When a Diagnosis Costs More Than a Job
- 19 hours ago
- 4 min read
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. (RNZ Editorial - 'Your partner is your welfare system' - coupled up with not enough)
For people living with young onset dementia, this isn’t just a policy flaw. It’s a life-altering shock that arrives all at once.
A diagnosis often comes in the middle of a working life—careers still active, mortgages still being paid, children often still at home. Then, almost overnight, work stops.
Not gradually. Not with a plan. But abruptly, and without a safety net that recognises what has just been lost.
The Invisible Cliff
For those under 65, the expectation is simple on paper: If your partner earns above a set threshold, you are not eligible for the Supported Living Payment. In reality, the impact is anything but simple.
It means:
A household instantly drops from two incomes to one
The working partner becomes both provider and caregiver
The person diagnosed loses not only their job—but their financial independence
And just like that, a couple becomes a system.
“Your Money Is Now Our Money”
As Ricky described, even in strong relationships, the shift is deeply uncomfortable:
“It’s still very awkward … I never ask for money for my personal expenses.”
This is a quiet loss that sits beneath the bigger headlines. For many people with young onset dementia:
They have contributed financially all their lives
They have managed households, businesses, and families
They have never needed to ask for money ... until now
Suddenly, everyday independence—buying a coffee, paying for something personal, contributing to family life—requires a conversation. And sometimes, silence feels easier than asking.
The Other Diagnosis: Caregiver
What is often overlooked in policy is that the partner does not simply “absorb” this change. They are also undergoing a profound transition:
From life partner to caregiver
From shared financial responsibility to sole provider
From future planning to crisis management
All while navigating grief, uncertainty, and exhaustion. This is not just a financial adjustment. It is an emotional, relational, and psychological shift—happening at speed.
When Policy Doesn’t Match Reality
The underlying assumption in the current system is that couples operate as a single economic unit. But real lives are more complex:
Finances may have always been separate
Commitments may already be stretched
The cost of living does not shrink when one income disappears
The costs of disability and care often increase
And importantly— a partner is not a welfare system. They are a human being already carrying more than most.
A System That Misses the Moment
Young onset dementia exposes a critical gap in how support is structured in Aotearoa. Because this group sits in between:
Too young for age-based entitlements
Too “coupled” for individual financial support
Too complex for systems built on standard assumptions
What is left is a cohort of people:
Forced out of work
Financially dependent overnight
Navigating a progressive condition
Without access to support that reflects their reality
What We Hear, Again and Again
At the Young Onset Dementia Collective, these stories are not rare. They are consistent.
We hear about:
People who stop working and receive nothing
Partners pushed to breaking point trying to hold everything together
Families quietly adjusting, cutting back, and carrying on
Individuals who stop asking for anything at all
Not because they don’t need support, but because the system has already told them they don’t qualify.
This Is Not About Blame. It’s About Fit.
The issue raised in the RNZ article is not about one person, or one couple. It highlights a broader question.
Does our system reflect the realities of modern life—and modern illness?
Because when a diagnosis removes someone from the workforce overnight, and the response is to assess them based on their partner’s income, we are not responding to disability, we are redistributing it.
A Call to Rethink
Young onset dementia is not rare. And the financial shock that follows diagnosis should not be invisible. If we are serious about supporting people to live well with dementia, then support must:
Recognise individual loss of income
Acknowledge the dual impact on both partners
Provide dignity, not dependency
Reflect real-world financial pressures
Because no one should lose their independence, identity, and income and then be told that support is not for them.
Because a Partner Is Not a System. They are a husband, a wife, a life partner, a person trying to cope. And they deserve support too.
Also of interest - Read Jacqui and Kevin’s plea
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.
