Carer Cathy Lillyman is excitedly preparing for another great Christmas Day with husband Leo, who lives with dementia, with their extended family gathering. But she admits there is no escaping the grief of what has changed.

“Putting up the Christmas tree alone, with Leo not seeming to notice, hammers home the sadness,” Cathy, 76, said.

Cathy and Leo’s large extended family of four children and most of their 13 grandchildren living in Australia will converge at the Lillyman home at Bathurst in the NSW Central West for the Christmas period.

Like many of the families of the 421,000 Australians living with dementia, Christmas traditions and expectations at the Lillyman home will be adapted, routines managed, and family helped to understand new circumstances.

Dementia Support Australia (DSA) Head of Dementia Professional Services Marie Alford said some planning ahead for Christmas – and events like Hanukah, Diwali, Ramadan and weddings – to accommodate the needs of a loved one living with dementia will mean a more enjoyable time for everyone.

Suggestions include keeping a quiet place for the person living with dementia to retreat to if needed to escape noise and busyness. “All of these are celebratory times are great for creating memories – and in doing this we should consider how we can best support people living with dementia,” Marie said.

Leo, 77, a former bank manager with Westpac, became a different person overnight after a brain injury from radiation therapy in late 2022. Previously a can-do and healthy man, Leo suffered from the treatment recommended to manage lung cancer. It began an agonising journey for Cathy to get help.

Earlier this year, doctors validated family fears the dementia would not get better. Cathy said: “He’s now a changed man. He’s not the same as he was. He looks the same but he’s not.” He receives support at home from a HammondCare home care team.

Married for 55 years, Cathy and Leo have always made Christmas a big deal. It reached a new level when the two took on a mixed business shop with attached house in Burrumbuttock, in the NSW Riverina, for 17 years. They took seriously leading the town with Christmas festiveness.

Leo earned a reputation for over-the-top decorations at their home, including endless festive lights and hand stencilled Santa figures and reindeer. “Everyone in town and nearby areas joined in.,” Cathy said.

Later the couple retired to Bathurst and Christmas as a big event continued, including the extravagant decorations. With his illness, Leo can’t continue that tradition now, but Cathy is doing what she can to ensure the grandchildren always remember great family Christmases with their Pa and Nanny.

Of all challenges, Cathy said the biggest is grandchildren feeling awkward. She fears their feeling are “walking on eggshells” to avoid upsetting Leo.

Other tips from DSA to make the most of Christmas include:

• Include photos, home videos and other favourite memorabilia to help with participating or following conversation and share memories.
• Remember music is an important inclusive and supportive element.
• Start meals in a traditional way, this might be saying grace or with reflections of the year so people with dementia know what is expected.
• Ensuring contrasting colours for food and crockery, smaller portions sizes, and having finger food options. Keep alcohol to minimum.
• Ensure family and friends are aware ahead of time they will be participating with someone living with dementia.

Marie said it was important that carers are remembered by offering to support the person living with dementia during mealtimes or other parts of the day.

Dementia Support Australia services are accessible 24/7 365 days a year on 1800 699 799 www.dementia.com.au, including through Christmas Day and the holiday season, to provide expert support where behaviours change.