Between Night and Day: A Samoan Family’s Journey Through Young Onset Dementia
- admin1356
- Feb 27
- 3 min read
Updated: Mar 7
The signs were subtle at first. Antonia had always been meticulous—clean, organised, house-proud. She would rearrange the sitting room often, but one day, she stopped. And yet, she would insist she had done it.
“She would say, ‘I just cleaned that,’ when we could see it hadn’t been touched,” says Laumata, Antonia's eldest daughter. “That’s when I started noticing something was off.”
At 63, Antonia’s forgetfulness was easy to dismiss, but then she started accusing people of stealing from her. Money, mostly. Her eldest daughter, Laumata, was 24 and juggling work and caring for mum and her younger sister, Momotu, who was just 13 and still in school. Antonia had two older sons; however, they had families of their own and had moved out years ago. So, it was just the three of them living together, and as the symptoms worsened, the weight of responsibility fell entirely on the sisters.
Their mother began wandering at night, slipping out of the house while the world slept. With no one else at home, the sisters split shifts—one staying awake while the other grabbed a few hours of sleep.
“It was exhausting,” Laumata said. “I worked, Momotu had school, but someone had to be awake. If we weren’t, Mum could disappear.”
And then, one morning, she did. In the small window between Momotu falling asleep and Laumata waking up, Antonia was gone. They searched everywhere—Laumata driving, Momotu on foot—before calling the authorities. It was just over an hour of searching before they notified police, but by then, their mother could have been anywhere.
It wasn’t until evening that she was finally found walking barefoot over 5 kilometres from home.
Navigating the healthcare system was another battle. “I didn’t know what to look out for or what to even ask. That made it harder,” she said. It wasn’t until Antonia was admitted to Fraser McDonald Unit that they got answers. By then, she had suffered a stroke. The family hadn’t realised until her face began to droop. Looking back, they suspect she may have had another minor one before that—one they missed because she simply couldn’t tell them.
A diagnosis of early-onset dementia followed. It confirmed what they had feared, but it didn’t make anything easier. Support services were scarce, and most were geared towards the elderly. “There wasn’t much in the way of YOD-specific services. It was straight to ‘older folks’ care,” Laumata said.
Culturally, there were even fewer options. “There may have been a translator somewhere, but we didn’t need one—I translated," she recalls. "But apart from that? No, there weren’t any cultural services that I knew of. Maybe in South Auckland, but we were in Central, and nothing was offered to us.”
For a while, they managed. Antonia attended a funded daycare programme during the day, with Laumata dropping her off before work and picking her up after. It was a routine that worked—until late 2019, when Laumata fell pregnant.
“That’s when I had to make the hardest decision of my life,” she recalls sadly.
Doctors and support workers told her what she already knew: caring for a newborn while managing someone with advanced dementia was nearly impossible. With no clear way to access respite care, she had no choice but to place her mother into full-time care, “I felt like I had failed her," she says- "But I also knew I had no choice."
Antonia has since passed, leaving behind a family that loved her fiercely but struggled through a system that wasn’t built to support them.
“There’s a lot of pressure, especially as daughters, to take it all on. And we do," however she says they need more help, but knows it comes down to funding. "We need more funding for families like mine, because doing it alone? It’s too much.”
Theirs is a story that is a testament to the resilience of caregivers, particularly in Pacific families, who often shoulder the burden alone. It’s a call for better services, greater accessibility, and an understanding that dementia—especially young-onset dementia—reshapes entire families, not just the person diagnosed.
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