Walking in Your Footsteps explores lived experiences of Familial Alzheimer’s Disease, a rare and inherited disease. It’s wide ranging symptoms carry multi-generational impacts. A person caring for a parent with symptoms will question whether they carry the gene and whether they’ve passed it on to their children.

We hosted workshops, facilitated conversations, and co-created art which built new bonds and connections between families and individuals with FAD and clinical staff. We went to the seaside and drew in the waves. Our final artworks were developed in response to learning, sharing, and reflecting together.

Red Lines (petri dish installation) aims to bring scientists and researchers closer to the people whose cells they study. ‘Red’ are the bloodlines that carry the disease as well as the love. ‘Red tape’ is the bureaucracy patients and carers must navigate to access support. ‘Red carpet’ is VIP status in recognition of the contribution that families with FAD make to Alzheimer’s research.

Maze (short film) is inspired by Tamara’s photo of her dad’s maze drawing tradition. His maze offered an analogy for path finding in the face of FAD’s uncertainty, and the struggle against inevitable and shifting tides. This Maze brings joy, fades, is fought for, and ultimately slips away.

The ‘finger print’ maze drawn in the sand is the work of sand artist Rachel Shiamh, who led us in a sand art workshop.

Walking in Your Footsteps is a collaboration between a neurologist Natalie Ryan, artist Briony Campbell, and members of the FAD support group, part of Rare Dementia Support. Dr Natalie Ryan is a neurologist at the Dementia Research Centre at UCL Queen Square Institute of Neurology. For information on FAD, support and research please visit the Rare Dementia Support website. 

You can read more about the initial workshop process in this article.