Advance Care Planning

"Being diagnosed at 44 meant I had to think about the person I'd want to be — and who I'd trust to speak for me."

When James was diagnosed with early-onset dementia at 44, everything shifted. He was still working, still independent, but he knew the diagnosis was a countdown — he didn't know how long he'd have before making decisions became impossible for him.

"I wanted to write down who I am while I can still tell the story," James explains. "What activities matter to me. Whether I'd want to move into care. Who I trust to make decisions about my care when I can't. Not because the decline might happen tomorrow, but because I wanted my voice to be heard — even when I can't speak."

He documented his values, his preferences for daily life, and named his wife Sarah as his healthcare decision-maker with clear instructions about what quality of life meant to him. He wrote about his fear of losing independence, but also what would bring him comfort and dignity as the disease progressed.

"Having it all written down takes so much pressure off Sarah," James says. "As the disease develops, she won't be guessing what I'd want. She'll know. And that's a gift to both of us — it means I can be at peace now, and she can focus on caring, not wondering if she's doing what I would have chosen."