Your presence, not your presents, is the most important thing to give a family member or friend with dementia this Christmas.
The bling of Christmas – houses adorned with colourful decorations and festive lights, crowded shops and streets full of noisy carol singers – can be very stressful for people with dementia. So, planning how you spend your time with a loved one with dementia in the built-up to and during the holiday period is very important.
Involving the family member with dementia in the preparations for Christmas is a good idea, according to Prof Dympna Casey, professor of nursing at National University of Ireland Galway. "If your mammy was really into baking, it's good to have her help make the Christmas cake. People who made Christmas cakes themselves will often remember their recipes so it gives them a chance to participate and reminisce," says Casey.
Similarly, if your mother or father with dementia was the one who put up the Christmas tree, hung the decorations or wrapped the presents, keeping him or her involved in this activity is appropriate. People with dementia hold on to their sensory and emotional memories the longest so these activities can stimulate conversations about Christmases in years gone by.
However, Christmas shopping can be a very stressful experience, especially if the shops are noisy and crowded. Joan Fitzpatrick is the dementia development officer with the Living Well with Dementia project in south Dublin. “All the bling in the shops with people rushing around is a nightmare for people with dementia. I think shop assistants and customers alike need to take notice of people who are struggling. When you see someone unable to find something in a supermarket where everything is changed around for Christmas or someone who can’t deal with their change at a checkout, see it a trigger to slow down a little. It’s the small things that make a big difference to people with dementia,” she says.
Fitzpatrick says that it’s also important to remember that people with dementia living alone might not feel part of the buzzed-up, jovial atmosphere around them. “They might say that they are fine but often they aren’t. |So keeping to routines like the times you visit or bring them shopping is important even if you’re busier,” says Fitzpatrick.
For Christmas Day, all experts agree that planning ahead and adjusting your expectations of the day is the best way to ensure everyone has as good a time as possible. Asking the person with dementia what he/she would like at each juncture is important. “Even people in the moderate stages of dementia can have moments of complete lucidity so it’s about having the patience to wait for their answers. Sometimes, people forget the person sitting in the chair while they are making plans for them,” says Prof Casey.
When it comes to Christmas presents and cards, practical presents such as toiletries or clothes that are easy to get on and off are the most suitable. And, while many people with dementia may be no longer able to write their own Christmas cards, receiving cards – particular ones with traditional images – offers them opportunities for conversation about times past and the people who sent them.
“Receiving Christmas cards triggers memories of childhood Christmases and allows people to still feel connected,” says Prof Casey. Sometimes, Christmas also triggers memories of people who have died, prompting people with dementia to ask questions about these people as if they are still living. Research by Prof Casey has found that so-called therapeutic lying is the best option in these situations. “Care givers struggle with the ethics of telling lies but our study showed that it is appropriate to tell a white lie or a fib if the intention is to reduce the stress of the person with dementia while preserving their dignity,” says Prof Casey.
If a parent with dementia is living with a son/daughter who hosts the Christmas Day celebrations, it is crucial to talk to other family members in advance. “It’s very important to tell family members coming home for Christmas what the parent is like now, especially if he/she is having difficulty recognising people and places,” says Prof Casey.
Caregivers also need to manage their own expectations and not feel that they have to stick with traditions built up over time. “It might be a good idea to have a Christmas brunch rather than a traditional Christmas dinner at 5pm or 7pm. If the person is coming out from a nursing home it’s important to do so a few times beforehand so they become familiar with this routine and are less likely to become distressed on Christmas Day and want to go back to the home, which can be upsetting and challenging for families,” says Prof Casey.
Big events can be overwhelming for people with dementia, says Samantha Taylor of the Alzheimer Society of Ireland. “Remembering people’s names, keeping up with the conversation as well as the noise levels can lead to sensory overload.”
In situations where there is a large group of people, it’s a good idea to allocate one person to stay beside the person with dementia to help out when needed. Staggering visitors and giving the person with dementia a quieter part of the house to retreat to is also important. “If you’re caring for someone with dementia, you will have less time and flexibility so you have to be realistic and say you can’t cook dinner for 25 people unless other family members and friends can help,” says Taylor.
Care givers also need to realise that they too may find Christmas difficult with the changed circumstances. “They might feel emotional and need to build in rest time rather than feel pressure to have things always as they were,” says Taylor.
When a family member with dementia lives in a nursing home, find out the routines of the nursing home before making your Christmas plans. Attending Christmas carols in the nursing home might be a good idea.
Ultimately, it’s all about spending time with the person. Taylor says, “It’s your presence that counts. Smiling and being there in a positive way. If the person with dementia is tired and overwhelmed on the day, don’t feel pressurised into prolonging the visit. Maybe, you’ll have a better visit the next time.”