Our Stories

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.

With the right space, the right community and the right opportunity, people with young onset dementia can not only flourish, but can make a real difference.

November 2025. To the New Zealand Government. I am writing again because I continue to be redirected between offices, and I have now been advised by the Rt Hon Christopher Luxon’s office that my concerns fall under the Health portfolio. I am requesting urgent attention, as my husband and many other New Zealanders living with younger-onset dementia are being devastatingly failed by our current systems.

The Young Onset Dementia Collective jumped onboard the food truck business for a day, and won over a new fan.

Analysis - Paul Singh, PhD I often write that the need for age-appropriate support and services for people with Young-onset Dementia (YOD) and their whanau has been ignored by successive governments. It is a theme that runs through almost everything I publish: families living with YOD are left to adapt within systems designed for older people, and their voices are treated as an afterthought. But yesterday, the advocates with lived experience from the Young Onset Dementia Coll

Out the back of Anita and Brent’s house is a little room with a very serious looking ice bath. Anita lifts the pool cover to reveal a deep stainless-steel tub filled with water currently set to 8 degrees.

Every year as the mid-winter stars appear in the sky, West Auckland food waste charity Fair Food has a Matariki festival to celebrate the stars who make their organisation work.

The Young Onset Dementia Collective’s (YODC) nomination of Fair Food’s lead volunteers Mandy Everill as a ‘Good Sort’ was a no brainer.

Young Onset Dementia Collective working with Fair Food.

The signs were subtle at first. Antonia had always been meticulous—clean, organised, house-proud. She would rearrange the sitting room...