It was November 2008, right before the holidays, when the police knocked on Katie Brandt’s door. Mike Brandt, 29, had left their small three-bedroom house in Center Barnstead, New Hampshire, a few hours earlier. He was supposedly meeting a client about his web design business – a side hustle from his high-school teaching job. Katie, also 29, thought this was a lie, but let it go.

Katie feared the knock meant trouble – or worse, that her husband was dead. She remembers the officer saying: ‘We’ve clocked your husband going 90 miles an hour, and we can’t catch him. He stopped at Cumberland Farms, bought beer, urinated on the side of the building, and took off.’

Minutes later, Mike pulled into the driveway, nearly hitting the deck. The officer coolly watched from the door as Mike, a hulking 6’ 3”, stumbled out of the car reeking of vomit, then threw up on the pavement.

Katie didn’t know what to think. His strange behaviour had started during her first trimester of pregnancy, 11 months before that visit from the police. She noticed something was off – Mike didn’t share her excitement about the baby.

At first, she brushed off his indifference as marital, like being ignored by a spouse glued to the game.

But there were the weird moments: the earbuds he refused to remove during her labour, lost in a Harry Potter audiobook while she gave birth; the strange obsession with sweets.

Then Mike quit his teaching job, ostensibly to grow his web design business. But when she checked his phone, she found a slew of unanswered messages from angry customers. His designs, once beautiful, had turned chaotic with ugly fonts and bizarre layouts. Worse, he didn’t seem to notice the drop in quality or care about his upset clients.

There were smaller, stranger things: he started licking food off his fingers at dinner. He stopped brushing his teeth and let his beard grow wild. These weren’t just quirks.

Looking back, it was the police incident that marked the end of the early days of Mike’s illness, when she could still recall how it had been before the intimacy between them was gone.

‘It was like he was drifting far away,’ Katie said. ‘And I couldn’t reach him.’

Katie and Mike at the Saint Anselm College Ball in 2001. Photo courtesy of Katie Brandt

When I met Katie, 45, at Tatte Bakery & Café in Brookline, Massachusetts, she had just finished a long afternoon on Beacon Hill, reciting her elevator pitch to state senators. She arrived for our meeting put together, in business casual, slightly weary from repeating her story.

Katie is tall and lanky with a big, toothy smile. Her voice is warm and even, the kind that draws people in. She greeted me with practised calm, coffee in hand, then pulled up a chair and leaned in close to hear better over the din of voices in the bakery. We fell back into the conversation we had been unspooling for months – about caregivers and the systems that fail to support them, about the meaning of loving someone through cognitive decline.

We had already met each other through a webinar we had co-hosted on family caregiving. She spoke as a national advocate for dementia care; I, as a palliative care physician and consultant to the National Center for Equitable Care for Elders. But I wanted to take our conversation beyond titles and talking points. I wanted to learn how she’d transformed her life, following the slow, devastating unravelling of her husband by a rare, fatal neurodegenerative disease, into a career shaping support structures for others. A path that led her to a position as the director of Caregiver Support Services at the renowned Frontotemporal Disorders Unit at Massachusetts General Hospital in Boston.

She’d suspected all along that ‘something was terribly wrong’ while the doctors shrugged

Katie never sugarcoats her story. She replayed the timeline of events from 12 years ago, which had followed Mike’s diagnosis, at 31, with frontotemporal dementia – an illness that slowly erodes personality, judgment and emotional awareness.

‘It had been two years of misdiagnoses before a doctor finally listened,’ Katie said. She’d suspected all along that ‘something was terribly wrong’ while the doctors shrugged. Depression, they said. Stress. Marriage problems.

When a doctor diagnosed him with severe depression, the medications they prescribed made him sleepy and even more disconnected. She insisted that his psychiatrist order a scan of his brain. ‘Could he have a brain tumour?’ she asked. She remembers attempting to explain to the doctor the reasons for her concerns. But how do you explain that someone’s personality has vanished – when that person doesn’t even notice?

No one listened. Not Mike. Not the doctors. And, as it turned out, that scan was the wrong kind to show signs of frontotemporal dementia.

When Mike tried to fix their washing machine with a butane torch, she knew something needed to change, and fast. Desperate, Katie brought Mike to her father’s doctor, a neurologist at Beth Israel Deaconess Medical Center in Boston.

Katie coaxed Mike into the exam room with strategies that she had honed over the past year and a half. She never commanded him; instead, she made gentle suggestions like: ‘Let’s sit here. The chairs look comfortable.’

It wasn’t long before Mike stopped the interview, shortly after the doctor asked him to name words starting with the letter ‘F’. ‘Fuck!’ Mike yelled and abruptly left the exam room. Katie was left behind, stunned and alone.

‘It’s bad,’ the doctor said to Katie.

Not long ago, I spoke with the neurologist Brad Dickerson, Katie’s boss,........

© Aeon