Open Letter from a couple in need echoing the voices of many
- admin1356
- Nov 11
- 4 min read
Updated: Nov 21
November 2025
To the New Zealand Government
I am writing again because I continue to be redirected between offices, and I have now been advised by the Rt Hon Christopher Luxon’s office that my concerns fall under the Health portfolio. I am requesting urgent attention, as my husband and many other New Zealanders living with younger-onset dementia are being devastatingly failed by our current systems.
My husband Kevin (pictured) has been diagnosed with Behavioural Variant Frontotemporal Dementia (BvFTD). His symptoms began at just 51 years old. He is now only 56, yet this disease has stripped him of the ability to work, think clearly, make safe decisions, manage daily life, or maintain his previous personality and behaviour.
Behavioural Variant Frontotemporal Dementia (BvFTD)is a severe degenerative brain disease not age-related decline and there is no cure, no treatment, and no slowing it down.
Kevin’s Medical History – Clear Timeline of Decline
Early behavioural changes began. Increasing forgetfulness, impulsive decisions, emotional flatness, reduced empathy, and difficulties with planning. Symptoms were subtle but noticeable.
• 2022–2024:
Worsening personality and behavioural changes, including episodes of confusion, poor judgement, and irrational decisions. Family began noticing strong indicators of cognitive impairment.
• April 2025:
A serious safety incident occurred where Kevin drove aimlessly for seven hours with no awareness of time or direction. Police became involved, and his driver’s licence was medically suspended. This was the first clear sign of significant cognitive disorientation and loss of executive function. Employer started noticing changes in his work, and productivity.
• May 2025:
Progressive cognitive decline. Increased difficulty with memory, communication, emotional regulation, and daily tasks. Confabulation (filling memory gaps with invented information), compulsive screenshotting, and detachment from loved ones were noted.
• May-June 2025:
Neurological assessment conducted. A Mini-ACE cognitive test resulted in a score of 18/30, indicating moderate cognitive impairment. A head CT was performed, and further specialist referrals were initiated.
• September 2025:
Diagnosis of Behavioural Variant Frontotemporal Dementia (BvFTD) confirmed. This diagnosis explains the rapid behavioural changes, loss of insight, executive dysfunction, and personality changes.
• October 2025:
Continued decline in reasoning, safety awareness, judgement, and independence. Kevin cannot work, cannot drive, and requires daily supervision. He has lost his career, decision-making abilities, and the ability to understand consequences or manage his own wellbeing.
Current:
BvFTD is progressing. Kevin needs ongoing monitoring, stability, and support. I am his sole support person while also working full-time to keep our household functioning financially.
The Human Impact
Kevin did not ask for this. He was a loyal, hardworking man who contributed for decades. To have his working years and dignity taken from him so young is heartbreaking. What makes it even more devastating is the complete lack of recognition or support for younger-onset dementia in New Zealand.
The current health and social systems are built entirely around dementia beginning at 65. But dementia does not wait for retirement age. For a fast growing number, like Kevin, it begins decades earlier when they still have mortgages, jobs, responsibilities, and families depending on them. He is suffering from what is effectively an “elderly person’s disease,” yet he is too young to access most benefits.
Currently, younger-onset dementia patients are treated as part of the elderly mental health system, which is not designed for their unique needs. It seems fundamentally wrong that people in Kevin’s situation are not recognised as a distinct, independent age group requiring their own pathway of care and support.
System Failures We Are Facing
People under 65 with dementia fall through every gap.
Health services tell them they are “too young.”
MSD tells them they do not qualify for support designed for older adults.
Work-based supports cannot apply because they are too impaired to work.
Families are left carrying the entire care and financial burden.
There is no national pathway or consistent standard of care for younger-onset dementia.
“This is not simply a policy oversight — it is a major health inequity.”
Our Financial Reality
I am 54 and working full-time, earning $1,224 before tax per week. The only support we receive is $94 per week. This does not even cover groceries, let alone rent, medical appointments, transport, or the care needs that increase month by month.
Younger-onset dementia destroys a household financially within months, while the patient becomes completely dependent.
What We Need
I respectfully request that you consider urgent action on the following:
A dedicated care pathway for younger-onset dementia, especially FTD and BvFTD.
Specialist support services for under-65 patients, recognising the behavioural, cognitive, and safety risks unique to FTD.
Immediate access to appropriate financial assistance, acknowledging the total loss of income during prime working years.
National clinical guidelines for diagnosis, treatment, and management of BvFTD.
Integrated support across Health and MSD, so families are not passed endlessly between agencies that cannot assist.
Recognition of BvFTD as a degenerative, terminal neurological disease, requiring early and ongoing care.
New Zealand needs to recognise this illness for what it is:
Cruel.
Fast-moving.
Devastating.
Life-changing for everyone involved.
This is not just our story. Many families across New Zealand are living the same nightmare with absolutely no government support that reflects their reality. We urgently need leadership, compassion, and system-level change.
Thank you for taking the time to read this. I write not only for Kevin, but for every New Zealander facing younger-onset dementia without recognition, support, or a pathway to care.
Kind regards,
Jacqui Sawford
(Published with consent of Jacqui Sawford)
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.