When dementia took her husband, she took on his story

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.’

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, about why frontotemporal dementia is difficult to diagnose. Dickerson is the director of the Frontotemporal Disorders Unit at the Massachusetts General Hospital in Boston. He sees patients referred by other doctors, often to confirm a diagnosis or, in some cases, to unwind years of misdiagnoses. His kind manner and trust-inducing smile come across even on a Zoom call – the kind of doctor you’d want. But his expertise lies in frontotemporal dementia, a fatal disease that progresses over time, as short as three years or as long as 12. Frontotemporal dementia has no cure and no proven treatments to slow its progression. In that sense, he is the kind of doctor you hope you’ll never need.

About 15 per cent of cases of frontotemporal disorder are inherited, leaving the remaining 85 per cent without a clear cause, according to Dickerson. He studies the familial forms of the disease. The hope is that knowing where to ‘shoot the arrow’ will help researchers develop targeted treatments for people with the inherited version, and suggest medical strategies for the unknown or sporadic types.

‘We’re on the brink of personalised medicine for FTD – treatments tailored to fit a person’s unique biology,’ he said.

When executive functioning is lost, a person may become disorganised, inflexible or impulsive

Ask him to explain frontotemporal disorders, and he begins with a taxonomy lesson, categorising different symptoms of the disease according to which lobe of the brain they begin in – either the frontal lobes located directly behind the forehead or the temporal lobes that sit behind the ears, like a set of headphones.

Mike had ‘behavioural variant’ frontotemporal dementia that began in the right side of the frontal lobe, according to his medical records.

As the disease gets worse, the frontal lobes slowly atrophy (or shrink), and circuitry to other parts of the brain becomes faulty as they clog with abnormal proteins. This disrupts cognitive processes such as executive functioning, which helps us plan, organise and pay attention. When executive functioning is lost, a person may become disorganised, inflexible or impulsive. Atrophying frontal lobes may also trigger repetitive behaviours – like incessant listening to Harry Potter audiobooks – or obsessions such as an unstoppable desire to eat sweets.

Mike’s loss of interest in the world of Katie and their son tracks to a loss of metacognition or insight. Metacognition – our sixth sense – lights up the dark road ahead, helping us assess danger. It’s our inner mother warning us ‘Don’t do it.’ A decline in metacognition can lead to a fading of our emotional and social engagement and our ability to see others outside of ourselves.

Katie sees the loss of partnership, when we are no longer being seen by our special other, as the core disaster of frontotemporal dementia for families. Her work with caregivers, she tells me, recasts their role from invisible player to the ‘star in their own epic tale’, with ‘being there’ as the ultimate expression of love.

‘They don’t forget things like an Alzheimer’s patient would – but their personality is completely different’

Frontotemporal dementia is still widely misunderstood, even among medical professionals. One cause of diagnostic confusion is that the early symptoms of Alzheimer’s dementia – the most common cause of dementia in older adults – are different from frontotemporal dementia. Alzheimer’s usually begins in the back regions of the brain, with the first signs often emerging as memory and word-finding problems.

‘With FTD, they don’t forget things like an Alzheimer’s patient would – but their personality is completely different,’ Dickerson said. He added: ‘FTD doesn’t fit the textbook definition of dementia that most doctors learned in medical school.’

Some of the diagnostic misadventures experienced by patients and families, he observes, are due to the use of screening tests that are structured to identify the memory loss seen in Alzheimer’s.

In frontotemporal dementia, memory is preserved, at least in the early and middle stages of the illness: patients might be able to master a crossword puzzle but refuse to stop working on it to help prepare the family dinner.

To get the full story, he interviews the patient and an ‘informant’, usually a family member, partner or close friend, since they are most likely to notice uncharacteristic behaviours as signs of something amiss. Without this perspective, the chances of missing a brewing frontotemporal disorder are high, as the patient, due to deteriorating metacognition, will tell you that ‘everything is fine.’

Katie was close to her mother, Diane. They spoke on the phone every day. She became a sanctuary for Katie, now a mother herself, as Mike’s interest in fatherhood slipped away. The day Katie received the news about Mike’s diagnosis, her parents were there, sitting in the doctor’s waiting room.

Katie remembers that day as the last time she saw her mother. She watched her parents step into the elevator down to the lobby as she followed Mike on his preferred route, the stairs. Four days later, her mother died in her sleep of a heart attack at 58.

