Celie Gannon shares her journey caring for her rocker husband, Jim
Celie Gannon published Jimmy Gannon’s Dangerous Dementia, a Carers Story at the end of 2025. The book documents her experience of caring for her English rocker husband Jim Gannon who was diagnosed with Behaviour Variant Frontotemporal Dementia (BvFTD). Celie cared for Jim at home for five years before he entered residential care.
“I did it to document my journey as a carer in this very unusual and difficult disease, so that other carers might benefit from my experience,” says Celie, who is also advocating for more government support for carers.
“Because it’s early onset our loved ones are too young to be placed in aged care facilities where the average age of patients is eighty-five,” Celie says.
Celie and Jim met in the 1970s when she was studying in London and the couple made Sydney their home in 1976, moving to the Northern Beaches in the 1980s.
Jim had played guitar in successful bands Black Widow and Fox in the UK, and Bop to the Drop, and The Buddy Holly Show in Australia.
Jim, now 78, was diagnosed with BvFTD when he was 68 following a few years of unusual behaviour. The Behavioural Variant is the most common form of Frontotemporal dementia.
“It affects personality and behaviour,” says Celie. “He wouldn’t be his usual self around people; he was usually very happy, telling jokes all the time, very affable, and that changed. He started to lack empathy.”
Celie says that Jim took his foot off the brake sitting at traffic lights a couple of times when he was day dreaming. She says he didn’t sleep much and would be walking around the house at night and that his behaviour was unpredictable.
“There’s a cognitive test that people can do with their GP in their late 60s. That’s how (BVFTD) was first picked up. The doctor recommended Jimmy see a geriatrician.”
Jim and Celie with their son around 1980
Jim went through a lengthy testing procedure and required a lot of care right from the beginning.
“I would like more help for carers who are looking after someone with this kind of dementia. And it’s not even like a dementia in many ways because it’s early onset and doesn’t involve memory loss,” says Celie.
“My mom had Alzheimer’s and she just plodded along and just forgot a few things like where she’d put the keys,” explains Celie. “It took me a while to work out (this) wasn’t like that. And I’m scrambling around trying to get help.”
When Jim had a fall and broke his hip, resulting in a long stint in rehab, his doctor advised Celie to investigate residential care.
“I see my husband every second day, so I’m still a big part of his life,” says Celie. “And he’s still got a memory, he knows exactly who I am. He knows everything that’s going on around him.”
Celie is an advocate for Dementia Australia and speaks on their behalf as much as she can. And Dementia Support Australia (DSA) organises monthly online carers conversations groups, which she says are helpful. Dementia Action Week will run from 21 to 27 September.
Celie credits MWP Care, Easylink, Proveda, Hammond Care, Dementia Support Australia for the tremendous way they helped Celie.
“They’re all absolutely fantastic,” she says. “They’re incredible.”
To buy Jimmy Gannon’s Dangerous Dementia, a Carers Story, at $20, email ceciliagannon@yahoo.com.au
For more information on Dementia Action Week, visit: Dementia.org.au