Kevin and Jacqui Sawford who have seven children and nine grandchildren are facing a future where Kevin has a progressive, life-shortening rare form of dementia. Photo / Brydie Thompson.
When Pāpāmoa man Kevin Sawford began showing subtle behavioural changes, his family never imagined dementia could be the cause.
“He’s just 55 years old, and a few short months ago was diagnosed with behavioural variant frontotemporal dementia,” said his wife, Jacqui Sawford.
The rare, young-onset form of dementia, known as bvFTD, affects personality, behaviour and memory. It is progressive, life-shortening, and has no cure.
Jacqui said she remembered watching an interview in April with retired Hollywood actor Bruce Willis’ wife about his FTD diagnosis.
“I remember thinking, ‘That’s Kevin.’ Those words have never left me.”
Two days later, the bvFTD diagnosis was made.
“We were left shocked and heartbroken. Suddenly everything made sense,” Jacqui said.
She said Kevin is the centre of a big, loving family, and would always lend a hand, share a laugh, and bring warmth into the lives of those around him.
“To see dementia slowly change the man we love so dearly is heartbreaking.”
Jacqui said the earliest signs of bvFTD began about four years ago.
“At first, we put it down to a midlife crisis,” she said. “He started avoiding work, making up stories that sounded completely real, and talking about things as if they were his own memories.”
Later, when Kevin’s behaviour became more uncharacteristic, Jacqui suspected depression.
“I got him into a men’s group and arranged a phone screening for depression. He passed, and they found no concerns. This pattern continued for around three years.”
In April, Kevin failed a cognitive test while trying to renew his driver’s licence. A medical referral revealed severe frontal lobe atrophy, prompting more urgent assessment.
“There’s a vacant look in his eyes now,” Jacqui said. “Sadly, the beautiful husband, dad, brother, and friend we know is slipping away right before our eyes. This disease steals – and it never gives back.
“People don’t know dementia can strike in the prime of life. Their brain is dying, but no one realises.”
She advised people not to take it lightly if they notice a “massive change in someone’s personality or behaviour”.
“BvFTD hides behind so many faces – depression, stress, burnout, even a midlife crisis.”
She said Kevin was not even aware of his condition.
“We’ve only got three to five years left with him. The frontal lobe is care, love, behaviour – and that’s gone. He takes things literally, doesn’t laugh, and has tremors at night.
“In its cruelty, this disease has taught us grace, patience, and love. It’s stolen so much, but it’s also given back a sense of respect, dignity and his mana.”
Jacqui, 54, works as a support carer for people with disabilities.
Kevin has lost his job and his driver’s licence, stripping away his independence and sense of purpose.
“Now, much more of the daily responsibility falls to me.”
With no KiwiSaver, the couple launched a Givealittle page to help cover the cost of Kevin’s care.
As Jacqui juggles caring for Kevin and paying the bills, she is also calling for change.
She wrote to the Ministry of Social Development (MSD), highlighting a lack of support for those facing early medical retirement.
“There are no dedicated supports or entitlements for people like Kevin,” she said.
“I’m the sole breadwinner, earning $1224 before tax per week. We receive only $94 in additional support.”
With rent, petrol, power, phone and groceries to pay for, they’re left with around $27 a week.
“Our financial stability is severely impacted,” Jacqui said.
“It feels unjust. Kevin worked hard and paid taxes his entire adult life. But we’re ineligible for most assistance.”
MSD’s client service delivery group general manager Graham Allpress said the ministry is working with the couple to ensure they receive all entitlements, but eligibility is limited by legislation.
“The legislation does not give MSD discretion to grant [NZ Super] by exemption to anyone who does not meet eligibility.
“To qualify for NZ Super, people must be over 65,” he said.
“It may be possible to access KiwiSaver savings early due to medical hardship.”
A household without children earning more than $1211 before tax per week would not be eligible for the Supported Living Payment.
The ministry had recommended the couple apply for the Disability Allowance and was waiting to hear back about that application.
Bay of Plenty MP Tom Rutherford said he was meeting with Jacqui to discuss what support might be available, and to advocate for them.
“Jacqui and Kevin’s situation is heartbreaking,” Rutherford said. “Kevin’s diagnosis is a devastating condition.”
Minister of Social Development Louise Upston acknowledged a letter Jacqui wrote.
“While I can’t comment on individual circumstances, I offer my sympathy … While there are no current plans to review the policy, I have asked officials to update me on what supports are currently available from MSD and other agencies.”
Rosalie Liddle Crawford is a multimedia journalist with a background in medical science, holding New Zealand qualifications in immunohaematology and medical microbiology.