MARK - “Too Young. Too Early. Too Hard” Left to Fall Through the Gaps
- 2 days ago
- 5 min read
Mark’s story should never have happened. And yet, it increasingly happens.
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.
His support person, Erica Clarke, did what any committed advocate would do. She sought help. She attended appointments. She pushed for answers. After months of testing and waiting, Mark finally received a formal diagnosis in October 2025 — five months after being referred to Mental Health for Older Adults because he had just turned 65.
Five months. Five months of uncertainty, stress, and decline.
But the diagnosis was only the beginning of a far more brutal journey.
The System That Didn’t Know What To Do With Him
When Mark’s landlords learned of his condition, his tenancy was terminated. His family were unable to accommodate him.
He needed safe, stable housing and supported living care — something entirely reasonable for a person living with a progressive neurological condition.
Instead, he entered the bureaucratic twilight zone that too many people with young onset dementia know all too well.
Housing services rated him too low to qualify for social housing.
Health services told him rest home care was the only option.
NASC assessed him — and concluded he was too early stage for rest home care.
Essentially, too capable for a rest home. Not vulnerable enough for housing.
So where does someone go when the system says no in every direction?
Mark couch surfed for months.
Months of instability. Months of stress. Months of living in environments that are the exact opposite of what someone with cognitive impairment needs.
And all the while, Erica, working full-time, was effectively running a second full-time job navigating systems that would not return calls, were difficult to access, and seemed structurally incapable of responding to someone who did not fit neatly into an age-based box
Mark’s story is not unique.
The Structural Failure at the Heart of Young Onset Dementia
Young onset dementia does not sit comfortably within existing systems. It exposes their cracks.
People under 65 are:
Too young for “older persons” services.
Often excluded from age-based housing criteria.
Ineligible or deprioritised within disability frameworks not designed for degenerative neurological conditions.
Still physically well and high-functioning, making their needs invisible.
The result?
A collision between health, housing, and disability systems that operate in silos, leaving people with YOD stranded in between.
Carers and whanau are forced into exhausting advocacy roles just to secure basic human needs: housing, support, dignity.
The emotional cost is immense. The practical burden is relentless.
And it should not require political connections, extraordinary persistence, or sheer luck to solve a housing crisis for someone with a diagnosed neurological condition.
When Someone Finally Listened
After months of fighting, Erica was referred to a West Auckland NGO. More good fortune than via a fit for purpose pathway of care supported government agencies.
For the first time, someone rang back immediately. For the first time, someone listened. For the first time, someone said:
“It sounds like you have been doing a full-time job on top of a full-time job… you can let that go now. We’re going to find the best solution for our Mark.”
Within weeks, Mark was shown suitable housing options. Within two weeks, he moved into an apartment he loves.
Supported living care was organised. Stability returned.
It should not have taken homelessness to get there.
Where Young Onset Dementia Collective Steps In
Mark is now part of the Young Onset Dementia Collective community.
He attends our programmes. He volunteers at Fair Food. He participates in age-appropriate activities that reflect who he is — not the age-based assumptions placed upon him.
And importantly, we have supported the advocacy needed around him.
Because young onset dementia is not simply a medical diagnosis. It is:
A housing issue.
A workforce issue.
A financial security issue.
A social connection issue.
A systems design issue.
Every week, we are contacted by families telling versions of this same story:
“We were told he’s too young.”
“She’s too capable.”
“There’s nothing available.”
“We don’t know where to send you.”
The numbers are growing and the systems are not adapting.
The Lengths Families Must Go
Mark’s housing was eventually resolved. But consider what it took:
Months of uncertainty.
Repeated assessments.
Conflicting eligibility decisions.
Homelessness.
A full-time worker becoming a full-time system navigator.
Political escalation.
External intervention.
This is not a compassionate system. It is a reactive one.
It responds when pushed hard enough. It does not proactively recognise young onset dementia as distinct.
This Is Bigger Than One Story
Mark’s story matters. But what matters more is this, and it is not exceptional.
Young onset dementia demands:
Age-appropriate housing pathways.
Clear cross-agency protocols.
Flexible eligibility criteria.
Recognition that early stage does not mean low need.
Support systems designed for working-age adults, not retirees.
Without systemic reform, more people will fall through the same cracks.
More carers will burn out. More people will fall through the gaps. More will be told they are “too young” for help.
The Young Onset Dementia Collective is Growing Because The Need Is Growing
Mark continues to be supported by his advocates, and is also under the umbrella of Young Onset Dementia Collective.
He is one of a growing number of people seeking:
Meaningful roles.
Purposeful activity.
Appropriate support.
Systems that understand them.
We will continue to:
Advocate.
Escalate.
Collaborate.
Design programmes that restore dignity and connection.
Challenge policies that fail our community.
But we should not have to fight this hard.
Young onset dementia is not rare. It is not niche. It is not someone else’s problem.
Young onset dementia is here. It is increasing. And the systems must evolve because no one living with a progressive neurological condition should ever be left homeless simply because they do not fit the right age bracket.
YOUR DONATION will HELP US HELP OURSELVES.
Getting help needed is a living challenge for the group behind Young Onset Dementia Collective.
If we wait for Government, Ministry of Health or under-funded agencies, it will be too little too late for our people.
For many the situation is dire. Help is needed NOW so we made a collective conscious decision to do everything we can to help ourselves. Spouses, partners, carers of people living with younger onset dementia have real life reasons driving combined determination.
Help us keep minds engaged and spirits lifted for those affected. Plus support carers in their financial, mental and wellbeing journey.
