24 Years of Knowing. Why Are Younger People Living With Dementia Still Waiting?
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 in New Zealand: Improving Quality in Residential Care was prepared for the Ministry of Health by public health physician Dr Hazel Lewis.
Although primarily concerned with improving residential dementia care, the report went much further. It examined early diagnosis, needs assessment, community services, respite, family support and the specific needs of younger people living with dementia. Its findings were remarkably clear.
The report recognised that younger people with dementia did not fit easily into services designed for older people. It acknowledged their different physical abilities, employment responsibilities, family circumstances, financial commitments and social needs.
It also identified delays in diagnosis, low public awareness, stigma and the considerable emotional and financial consequences for families. The report specifically recognised the potential for a double loss of household income when both the person diagnosed and their care partner were forced to leave employment.
These findings were made 24 years ago. For those living with younger onset dementia today, they are painfully familiar.
The recommendations were specific. So were the deadlines.
The report contained 26 numbered recommendations, divided into three categories: urgent action, action within 12 months, and action within 12–24 months.
Recommendation 24 explicitly addressed younger people with dementia.
It required the Ministry of Health to ensure that providers caring for younger people could meet their particular needs through appropriate care packages.
This was to be part of a wider project examining age-appropriate residential care.
In its dedicated section on younger people with dementia, the report also called for appropriate care packages in community and residential settings and the exploration of innovative programmes.
Other recommendations called for specialist needs assessment, better coordination, family involvement, dementia training and policies covering respite, day care and home support.
These recommendations were not simply about making existing aged-care services a little more accommodating.
They recognised that younger people needed a different response.
The government supported the recommendations
At the time, New Zealand was governed by the Labour-led government of Prime Minister Helen Clark.
On 21 March 2002, the Ministry of Health prepared a formal response for Associate Health Minister Ruth Dyson, stating that it supported the report's recommendations.
Ministry of Health NZ
On 11 April 2002, Ruth Dyson publicly released the report and announced improvements to residential dementia care contracts.
The government identified measures involving staffing, training, medication, restraint, auditing and monitoring, together with additional aged residential care funding.
The Beehive
Then came an even more significant commitment.
On 6 September 2003, speaking at the Alzheimers New Zealand National Conference, Ruth Dyson outlined progress in implementing the report's recommendations.
She identified new residential care contracts, workforce training, staffing requirements and work on dementia-specific standards.
Importantly, she stated that the government remained committed to addressing all the working group's recommendations by the end of June 2005.
June 2005. More than 21 years ago. That raises an important question. What happened to Recommendation 24?
Was the promised work on age-appropriate residential care completed? Were appropriate services developed and funded? What happened to the recommendation to explore innovative programmes for younger people living with dementia?
The historical records reviewed for this article establish the recommendations, government support and the stated completion target.
They do not establish that Recommendation 24 was fully implemented. Nor do they establish that it was formally abandoned. That is precisely why a clear account of its implementation is needed.
More than two decades of reports, strategies and plans
Since 2002, New Zealand has had governments led by both Labour and National.
There has also been further work on dementia policy, including the 2013 New Zealand Framework for Dementia Care, subsequent improvement initiatives, and the Dementia Mate Wareware Action Plan 2020–2025.
There has been progress, and it is important to acknowledge it.
In 2021, the Labour-led government endorsed the sector-developed Dementia Mate Wareware Action Plan. Budget 2022 subsequently provided $12 million over four years for implementation initiatives, including service trials focused on navigation, post-diagnostic support and respite.
People with younger onset dementia were identified as a priority population.
In 2023, the government publicly acknowledged the importance of culturally safe support for younger people with dementia and the need to learn from new service initiatives.
Ministry of Health NZ
By 2025, seven service trials were underway, with an evaluation programme involving the University of Auckland scheduled to run through to June 2027.
These are meaningful developments. But they also illustrate the distinction between testing approaches to service delivery and establishing accessible, sustainable services across the country.
In September 2025, the dementia sector presented the refreshed Dementia Mate Wareware Action Plan 2026–2031 to Associate Health Minister Casey Costello.
The refreshed plan again calls for action and sustained investment to improve dementia support. Its authors acknowledge that the work of the previous plan remains unfinished. NZ Dementia Foundation
In March 2026, the National-led coalition government responded to a parliamentary Health Committee inquiry into aged care services for people experiencing neurological cognitive disorders. The committee had made 14 recommendations. The government indicated that many would be considered through wider aged-care reform work.
The Beehive
And in August 2026, the Aged Care Ministerial Advisory Group published further recommendations addressing the sustainability and configuration of aged care, including dementia services.
Ministry of Health NZ
Again, there is policy work. Again, there are recommendations.
What remains less clear is the extent to which younger onset dementia is being addressed as a distinct service population, rather than being incorporated into systems predominantly designed around older people.
The evidence that the gap remains
One of the most telling contemporary examples comes from Alzheimers New Zealand itself.
Its current guidance on residential care acknowledges that finding an appropriate facility for someone under 65 with dementia can be extremely difficult.
It recognises that younger people may feel out of place in facilities where most residents are considerably older, and that available activities may not suit them.
The guidance also acknowledges that families may have to compromise because their choices are limited.
Alzheimers New Zealand
Compare that with the 2002 report.
Then, the Ministry was being advised that younger people did not fit easily into services designed for older people and that age-appropriate residential care needed to be developed.
Today, families are still being advised that suitable residential options can be difficult to find.
