Grace has been with the DSA team for nearly eight years, first as a dementia consultant and now as co-facilitator of Carer Conversations sessions in Victoria. We asked Grace about the program and how families and carers are benefiting. 

 How did Carer Conversations came about and why? 

The program is about creating a safe space for carers to share their personal experiences, and to honour their stories. Although still in its early days, the program has started to grow organically.  

People need to talk and to be heard. We’ve seen that carers are already on board with expressing what they’ve been through, what they’re going through - what has worked and what hasn’t.  

It’s been very powerful to witness this collective support and sharing of stories. 

How do you feel this program is already supporting carers of people with FTD?  

It’s important that carers and family members know they’re not alone. Caring for someone with FTD doesn’t come with a rule book – it may be a role the carer feels they’re not equipped to do, and it can come with little notice.  

Sometimes it’s about taking a new approach to doing things, like showering for example. The loved one with FTD may suddenly find showering a very stressful, triggering experience - so we gently advise alternatives. It’s about reframing our approach as carers, and teaching ourselves to be flexible. 

Are carers who come to your programs facing similar challenges? 

Definitely in some instances – though each person with FTD experiences the condition differently, which is why it’s so important to address them as individuals; they have their own unique life story. 

Lack of suitable accommodation options for people with FTD is something that comes up regularly, as are concerns about how the person with FTD may behave in a social setting, as their behaviour changes.  

To date, we have covered important topics such as hygiene, depression and anxiety. What else is in the pipeline? 

Our national team meet every month to research, brainstorm and discuss suitable topics that have been raised by carers in previous groups and from our carer pre-participation questionnaires. To date, we have discussed grief, sexuality, NDIS navigation, disease progression of FTD and transitional care as topics for upcoming sessions.

What do you hope for in the future for people with FTD and the people who care for them? 

Our aim is to create awareness that FTD is an issue that deserves the right resources and support.  

Providing carers with the skills to adapt to changes when they happen is something I am deeply passionate about. And when a carer is experiencing a challenging situation, knowing there is someone else living not very far from them who really understands what they are going through can be an enormous comfort.  

We want them to know we’re here to support them, whatever kind of day they are having; whatever they are going through.