Her mother’s death was the moment Katie realised there was no return to life as it had been. She would have to figure out her own life first, if she was going to support Mike through what lay ahead. With her mother gone, she left her job in New Hampshire and moved in with her father, newly diagnosed with Alzheimer’s, in Massachusetts. In the midst of the 2008 financial crisis, her home in Center Barnstead went into foreclosure, making it unsellable. She also lost her health insurance, which she had through Mike’s job. In the following months, Katie was swallowed by a bureaucratic vortex of securing medical insurance for her child and Mike. She applied for food assistance for the baby.

‘This horrible thing happened to me, and the world just kept turning, like it didn’t matter’

By the time Mike died at 33, Katie had already begun shaping her grief into something structured. At rock bottom, she began to build. In the summer of 2012, a few months after he died, Katie started volunteering for the Boston-based arm of the Association for Frontotemporal Degeneration. That role evolved into leading a support group and providing community education. In 2018, this work turned into a position at Mass General.

I asked Katie about how she was doing after years of caregiving, for Mike and then for her father, all while raising a child on her own. Why step back into the breach of dementia caregiving, this time as an advocate?

‘At first, the work was about finding my voice after years of isolation and loneliness,’ she replied. ‘This horrible thing happened to me, and the world just kept turning, like it didn’t matter.’ She wanted to tell her story.

But then it became about diving in, learning everything she could about how to help families living with dementia caregiving. ‘Some people want to leave a caregiving experience in the past,’ she said. Katie, meanwhile, wanted to fight, and pay things forward.

Katie’s work at Mass General is a mix of science communication, systems navigation and pastoral care. She lectures to national groups about family caregiving, sometimes to audiences as big as 1,000. She trains clinicians. She moderates forums where caregivers get to say out loud: ‘This sucks.’

‘When caregivers are part of our programme, they don’t need to Google to get answers,’ she said.

She also sits on advisory panels trying to improve the caregiver experience: fighting for supports and recognition, and for more rigorous training for neurologists.

Katie is unapologetic. She knows the story of Mike’s illness is compelling, and has learned to use it to bring attention to the caregivers behind the diagnosis.

‘I know we have to wait for science to cure Alzheimer’s and other dementias, but public policy and money could fix the problems that caregivers are afflicted by now,’ she told me.

He tumbled down the stairs and lay on the floor, only to see his wife step over him to ‘top off her coffee’

In 2020, the Older Americans Act was reauthorised by Congress and included, for the first time, provisions that allowed patients under 60 with dementia to access support programmes that they previously were locked out of because of age. Katie was co-chair of the National Alzheimer’s Project Act (NAPA), which pushed this legislation forward.

She thinks that this updated law is game-changing for caregivers of patients with early onset dementias, and wonders how different things would have been for her if Mike had had access to caregiver services – and also for her father, who was diagnosed with Alzheimer’s at 58.

Katie invited me to sit in on a Zoom support group for caregivers of people with frontotemporal dementia. She routinely allows clinicians to sit in as learners, encouraging members to be the teachers, in a role-reversal. ‘It helps some of them find meaning to their experiences to share this way,’ Katie said.

The group, the largest of its kind in the country, is co-led by Katie and a colleague from Mass General. I watched Katie navigate the meeting with the calm of a pilot in the midst of an emergency landing, as members toggled between laughter and despair.

‘If you want to know what they’re up against,’ she said, ‘listen to the caregivers!’

Dark humour abounded as some recounted their bleakest moments of the ‘journey’, as many seasoned caregivers referred to it. One gentleman described how his wife ‘lost her nouns’, meaning she could no longer name objects. He would hold up two boxes to help her choose her morning cereal, and she would point to her choice. Another man recalled the moment he realised he needed a backup emergency plan: after tumbling down the stairs, he lay on the floor, only to watch his wife step blithely over him on the way to the kitchen to ‘top off her coffee’.

You are not imagining this. It is not your fault. No, he won’t get better. But you might

Katie sees internet-based support groups as the single biggest technology innovation for caregiver support: exponentially expanding people’s access to information and strategies to support caregiving.

‘People are trapped at home, oftentimes, or live in rural or remote places,’ she said. ‘But most people have a smartphone where they can log on and watch a webinar.’

Members nodded in agreement when one commented that the group ‘had saved my life’. But, mostly, there was relief at having found a space where people ‘get it’. A place where they understood the terrible years before a correct diagnosis, years of not knowing what was wrong, of being blamed, of feeling like they weren’t strong enough. They understood the weight of reconciling entrenched anger, hurt and resentment.

