Our Stories

In 2002, the Ministry of Health received a report identifying the distinct needs of younger people living with dementia. The recommendations were supported, and the government subsequently committed to addressing them by June 2005. More than two decades later, the same issues remain. How did we get here, and what does this mean for people living with younger onset dementia and their whānau today? This is not new information In January 2002, a 48-page report titled Dementia i

Sometimes a new connection feels less like discovering something unfamiliar and more like recognising something you already know.

When we launched YODC Enrichment, we weren't entirely sure where it would take us. That was intentional. The idea was never to fill a calendar simply to keep people occupied. It was to create opportunities for people living with younger onset dementia to keep experiencing life, to get out into the community, try something different, revisit familiar places, discover new interests and, above all, share those experiences with others at a similar stage of life.

Five Thursdays ago, we opened the doors to the Retro Lounge not entirely knowing what it would become. We had ideas and concepts.

Technology is becoming an increasingly important part of the dementia landscape. From digital memory tools and reminder systems to AI-powered companions, significant investment is being made into technologies designed to help people live well with dementia. Many have genuine value and may improve independence, confidence, safety, communication, and wellbeing.

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.

Caring for someone living with young onset dementia (YOD) is not simply a role, it becomes a way of life. In Aotearoa New Zealand, where young onset dementia remains poorly understood and chronically under-resourced, carers and whānau often find themselves navigating a system that quietly assumes resilience without providing the structural support required to sustain it.

Living with, or caring for someone with, younger onset dementia (YOD) brings challenges that are often invisible, misunderstood, or overlooked. YOD affects people in the midst of working life, parenting, relationships, and community roles, yet most systems and supports are designed with older people in mind.

The Young Onset Dementia Collective (YODC) had the chance to spread their volunteering wings at Visionwest’s Christmas from the Heart.