GBHI Newsletter

Issue 1 2018

GBHI CONFERENCE PART 1

by Senior Atlantic Fellow, Jamie Talan

Dementia is a universal problem and countries in Latin America are finding new ways to work together to raise awareness, educate health practitioners, and increase access to diagnosis and treatment. But often it is a cultural, political and economic fight. Listening to many of the leading thinkers in neurology and neuroscience talk about global inequities in brain health in Latin America created an amazing experience for the Atlantic Fellows during the 3rd annual Global Brain Health Institute conference.

It is the hope that the 47 fellows (and counting) from 20 countries will take what they learn at University of California, San Francisco and Trinity College Dublin and make changes at a local level when they return home.  

The four-day meeting opened with an unobstructed view of the issues at hand – lack of education, poverty, poor access to health care, limited financial resources, and politics. These problems, coupled with the cultural belief that memory and thinking deficits are a normal part of growing old, make managing this very common neurodegenerative disease a problem that still generates more questions than answers. It is the hope of many at the meeting that these international collaborations will foster change in their countries. The speakers on the panel included doctor-scientists from Argentina, Peru, Brazil, Egypt, Columbia and Cuba, and they provided a raw picture of the brain health inequities in their countries.

But first Maria Carrillo, the chief scientific officer of the Alzheimer’s Association, set the stage for the discussion of these global challenges. The numbers are staggering: $14.9 billion in direct medical costs in Latin America. She said that it will approach $2 trillion by 2030. The problem is that many diseases can put people at risk for dementia and it is critically important to control cardiovascular disease as there is growing evidence that it could prevent as many as a third of dementia cases. 

The World Health Organization has embarked on a program to identify global research priorities and dementia is high on the list. The problem, said Dominic Trepel, PhD, a health economist at Trinity College Dublin and GBHI Faculty who helped moderate the panel, “about 45 percent of WHO members have less than one physician for every 1000 people.”

Hala Samir Eid Sweed, MD, a professor of geriatric medicine and head of geriatrics and the gerontology department at Ain-Shams University in Egypt, said that there is a lot of health care inequities. Her government spends less than three percent of its health care expenditure on mental health problems and often dementia is lumped into the mix. There are ten elderly care centers in the country and only two specialize in patients with memory problems. She said that her hospital recently started a training program for caregivers to help them take care of people with dementia.

Some countries are better off on the doctor patient ratio, but that does not guarantee good care for dementia sufferers. Juan Llibre-Rodriguez, MD, professor of internal medicine at the Medical University of Havana, spoke about the challenges of taking care of Alzheimer’s patients in his country. There are 7.6 physicians per 1,000 people. He runs a Cuban Aging and Alzheimer’s Study, which is trying to understand the contribution of other medical risk factors in dementia. He talked about a national health plan that was established in 2015 to improve diagnosis and detection of all non-communicable diseases, and public education about risk factors and promotion of healthy brain behaviors, but does not specifically address dementia.

Paulo Caramelli, MD, PhD, is a professor of neurology and coordinator of the behavioral and cognitive neurology research group at the Federal University of Minas Gerais in Brazil. Everyone agrees that rates of dementia will rise as the number of elderly people increase. Dr Carmelli conducted a survey of Latin American countries to better understand the prevalence of dementia, which is about seven percent. He said that dementia seems to emerge earlier in Latin America (around 65 to 69 years old) compared to other countries throughout the world. There are many reasons, he said, including poor control of cardiovascular risk factors and higher rates of illiteracy. Brazil has no national plan for dementia and there is poor general knowledge about dementia and risk factors.

Francisco Lopera, MD, a behavioral neurologist at the Universidad de Antioquia in Columbia, said that the prevalence of dementia in his country is about 9.5 percent. Stigma is an ongoing concern that he and others are trying to address. He is involved with one of the largest pre-symptomatic prevention trials in the world. There are dozens of families with a novel presenilin 1 mutation that triggers early onset AD. (He spoke more in detail about this study during a satellite symposium of the Alzheimer’s Association International Conference.)

Patricia Garcia, MD, PhD, is a professor at the Universidad Peruana Cayetano in Lima, Peru and spent 15 months as the country’s Minister of Health. “Latin America is the most unequal region in the world” when it comes to dementia services, she said. “We need to change the beliefs about dementia.” There are 3.3 million people over 60 and there is very little government protection for older people, she said. She added that the country started working on a national plan in 2013 but nothing has materialized so far. “There are lots of policies and very little implementation and resources.”

“We need to make the people talk about this problem (of dementia) and we need to make them speak loud,” she added. “My mother died with dementia and awareness and human faces are what we need to bring to the table.”

GBHI CONFERENCE PART 2

 

 

Speaking about the sessions on Latin-America, Atlantic Fellow, Bárbara Costa Beber writes: "The increasing incidence of dementia is a global problem but more substantial in middle and low-income countries, such as the Latin-American countries. During the talks it was very clear that Latin-American countries face similar challenges and all speakers agreed about the need for urgent actions. Some countries have already created national plans, but others have not. Even the countries that have a national plan face problems in implementing actions. It was discussed that our region has an excellent and motivated workforce working on dementia and brain health, but we lack financial and political support. In my opinion, the support of international organizations such as GBHI and the Alzheimer’s Association is essential to boost change in Latin-America."

The final session on Day 2 was devised, produced and delivered by the current Atlantic Fellows. They took the opportunity to examine and elaborate on GBHI’s core values, delivering sessions on Respect, Courage, Empathy, Fairness, and Openness, through highly interactive, provocative and collaborative sessions. The sessions were widely praised by Faculty, other fellows and invited guests and demonstrated the power of the inter-professional nature of the Atlantic Fellows cohorts in approaching issues around brain health in broad, collaborative, and innovative ways that break down silos and generate new ideas and connections.

