Veda Meneghetti and Lynda Henderson have long been advocates for dementia rights. Photo: Supplied.
For Veda Meneghetti, music was more than a passion — it was her voice.
But when words began to slip away, the rhythm guitarist and lead vocalist for iconic Aussie band The Party Girls found herself facing a new battle: Primary Progressive Aphasia (PPA), a rare form of dementia that results in a decline in language skills.
Instead of retreating, the Gerringong woman found a new stage for her voice – advocacy.
Now, her partner Lynda Henderson continues Veda’s mission, supporting others navigating the complex world of dementia care.
“She would have shown the first signs of dementia in her late 50s, and she was finally specifically diagnosed at 61,” Lynda said of Veda being classed as having young onset dementia.
“It meant the progressive loss of language and so that’s the same dementia that Bruce Willis has.
“It was her music that told her something was wrong.
“As her language abilities changed, she couldn’t write songs anymore.
“It really attacked her whole craft.”
Where once she wrote songs that electrified audiences nationally and internationally – touring with the likes of Meatloaf and being the only women’s band of 20 Australian bands selected for the first world simulcast Aids For Africa in 1985 – eventually her creativity was reshaped by the unforgiving neurological condition.
“Once she got over that initial shock, she decided she’d become a real advocate for dementia rights,” Lynda said.
“She started that in 2014 and kept going all the way through.
“Partly because she had been so well known, she said ‘Look, if I still have a fanbase, I might as well use it. People need to know what it’s like.’”
Supported by Lynda, Veda used her platform and voice to educate others about young onset dementia, transforming her personal challenge into a powerful public narrative about dignity, resilience, and understanding.
“Because of the geographic rollout of the NDIS, she wasn’t eligible for the NDIS … so she was forced into the aged care system, which was really very, very difficult,” Lynda said.
“The issue for people with young onset dementia is that unless they’re under the NDIS … anything that’s set up for people with dementia caters to a much older demographic.”
She said they provided evidence to the Aged Care Royal Commission, with Lynda taking the stand, while Veda chose to present a video.
“She ended up making one of the royal commissioners cry,” she said.
The pair have been involved in an endless number of organisations, including Dementia Inclusive (then Kiama Dementia Friendly Community Advisory Group), Dementia Australia, OPAN National Reference Group, Dementia Alliance International, People With Disability Australia and contributing to the Australian Journal of Dementia Care.
Since Veda’s passing in May last year, Lynda has become a Weaver – an experienced mentor who supports those caring for loved ones with dementia through the Illawarra Women’s Health Centre program of the same name.
Those Weavers, often former carers or professionals from aged care and dementia support fields, understand the challenges of caregiving firsthand and offer companionship, advice and reassurance.
“I’ve been very lucky to make a lot of friends who were living with dementia, and they were actually my best teachers,” she said.
“Because of my background in psychology, I’m able to read academic studies and learn very quickly, but it was the lived experience that taught me more than anything else.
“And I thought, even before Veda had died, what is really lacking is for people to have someone they can turn to, who’s going to listen to them without any judgment, and also point them in the direction of whatever services they may want or need.”
She said she also recalled how lonely being a carer could be.
“Because of Veda’s loss of language, I was very isolated for a long time. Her old friends just couldn’t cope, didn’t visit, so I became socially isolated as well,” she said.
“That’s why I thought, I need to do something else to contribute.”
She said it was a role she’d encourage others with lived experience to get involved in, admitting there was a bit of fun along the way and the enjoyment of spending time with people with shared experiences.
“It’s very rewarding, because you’re actively helping someone who’s going through it,” she said.
“We need more Weavers, because we have so many people applying to the program that need support.
“The latest prevalence data is out via Dementia Australia, and the incidence of dementia is just increasing – snowballing, in fact.”
Lynda said dementia was now the leading cause of death in Australian women and was projected to overtake heart disease as the primary cause of death overall.
She said it was important for people to understand dementia as a disability that changed abilities, not just removed them.
“I’m lucky, because … the town of Gerringong really took her under their wing,” she said.
“If she went out on one of her walks, as she used to often do, and then wasn’t sure which way down the hill was home, someone would always guide her and bring her back, which I thought was just lovely. There was no discrimination at all.
“I think when the community understands a little bit more about disabilities, they can start to understand more about dementia.”
Training is provided to Weavers in the form of two half-day one-on-one sessions.
Those interested in becoming a Weaver, can contact Sharon Stewart at the Illawarra Women’s Health Centre on 4255 6800 or 0492 857 827.
