".. improving dementia care isn’t simply about better services. It’s about building stronger, more connected communities where nobody has to face the journey alone."
As families gathered over the festive season, experiences varied greatly for those caring for a loved one with dementia.
Some carers enjoyed precious moments of connection, watching grandparents light up in the presence of grandchildren. For others, the holidays brought confusion, anxiety and emotional distress, with familiar questions like, “Who are you?” becoming all too common.
For dementia advocate Peter Gooley, these mixed experiences reinforce an important message: preparation matters.
“We encouraged families to have a quiet room or an exit plan ready before holiday gatherings began,” Peter said. “If you can recognise the signs that someone is becoming overwhelmed, you can often prevent a distressing situation before it escalates.”
School Holidays Can Disrupt Routine
While Christmas may be over, the challenges don’t disappear. School holidays can significantly disrupt the routine that people living with dementia rely on.
Children suddenly fill the home with laughter, excitement and plenty of movement.
“They’re wonderful little tornadoes,” Peter laughed. “We all love that energy, but for someone with dementia it can be incredibly overwhelming.”
Maintaining familiar routines remains one of the most important ways to reduce anxiety. Even positive changes can become stressful when daily patterns are interrupted.
Turning Grandchildren into Care Warriors
Rather than shielding children from dementia, Peter believes school holidays provide a valuable opportunity to gently educate them.
“It’s about helping grandchildren understand what’s happening to their grandparent,” he explained. “We’re not taking away their childhood—we’re helping them become compassionate.”
He encourages families to teach children simple ways to interact calmly with their grandparents, helping them become what he affectionately calls “Care Warriors.”
The memories children create today may become priceless later, especially as dementia progresses.
“There may come a time when your grandparent forgets your name,” Peter said. “That’s heartbreaking. The more loving memories we create now, the greater the chance they’ll continue to recognise the relationship, even if they can’t remember the name.”
A Storytime Tradition Full of Compassion
Co-host Gail shared one of her family’s most treasured memories caring for her grandmother after a stroke.
To help calm the busy household, she encouraged her children to spend quiet time reading stories to their great-grandmother.
“When they were little, she used to read to them,” Gail recalled. “As they grew older, they read to her.”
Although her grandmother had lost the ability to speak, she remained deeply engaged with every story.
“When the kids used deep, growly voices, she’d frown exactly as the character would. When they read the happy parts, her whole face lit up.”
Peter believes those moments were about far more than reading.
“She was still teaching them,” he said. “She was teaching compassion. She was showing them that no matter your age or abilities, you can still become part of the story.”
Sunshine, Stories and Simple Daily Rituals
Gail also recommends building simple routines into each day.
During homeschooling, her children’s “Crunch and Sip” break became reading time with their great-grandmother outdoors.
The family would share fresh fruit, enjoy morning sunshine and read together.
“It’s amazing what a little sunshine and a good story can do,” she said.
Peter added that regular exposure to sunlight helps activate vitamin D, supporting bone health while also encouraging gentle outdoor activity.
Both Peter and Gail acknowledge one of the hardest lessons for carers is accepting that dementia continually changes.
“You have to find your new normal,” Gail said. “Stop grieving for what used to be and find happiness in what you have today.”
Peter agreed, noting that the “new normal” can change from week to week as the disease progresses.
He offered a powerful reminder to carers frustrated by repeated questions.
“If you’re wishing they’d stop asking the same question over and over, remember that one day they may no longer be able to ask at all, and you’ll wish they could.”
Understanding Behaviour Rather Than Fighting It
Peter encourages carers to look beyond difficult behaviours and instead ask what unmet need may be driving them.
People living with dementia often become deeply attached to their primary carer, who becomes their source of security.
“Their anxiety comes from uncertainty,” he explained. “If we can understand where they are emotionally, we’re much more likely to understand what they need.”
He also recommends resources such as Contented Dementia by Oliver James, which explores practical communication techniques to reduce anxiety and build reassurance.
Caring Should Never Be a Solo Journey
One of the strongest themes from the discussion was the importance of sharing the caring role.
Peter described a family where three daughters rotate caring responsibilities each day, allowing their parent to remain at home.
“Not every family has that support,” he acknowledged. “But when they do, it’s extraordinary.”
For carers without family nearby, Peter believes neighbours and local communities can make an enormous difference.
Too often, people living with dementia, and their carers, become isolated because friends feel unsure how to help.
“We need communities that understand dementia instead of avoiding it,” he said.
Could Australia Learn from the Netherlands?
The conversation finished with an inspiring idea from overseas.
Gail highlighted a Dutch program where university students receive free accommodation in aged care homes in exchange for spending time with residents.
Students help older people learn technology, connect with family through video calls and simply provide companionship.
Peter believes Australia should seriously consider similar initiatives.
“If it works there, why can’t it work here?” he asked.
“It’s logical. We need more innovative ways to bring generations together, reduce loneliness and support carers.”
For Peter, improving dementia care isn’t simply about better services. It’s about building stronger, more connected communities where nobody has to face the journey alone.
Resources that can help
Several organisations provide reliable, evidence-based information about dementia and supporting people living with the condition:
- University of Tasmania – Understanding Dementia (free online course): https://mooc.utas.edu.au/course/20281
- University of Tasmania – Understanding Parkinson's (free online course): https://mooc.utas.edu.au/course/20392
- Dementia Australia – education, resources and support: https://www.dementia.org.au
- Positive Approach to Care (Teepa Snow) – practical dementia care strategies: https://www.youtube.com/@teepasnowvideos
- Contented Dementia by Oliver James: https://www.penguin.com.au/books/contented-dementia-9780091927794 (publisher information)
- Understanding anticipatory grief:
https://whatsyourgrief.com/anticipatory-grief/
