A young FTD caregiver named Lizzie discussed the grief, uncertainty, and unexpected responsibilities she faced as she cared for her father — all while navigating the natural changes of young adulthood — in a recent interview with “My Life With Dementia,” a podcast produced by the organization Dementia UK.

When Lizzie graduated from college, she moved to London to begin her career as a product developer in the fashion industry. Her father, Rob, had begun to act uncharacteristically, but the family did not think much of his changing behavior until he got lost driving during a family vacation in Canada. Lizzie and Rob broke down, recognizing that something significant was happening. But given’s Rob relative youth, the family did not consider dementia until he was diagnosed when Lizzie was 25.

Seeking Support

As Rob’s condition deteriorated, Lizzie became his part-time caregiver to help her mother. FTD caregiving, combined with her budding independence and career, put a lot of pressure on Lizzie, and she said she did not have the necessary supports to help her manage. “There is support for children and support for older adults,” she said, “but [not] for young adults … especially since they likely [don’t] live at home.

“I struggled in my twenties trying to find support groups for dementia,” she added. “I remember calling up the GP or calling [support groups] in London, saying, ‘Can I come along? I … need support,’ and I was turned away from them all because I didn’t have dementia, and I wasn’t bringing my dad.”

Eventually, Lizzie stumbled upon a solution to provide support for other young people while also helping herself, and it came in a surprising way.

Helping Others Helped Her

Rob’s FTD caused him to stare at people with an empty, unrelenting gaze that strangers could interpret as aggressive. After several unsettling encounters, Lizzie created a t-shirt that said, “Sorry for staring. It’s just my dementia.” When Rob wore it, the family saw an immediate and positive change — strangers who read the t-shirt showed compassion and offered him help.

Recognizing the value of the shirt’s message, Lizzie started “This is Dementia,” an Instagram-based social enterprise that aimed to raise young-onset dementia awareness. She also sold graphic t-shirts, with all proceeds supporting an organization that provides nursing care for families affected by dementia.

“I created my own little bubble of support that people [could] come to,” Lizzie said. In the process, she developed her own support.

Rob died in spring of 2024, eight years after being diagnosed with FTD. Shortly before he died, Lizzie posted on her Instagram account that she was closing her store. “I’ve thought deeply about how I can continue to offer support, guidance, and raise awareness around young-onset dementia. … My goal is to keep advocating for those living with dementia and all who are affected by it. … There’s a lot more to come.”

* AFTD offers a young adult Facebook group for people in their 20s and 30s who have a loved one with FTD; to join, email youngadults@theaftd.org and include the email address you used to open your Facebook account.