluffy, quite nice but not really something that would really help, would it?
Words are powerful, poetry is rythmic, some words can trigger memories and feelings. Used in the right way, poetry is a really important form of self expression. Just before the congress started, an occupational therapist I have the pleasure of working with sent me a poem she had written. The words are those that came to her, as she was trying to place herself in the shoes of a person with dementia, so that she might do more to help.
The poem really moved me, and with her permission I share it here. The words remind us why it is so important to get it right for people living with dementia. The dementia congress was about the very same thing, and this poem seems a fitting way to conclude my own reflections.
Dementia
Song by Louise Argyrokastritis, Occupational Therapist
Can you spare the time
To listen to this song?
Not frown and turn away
If I get the words wrong.
They sometimes get lost
Between my brain and my tongue.
It wasn’t always like this
When I was young.
In your busy day
To step closer to me
Not just walk away.
A thought, a smile, a touch.
Understanding from you,
That means so much.
What it was like…
When thoughts were clear
And memories bright,
But now it’s like someone
Turned out the light.
It’s dark and frightening,
Can’t you see?
Trying to make sense
Of your reality.
With your eloquent speech
Meanings dance
Just out of reach,
And just when I think
I’ve got the gist,
They disappear back
Lost in the mist.
When you turn away
From my nightmarish world
That I live in today.
You’re scared of the future
That is to come.
I’m scared of the present
And who I’ve become.
To listen to me.
To feel someone cares
Means a lot, you see.
I may not remember
Your name or your face.
I’ll never run again
In your rat race.
To turn darkness to light.
A familiar song
That makes memories bright.
It won’t last forever.
It will fade away.
But help my journey
To be less grey.
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