“We knew something was wrong” – the path towards a dementia diagnosis

When Angela first noticed changes in her mum Maria’s behaviour, she considered various possible causes, although dementia wasn’t one of them.

“We knew there was something wrong for a number of years but we put it down to quirks of personality, menopause, anxiety and depression – even childhood trauma,” Angela said.

“My mum was a very shy, quiet, reserved woman and then her behaviours changed,” she said. “She was going out dancing at a club, which she would never have done before, and had no filter so would say whatever was top of mind.”

Almost a decade on from the onset of these changes, Maria was diagnosed with behavioural-variant frontotemporal dementia.

Unlike other more commonly recognised signs of dementia such as memory loss, frontotemporal dementia is characterised by changes in behaviour and personality, something that Angela said progressively became more pronounced in her mother.

Luckily Maria’s GP recognised the signs as possibly being frontotemporal dementia so referred her to a neurologist who made the official diagnosis.

Diagnosis – a relief and a shock

Angela was with her mother when Maria received the diagnosis, which was both a relief and a shock.

“At least we knew what we were dealing with – this is what it is and we can deal with it,” she said.

For Angela, whose life was already a delicate balancing act of juggling a full-time job along with raising a primary school-aged child and a teenager, the diagnosis brought a new level of complexity.

For a period she, her husband and two children moved in with her Mum and Dad (Agatino) but the strain of the caring role soon took a toll.

To complicate matters, her father had multiple health issues and was diagnosed with vascular dementia the year after her mother’s diagnosis.

Like in her mother’s case, her father’s diagnosis helped them to understand what was happening.

“I thought – ‘that explains a lot’ – because I was seeing some behavioural shifts that I thought weren’t my dad,” Angela said.

Challenges of caring

The years following her parents’ diagnoses were difficult, particularly as they coincided with the COVID-19 lockdowns, her sister’s cancer diagnosis and a friend’s death.

Angela’s advice for others in her situation is to learn more about the condition and to find support from others in a similar situation.

“It’s important to educate yourself on what to expect but I think just being kind to yourself and not to be afraid to ask for help is also key,” she said.

“I think I didn't ask for help early enough. I just kept going, going, going and thought it had to be me. I realised it didn't always have to be me.”

Find out more

To find out more about getting a diagnosis visit our Testing and diagnosis page.

You can also contact the National Dementia Helpline for free and confidential support, advice and expert information.

The Where to from here? episode of Dementia Australia’s podcast Hold the Moment explores what to do after being diagnosed with dementia.