Walking the Talk for Dementia: A Journey of Unity and Transformation
In May 2023, a special journey took place in Spain. People from all around the world, including countries like Singapore, Brazil, the US, and Namibia, came together for a meaningful reason. We wanted to change the way society sees people with dementia. Despite the diagnosis, challenges, and stigma, we wanted to diversify narratives and demonstrate that people with dementia continue to live meaningful lives when receiving the right support from their families and society. People with dementia, their journey partners, physicians, nurses, advocates, policymakers, and researchers joined forces and met for the first Walking the Talk for Dementia, in Santiago de Compostela, to start their journey on the historic Camino trail, an ancient pilgrimage located in Northern Spain.
Representatives from more than 25 countries across 5 continents met for the first time during a welcome dinner. After taking place at one of the six big round tables, the conversations start. Berrie Holtzhausen, a former minister from Namibia shared how he created a place to provide care for people living with dementia, even though he is diagnosed with dementia while still the CEO for the main organization working with the topic in his country. Lebo Molete, from South Africa, and Temitope Farombi, from Nigeria, jump into the conversation and shared their struggles working with dementia in African Countries, many times intensified by the lack of a word for the condition, and by the cultural stigma associating the diagnosis with religion or fate. Later, when discussing our route for the first day, Kevin Quaid who is diagnosed with Lewy Body Dementia, talked about his preparations for this walk and how excited he and his wife Helena were to finally start.
In the days that followed, we walked through beautiful landscapes and old hills. While we walked about 10 kilometres per day, we shared our thoughts and experiences. We talked about things like special music programs for people living with dementia, and the difference in between policies for brain and mental health, causing disparities in many Latin American countries. We also discussed the challenges of research and dementia, and how often people with dementia are neglected when new research is developed. Every day our walk brought us closer to Santiago de Compostela and to each other. Even though we were tired and sometimes wet from the rain, we kept on walking and talking.
After four days of walking, our adventure came to an end. But it was not the end of the experience, and it proves to be a new beginning only. People who were once strangers now felt a connection not often felt before. As we walked into Santiago, we sang songs that – even though we came from five different continents – we all knew. Making the moment feel even more special. The last two days we shared more stories during a symposium, where people with dementia moderated discussions about research on biomarkers, new medication, and care innovation.
This journey wasn’t just about walking – it showed how strong people can be when they come together. The talks we had and the connections we made will keep spreading, helping people understand dementia better and showing kindness to those who have it.
In October 26th , Fernando Aguzzoli-Peres, Kevin Quaid and Charlèss Dupont will discuss their experience with the Walking the Talk Dementia during the Brain Innovation Days in Brussels, promoted by the European Brain Council. Moreover, we will soon announce the 2024 edition of the event. If you have questions or would like to contribute to our 2024 experience, let us know.
Charlèss Dupont – email@example.com
Fernando Aguzzoli-Peres – firstname.lastname@example.org