I’m still me – dementia doesn’t define me
Gwenda has never fit neatly into any box.
When she received a diagnosis of behavioural variant frontotemporal dementia in 2012, she approached her new reality in the only way she knew how – on her own terms.
More than a decade on, the proud Palawa woman, passionate Dementia Australia Dementia Advocate and former Aged Care Council of Elders member says she is living some of the best years of her life.
Living with dementia has meant real change for Gwenda, who shares her experience in the Still Me: Understanding identity after a dementia diagnosis episode of the Hold the Moment podcast.
She feels joy but rarely laughs, she had to relearn to sign her name and even her sense of smell has changed.
But what hasn't changed is her refusal to be defined by other people's assumptions.
"To assume that somebody living with dementia isn't meeting the norms is about you not getting to know them," Gwenda said.
She talks openly about the often-unspoken realities of living with dementia, from the grief of losing her driver's licence to navigating the aged care system on her own terms.
Gwenda is a passionate advocate for culturally-safe dementia diagnosis and care in First Nations communities, where dementia is estimated to be three to five times more prevalent than among non-Indigenous Australians.
"With Aboriginal people, dementia is often mistaken as mental health or being grog-sick," she said. "We've got to start asking the questions – ‘Could it be something else? Could it be dementia?’."
Her message is one of curiosity and compassion, and a reminder that no two experiences of dementia are the same.
"You see one person living with dementia, you see one person," she said.
For Gwenda, her diagnosis was never going to be the end of her story.
It became the beginning of a new chapter of advocacy, connection and purpose.
"By crikey, if I've got it, I'm going to make it work," she said.
"I'm going to use it to make life better for somebody else."
Listen to Gwenda's story
Gwenda shares her experience in Still Me: Understanding identity after a dementia diagnosis, an episode of Hold the Moment, Dementia Australia's podcast.
Listen wherever you get your podcasts or on the Dementia Australia website.
Looking for support?
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.
The Dementia Australia Library provides free access to resources about dementia for everyone, including resources for Aboriginal and Torres Strait Islander peoples.
