When most Australians think of dementia, they envision someone over 65 with memory loss, which is typically associated with Alzheimer’s. However, Frontotemporal Dementia (FTD) is different. Affecting only the frontal and temporal lobes, FTD leads to behavioural and language changes in people aged 45-65, often impacting those with active careers and young families.

Unique Challenges of FTD
Due to its early onset, FTD is often misunderstood and misdiagnosed, and sometimes mistaken for mental illness. This leads to confusion and stress for families, as FTD can cause profound behavioural changes such as lack of empathy, inappropriate actions, and cravings for sweets or alcohol, which puts immense stress on carers and family members.

Connecting with others who “get it”
Dementia Support Australia (DSA) and the Australian Fronto-Temporal Dementia Association (AFTDA) have partnered to raise awareness and support through our new program, ‘Carer Conversations’. These groups offer safe spaces for those supporting someone with FTD. “A Carer Conversation group provides a community of understanding, which can really lower stress levels,” said Dr Tracey Wardill, a dementia specialist involved in setting up these groups.

The aims of Carer Conversations:

• Empower and build confidence and resilience in carers.
• Offer a confidential forum for sharing emotional and practical experiences.
• Provide information and resources to reduce carer stress.

Participants like Heather K describe the groups as a ‘lifeline’, where they find strength and support. Margaret W credits her network with helping prevent depression, while Yasmin T highlights the positive impact on carers, their loved ones, and the broader community.

Join a conversation
Powered by carers of Australians with FTD, the Carer Conversations initiative offers a platform to share experiences, feel understood, connected, and equipped to navigate the road ahead.
If you are caring for someone with FTD, register for a group here or call 1800 699 799.