Photo credit: Max Schulte.

Reflections from Global Atlantic Fellows attending Walking the Talk for Dementia, an initiative led by Global Atlantic Fellow for Equity in Brain Health, Fernando Aguzzoli, and organized by Instituto Vovó Nilva and Crônicos do Dia a Dia (CDD) Brazil. A number of other Global Atlantic Fellows were able to participate with support provided by the Atlantic Institute.

The recent Walking the Talk for Dementia event in Santiago, Spain, was an extraordinary and inspiring gathering that united individuals impacted by dementia, healthcare professionals, researchers, and advocates. Embarking on a shared journey along the Camino de Santiago de Compostela, participants experienced a profound sense of collaboration and purpose, leaving an indelible mark on their lives and highlighting the transformative power of connections and collective efforts in the fight against dementia.

Strength in Diversity and Inclusivity

Walking the Talk for Dementia created an inclusive space where individuals with diverse backgrounds and various experiences came together with a shared passion for dementia care and advocacy. Despite our differing backgrounds, we joined forces which ensured that discussions and decisions were inclusive and reflected the needs and perspectives of all participants. This emphasis on diversity fostered an environment that encouraged vulnerability, enabling us to better understand and address the challenges faced by those living with dementia.

The Power of Personal Experience

One of the most profound aspects of the event was the transformative power of personal experience in driving change. Each participant brought their own story, their personal journey with dementia, or their connection to someone affected by the condition. The exchange of personal narratives created a deep sense of empathy and understanding, facilitating meaningful problem-solving discussions. We discovered that by sharing our experiences and embracing our vulnerabilities, we could inspire and support one another, ultimately leading to remarkable outcomes.

Inspiring Advocacy and Resilience

During our journey, we encountered extraordinary individuals who exemplified the strength and resilience required to navigate the challenges of dementia. For example, Garcia and Joaquina, both living with dementia, became advocates in Spain. Despite Garcia's diagnosis of mild cognitive impairment at the relatively young age of 58, Garcia remains steadfast in his commitment to caring for his 93-year-old mother, who is living with dementia. Similarly, Des, diagnosed with Lewy Body Dementia six years prior, refuses to allow his condition to define his life. Instead, he chooses to live each day to the fullest, dedicating himself to his passions and actively raising awareness about dementia. Valli, a pillar of unwavering support for Des, has emerged as an advocate for his rights, entitlements, and the creation of a truly inclusive society that embraces and supports individuals living with dementia. Their unwavering spirit inspired us all and highlighted the transformative impact of personal advocacy.

The Bonds Forged Along the Camino

Walking in unison along the Camino, we discovered a profound connection that transcended language barriers, cultural differences, and personal backgrounds. Deep bonds were forged beyond words as we shared the pilgrimage with fellow participants. These bonds became the foundation of our shared strength, amplifying our united voice in the fight against dementia.

The moments we experienced along the way were both joyful and poignant, serving as powerful reminders of the strength of community and compassion in our journey. Each step we took together reinforced our resolve and fueled our commitment to making a lasting impact on the lives of those affected by those living with the condition.

In these moments of connection, we glimpsed the transformative power of a united front against dementia. We realized that our individual efforts, no matter how dedicated, were magnified and strengthened when we joined forces. The shared experiences and the bonds we formed reminded us that we are not alone in this fight. Together, we can breakdown barriers, challenge stigmas, and work towards a future where dementia is better understood, supported, and ultimately prevented.

A Needed Shift

Shifting from traditional academic conferences to immersive experiences like the Walking the Talk for Dementia event holds immense significance in the realm of dementia advocacy and care. Through first-hand encounters and interactions, participants are able to develop a deep sense of empathy and compassion, gaining valuable insights that go beyond what can be conveyed through academic presentations alone. Immersive experiences humanize dementia by showcasing the faces and stories behind the statistics, creating a stronger emotional connection and fostering a genuine desire to make a difference.

Moreover, Walking the Talk with Dementia promotes the active involvement of people with dementia in decision-making processes. By providing a platform for individuals living with dementia to share their perspectives, voice their needs, and contribute to discussions, the events ensure that decisions are made with their best interests in mind. This inclusive approach recognizes the inherent value of their lived experiences and empowers them to play an active role in shaping policies, care practices, and support systems.

A Catalyst for Change

As we continue on our respective paths beyond the Camino, we carry with us the memories of those shared moments of solidarity. They serve as a constant reminder of the significance of community, empathy, and compassion in our pursuit of a world where dementia is better understood and supported. We will channel this collective energy and continue collaborating across disciplines, and borders, knowing that our unified efforts are the key to driving real change.

Walking the Talk for Dementia was not merely a physical journey but a profound testament to the strength of the human spirit and the transformative power of collective action. It reinforced our belief that together, we can make a difference and create a brighter future for those living with dementia. The event fostered innovative thinking, collaborative problem-solving, and the sharing of knowledge and expertise by bringing together individuals from different backgrounds and disciplines. The diversity of perspectives generated a synergy that enhanced the impact of our collective efforts. This event served as a catalyst for change, reminding us that to tackle the complexities of dementia, collaboration is essential.