Dementia can cause a lot of changes in your life – including how you celebrate Christmas. Alzheimer’s Society wanted to hear from people with dementia to find out how they experienced the festive season.

The members of Ashford Dementia Support Group got together to talk about 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.

Using their words, they’ve created a short animated poem to get that vital message across.

Christmas can be a challenging time for people affected by dementia. There can be a lot of pressure to have a wonderful time, which can cause guilt and sadness for carers. The breaking of routines during the festive period can also be confusing or distressing for people with dementia.

Alzheimer’s Society asked some of their supporters to let them know how Christmas has changed for them since they were affected by dementia. 

Changes to routine

Although Christmas can be a welcome break to some people, to others it can feel like a confusing break in routine.

Care homes can change their staff schedule, usual services may not be open, and family and friends might not be as available as usual. This can all be distressing for people affected by dementia.

Advice for dealing with a change in routine:

  • Try and keep things as close to the usual routine as usual, and plan ahead for any changes, asking friends or neighbours for help.
  • If the person with dementia is taking any medication, ensure that they have enough to get through the festive period. Remember that getting repeat prescriptions may be difficult during public holidays.
  • If the house becomes very busy on Christmas day, it may be helpful to have a quiet area for the person.

Karen, a carer from the North West says:

‘My sister got very confused in the Christmas period, due to a number of reasons, the fact that it becomes dark during the winter early made it impossible for her to distinguish between day and night leading her to be awake at night. Routine changes too can be very disruptive ie day centres and her Forget me nots club, are not working during the Christmas period. This leads to her being very depressed and disoriented and she actually took herself of without warm clothing and had walked 7 miles when she was found’

Memories and traditions

Memories can be bittersweet when living with dementia. Some traditions won’t be possible anymore. It can be helpful to look at old photos and videos to bring back the past, as well as involving the person with dementia with some of their favourite activities.

How to keep traditions and memories alive for people with dementia

  • Use a range of options to evoke festive memories – e.g. ‘Christmas’ scented candles, traditional songs (perhaps played on a record player), and themed materials like tinsel / Christmas stocking fabric.
  • Use videos as well as photos of past festivities if you have these. Perhaps ask the person with dementia about their happy Christmas memories.
  • Don’t insist on following traditions that are no longer appropriate. Let the person with dementia be your guide

Ann from South East England says:

‘Before diagnosis and during first Christmas after diagnosis it is difficult to know what can still be shared. Many previously shared tasks of preparation are no longer possible to share. This can lead to enormous frustration.

The secret is to hold onto the most treasured family traditions of the occasion whilst simplifying the process. Do encourage shared participation in tasks and celebrations but be aware that lowered expectations are the order of the day.

Keep the fun of the occasion and let some of the detail go.’

Chris from the West Midlands says:

‘Using past photos and videos to recall the festival and perhaps choose some activity from them to repeat that they may be able to be involved in. Playing carols from CDs that are part of family history for that festival and encouraging them to sing along. Playing films that have been traditionally watched in the past. If possible take walks that may have been part of your family tradition at that time of year.’

Christmas food and drink

For many people this is a special part of Christmas, but dementia can make the simple acts of cooking and eating more difficult. The person with dementia may be used to cooking, but no longer able to take on that responsibility. For people in the later stages of dementia, eating and drinking can be challenging.

How to make the Christmas meal easier

  • If the person with dementia wants to continue cooking, find a way to keep them involved in the kitchen with someone else there to help.
  • Don’t worry too much about timings – food can always be heated up for later. Keep an eye on the person with dementia to see if they seem tired or distressed.
  • Avoid having lots of different patterns and decorations at the dinner table. It is a good idea to use a plain coloured tablecloth with plates of a different colour to create a contrast between them
  • Think about the size of the meal. Although many people eat a lot on special occasions, a very full plate can be quite daunting for someone who has difficulties eating

Helen from East Anglia says:

‘When my Mother was alive food preparation and timing and sequence of cooking etc. became hard. An adult had to be ‘helping’ so as to ensure outcome. She would be agitated leading up to and over Christmas and then after the period would say ‘and that was that then’.

In the last few years it was predictable so we developed strategies to help her ie writing lists for present buying, food shopping and cooking. Always trying to ensure she did not feel supervised.’

Lesley from Surrey says:

‘We found that eating early and not having a three course meal so that it did not take too long was helpful. It was also good to keep up traditions like sharing the cracker jokes.

Also, be mindful of the signs that the person is getting tired; my mother used to move her chair and try to get up, so we knew she was ready to leave although she couldn’t say so.’

Christmas in a care home

When your loved one is in a care home, it can mean some adjustments to Christmas. They may not be aware of the time of year, or they may feel distressed at changes to their routine.

Many people mentioned the need to do whatever suits both you and the person with dementia. If you don’t feel like being festive, there’s no need to force yourself. It can be a difficult time of year for carers and it’s important to look after yourself as well as your loved one.

Advice for Christmas when your loved one is in a care home:

  • Talk to the staff to see what their plans are over the festive period, and plan in advance for how this may disrupt regular routines.
  • It can be hard if the person is in a care home and people may feel guilty, but it’s important to focus on what they need and look for ways to engage with the person e.g. going to visit on Christmas day.
  • Fill out a ‘This is me’ form, so the care home staff know how the person with dementia likes to celebrate Christmas

Alan from Staffordshire says:

‘I used to attend a care home on Christmas Day as Father Christmas – all dressed up for the occasion. Sadly in latter years because of my caring role I had to give that up. But I have a lovely memory of visiting people with dementia some bed bound where few could get any reaction. When I arrived at their bedside I had an instant smile and full attention.

The staff were amazed at how this happened. But, everyone has a mind picture of Father Christmas and the proof was in the reception I got. I could only say that I was overjoyed.’

An Alzheimer’s Society supporter says:

‘My dad had to move into a care home for the first time, the week before last Christmas. He then had a fall on Christmas night and ended up in hospital for 6 weeks. The fact it was Christmas made an upsetting time much worse.