What Katie navigates for the group is not just information, but translation. An existential formula for survival. You are not imagining this. It is not your fault. No, he won’t get better. But you might.

Since FTD often starts with impulsivity, apathy and compulsive habits (in younger people typically, ages 45 to 65), patients can be misdiagnosed with mental health, drug or alcohol problems. For young families, the fallout can be life-altering. Jobs are lost. Children are confused. Partners can be marginalised or gaslit by their own communities. Family members sometimes report that their loved one’s ‘BS detector’ is dysfunctional, making them vulnerable to financial scammers and other grifts.

The neurologist Richard Ryan Darby, who runs the Frontotemporal Disorder Clinic at Vanderbilt University Medical Center in Tennessee, is fascinated by what happens when brain changes lead to brushes with the law or outright criminality. I spoke with him about his work, which sits at the blurry edge where neurology and psychiatry meet. Darby uses MRI scans to study how different parts of the brain talk to each other. In healthy brains, these connections are balanced. But in people with frontotemporal dementia – a disease that strikes at the control centres for behaviour and judgment (remember metacognition) – this balance can fall apart.

Darby’s theory? When one part of the brain goes offline because of damage, other regions start to take over, sometimes leading to odd or harmful behaviour, like breaking rules or even committing crimes.

Her funny, nerdy librarian husband became ‘zombie-like’, as if he had been body-snatched by aliens

One of the hardest parts of his job is when his patient ends up behind bars, and he can’t reach them directly. ‘It’s always a struggle to get the patient’s information to the jail medical team,’ he said. ‘I’m never convinced that my patient is going to tell them about their diagnosis.’

I recently spoke with Jill Rovitzky Black, whose ex-husband had frontotemporal dementia. His gruesome murder, while living in a homeless shelter, was widely covered in the news media a few years ago. Jill recounts the darker side of frontotemporal dementia, one that can subject a family or caregiver to intolerable threats. Jill describes her funny, nerdy librarian husband becoming ‘zombie-like’, as if he had been body-snatched by aliens. He gave away thousands of dollars of their savings to ‘internet lovers’, eventually ending up in jail for bank fraud. Jill paid for lawyers and bail but, ultimately, she needed to protect herself and her teenager. She left their 32-year marriage. Jill’s story, like Katie’s, is marked by legions of doctors not listening to her cries that something was strangely wrong, and the diagnosis of frontotemporal dementia was ultimately made too late – on autopsy.

Darby’s advice to law enforcement is clear: ‘If a law-abiding citizen commits a serious crime over the age of 50, consider the possibility of a brain disorder – and get a specialist involved.’

The day after I met Katie at Tatte, she invited me to attend the Rare Disease Day in Boston, organised by the Massachusetts Biotechnology Council (MassBio). The event gathers a mix of leaders: biotech executives, scientists and policymakers all in one place, laser-focused on finding cures. Except today they are gathered to listen to stories. The agenda leans on words like ‘hope’ and ‘understanding’, with talks delivered by patients and families, the common thread being the years of misdiagnosis.

I watch Katie work the room. She knows people’s backstories like others know recipes. Katie is singular in this environment, hoping to educate the group about the importance of family caregiver support. I snap a picture of her and the former CEO of MassBio. He brightens as she asks him about his family – about his son, whose life was saved by a new drug treatment for cystic fibrosis.

It’s about easing the everyday hassles for caregivers so they have the space to care for their own health

Over lunch, we dive back into the weeds of the caregiver experience and her hope for better policies.

‘The reason why being an advocate is so important to me is because, when I work with families, I see the same problems over and over: the economic impacts on working-age families, the loss of social networks, the negative impacts on the health of caregivers,’ she says.

‘Think of all the policy gaps,’ she adds. No affordable options for respite, or homecare, or adult day programmes that can handle a younger person, to name a few. Medicaid insurance coverage, being a last resort, is only for those who qualify.

Katie nods when I remark that working with families is never about finding silver linings or expecting white-knuckled grit, but about seeking clarity. It’s about easing the everyday hassles for caregivers so they themselves have the space to live and care for their own health. We agree that the full complexity of supporting caregivers can be summed up in one simple action on our part: listen.

Katie interrupts our conversation to take a call. It’s her father’s nursing home. He is now in his 70s with advanced Alzheimer’s. ‘Dad no longer recognises me,’ she says. Then she listens intently, makes a suggestion, and tells them: ‘I’ll stop by after work.’