People with dementia pen poem to challenge social myths and share festive cheer this Christmas with unique animation

People with dementia have penned a special Christmas poem to tackle the issue of isolation facing those living with the condition - especially during the festive season.

Alzheimer’s Society has turned the heartfelt words into a short animation designed to challenge misunderstanding and give people with dementia a platform to show how they can still be meaningfully included in festivities.
 
Their Christmas message shares in a very personal yet powerful way some of the ups and downs they experience. Members of the Ashford Dementia Peer Support Group, Kent, turn the spotlight on the very real difficulties that they can face at Christmastime: from the noise and confusion of parties, to feelings of exclusion during the festive preparations. 
 
The animated Christmas poem is unique because it is a Christmas message from a group of people who have dementia - with a clear message about equality and inclusion.

Tracey, a member of Ashford’s Dementia Peer Support Group who contributed to the poem, said:

'I hope people take away the message not to mollycoddle their family members - not to mollycoddle the person with dementia, just let them get on with and do what they always do because that’s the most important thing.

'We are still the same person, we haven’t changed and it doesn’t change us to have dementia. I hate being pitied.

'Your brain is like Paddington station because your brain is so active - we do get tired more quickly and we do have to be kind, be kind to ourselves and our family members have to be understanding towards us.

'Have patience and allow that sometimes people with dementia need a bit of quiet time, quietness to go to their room or quietness to go somewhere where not everything is too busy and exhausting.' 

Jeremy Hughes, CEO, Alzheimer’s Society said:

'This year our Christmas message is from the Ashford and Willesborough Dementia Support Group, in the form of an animated poem in their own words.

'Everyone who has been involved in making this special animation either lives with dementia or has a personal connection to it. 
 
'At Alzheimer’s Society, we’ve heard how Christmas can be an overwhelming experience, with many feeling stressed out, lonely and unable to join in the festivities.

'We hope this animated poem will help to challenge some of the misunderstandings and stigma that so many people with dementia deal with, helping people to see Christmas through their eyes.

'We hope that you will enjoy watching this and wish you all a happy festive season.'

The animation is voiced by actor Gary Fairhall. Gary is the primary carer for his mother who is living with dementia. 

'It’s slightly scary portraying the words of people living with dementia.

'I want to do the words justice and I want to find an understanding within the words because dementia affects us all - my mother has dementia, my aunt has dementia and it’s such a cruel disease, that we all fight together.

'We will conquer it but it will affect all of us.'

As part of the poem, Ashford’s Dementia Peer Support Group wrote ‘sometimes if you help me you can disable me more than the illness’. As the festive season becomes chaotic it is important that we try and make everyone feel included.

Alzheimer’s Society also asked families living with dementia across the UK to share their experiences and advice for creating a dementia-friendly Christmas and how to make sure it’s a happy time for all - because there’s no better time to unite against dementia than Christmas.

To watch the animation and for more advice and ideas on having a dementia friendly Christmas visit www.alzheimers.org.uk/christmas

The poem 

Some sad news this year.
I have dementia.
I’m being positive.
but I hope it’s slow.
I’m looking forward to the festivities but
I’d like you to know:
All the anticipation, the dos, and the sparkle
bangs, bells and chaos, hard work and sprouts
… feels like …
Paddington station
Woosh…. 
Friends pass me by 
‘Don't leave me out!’ 
Smiles, without seeing,
pretending everything’s ok
Wait!
I’m lost
Like to hideaway
the Grandchildren
all the names
It’s not the love bit that’s the problem, 
it’s remembering what they’re called 
I was the one everyone came to
Putting up shelves, doing magic tricks
Now you say ‘Don't you worry yourself’
As if you no longer trust me
And there’s a little voice in my head says ‘Bout right’
But I want to, need to, feel of use…
Sometimes if you help me you can disable me more than the illness
 
So…
There’s no change but it’s all change
And another year ahead.
It may be a bit foggy but there is potential!
Don't pity me, stroke me, make a mess of my hair
Don't want it to be over – yet

Further reading