New Alzheimers Australia website helps children close to someone with dementia

Izzy, 12, sees her grandma every Saturday. 

She gets Joy, 77, a cup of tea and an Anzac biscuit while her grandma talks about her childhood in Edinburgh. Sometimes Joy breaks into song. Sometimes she questions her granddaughter: "Who are you?".  

But Izzy knows not to laugh, or tease her grandma. She just repeats her name; Izzy Bolt-Gardener. All of Joy's nine grandchildren know their grandma has Alzheimer's disease. 

Izzy Bolt-Gardener, 12, and her grandma Joy Bolt, 77, who has dementia. Photo: Jason South

"It's not really sad because right now she's happy and she's safe and not worried about anything. She's got people looking after her," says Izzy.  

Alzheimers Australia, the national body for people living with this disease, has launched a new website called 'Dementia in my Family' for children, like Izzy, who are close to someone with dementia. 

Dementia in My Family    Credit: Alzheimers Australia

Australia's ageing population means this is a growing issue for many families. The new online resource - filled with videos, cartoons, games and pictures for toddlers to young adults - explains simply how dementia affects the brain. And that it's okay to feel sad for a loved one.  

Izzy's mum, Christine Bolt, has worked at Alzheimers Australia for six years. It took some time for her and four siblings, and their father John Bolt (now deceased) to realise their mum's short-term memory had deteriorated. Joy was in her late-sixties. If felt too young. 

Joy would make four hair appointments in one day, or repeat stories. And then she went in for an unrelated surgery and took a long time to recover from anaesthesia.

Dementia in My Family    Credit: Alzheimers Australia

"The doctors asked us: 'When did she get diagnosed with dementia?'. She hadn't been. We made the mistake of thinking it was a normal part of ageing," says Christine. 

Things didn't change straight away. John was his wife's primary carer and they still lived in the family home. Izzy and the other grandchildren visited for fish-and-chip nights and sleepovers, dog walks at the park. Joy was a wizard at crochet and crossword puzzles; Izzy remembers poring over the puzzle book together.  

The whole family made sure its youngest members showed the oldest they were loved. But sometimes the noise and chatter got too much for Joy, and they would find her sitting in her room on her own.  

Dementia in My Family    Credit: Alzheimers Australia​

John died in 2014, and Joy eventually moved into a residential aged care facility in Melbourne's eastern suburbs. She has never spoken about her disease with her family. With hindsight, Christine wishes she had asked her mum how she felt.  

"She might have been embarrassed or scared, but she went through quite a few years when she would have had insight and I wish we had talked about it. I would encourage people to talk about things."

Joy remains part of family celebrations; she comes for an hour and seems comfortable, even though she no longer knows who people are.

Izzy says it's like one of the videos on the Dementia in My Family website, which draws comparisons between a family and a sports team. Everyone has a role in looking after a sick person. 

And Christine still loves her mum's hugs, and the smile that lights up her eyes. "I've learned there's always a new normal and to celebrate everything we can still do with her."

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