Dementia is difficult disease to deal with at any time of year, but the festive season can often present some particularly tough challenges - for patients and carers alike.
Of course, Christmas can be a tricky period even for those of us who don’t face these kinds of health issues. With seemingly endless lists of presents to buy, social commitments aplenty, events and dinners to plan, and not to mention an overload of booze and bad food, it can undoubtedly be overwhelming.
But for those with dementia, it can often be even more confusing.
Gemma Jolly, from the Alzheimer’s Society, explained that the disruption of routine around the festive season can cause distress for dementia patients.
She explained, “It [Christmas] leads to a change in their routines; and routine can be really important for people with dementia. It’s also very busy, with lots going on, which can be overwhelming and disorientating.
“A person with dementia may not understand why things change at Christmas time, or may not remember that it’s normal for things to change (e.g. shop opening times, layouts of shops, house decorations).”
Plus, it can be a time filled with the weight of expectations, of fun experiences and special moments. But it can be hard for someone with dementia to meet these expectations – which can be difficult for people to understand.
“Those supporting them may not understand that Christmas can be challenging, or that the person finds things more difficult as a result of their dementia, so they expect them to act as they would have done previously which may not be possible” Gemma explained.
Alongside the bewilderment at all the changes Christmas brings, there’s also the sense of isolation that can be pervasive at this time of year – not only people with dementia, but for their careers too. Gemma told w&h, “For carers, they often have the stress of Christmas generally, and then a sense of responsibility for the person with dementia and trying to keep them involved, safe and happy – this can be difficult.
“Changes to the person’s routines may mean they start to behave differently and this can be hard for carers to manage. It can also be exhausting and isolating (as caring is in general).”
So what can we do to help support our loved ones tackling dementia at Christmas?
Be sure to be flexible with your Christmas plans and arrangements
If you’re used to putting up the Christmas tree on the 12th, heading to the Christmas market on Christmas Eve, and attending mass at 9am sharp on Christmas Day, it might be tricky to face that things might not be able to run like clockwork if a loved one is living with dementia.
Dementia can be unpredictable, and releasing the pressure to stick to firm demands on your time and rigid schedules can help everyone to feel a bit more relaxed.
Gemma said, “It’s about being prepared to be flexible and adaptable, not so much that the person may be upset (although they may) but the festivities will work best if they meet the needs and abilities of the person with dementia. If you try to force them to follow a pre-set plan and it’s not working it may be distressing and upsetting for everyone.”
Some simple ways to keep everything relaxed could be as easy as ensuring the day takes place in the person with dementia’s home environment. “Whilst it can seem like a good idea to have the person over for Christmas, it can be really disorientating and confusing for them, and they may struggle to adapt to the new environment.
“It may be better for the family to go to the person’s (although this will depend on the person)”, Gemma revealed to w&h.
It can also be helpful to work to their schedule – but accept that if things change, it’s not the end of the world. The Alzheimer’s Society explained that if, for example, you were planning the big Christmas meal in the evening, but the person with dementia usually eats their biggest meal at midday, it could be helpful to adapt to their timings. Equally, if they don’t want to eat much at midday either, don’t make a big deal out of it.
Put your Christmas decorations up slowly, rather than all at once
Dealing with dementia at Christmas may mean you can’t do things in the same way you always have.
Big changes at Christmas, particularly to the home, can be potentially troubling for a dementia patient. Which is why the Alzheimer’s Society recommend decorating your home a bit at a time, rather than all in one evening – something which will change the appearance of your home fairly drastically.
Gemma told us, “Changes to the environment can be overwhelming, so if you put all the decorations up at once it can be too much for some people with dementia. Putting them up gradually gives the person time to get used to them.”
However, it’s key to take into account the person with dementia – on the other hand, Christmas decorations may be a reassuring, fun way of interacting with family and the festive season. Take your lead from them, and act accordingly.
Share older, familiar memories of Christmases gone by
Often for those with dementia, older memories are much clearer and easily retrievable than more recent memories.
And Gemma has shared that the experience of sharing those old memories can be overwhelmingly positive for people with dementia, igniting meaningful engagement with loved ones and boosting their wellbeing in general.
Bring out an old family photo album of a past Christmas, or play an old song/album/film they used to love. Entertainment like this can be particularly positive, sparking a feeling of joy within them without the need for explanation.
The Alzheimer’s Society told us, “It’s about using knowledge of the person to engage with them and use things they enjoy or have meaning for them.
“Reminiscence can improve quality of life, communication, cognition and mood in some people with dementia. However, it needs to be tailored to the individual and based on what they like/enjoy.”
But, Gemma warns, be mindful of the fact that “some memories may be distressing” for your loved one with dementia. Everyone with dementia is different, and it’s important to be mindful that certain things or people may trigger negative emotions.
Create a quiet room
Christmas, with the songs, food, TV, people and presents, can be a lot to handle, at the best of times. As such, it can be especially tough for people with dementia.
The Alzheimer’s Society has said that creating a ‘quiet room’ can be really helpful – a place where they can retreat to if things get too much. Allow them to decide when they might like to go there, or when they might like to join in again – let it be a safe haven for them.
Help Alzheimer’s Society continue to provide vital support to people affected by dementia this Christmas, and all year-round by donating at alzheimers.org.uk/christmas-gift.
Alzheimer’s Society’s Dementia Helpline and Dementia Talking Point online community are there to help at what can often be a difficult and lonely time for people affected by dementia.