Wife's warning after husband diagnosed with rare dementia bvFTD

Jacqui Sawford spent years watching her husband Kevin change in ways she couldn't name. The man who had been steady, affectionate, the kind of father their seven children climbed on the moment he walked through the door—that man was withdrawing, making irrational decisions, driving for hours without purpose, drinking more, telling stories that weren't true. She thought he was grieving, stressed, burned out. She didn't know he was dying in the way that matters most: losing himself while still breathing.

They had met as teenagers in Ruakākā, set up by their brothers. Over decades they built a loud, full life together. After four children, Jacqui thought they were done. Kevin wanted more. She said, "Why don't we get a cat instead?" But she saw how much he loved being a father, saw it in his face, and couldn't say no. After a vasectomy reversal, three more children came. "Kevin was just gleaming," she remembers. Seven kids, nine grandchildren eventually. A man who showed up.

The changes started around the pandemic. Fabricated stories. Endless driving. Increased alcohol use. Irrational decisions. Compulsive phone behaviours. Isolation spreading through the house like a stain. The strain on the family became unbearable. Their children worried about their mother. Jacqui made herself a promise: she would give Kevin until Christmas. If there were no answers by then, if he didn't change, she would leave. She couldn't keep living that way. She was drowning too.

She tried everything. Organized holidays. Encouraged him to join men's support groups. Kept their life together while fear gnawed at her. Then came the day Kevin drove toward Whangārei to visit his mother and didn't come back. He wouldn't answer her calls. She tracked him on her phone, terrified, and called the police. They found him disoriented, confiscated his licence. That crisis opened the door to answers.

Cognitive testing. Blood work. Scans. In August 2025, Kevin was diagnosed with bvFTD—behavioural variant frontotemporal dementia. Unlike Alzheimer's, which typically steals memory first, bvFTD attacks the frontal and temporal lobes, the parts of the brain that govern personality, judgment, self-control, empathy. It changes who someone is. And the person changing rarely knows it's happening. There is no cure.

"Receiving the diagnosis was devastating, but it also finally explained the years of confusion," Jacqui says. "I'm so pleased I pushed for answers. Imagine if I had left him." A month after diagnosis, Kevin was medically retired. Nine months later, he needs help with meals, with most daily tasks. His life runs on routines and supervision. Jacqui works as a community caregiver when she's not caring for him at home.

"I'm grieving someone who is still physically here," she says. "That is one of the hardest parts." But she remains committed. "My life is just making sure Kevin is safe, that he feels comfortable and that his dignity is intact. I truly believe this is what I am supposed to do. It's what I am—his wife and sadly now his carer too."

She shares their story not for sympathy but as a warning, a map for others lost in the same fog. If it helps another family recognize the signs earlier, push for answers, not give up on someone they love because of drastic personality changes, then the telling matters. That's what she hopes. That's what she's asking for.