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🤝 November is National Family Caregivers Month, and Caregiver Action Network is marking the occasion with free webinars, tools, and resources for the 63 million Americans caring for their loved ones.

💔 Actor Tom Skerritt, best known for his roles in Top Gun, Alien, and Steel Magnolias, has died at 93.

💰 The CDC awarded $4.58 million to the University of Minnesota to expand programs and resources supporting families caring for loved ones with Alzheimer's and other dementias.

At 23, most of us are thinking about a first real job, questionable dating decisions, and rent. Ansel Dow was thinking about how much time he had before dementia. He'd learned he carried a disease-causing variant in the MAPT gene, linked to frontotemporal dementia (FTD). His younger brother, then 18, had tested positive, too.

"I remember dissociating in the doctor's office," he told Gray Monster. It would take years to absorb what the results meant.

The variant runs through his mother’s side. She grew up in Pittsburgh, one of nine children in a big Irish Catholic family. In 1989, her older sister Christy, then 36, started acting strangely. The dishes piled up. The water bill went unpaid until the toilets stopped working. But she could still hold a normal conversation.

Doctors said depression, then schizophrenia. It took eight years to land on the real answer: in 1997, at 44, Christy was formally diagnosed with FTD. By then a second sister, Mary, was showing the same signs. FTD changes behavior, judgment, empathy, and personality before it ever touches memory. People stop managing their lives without any sense that something is wrong.

Researchers eventually pinpointed the MAPT variant in the family, and relatives began recognizing the same changes in earlier generations. Ansel was 12 or 13 when his own mom started to change. She stopped picking up after herself. She grew less responsive. The warmth between them faded. "I recall a distance, an apathy," he said.

His parents separated when he was in ninth grade, and he remembers feeling relief when his mom moved out. He didn't yet have language for what was happening. In his sophomore year of college, she lost her IT job at a school district. He'd seen it coming, but as long as she was working, he could tell himself she was managing. Now came harder questions about money, independence, and who would care for her. Her partner, Tim, took on much of that. Ansel is deeply grateful, both for Tim's care and for the room it gave him to grow up.

The family's involvement in FTD research eventually brought Ansel to the Mayo Clinic. He chose genetic counseling and testing while in college because he wanted to know what was coming. The results arrived shortly after, when he was 23.

For his family's variant, a positive result means an extremely high likelihood of developing FTD, often in midlife. He has no diagnosis. He lives with the knowledge that one may be coming, and it has shaped his choices about work, graduate school, money, and whether to have biological children. Each child of a carrier has a 50% chance of inheriting the variant. At 30, Ansel had a vasectomy. When the clinic asked why, he said he didn't want kids, which wasn't really true.

There have been years of therapy, hard days, and conversations that don't come easily. He thinks about long-term care and how to pay for it. He hasn't chosen a future caregiver, and he doesn't want to spend every day planning for an illness he doesn't have.

"I still want to treat every day as something that's expansive and filled with possibility," he said.

That means making art, taking walks, seeing friends, and sometimes letting an email go unanswered. It also means finding other families who know exactly what he's facing. Through Cure MAPT FTD, Ansel advocates for research and treatments and encourages families to share their stories and connect with researchers. In a patient population this small, finding each other matters.

He points to cancer as a model. Scientists have built targeted treatments for specific cancers, and he hopes FTD research can follow the same path. There is no cure for MAPT-related FTD today, and clinical trials guarantee nothing. Ansel is hopeful anyway, and families like his are what make progress possible.

His family is featured in Robert Kolker's new book, The Vanishing Family. Ansel took part because he knows how isolating it is to live with a disease no one talks about. "We have carried [this] alone for so long," he said.

Asked what he hopes people remember about him, he didn't mention research or advocacy. He talked about his friends: the people who love him, who show up, and whose care he trusts won't disappear if his health changes. Ansel knows more about his medical future than most of us ever will. He's working to change it. In the meantime, he's making sure there's plenty of life to live.

Follow Ansel on Instagram at @anseldow.

If FTD runs in your family

No poll this week.

We’re saving your clicking energy for something bigger.

Soon, we’re launching the survey for the inaugural American Caregiver Sustainability Index, created with experts from the American Customer Satisfaction Index.

We want to understand how sustainable caregiving actually feels right now, what’s making it harder, and what needs to change. And we promise: it should take considerably less time than sitting on hold with your insurance company.

More soon.

You said it. This week’s submissions.

"Dad finished radiation treatment and he wanted to make the mesh mask into a costume."

"Been talking to my husband and my MIL like our home is a kindergarten classroom - lol!"

"Rollercoaster of med changes, long lines, and a crabby mom."

"My mom had a memory lapse and worried all of the older relatives who are now in touch with me and telling me what to do. Oof."

"Mom is questioning the $100 we spend on a companion for her, once a week. But it's so worth it!"