Don’t Demention It: How one rural support group grew into something bigger

In a rural farming community like ours, where resources can sometimes feel out of reach, the need for support networks is critical.

The Don’t Demention It Dementia Support Group in Kyabram, in north central Victoria, was born from a simple but powerful moment; one that sparked change and continues to grow today.

It was at Kyabram Community and Learning Centre (KCLC) where strangers met, not realising they were about to become a thriving community of support, connection, and advocacy.

A chance meeting that started it all

Dedicated dementia advocate and Kyabram local Mick Simpson first connected with us at KCLC when he came to a Carers Victoria-funded movie night.

It was a casual evening, meant to provide a moment of respite for carers, but it quickly became something more. Mick passionately shared his experiences, and as a result of the discussions he sparked, it became clear that there was interest in forming a local support group, specifically for people in the community living with dementia and their carers.

To gauge the level of interest, KCLC trialled a dementia café – an informal gathering space where people could connect, share stories, and find support. That first meeting saw just eight people attend, including Mick and his wife Carmel. Alongside them, several community health professionals joined in, recognising the importance of this initiative.

Some of the attendees arrived that day struggling to navigate the challenges of a dementia diagnosis, and feeling lost. But by the end of that first meeting, there was a palpable sense of hope; hope that something meaningful could take root in our rural town.

A group built by the people, for the people

With the positive response to our first meeting under our wings, KCLC planned a second gathering, and from there the Don’t Demention It support group truly began to take shape.

“At KCLC, we firmly believe in co-designing projects with the people they are meant to serve,” KCLC chief Jen Savage said.

“This was never about us deciding what the group should be; it was about the members themselves leading the way. They knew what they needed; we were simply there to support them and provide the confidence to make it happen.”   

The group has since grown significantly, with meetings now held twice a month. One is a social catch-up or outing on the second Thursday of each month, offering a relaxed way for members to connect and enjoy time together. The second is an informative session on the last Thursday of each month, where guest speakers are invited based on topics chosen by the group.

The group now has over 38 active members, with people traveling from Echuca, Shepparton, and Nagambie to take part, and while the members may change over time – due to the nature of dementia –the group remains a constant source of support and connection for those who need it.

However, the real magic happens outside these scheduled meetings.

The friendships formed within the group have extended far beyond the walls of KCLC. Members regularly meet up for dinner, coffee, a walk, or just a chat. They check in on each other, share laughter, and remind one another that even though their dementia journeys are all unique, they are not alone.

So many in the group have spoken about how, after their diagnosis, some of their original friendships slowly faded away. Friends didn’t know what to say, how to act, or perhaps just didn’t understand.

Within this group, there is no judgment; just understanding, companionship, and a shared determination to continue living fully.

A dementia diagnosis may change aspects of life, but it does not erase the person. In this group, that truth is honoured and celebrated.

As one member simply puts it:

“I am still here.“

Expanding the impact: The Dementia Voices Alliance

As Don’t Demention It grew, so did the need for broader advocacy.

From the foundations of the support group, the Dementia Voices Alliance of Campaspe and Goulburn Valley was formed. This alliance brings together health services and, most importantly, community members living with dementia – ensuring that those with lived experience have a voice in shaping local services and policies.

Mick Simpson has been instrumental in driving this forward. His determination has ensured that real change is happening in our region. The Alliance continues to seek new members who can help us push forward our strategic vision for a more dementia-friendly community.

Building a dementia-friendly community

It's clear the impact of the Don’t Demention It group and the Dementia Voices Alliance is being felt well beyond our meetings. Together, we’ve worked on initiatives to improve our town’s accessibility and inclusivity. These include:

• Understanding Dementia Community Forum
  We hosted a community forum that attracted over 100 attendees, highlighting the need for continued awareness and education. The event provided vital information on treatment, diagnosis, and how to live well with dementia. Feedback from attendees confirmed just how valuable these conversations are, reinforcing the need for ongoing advocacy and support.
• Accessibility Street Audit
  With the input of people living with dementia, we conducted an audit of our local streets and public spaces to identify barriers to accessibility. This project has helped raise awareness of the small but significant changes that can make a town more dementia-friendly, such as clearer signage, safer pedestrian areas, and dementia-friendly businesses.
• Improvements to the Community Garden
  One of the most heartwarming projects has been enhancing the local community garden to ensure it is a welcoming and accessible space for people living with dementia. The garden now serves as a peaceful retreat where members of the support group, their families, and the wider community can come together in a safe and familiar environment.

Much of this progress has been made possible through generous funding support from Dementia Australia and Carers Victoria, whose contributions have helped transform ideas into reality.

Looking ahead: Another community forum in August

The momentum is only growing. We are now in the midst of planning another Understanding Dementia Community Forum for August this year. This upcoming event will build on the success of our first forum, featuring expert speakers, lived-experience discussions, and practical guidance for families, carers, and service providers.

Our goal is to keep raising awareness, breaking down stigma, and ensuring that people living with dementia – and their carers – never feel like they are navigating this journey alone.

A community that stands together

The Don’t Demention It group has become more than just a support network – it’s a family. Members have built deep friendships, and despite the challenges that come with a dementia diagnosis, they continue to find joy in each other’s company.

As one member pit it:

“I’m so glad I heard about this group and you encouraged me to come along. It truly has been great – a chance for us to get out together.”

Another added:

“We look forward to coming. We both need to get out, and it’s important for my husband to meet up with other people and know he isn’t alone.”

And that’s what this is all about – making sure that no one feels alone.

A dementia diagnosis may bring challenges, but through connection, understanding, and advocacy, we are proving that life after diagnosis can still be rich, meaningful, and full of support.

The Don’t Demention It group and the Dementia Voices Alliance will continue to grow, evolve, and fight for a future where every person living with dementia has the support they deserve. And as always, we welcome anyone who wants to join us on this journey.  

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