Book Title: Stories of Living Well with Dementia

Book Description

The stories we most often hear about living with dementia are grim reminders of inevitable decline and loss. They perpetuate stereotypes of incompetence and reinforce stigma around dementia. In our work, we seek to create and share stories that demonstrate strength and resilience in living well with dementia to the end of life. This resource contains three illustrated storybooks that have emerged from an innovative research project at the University of British Columbia designed to understand what it means to live well with dementia to the end of life.

Co-created by a collaborative team of researchers, artists, and care partners, the storybooks feature composite characters developed from in-depth interviews with 35 people living with dementia and their care partners. Daniel, Inez, and Mac are fictional, but their feelings, motivations, struggles, and triumphs are authentic. Their stories reflect participants’ real experiences, highlighting both shared themes and the rich diversity of their journeys and priorities.

We compared key aspects of participants’ journeys—who they live with, what they value most, what they fear, their strategies for overcoming struggles, and their thoughts on end of life. From there, we built three main characters with different family structures, socioeconomic circumstances, geographical contexts, and diverse racial and gender identities. Then we placed them in story arcs that culminate in three different end-of-life scenarios, illustrating how people’s visions for their ideal end of life can differ significantly, and how friends, family, and care partners respond to their choices.

The Bucket List follows Daniel and his wife May as they tackle their dreams together. Daniel meets characters who help him accept and appreciate his life more deeply along the way. My Bird Life features artist Inez, who maintains her sense of agency and dignity while learning to accept help, ultimately exploring physician-assisted dying. The Music Plays On introduces Mac, a 77-year-old musician who finds friendship and reinvention in his care home.

Combining photography with whimsical illustrated characters, the visual style conveys the experience of being in a real place yet feeling disconnected, as if existing in a separate reality. These stories are intended for anyone living with dementia, care partners, families, healthcare practitioners, and the general public. They provide an educational resource to stimulate intergenerational conversations, support advance care planning, and foster understanding of the social, emotional, and spiritual dimensions of living well with dementia to the end of life.