Our Stories

The Young Onset Dementia Collective is deeply honoured to have been nominated in the Community Collaboration – Ha Ora, Hapori category at the Tamaki Makaurau Zero Waste Awards 2026.

The YODC Retro Lounge has officially blasted off and if the launch event was anything to go by, we've landed exactly where we hoped to be.

For the Young Onset Dementia Collective (YODC), the story behind our new Retro Lounge programme began with a simple email and a hope. Not a proposal for a new programme. Not a request for funding. Just a hope that one person living with younger onset dementia might be able to spend some time in a place that reflected who she was.

At the Young Onset Dementia Collective (YODC), National Volunteer Week is an opportunity to celebrate the extraordinary impact ordinary people can have when they choose to stand alongside others.

Young Onset Dementia Collective receives Minister of Health Volunteer Award The Young Onset Dementia Collective has been honoured with the 2026 Minister of Health Volunteer Award, recognised as 'Winners of the Disabled Health Category'. On the surface, it’s a moment of celebration. And it absolutely should be. This award, as described in the Government’s announcement, recognises those who are making a meaningful difference - helping to create a health system that is more acce

My mum is 93. She has a laptop, an iPhone, social media accounts—and still drives the family RAV4. She’s sharp, independent, and generally well… unlike my husband, her son-in-law, who is living with young onset dementia.

Dementia is not just memory loss. In younger onset dementia, memory is often not the first thing to go. What changes instead is cognition - how the brain processes, interprets, and responds to the world.

When Ricky told RNZ, “The government essentially wipes their hands and says, your partner is your welfare system,” he gave voice to something many families already know—but rarely see acknowledged.

For many people living with young onset dementia, one of the greatest losses is not memory — it is purpose. Careers end abruptly, social roles disappear, and opportunities to contribute to community life can suddenly become limited.

Mark is living with young onset dementia — specifically early onset frontal temporal lobe dementia. His journey into diagnosis began the way so many do: subtle changes, growing anxiety, behavioural shifts, and deep concern from someone close enough to notice.

There is a quiet assumption in our communities that when someone is diagnosed with younger onset dementia, their world must immediately shrink.

For a person living with dementia in early to mid-stage the Total Mobility Scheme is not a “nice to have” – it is what makes everyday life possible. When you can no longer drive safely, struggle with navigation, timing, memory, or sensory overload on public transport, assisted driving services (ie. Freedom Companion Driving Services and the like) become the bridge between staying connected and becoming isolated.