Finding hope in the face of childhood dementia

A dementia diagnosis can feel like it turns life upside down.

For some families, that diagnosis comes far earlier than anyone might expect. It comes during childhood.

Childhood dementia refers to more than 100 rare genetic conditions that cause progressive brain deterioration in children.

For families, the journey is often long and uncertain with years of searching for answers.

In the Childhood dementia episode of the Hold the Moment podcast, we hear from two families navigating through this.

“My world was smashed”

For Rachel and Eli, the journey to diagnosis for their daughter Hannah was long and confusing.

What began as subtle changes in the 10-year-old including plateauing at school then seizures, led to an MRI.

“That's when they saw the brain atrophy,” Rachel shares.

“10-year-old children do not have brain atrophy. So, that was then the path, the path to genetic testing and finally the diagnosis of childhood dementia.”

Following the diagnosis Rachel describes a wave of grief, shock and uncertainty.

“I was there in body but not in mind. My world was smashed.”

Rachel and partner Eli talk openly about the “dual reality” they now live in, where moments of joy are always tinged with loss.

They are also aware of the impact on Hannah’s younger brother Benjamin who is growing up with questions and responsibilities far beyond his years.

“[Benji is] dealing with a lot of the bigger picture questions that we shouldn't be dealing with until we're adults,” Eli says.

“He said, ‘Dad, what happens when you die?’ and we don't shy away from those conversations but it's hard to not try to soften that particular blow as a parent.”

Finding moments of hope

The family say they try not to be consumed by grief by finding moments to lift them, to make them laugh and to make sure their children feel loved.

“The hope is finding those moments that when things do happen and things get very bleak, they're the little candle in the darkness,” Eli shares.

“Hope is looking for them because they're not going to show up if you don't look for them.”

Turning experience into action

Megan Maack’s own experience of having two children living with childhood dementia led her to start organisations to help fund research and provide community for other families in a similar situation.

She says families are often told there is little to be done.

For Megan, that wasn’t enough.

First, she founded the Sanfilippo Children’s Foundation, which helped fund research into the rare disorder her children were diagnosed with.

Then she established the Childhood Dementia Initiative to connect families and advocate for change.

“It’s not about false promises,” Megan says.

“It’s about connection, understanding and making sure no family faces childhood dementia alone.”

She shares that the experience is quite unique for a family of a child diagnosed with dementia.

“This has occurred to a family in the prime of their life,” she says.

“Parents who are either early or mid in their careers.”

She says every aspect of family dynamic, including psychological, financial and career aspects, are impacted.

“I used to say, when my babies were babies - this too shall pass. But ‘this too shall pass’ is getting a bit tired after 16 years. I don't actually have language to describe the roller coaster.”

About the podcast

Dementia Australia's Hold the Moment podcast is full of stories about life after a dementia diagnosis.

It is co-hosted by Jim Rogers, who lives with young onset dementia, and Dementia Australia Ambassador and journalist Hamish Macdonald, whose father lived with Lewy body dementia and Parkinson's.

The podcast is available on podcast apps, the Dementia Australia website and Dementia Australia's YouTube channel.

Looking for support?

The Hold the Moment podcast is just one of the ways Dementia Australia supports people impacted by dementia.

If you would like support or advice about living with dementia, contact the National Dementia Helpline on 1800 100 500 or via live chat, available 24 hours a day, seven days a week, 365 days a year.

For information or support with childhood dementia, please contact the Childhood Dementia Initiative.