For many, dementia doesn’t always look like memory loss. For some families, like filmmaker Katie Prentiss’, it starts with stories that don’t quite track, sudden shifts in personality, and a creeping sense that something is deeply off. That’s frontotemporal dementia (FTD)—the most common dementia under 60, and one that upends the rules of caregiving. Katie’s story, and her film Wake Up Maggie, is about what happens when diagnosis forces families into caregiving roles earlier than expected, before systems, and support are in place.

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Before we get into Katie Prentiss’ story, let’s pause on the diagnosis at the center of it: frontotemporal dementia, or FTD. Unlike Alzheimer’s, which is often linked with memory loss and aging, FTD typically strikes younger, usually between ages 45 and 65. It targets the brain’s frontal and temporal lobes, the parts that govern personality, language, and behavior. Instead of misplaced keys or forgotten names, the first signs often look like mood swings, out-of-character behavior, or odd fixations. It’s the most common dementia under 60, frequently misdiagnosed, and for families, it can feel like living with a stranger in your parent’s body.

Before there was a diagnosis came delusions. A man at church who wanted to marry her. Strangers breaking into the attic. A hole in the roof. At first, they sounded almost believable, until they didn’t. It took nearly a year for doctors to land on the truth: frontotemporal dementia, a fast-moving and often misunderstood form of dementia.

Katie Prentiss didn’t plan to become a caregiver in her 30s. Her mom, Maggie, was too young. Katie had kids, a job, and had moved cross-country to Portland. But life, as it tends to do, had other plans. Slowly, then all at once, Katie and her siblings were making appointments with neurologists, cross-checking prescriptions, and watching the bewildering symptoms of frontotemporal dementia (FTD) settle into their mother’s mind.

For Katie and her siblings, that answer only raised harder questions. Her sister stepped in first, bringing Maggie into her home. But caregiving is never a light lift. After a few years, and countless cross-country flights, Katie brought her mom to Portland. By then, the disease had advanced: compulsions, incontinence, a near-total loss of speech. With the help of her husband, paid caregivers, and ElderPlace, Maggie eventually moved into a facility that could handle round-the-clock care. Even then, the weight of it all reshaped Katie’s marriage, her identity, and her understanding of what joy and grief look like when they coexist.

“Joy came in moments,” she says. A coloring page. A laugh over a crooked drawing. A flicker in her mom’s eyes. And the grief? Bathing the woman who once bathed her. Missing her long before she was gone. Hearing, “My grandma had that too,” and realizing people imagined someone twice Maggie’s age.

Years later, after her mom’s passing, Katie understood that her mom had left her more than loss, she’d left her a mandate to live fully. Out of that came Wake Up Maggie, a film that turns grief into story. It’s not a documentary. Not a memoir. Not sanitized for comfort. It’s fiction rooted in the rawest truth: caring for someone who’s vanishing while still alive. Through it, Katie found both freedom and healing. “It’s not a personal confession,” she told us, “but it is therapeutic to say—let’s let this character feel all of it.”

Wake Up Maggie lives in that in-between space caregivers know too well. It’s for the exhausted. The isolated. The ones carrying the weight of love in a body that keeps slipping away. Caring for someone living with FTD? We like AFTD for information and help.

🎬 Learn more and support the film at katieprentiss.com/wake-up-maggie. We did.

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When Bruce Willis was diagnosed with frontotemporal dementia, his wife, Emma Heming Willis left the doctor’s office with nothing but a pamphlet. Out of that moment came The Unexpected Journey, a book she wrote for every caregiver who’s ever felt paralyzed, blindsided, or alone.