Walking the Talk for Dementia

The innovative, adventurous and immersive Camino experience involved people working, researching and living with dementia.

^{GBHI community members and fellow WTD walkers in Santiago de Compostela. Photo by Alex Kornhuber, Atlantic Fellow}

Founded by Global Atlantic Fellows for Equity in Brain Health Fernando Aguzzoli-Peres and Clara Dominguez Walking the Talk for Dementia (WTD) is an innovative and immersive experience involving people working, researching and living with dementia. The program took place in May in Santiago de Compostela, Spain, bringing together approximately 70 participants from almost 30 different nations who embarked on a transformative journey, walking 40 km of the world's most renowned pilgrimage route, the Camino de Santiago. A group of nine Atlantic Fellows from the Global Brain Health Institute (GBHI) at Trinity College and the University of San Francisco, were among the group.

The collective journey was enriched by the invaluable participation of eight individuals living with dementia from the United States, England, Ireland, Namibia, Singapore and Spain. Their personal experiences and insights added a profound depth to the event, fostering a deeper understanding and empathy for the challenges and thriving experiences by those living with a dementia diagnosis.

According to global data from the World Health Organization (WHO), approximately 50 million people worldwide are living with dementia, and this number is expected to triple by 2050. Dementia affects individuals, families, and communities, posing significant social and economic challenges.

The Camino de Santiago holds deep historical and spiritual significance, attracting pilgrims from all corners of the globe seeking self-discovery and enlightenment. WTD embraced this tradition, allowing participants to immerse themselves in the essence of the Camino, but this time with a single purpose: to build a better world for people with dementia.

Iracema Leroi, GBHI faculty member and Geriatric Psychiatrist, Trinity College Dublin, who took the Camino journey said:

'WTD has been a transformational experience of like-minded individuals from all backgrounds, walking, talking and sharing insights. WTD reflects a genuine and equal partnership that has allowed allowing critical knowledge to emerge. It was an immersive transdisciplinary experience furthering the aim of addressing threats to brain health globally; as such, it aligned perfectly with the mission and vision of the Global Brain Health Institute.”

The immersive experience proposed by WTD proved to be an outstanding platform for breaking down hierarchical barriers and fostering a sense of equality among participants. By walking alongside each other, regardless of background or expertise, individuals engaged in conversations about living, working, and researching dementia, promoting empathy, compassion, and meaningful connections.

Participants regarded the event as "one of the most transformative experiences of their lives," impacting them both personally and professionally. The connections and collaborations fostered during WTD continue to thrive through virtual groups, contributing to research advancements and improvements in dementia care across borders.

Irishman Kevin Quaid, living with Lewy body dementia, described his experience as a transformative journey:

"It was a trip of a lifetime, a pilgrimage. Something in my wildest dreams I could never imagine happening. Five years ago, they were getting me ready for a wheelchair, and then this amazing thing happened. For me, it was a genuine miracle, and no matter how bad my Lewy Body Dementia gets, I may lose my memory, but I will never lose the feeling and the love I felt on this once-in-a-lifetime inner voyage with some of the most beautiful, amazing people the world has ever seen."

Fernando Aguzzoli-Peres, Co-founder of the WTD project and Atlantic Fellow for Equity in Brain Health at GBHI, said:

"We need to demonstrate that dementia is not the end, and that it is possible to experience joyful moments, as long as society adapts to support individuals living with dementia, rather than expecting them to conform. Walking the Talk for Dementia serves as a powerful example of how this transformation can take place."

More Information 

• Read Iracema Leroi's Walking the Talk for Dementia walker's diary.
• Visit the Walking the Talk for Dementia website.