Two Decades of Knowing, Two Decades of Neglect

admin1356
Sep 18
6 min read

Updated: Oct 14

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 Collective sent me a document that shook me, and extended my understanding of just how long our policy makers have known about these needs, and how consistently they have ignored them.

The 2002 Ministry of Health report

The document is a Ministry of Health report from January 2002 titled Dementia in New Zealand: improving quality in residential care. That is more than twenty years ago. In black and white, it sets out many of the same things I and others are still saying today.

In Section 2.4 “Younger people with dementia”, the report states:

“Younger people with dementia do not fit easily into the services designed for their older counterparts.”

That single sentence captures the whole problem. We have known about the inappropriateness of this ‘fit’, what we now call ‘age-appropriate support and services for people with YOD and their whanau’, since at least 2002. It is recorded right there in the January 2002 report and is available from the Ministry of Health website.

This report goes on to note the basics we continue to highlight now:

delayed diagnosis,
limited GP experience with early onset,
low public awareness, and
stigma.

In the report’s words, “Public awareness of early onset dementia is also low, leading to potentially more stigma being attached to the condition in younger people. The report then notes:

“Younger people with dementia have service needs which are distinct from their older counterparts. They require different care solutions because of the emotional and psychological phase of life their age represents.”

The section then spells out why age-appropriate responses matter: “Care packages must reflect all the needs of a 40–60 year old person and that of their significant others.”

The report is clear about what good looks like. Still in Section 2.4, it says, “The best way of meeting the needs of younger people with dementia is through community services,” with a special emphasis on family counselling, emotional support, clinical management, and innovative day and respite planning.

And it does not stop at description. Under “Changes required for quality improvement” (again in Section 2.4), it calls for particular attention to the special needs of younger people and for development of appropriate care packages and innovative programmes.

Finally, the Executive Summary, Recommendation 24 makes the system-level ask explicit as part of a wider project on age-appropriate residential care.

“Ensures that providers caring for younger people with dementia are able to fully meet their special needs with appropriate care packages,”

The long shadow of inaction

So what happened in the last 23 years? Not much.

Through the 2000s and early 2010s, YOD remained largely invisible in core health strategies. The 2013 Dementia Framework recognised a person- centred, life-course approach, but it was non-binding and unfunded. Only $2.5 Million was provided, spread across all District Health Boards, in Budget 2012 to produce their own local dementia pathways, guided by the 2013 Dementia Framework. The framework could be used by each DHB as they worked with “primary, secondary and community health and social support services (including social, information, emergency and housing) to develop clear, consistent, well-resourced and easily accessible dementia care pathways.” Young-onset dementia is mentioned five times across the 50 pages of the framework, and not a single reference is made the ’basics’ of YOD mentioned in the 2002 report, nor the need for age-appropriate support and services development. Progress on implementing the Dementia Framework in each DHB depended on local interpretation and capacity. By 2019, some District Health Boards had completed their dementia care pathways, and some had not even started!

Then came the Dementia Mate Wareware Action Plan 2020 - 2025. It was the first national plan co-designed with the dementia community, with over 300 organisations and individuals consulted, and it explicitly included Young-onset Dementia. Yet the gap between acknowledgement and action yawned wide. The plan was never fully funded or implemented, despite being endorsed by Cabinet in 2021. $12 million was allocated in Budget 2022, over four years, as an initial invest to start implementing the plan. And then - nothing. By 2025 what have we got to show in progressing this plan? Seven regional or local pilots and a leadership group, but the nationwide change promised on paper never arrived.

Now in 2025, the same arguments are being made again. We are still saying younger people with dementia and their whānau need services that fit their stage of life. We are still pointing out that they do not belong in aged care units designed for people in their eighties and nineties. We are still warning about the financial and emotional impacts on families. And we are still seeing very little systemic change.

Systemic neglect, not a lack of knowledge

What the 2002 report proves is that this is not a problem of ignorance. Governments, ministries, and health agencies have known for more than two decades that people with YOD face unique challenges and require different support. The problem is systemic neglect and policy inertia.

Successive governments of different political stripes have treated dementia as an ‘older persons’ issue, avoiding the complexity of building age-appropriate pathways for those under 65. Whānau have been left to shoulder the consequences. The pattern is painfully consistent: acknowledgement without action.

If you want to see that for yourself, read Section 2.4 and Executive Summary Recommendation 24. The language is clear and practical. But I would expect that if such a report were written today it would use more enabling, destigmatising, and respectful language than what was considered acceptable in 2002. The authors knew what was needed. They asked for it. We are still asking for the same things.

Why this matters now

The number of people with Young-onset Dementia is growing. Clinical practice, research, and lived experience continue to refine our understanding of what families need. Yet our systems still try to fit a 45-year-old with dementia into an aged-care model designed for someone in their late eighties. It is not just bad policy. It is harmful. It drives whānau into financial crisis, leaves them with inadequate support, and compounds the trauma of diagnosis.

For me, learning that the Ministry of Health had already described these needs so clearly back in 2002 adds urgency. Awareness has been raised. Recommendations have been made. The real question is why governments failed to act on them.

A call for durable commitment

The message to politicians and policymakers is simple:

The needs of people with Young-onset Dementia and their whanau are not new.
They are well documented. See Section 2.4 and Recommendation 24 of the 2002 report.

Continuing to ignore them is not oversight. It is systemic neglect.

What is required now is durable, cross-party commitment, ring-fenced funding, and the full integration of Young-onset Dementia into every dementia strategy as a distinct group with distinct needs. Anything less is not simply inaction but active neglect, a deliberate choice to abandon thousands of families to cope alone.

This is the moment to turn awareness into action. If another decade is lost, families and advocates will not forget, and decision-makers will be held accountable. But accountability does not begin in Parliament. It begins with all of us.

If you are reading this and agree that younger people with dementia deserve age-appropriate services and support, here are concrete steps you can take:

Share this article, and others from my Young-onset Dementia series widely so others can see that governments have known about these needs for more than twenty years.
Write to or visit your local MP and ask them what they are doing for people with Young-onset Dementia and their whanau.
Contact Minister of Health Simeon Brown and Associate Minister Casey Costello, who hold responsibility for dementia services, and demand that the Action Plan be properly funded and implemented.
Write to the Prime Minister, opposition leaders, and health spokespeople so that all parties understand this is not optional, and that families expect durable, cross-party commitment.
Connect with others in your community who are affected, and make sure your collective voice is heard.

Families living with Young-onset Dementia have carried this burden for too long. The evidence is clear, the solutions are known, and the moral obligation is undeniable. What remains is for all of us, citizens, advocates, and leaders, to insist that this time action must follow.

Paul Singh, PhD, is the primary carer for his wife Jacki, who lives with Young-onset Dementia. He advocates nationally for more and improved age-appropriate services and fair policy for people with YOD and their whanau in Aotearoa New Zealand, drawing on both lived experience and his academic background. Visit Paul's Substack Page