29/05/2026
Our take on the National Coalition Budget 2026 in terms of YOD
The Young Onset Dementia Collective welcomes any initiative that helps people remain independent and connected to their communities. For many older New Zealanders, having a recognised form of identification through an upgraded SuperGold Card may make everyday life easier and reduce barriers to accessing services.
Overall, however, we are not surprised that Budget 2026 leaves many people and communities disappointed. Through our volunteering at Fair Food, we witness firsthand that challenges, hardship and unmet need exist across all parts of our community. Every week we meet people doing it tough. We see families struggling, community organisations stretched, and volunteers stepping in to fill gaps wherever they can.
That reality makes advocacy challenging as we stand alongside many communities in need, each competing for attention, recognition and support.
From our perspective, Budget 2026 highlights a difficult reality for people living with younger onset dementia and their families/whānau. While funding has been found to improve access and convenience for older New Zealanders, there remains no dedicated Budget investment for young onset dementia, no funding for age- and life-stage appropriate supports, and no meaningful recognition of the unique challenges faced by working-age people living with dementia.
Sadly, this is exactly what we expected.
The expectation seems to be that communities will look after themselves and each other. When funding is absent, we do not simply look away. We try harder. That is exactly what we are doing through the Young Onset Dementia Collective.
Every programme we run, every opportunity we create, every connection we foster exists because of the kindness, generosity and commitment of volunteers, supporters, community partners and everyday New Zealanders who believe people living with younger onset dementia deserve better.
But there is also an uncomfortable truth. In a system that properly recognised and responded to the needs of people living with younger onset dementia and their families, organisations like ours should not need to exist. We exist because there are gaps. We exist because people are falling through them. We exist because too many families are being left to navigate one of life's most challenging journeys with little age-appropriate support, limited options and few places where they truly belong.
But there are limits to what goodwill alone can achieve.
We cannot reduce the months and years many people wait for answers and diagnosis. We cannot fix inconsistent access to services and support. We cannot replace lost incomes when a diagnosis suddenly removes someone's ability to work. We cannot relieve the financial pressure that falls on families and carers. We cannot solve transport barriers that leave people isolated. We cannot create age-appropriate programmes and support services across the country without investment. We cannot remove the stress, uncertainty and exhaustion that so many families face every day.
We cannot change the reality that many carers are forced to reduce work or leave employment altogether. We cannot fix housing pressures, rising living costs, or a welfare system that often fails to reflect the realities of working-age dementia. We cannot provide the specialist services, respite options, navigation support, and community infrastructure that should already exist.
Most importantly, we cannot ensure that ALL people living with younger onset dementia have the same opportunities to remain connected, contribute, find purpose and continue living meaningful lives.
We are deeply grateful for every person, organisation and community that has wrapped around us and helped us build something different. But community goodwill should complement public investment, not replace it.
As we move towards the next election, we will be looking carefully at the policies, priorities and budget commitments of all political parties. The young onset dementia community does not need another round of acknowledgement, consultation, research projects, advisory groups or reports describing problems that are already well understood.
We need action. We need investment. We need accountability. And we need policies that help people living with younger onset dementia and their families do more than just managing to get through each day. We need more than hope.
