While Christmas is an exciting and joyous occasion for many, it can also be a stressful and lonely time for people affected by dementia, their family and carers.
The stark reality is there are 850,000 people living with dementia in the UK, with more than 13,800 across Devon. With this in mind, tens of thousands of families will be preparing for a Christmas with someone affected by the condition and many will be living alone.
Alzheimer’s Society asked families living with dementia across the UK to share their experiences and advice for creating a dementia-friendly environment where everyone feels included this Christmas.
Five ways to unite against dementia this festive season:
1. Keep it simple
People with dementia can become unsettled in unfamiliar environments so keep things simple. Plan the day ahead, stick to familiar routines and be aware of the triggers that may cause confusion or agitation.
Having lots of people in your home at once can become overwhelming to someone living with dementia. Excited guests, loud music and multiple conversations can be confusing, and may cause anxiety. Try creating a ‘quiet room’ in your home where someone with dementia can retreat if they are finding things a bit much.
Above all at Christmas, think about what the person with dementia is feeling. Be prepared to adapt and be flexible, even if that means some of your usual ‘rituals’ get tweaked.
“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.
2. 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 can continue to contribute at Christmas time and find a way to help them do this. Hanging a bauble on the tree, writing Christmas cards together, setting the table or helping to prepare food are all small actions that can help a person with dementia be included and give them a sense of independence. Arts and crafts like making paper chains together with children in the family are both fun and easy, and may encourage someone with dementia to recall activities from their own 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.
3. Slow and gradual 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.
4. Christmas shopping
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.
“My mother 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.
5. Embrace the Christmas carols
Music is incredibly beneficial to people living with dementia, and Christmas carols are no exception. For people living with dementia, singing 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 that 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 attend 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 them or playing simple games,” Anna.
A Christmas poem
A group of 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:
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.
To watch the animation and for more advice and ideas on having a dementia-friendly Christmas visit www.alzheimers.org.uk/christmas