Soon after, the full reality of what was unfolding hit Jo Byrne.

Tricia had been hungry and ventured off to get something to eat. She had been gone an hour within Ballarat Health Services Base Hospital when Jo received a phone call from her mum who was lost and did not know where she was, or how to get back to the maternity ward.

Jo left two-day-old Harriet in the care of a midwife to find her mum, explaining her mum had early onset dementia.

"In that moment, I realised my mother was never going to look after my children and I wouldn't have someone to give me advice like my mum. I have a wonderful mother-in-law and I have sisters, but it's not quite mum," Jo said.

"She would've been a wonderful grandmother to my children, just like she had been a wonderful grandmother to her other grandchildren. I'm sure there would have been lots of McDonald's and coffee dates and mum giving them presents.

"I really grieve for that.

"People would say to me, 'oh, you're mum will be able to look after your baby when you go back to work', but I would say, "Mum's had five children and she's had enough'. I know that was me protecting her. I would love the stigma to change so I could say, 'no, Mum's got dementia', and I would rather people say, 'I'm sorry to hear that'."

Jo shares her story as Dementia Awareness Month comes to a close.

A new Australian Institute of Health and Welfare Report estimates 386,200 Australians are living with dementia. This is expected to double in about 30 years.

Dementia is an umbrella term for a large number of conditions that impair brain function, according to AIHW, and was the second-leading cause of death in Australia behind coronary heart disease.

The report shows about two-thirds of people living with dementia are female and, while dementia is often typecast an older person's disease, about 27,800 Australians with dementia are less than 65 years old.

Tricia was in her early 60s when her children started to notice signs that initially medical experts dismissed as anxiety and depression.

Jo shares their story for those who, like her, found themselves in their early 30s trying to care for a parent and not understanding what was going on.

She wants people to know they were not alone because for Jo, Tricia and their family, dementia took them completely by surprise.

Tricia was a stunning beauty growing up in Geelong. She would pay 30 cents to be sprayed with olive oil for a tan at Eastern Beach and went on to be crowned Miss Barwon Heads.

A hairdresser by trade, Tricia had amazing skin and was always well dressed. She could read coming fashion trends and could rock a pair of stilettos in a way that her daughters envied.

When Jo, the youngest of five siblings, was getting married in 2014 she found it strange her mum struggled to find a dress. Tricia usually knew exactly what to do and it was unlike her preparations for wedding days of Jo's siblings.

A year later, Jo accompanied her mum on a trip to New York City where Jo's brother Tom lived with his wife. Tricia was a well-travelled woman, she had been to the United States twice before, but struggled with the concept of currency conversion and a travel money card.

Tricia got Jo to fill out her boarding pass, a sign Jo found strange given she had dyslexia and her mum had always been the one to double-check her writing right the way through school and her university degrees.

Jo said her beautiful mother could not figure out how to use turnstiles in the New York subway and came under pressure from brash, bustling New Yorkers.

"I sat down with my brother Mike probably six months after that and thought, that's not anxiety," Jo said.

"I was very aware something was not right and I was masking her ability; I didn't want her to be embarrassed, I would drive her places and help pick out her clothing.

"It's so hard losing a best friend. She is here and she is wonderful but it's hard when mum is not interacting in the same ways and doesn't do the same things."

Jo's brothers live in Melbourne and her sisters are both interstate. While Jo said her mum never played favourites, they spent the most time together. Growing up, Jo had been a lot younger than her siblings and her childhood had been mostly "Mum and I against the world".

Tricia was later diagnosed with frontotemporal dementia, which can affect behaviour, language and movement.

Typically genetic, none of Tricia's siblings show any signs of the disease. Their mum lived to be 101 years old without dementia.

In 2018, Tricia moved into Mercy Place. Her family could no longer be confident she was safe living at home even with integrated living support.

Jo said it was hard to find a care home for her mum, finding many lovely but with residents generally 20 years older.

In Mercy Place, her family met long-time dementia champion Edie Mayhew and others with early onset dementia. There was a dog at the front door, a kitchen table to sit down for a coffee and movies and treats for children.

"It was a strange, surreal day. I wanted it to be perfect, I wanted her to be safe and I found it was like a weight came off her shoulders," Jo said. "I realised she'll have friends there. She didn't have to hide anymore and she didn't have to pretend."

While Jo felt loss, she felt she had gained a bigger family such as the interest in her pregnancy with baby Rupert.

Jo said Tricia's condition had deteriorated in the past year. Tricia, now aged 70, was no longer walking. She could not talk on the phone.

Lockdowns and border closures had prevented Jo and her siblings from spending time with their mum. But they know she is safe.

Jo can hardly wait for the moment when she can get back into Mercy Place to see Tricia and later when Harriet and Rupert will be able to run in, give her a hug and play.

It might not be the grandmother experience Jo had dreamed for her children, but there was still love and it was just different.

"Dementia is unfair. It is taking away a beautiful mind," Jo said. "But we need to embrace that difference."

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