We walked along the Camino de Santiago — people living with dementia, care partners, artists, researchers, clinicians and policymakers on the same path. We did not separate ourselves into those who “had” dementia and those who “studied” it. We were bodies moving through wind, stone, sound, fatigue, laughter, and conversation. 

 

Very soon, we realized that creativity was not something added to our days. It was the vibration that moved through us. Among us, someone said“Don’t hide away.” And we saw what that meant: knowing when to step aside as noise becomes too sharp, putting on headphones to soften the world, and feeling comfortable in silence when words grow heavy.

 

These were not strategies taught by anyone. They were small acts of trust and invention — ways of reshaping the environment so that each of us could remain present. Creativity also lived between us. Our paces adjusted. Hands reached out. We paused and moved again, listening with our bodies. One of us, living with frontotemporal dementia, gave words to what we practiced: “Being with is far more important than doing to.”Care is something we make together, not something done to anyone. In the art workshop, one of us felt her “bursting dementia brain” nearing a breaking point. Picking up a heart-shaped stone and painting it repeatedly made sense. The layers belonged to her nervous system finding its rhythm. The brush relaxed the breath. The colour brought joy.

 

Later, one of us called that space an “inward pilgrimage.” Shared silence, tenderness, and trust kept us together. The impulse to create — to touch, to shape, to leave a trace — stayed with us. For some of us, it even moved into our skin, through the small shell of the Camino tattooed on our bodies — an embodied memory of having walked, created, and belonged. Walking, singing, dancing, painting, pausing, and laughing together, we learned something simple and radical: living creatively with dementia. When we stay with each other — with eyes, hands, and presence — creativity helps us communicate, beautifully, and we look at dementia with new eyes.