That comparison does not mean nothing has improved. But it is compelling evidence that the underlying problem has not been fully resolved.
And residential care is only one part of the picture.
What is still being overlooked?
Younger onset dementia is not simply dementia experienced earlier. A diagnosis under 65 often arrives during an entirely different stage of life.
People often still working, raising children, paying mortgages, supporting family members and participating actively in their communities. Many remain physically fit and retain considerable abilities, interests and a desire to contribute.
Yet access to appropriate support can depend heavily on where someone lives, what services are available locally and whether their circumstances fit existing eligibility and service models.
For some, a diagnosis is followed by a loss of employment, income, confidence and social connection.
For others, opportunities for meaningful participation gradually disappear, not necessarily because they can no longer contribute, but because suitable opportunities are not available.
Care partners may find themselves reducing or leaving paid employment while taking on increasing responsibilities. They may be required to navigate multiple agencies, organise support, advocate for services and make difficult decisions about respite and residential care.
The result can be a profound change in the financial, emotional and social circumstances of an entire household. These are not unexpected consequences. They were specifically identified in the 2002 report. And they are among the reasons that younger onset dementia requires a dedicated, life-stage-appropriate response.
A population that deserves to be counted and planned for
Alzheimers New Zealand's May 2026 position papers estimate that approximately 83,000 New Zealanders were living with dementia in 2025, including around 6,800 people with younger onset dementia.
May 2026 update
That is thousands of people, alongside their partners, children, families, friends and wider whānau. Yet the 2002 report had already recommended better population data collection to support service planning.
The continuing need for robust younger onset dementia data is important.
Without reliable information about the number of people affected, where they live, their circumstances and their support needs, it becomes harder to plan appropriate services, assess unmet demand or determine whether investment is making a difference.
Recognition must be supported by evidence, planning and funding.
The Young Onset Dementia Collective: responding to a need recognised decades ago
The Young Onset Dementia Collective exists because people living with younger onset dementia need opportunities that reflect their abilities, interests and stage of life.
The Young Onset Dementia kaupapa is built around four values: Connection | Purpose | Contribution | Belonging
Through community volunteering, creative activities, recreation and social participation, we focus on what people can do, rather than defining them by what dementia has changed. We see the value of remaining connected to ordinary community life.
We see the importance of being useful, contributing to others, sharing skills, developing friendships and having something meaningful to look forward to.
These opportunities are not optional extras. They are fundamental to identity, dignity, wellbeing and quality of life.
The 2002 report called for innovative programmes for younger people with dementia.
Today, YODC is helping demonstrate what such programmes can look like. But community organisations should not be expected to address longstanding service gaps without sustainable funding, appropriate partnerships and a commitment to developing accessible support across Aotearoa.
What we believe needs to happen now
YODC believes the time has come to establish a clear account of what has happened since 2002, particularly in relation to younger onset dementia.
We believe the Ministry of Health and Health New Zealand should be able to answer the following questions:
What happened to Recommendation 24? Was the proposed project examining age-appropriate residential care completed, and what services resulted?
What was achieved by the June 2005 deadline? Can the government provide an implementation record for the recommendations specifically relevant to younger people with dementia?
What is currently commissioned and funded specifically for younger onset dementia? Where are these services available, who can access them, and what gaps remain?
How are the distinct needs of younger people and their whānau recognised in needs assessment, respite, community support and residential care planning?
What is being done to establish sustainable, age-appropriate community programmes supporting participation, purpose, contribution and belonging?
How will progress be measured? What outcomes and timelines will demonstrate that younger people living with dementia are receiving more appropriate support?
These are reasonable questions.
They arise directly from the recommendations of a Ministry-commissioned report, the government's subsequent commitments, and the continuing experiences of people living with younger onset dementia.
Twenty-four years is long enough
We recognise that dementia policy and services have evolved since 2002.
Successive governments have introduced reforms, supported initiatives and contributed to a growing understanding of dementia.
But recognition, strategies and pilot programmes must ultimately be judged by the difference they make to people's lives.
For people living with younger onset dementia, time is especially important.
They cannot wait another generation for age-appropriate services to become routinely available.
Their whānau cannot put employment, financial security, relationships and family life on hold while systems continue to evolve.
And opportunities for connection, independence and meaningful participation can be lost long before someone requires residential care.
The most troubling aspect of revisiting this 2002 report is how much of it remains relevant today.
The issues were recognised.
The recommendations were made. The government supported them. A completion target was publicly announced.
And yet, 24 years later, families continue to encounter many of the very problems the report sought to address.
The question is no longer whether we understand that younger people living with dementia have different needs. We understood that in 2002.
The question is whether our health and disability systems are prepared to deliver a response that reflects that understanding.
For YODC, this is not about assigning responsibility to one political party. It's about accountability across successive governments, and ensuring that younger people living with dementia and their whānau are no longer left waiting for appropriate support.
Nearly 25 years of knowing is long enough! is time for evidence of delivery.
Sources and historical documents
Ministry of Health, January 2002. Primary report, including Recommendation 24 and the dedicated younger dementia section.
21 March 2002. Official Ministry advice supporting the report's recommendations.
(NOTE reports A and B above were removed sometime after it was discovered and shared by Young Onset Dementia Collective. However, we had downloaded the reports back in 2025 and both shared in the links earlier in this story. )
11 April 2002. Government announcement of its response and planned improvements.
6 September 2003. Government progress report and commitment to address all recommendations by June 2005.
September 2025. Refreshed national sector plan outlining priorities for the coming years.
