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 meaning fully 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 Christmas time: from the noise and confusion of parties, to feelings of exclusion during the festive preparations.
Christmas is an exciting and joyous occasion for many, but it can be an extremely stressful and isolating time for people who are living with dementia, their families and carers. The reality is there are 850,000 people living with dementia in the UK meaning tens of thousands of families will be preparing for a Christmas with someone affected by the condition and many will be living alone.
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 ananimated 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.
Five ways of creating a dementia friendly Christmas.
Keep it simple
People with dementia can become unsettled in unfamiliar environments so keep it simple. Plan the day ahead, stick to routines as much as possible and be aware of the emotional triggers that may cause confusion or agitation.
Having lots of people in your home can become overwhelming to someone living with dementia. Excited guests, loud music and multiple conversations can be confusing, and may cause anxiety. Try introducing a ‘quiet room’ in your home where someone with dementia can retreat if things become a bit much.
“In my experience, it is important to keep the overall daily routine the same. However, periods of the day which are usually spent on going outside, could include activities like looking for holly to make a decoration later. Indoor activity time will depend on interests, but could include making cards or putting mincemeat into pastry cases. Small tasks are still valuable for self-esteem. “ Sue, WestMidlands
Everyone needs to feel valued
Everyone needs to feels valued and this doesn’t change when someone has dementia. Think about how someone with dementia used to contribute at Christmas time and find a way to help them do this. Hanging a bauble on a tree, writing Christmas cards together,setting the table or helping to prepare food are all small actions that can help a person with dementia feel included and give a sense of independence. Arts and crafts like making paper chains together with children in the family are both fun and easy to make and may encourage someone with dementia to recall activities from their childhood.
“Make sure that you remember to include people living with dementia and tell stories of the past and things they may remember. Be in their reality and where they are and help keep them involved with things they liked to do before their condition” Leanne, South Yorkshire
Slow and simple decorating
Decorations are a big part of Christmas,but can also be overwhelming for some people with dementia if introduced all at once. It can be confusing and distressing if furniture is moved around so that things are not where a person expects them. Rather than change things all at once, put up decorations gradually.
“From my own experience Christmas can be loud and busy and my mum, who had dementia, used to panic. At home make sure the build-up is gradual and slow. Put up the tree one day, then the decorations a few days later and so on. Once everything was up and decorated my mum would be fine but the build-up could be difficult.” Trudy,South East
With a bit of planning, Christmas shopping doesn’t have to be too stressful. Many families recommended creating a shortlist of gifts with pictures from online shops and asking someone with dementia to choose what they want to purchase their loved ones from this. Other ideas included shopping in the morning at garden centres. They usually have festive decorations but are quieter than other shops and often have cafes to relax in.
“When my mother was alive she would hide presents and never know where they were, which of course meant increased cost to replace them. In the last few years it was predictable so we developed strategies to help her such as writing lists for present buying, food shopping and cooking.We always tried to help her but make sure she did not feel supervised.” Helen, East Anglia
Embrace the Christmas Carols
Music is incredibly beneficial to people living with dementia, and Christmas carols are no exception. For people living with dementia, it can trigger some wonderful memories, help them communicate, improve their mood and leave them feeling good. Music can reach parts of the brain in ways other forms of communication cannot and it’s a great way for people with dementia to share their emotions.
When attending carol services, why not call to see if you can reserve some seats so you don’t have to get there early and wait in the cold. You can even ask if the lyrics or hymn sheets could be printed in a large font. After all, singing carols is a great way of bringing the family together and get into the Christmas spirit!
“Singing is always well received by people with dementia and therefore having a sing along of Christmas carols would be really useful. You could organise a family get-together or attending a carol concert, depending on whether the person with dementia can cope with crowds. If a person with dementia has young grandchildren, perhaps the little ones could be encouraged to entertain the grandparent by singing carols to the mor playing simple games.” Anna, West Sussex
To watch the animation click the video below:
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 …
Friends pass me by
‘Don’t leave me out!’
Smiles, without seeing,
pretending everything’s ok
Like to hideaway
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
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
For more advice and ideas on having a dementia friendly Christmas visit: https://www.alzheimers.org.uk/christmas