GBHI Amsterdam Gathering–Sowing the Seeds of Positive Change

Global Atlantic Fellows Emily Adrion, Didem Öz and Carlos Chechetti reflect on a recent opportunity to connect, learn and explore the interdisciplinary potential of GBHI to improve brain health.

^{Above: GBHI community members at the Special Gathering in Amsterdam. All photos by Jelle Draper.}

Having missed out on the Global Brain Health Institute (GBHI) Annual Conference and so many other in person activities due to COVID-19, Global Atlantic Fellows for Equity in Brain Health from the 2019 and 2020 cohorts had a unique opportunity to reunite, and in some cases, meet in person for the first time, at a GBHI Special Gathering in Amsterdam, The Netherlands, ahead of the Alzheimer's Association International Conference (AAIC) 2023.

It was a time for connecting and learning with our community as we explored how Atlantic Fellows can build and grow from where we are today. New ideas, friendships, and interdisciplinary collaborations blossomed as we gathered in Amsterdam with a shared commitment to improving brain health for populations across the world.
 

^{Above: Atlantic Fellows during the creative workshop | Q&A session with Brian Lawlor and Ton in ‘t Veen.}

Day 1: Connection by Emily Adrion

After many years apart, day 1 of the Special Gathering was organized around the theme of connection. We were welcomed into the Gathering by Brian Lawlor, Site Director for GBHI at Trinity College, who emphasized the centrality of connection and community to GBHI, and reminded us of the preciousness of time spent together. 

In the morning, we heard from Dutch Dementia Advocate and Care Partner Ton in ‘t Veen. Ton shared his incredibly moving and motivational personal story of caring for his late wife who was diagnosed with Alzheimer’s disease at just 50 years old. Ton’s story was one of love, hope and perseverance, where he urged us to “focus on what is possible” and to never be limited by others’ ideas of how things are or what should be. Along with this was a call to keep the person living with dementia at the center of everything we do and, with empathy and understanding, remembering – and seeking to preserve – the unique person they are, even as they change throughout their disease trajectory.   

Day 1 also provided rich opportunities for fellow- and faculty-led sessions. First, fellows from the 2020 cohort, Gráinne Hope, Magda Kaczmarska and Karen Meenan led us through a creative workshop where we explored connection and collaboration through reflections on the role of music in our lives. Later, fellows – and fellow neuroscientists – Francesca Farina and Naiara Demnitz brought us together for a discussion around identity, impact and sustainability in the next chapter of GBHI. Finally, GBHI faculty member Jennifer Yokoyama encouraged us to think critically and creatively about the meaning and role of mentorship in our lives and careers, leading a thoughtful discussion about how to best support others as we reflected on the differences between mentorship, sponsorship and advocacy. Through these three sessions, we connected with fellows old and new, and had time for reflective introspection around how we see ourselves, and how we can continue to best harness the interdisciplinary potential of GBHI to improve brain health well into the future.

At the close of the first day, we took in the history and beauty of Amsterdam together, heeding Brian Lawlor’s opening words to cherish these rare and meaningful moments with close colleagues.

Day 2: Place & Community Visits by Didem Öz

Thursday kicked off with GBHI faculty member Iracema Leroi setting the stage for an enlightening day ahead. One particularly noteworthy aspect of her talk was the clever use of Dutch Masters paintings to introduce each speaker which served as a visual representation of the topics to be discussed. As participants eagerly gathered for the day's sessions, the ambiance was infused with a sense of anticipation and curiosity. It was clear that Day 2 was destined to be a captivating and intellectually stimulating experience.
 
One of the highlights of the day was David de Jong's presentation. De Jong's innovative ideas and practical approach resonated with the crowd, leaving them eager to explore the possibilities of virtual reality in their respective fields. His presentation served as a testament to the power of creativity and affordability in driving technological advancements
 
Our day was filled with thought-provoking discussions and insightful presentations, one of which was delivered by Soukaina El Jaouhari. We were captivated by her ability to address the challenges faced by migrant communities and the impact of these experiences on brain health. El Jaouhari's talk served as a powerful reminder of the need for inclusivity and cultural sensitivity in healthcare, as well as the importance of understanding the unique circumstances of diverse populations.

Rutger de Graf provided an engaging overview of the Pennemes Social Welfare Centre’s work, leaving us impressed by the organization's dedication to improving the lives of individuals in need and inspiring attendees to explore new approaches and initiatives within their own communities.
 
