It was a bit of a lonely journey at times

When her mum was diagnosed with frontotemporal dementia, Tamara became the one tracking down help for the whole family.  

Now a Dementia Advocate, she’s helping other families know where to look.

Tamara’s mum used to ring each of her three daughters every day.

Then the calls stopped.

She had always been a calm person but she became frustrated and angry over little things.

She grew confused during activities she had always loved.
Her spelling slipped in text messages and birthday cards.
Her symptoms first presented as depression and anxiety.

She was later diagnosed with aphasia and then frontotemporal dementia.

“I just felt like we were really in the dark a lot,” Tamara said.

“A lot of our family and friends were telling us there was nothing wrong with Mum and that we were all imagining it. It was a bit of a lonely journey at times.”

Searching for answers

The family saw several specialists during a long diagnosis process.

With no one referring the family to Dementia Australia, Tamara went looking for help herself.

She enrolled in Dementia Australia courses to understand more about what her mum was going through.

The website also gave her answers the family needed, including the critical insight that frontotemporal dementia is progressive and terminal.

“The doctors never told us that,” she said.

“If I knew I only had that much time with Mum, we would have made an effort to spend a lot more time with her.”

Supporting the primary carer

For two years throughout the COVID lockdowns, Tamara’s dad cared for her mum at home, including all her showering and toileting.

Tamara was closely involved in supporting them both.

The family kept looking for ways to support him but her dad found it hard to accept help.

Tamara said he wasn’t alone in that.

“He was not very good at asking for help or counselling,” Tamara said. “That’s not how he grew up.”

About seven months before her mum died, Tamara took a week off work to give her dad a break. It was exhausting.

It also gave her a new understanding of what he was doing every day.

“I would tell someone who was me, if their parent was caring for their other parent, to give them respite and walk in their shoes, even if for a few days,” she said. “Then you would understand their journey more.”

Through it all, the family found joy where they could, from painting in the sun to coffee at the beach. Humour helped too.

“We learned to laugh with Mum,” Tamara said. “I think that’s really important.”

Even when her mum forgot their names, she knew her daughters were people she loved.

“She’d tell us that she loved us,” Tamara said. “If I arrived, she’d get all excited that I was there.”

“They understood my journey”

Tamara made sure she had support of her own too. As her mum declined rapidly, she reached out to Dementia Australia for counselling.

Part way through those sessions, in 2021, her mum died. She was just 76.

Her mum had moved into residential care only eight weeks earlier. The family had struggled to get a palliative care assessment, which was finally booked for the day after she died.

“Palliative care assessments serve a really important purpose because they also prepare the people around them,” Tamara said.

Tamara described dementia as a long and complex grief.

“You’ve sort of mentally lost your mum years ago,” she said. “Then you’ve got to physically lose her.”

Tamara was offered six more sessions, this time for grief counselling.

“It was really invaluable to me because they understood my journey,” she said. “I was just really grateful to Dementia Australia.”

Support for everyone in the family

Having to find that support on her own is part of why Tamara joined the Dementia Advocates Program.

She also wanted to give back to the organisation that had supported her and to help more people understand dementia.

“I wanted to give back,” she said. “I think a lot of people don’t know about dementia and understand it.”

Today, Tamara is also a Peer Leader within the Connecting Peers program. Having volunteered for the past two years, she is passionate about helping others connect with support earlier and raising awareness of the program, alongside the counselling and other services available through Dementia Australia.

Sharing her story helps other families know what support is out there.

It’s also a reminder of how much it matters when GPs and other health professionals connect people with that support early.

Her advice was to get as much support as possible, as early as possible. That goes for everyone in the family, not just the primary carer.

“Get as much support as you can through Dementia Australia and Carer Gateway,” she said. “Register for My Aged Care really early. Be in the system.”

“For the primary carer and all the children, seeking your own support and counselling early is really important.”

Looking for support?

No one should face dementia alone. Whether you’re caring for someone or supporting a carer, Dementia Australia can connect you with personalised, practical and emotional support that changes as your needs do.

Not sure where to start? 

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. Our advisers can also point you to other services, like the Australian Government’s Carer Gateway and My Aged Care.

You can also explore support options on our website.

Like Tamara, you can share your experience to help others feel less alone. Find out more about becoming a Dementia Advocate.

Get support today.

Dementia, Australia. We’re changing it.