A new partnership between Dementia Support Australia (DSA) and the Australia Frontotemporal Dementia Association (AFTDA) is raising awareness for Frontotemporal Dementia (FTD)  and providing a new level of support through the creation of ‘Carer Conversations’.  

This network of Carer Support Groups aims not only to provide emotional and practical support through these Australia-wide carer groups but also to continue to raise awareness about FTD. 

The unique challenges of FTD 

FTD affects the frontal and temporal lobes of the brain. Rather than causing memory loss, it can lead to behavioural and language changes such as lack of empathy, inappropriate comments or actions, and altered desires such as cravings for sweets or alcohol. It mainly affects people between 45 and 65 years old – much younger onset than most types of dementia. Many people living with FTD are still highly active in the community, often with younger families and careers. 

FTD has long been misunderstood within the dementia community – often taking years to diagnose and even mistaken for mental illness. Navigating this process can be incredibly confusing and stressful for households and relationships. These sudden and often severe changes in behaviour can place immense stress on carers (often a spouse or family member) and any children. A lack of knowledge and sense of isolation is common. 

Connecting with others who “get it” 
Dr Tracey Wardill, one of the dementia specialists involved in setting up the Carer Conversations groups, found that just the existence of the groups has been effective in helping to lower stress levels. She says that by joining, carers feel understood and that there are others who “get it”. 

Heather K, a participant, describes the group as a ‘lifeline’. “To share with others who understand and to have that quality time is a blessing,” she says. “I draw strength from others’ stories. We laugh, cry, relax and are aware we are not doing this alone.” 

“The emotional support that carers receive from others in a FTD support group has far-reaching benefits,” says carer Yasmin T. “It positively impacts carers, extending also to their loved ones and the broader community. This is significant as many people living with FTD are still active in the workforce with dependent children at home. The practical and professional advice, along with the collective wisdom shared in the support group, is invaluable.” 

Join the Conversation 
If you are caring for a person living with FTD you can join or get more information by visiting the Dementia Support Australia website at https://www.dementia.com.au/carer-conversations or call 1800 699 799.