The final speaker, Argonde Van Harten, highlighted the importance of person-centered care, emphasizing the need for compassion, empathy, and tailored support in dementia care. We were particularly impressed by the Dutch model of care, which prioritizes quality of life and independence for individuals with Alzheimer's and dementia. 

After a fruitful discussion, we split into three groups for community visits. Some fellows went to Pennemes Social Welfare Centre, others to Amsterdam UMC, Memory and Alzheimer Center while I joined the group going to the Rijksmuseum. The first exhibit 'Grandfather Clock' by Maarten Baas, while very engaging for our group, would not be a suitable exhibit for people living with dementia due to the confusing nature of time being updated every second almost as a 'Live Art' exhibition. The next exhibit 'The Well Stocked Kitchen' by Joachim Beuchelaer sparked a lively conversation amongst the group about food, drink and mealtimes – we agreed this would be a very useful painting for a dementia inclusive tour. Overall, the feedback from our group was positive - it is wonderful news that such a world famous museum as the Rijksmusuem is operating these dementia inclusive tours. 
 
Amsterdam's late sunset in July grants the Atlantic Fellows the chance to truly appreciate the city's beauty, unwind from their activities, and create lasting memories.

^{Above: Atlantic Fellows Adrián Zegarra and Neus Falgàs discuss their their work at the RAC.}

Day 3: Networks & Exchanging Experiences by Carlos Chechetti

On the morning of the third day as we traveled by coach to Nijmegen we could feel the landscape changing from vibrant Amsterdam to rural places, farms, charming houses and open fields with wind turbines that created a beautiful contrast.
 
And that's how we felt when we arrived in Nijmegen, the city that was born during the Roman Empire and is the oldest in the Netherlands. A city where we could see the imposing constructions of centuries ago mixed with modern buildings and people riding bicycles in the streets.
 
The purpose of our trip was to meet and exchange experiences with the Radboudumc Alzheimer Center (RAC). RAC Coordinator and Global Atlantic Fellow Geeske Peeters, together with RAC Chair Professor Marcel Olde Rikkert, introduced us to the center and spoke of the importance of exchanging experiences between brain health centers such as GBHI. They also reinforced the need to be “centered around people and their quality of life.”
 
After the initial presentation, the first activity was for Atlantic Fellows to present their projects to RAC professionals in the form of posters, chat, slides and other forms. I presented my project based in Brazil that uses passion – sports, music, cinema, poetry etc., – as cognitive activity and socialization for people with dementia. For me, it was very important to hear the feedback from the RAC professionals, ideas that will improve my project.

It was wonderful to have the opportunity to explore how the Atlantic Fellows' diverse work innovates and promotes brain health, with the arts and science working together. Karen Meenan was among the other fellows who presented, she spoke about her online chat program in Dublin that she created at the beginning of the pandemic, when she recognised that people who had just received a diagnosis of Lewy Body dementia would like to connect with each other and experts in the field. Adrián Zegarra also presented his research – the first cognitive assessment for indigenous populations in Peru who speak Quechua – which involved surveying more than 500 participants on demographic differences, language adaptation, and cognitive differences in this population. 
 
After lunch, the schedule moved on to presentations by RAC professionals to Atlantic Fellows. We saw scientific works and projects involving care for patients. Phebe Das presented a 12-month training course for nursing home staff and informal caregivers so they can improve support for people living with dementia. Another project, “Dementia in Metaphors”, presented by Gert Olthus and Anke Oerlemans, discussed the need to take care with language and the way we treat people living with dementia and how this can heighten problems caused by social stigma. Citing one of these metaphors they identified is how society still treats people living with dementia like children. 
 
At the end of the day, Victor Valcour, Site Director for GBHI at UCSF, spoke about how the Atlantic Fellows for Equity in Brain Health program seeks to promote brain health through multidisciplinary areas of knowledge and thanked RAC for the opportunity for GBHI to exchange experiences with their team.  

Day 3 encouraged deep reflection, and made me think that “offering the integration of diverse disciplines humanizes people living with dementia and their families” –  which is at the heart of everything we do as Atlantic Fellows for Equity in Brain Health.

^{Above: Atlantic Fellows Nicky Taylor (Theatre & Dementia Specialist) and Primrose Nyamayaro (Research Psychologist) at the RAC.}