Karen McStay, 35, dreams of juggling her children, her husband, her career, and making a home like other young mums.

Instead, Karen, of the Melbourne suburb of Doreen, has spent the last few years exhausted advocating for the right care for her mum, who lives with frontotemporal dementia (FTD).

Karen’s mum Fiona Wagner, now aged 55, was diagnosed with FTD in 2022 – a form of dementia that leads to behavioural and language changes in people aged between 45 and 65, often impacting those with careers and families. FTD is diagnosed in older people too.

An estimated 10,000 Australians live with FTD, a dementia that affects the frontal and temporal lobes. Hollywood actor Bruce Willis is living with FTD.

Karen’s mum means absolutely everything to her “but caring for her has impacted on my mothering, my social network, my work, my finances”, she said

“I’ve had to invest so much of myself in becoming my mum’s advocate to get what is needed. You keep getting knocked down and you have to keep getting up,” she said.

Now, a national network of pro-active groups called Carer Conversations, jointly developed by Dementia Support Australia (DSA) and the Australian Fronto-Temporal Dementia Association (AFTDA), starting tomorrow will empower carers like Karen in a new way.

Due to its early onset, FTD is often misunderstood and misdiagnosed. Health professionals can assume the patient is experiencing mental illness or depression.

Karen said she is looking forward to participating in Carer Conversations.

“I want connection with people who understand. There is strength in numbers. If we can all come together, we can jointly work together to solve problems,” she said.

Carer Conversations program director Holly Markwell said the initiative will offer carers of a loved one with FTD a pro-active platform to share experiences, feel understood and “equipped to navigate the road ahead”.

“These groups will be safe places for those supporting FTD. A Carer Conversation group will provide a community of understanding which can help with lowering stress,” Ms Markwell said.

The Carer Conversation network had its first meeting in Malvern, Victoria on Friday, October 25, followed by St Leonards, NSW on Wednesday, October 30 and Chermside, Queensland on Thursday, November 14.

Each group is facilitated and supported by health professionals with experience in FTD as well as specific tailored advice on behaviour change from DSA consultants.

Karen talks with strong emotion about how FTD has transformed her mum, a former successful sales executive, from the caring, driven woman she was. At first, her changes in mood, behaviour and personality were shrugged off as triggered by the pandemic lockdowns.

No medical professional could help explain her mum’s loss of empathy, nonsensically saying “mm-ahem” repeatedly in telephone conversations and on one occasion wandering into breakfast naked at a relative’s home.

When the diagnosis did come in November 2022, Karen found herself with even more struggle to get her mum’s care right. For a time, Fiona lived at Karen’s home, an arrangement that quickly took its toll on her family, especially her young boys.

Karen found getting approval for NDIS support an ordeal. Fortunately, Karen’s advocacy to get a fair deal for her mum was effective. She is appreciative of the help of the Young People in Nursing Homes National Alliance for their backing.

“I totally support the approach that no one aged under 65 should be in a nursing home. It’s not the right place. But if they are not in a nursing home, where?” Karen said.

Fiona is presently in respite accommodation in Thornbury while a permanent care arrangement can be found. One innovative approach is a share house with another person or persons living with FTD to share care costs.

Associate Professor Steve Macfarlane, DSA Head of Clinical Services, said FTD, is often misdiagnosed as GPs are more familiar with Alzheimer’s dementia. Unlike Alzheimer’s, memory loss is not a major early symptom.

He said there were three broad subtypes of FTD in its initial stages – the most common involving personality and behavioural changes including loss of empathy. Impulsive behaviour including aggression and disinhibition, and sometimes apathy.

“All these changes can be especially distressing for those who care for them,” A/ Prof Macfarlane said.

Other FTD subtypes include one where language is affected, including an inability to find words. The other is a semantic variant where recognition of objects is affected.

For more information or to join a Carer Conversation group telephone 1800 699799 or email carerconvos@dementia.com.au

Media: For more information contact  Kelvin Bissett on

0418 222 107 or email at kbissett@hammond.com.au.

HammondCare: HammondCare provides health, aged, dementia and palliative care expertise that empowers the people that we serve. Regarded nationally and internationally as one of Australia’s most innovative health and aged care providers, HammondCare offers hospital care, residential care and community services. HammondCare is an independent Christian charity.