GBHI CONFERENCE - LATIN AMERICAN CONSORTIUM GROUP

Brian Lawlor, GBHI Deputy Director and Bruce Miller GBHI Co-Director participated in the Latin American Consortium Group Meeting at the AAIC Satellite meeting along with 10 Atlantic Fellows from different countries in the region: Barbara Beber, Talita Rosa and Elisa Resende from Brazil; Jeronimo Martin, Luis Arnoldo Muñoz, Brenda Perez Cerpa and Mariana Longoria Ibarrola from Mexico; and Alejandra Guerrero, Lina Velilla and Claudia Perez from Colombia. The Consortium have big plans to change the landscape of dementia in Latin America at multiple levels including raising awareness, improving diagnosis and establishing biomarker and translational research networks in a joined up approach to tackle dementia in this region. GBHI is delighted to participate in this network through its Atlantic Fellows and also to provide training opportunities for emerging leaders to translate evidence into policy and practice in the area of brain health and dementia prevention. By training future leaders in this region, GBHI will work collaboratively with the Consortium and the Alzheimer's Association in this region in its broad mission to improve the quality of life of people with dementia. 

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SENIOR ATLANTIC FELLOWS GATHERING OXFORD, FEBRUARY 2018

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By Fionnuala Sweeney

Even from a distance...

..the portrait of Cecil Rhodes looms large across Milner Hall inside the grand colonial style house built in his memory. One of the finest buildings of the University of Oxford, Rhodes House was completed in 1928, a physical manifestation of the Rhodes Scholarships (established 1902) designed to promote civic-minded leadership among young people from the then British Empire and Germany. 

As complicated as he was controversial, the brooding likeness of Cecil Rhodes is a reminder to all who view it of the man’s imperialist convictions. But then, on his right, a portrait of Nelson Mandela, mischievously grinning at having his likeness painted while sitting in Cecil Rhodes’ very chair; demonstrating how academia and the concept of civic-mindedness have evolved over the past century.

This provided the backdrop in the last weekend of February for a gathering of representatives of three Atlantic Institute programmes, established by Atlantic Philanthropies through the generosity of Chuck Feeney. They included Atlantic Fellows for Health Equity in South East Asia, the Atlantic Fellows for Equity in Brain Health (Trinity College Dublin and University of California, San Francisco) and the Atlantic Fellows for Social & Economic Equity. Program faculty members were there too as well as from the Atlantic Fellows for Social Equity at the University of Melbourne and the Atlantic Fellows for Equity in South Africa. 

Our mission – to find out how we might work together to build a lifelong community of Atlantic Fellows across our respective fields under the auspices of the Atlantic Institute to build a fairer, healthier, more inclusive world.

Fellows from China, Thailand, Indonesia, the Philippines, Vietnam, Singapore, Malaysia, Laos and Myanmar joined colleagues from South Africa, Argentina, Brazil, America, the UK, France, Ireland, Egypt and Greece with the aim of realizing their common purpose. Not all programs were represented at the gathering and conscious of that the fellows set about their tasks knowing the exercises were experimental and that outcomes would be changed and modified as the conversation widens to include everyone. 

Introductions made, the facilitators began putting us through our paces at breakneck speed. First off, an exposure to the four levels of listening, a process that goes beyond simply listening for similarities or differences in another’s discourse to allow the listener to offer empathy, understanding and the possibility that ideas can be generated between the listeners. This highest form of listening is known as generative listening.

Among Friday’s events, a treasure hunt through the 12th century university town which further helped break the ice as photos were taken and the ‘loot’ located. A dinner later that evening with Rhodes scholars helped foster a greater understanding of academic life at Oxford. 

The following morning saw Atlantic Fellows challenged to realize their sense of community by means of creating an installation exercise. The process was more fun for some than others and not a little labor intensive for those artistically challenged but no less sincere or committed in purpose for that.

Then the work of literally finding practical ways to move the fellowship forward across continents got underway. Teams were formed and tasks assigned; my team for example was charged with finding a way to keep up the momentum of the weekend once the fellows had returned to their respective countries. This we did by forming a What’sApp group for everyone to join and then encouraging the most pertinent collaborative conversations among us to move to The Hub – the place where all Atlantic Fellows are being strongly encouraged to digitally live.

We had been told before the weekend to bring some loose clothing for some light movement on Saturday evening but not even the most physical of fellows could have anticipated the whirlwind of motion that the next two and a half hours entailed. Suffice to say a good night’s sleep was had by all who took part.

Sunday saw more detailed work by individual teams on projects ranging from channels & platforms, newsletter podcasts, to rules of engagement, rituals and areas of governance. It was an intense morning followed by presentations where opinions were sought, problems confronted and practical solutions offered.

Throughout the weekend the beautifully maintained gardens of Rhodes House offered a replenishing time out from the intensity of the work within Milner Hall.  The closing ceremony, spontaneously held outdoors in the afternoon winter sunshine beautifully brought this three day gathering to its conclusion.

As the Fellows said goodbye, the leadership team prepared to distil all that had been shared and learned, promising to be in touch soon. By week’s end, a draft read-out had landed in every participating Fellow’s inbox.  Much to ponder and reflect upon then for the Fellows as they departed Oxford and dispersed across the globe to continue their collaboration towards a fairer, more just and inclusive world.

ATLANTIC FELLOWS GATHERING EXPERIENCE, MARCH 2018

by Lina Velilla and Elisa Resende

Last March, 80 fellows from 21 countries and 5 continents were brought together in a place that represented knowledge, power, exploitation, racism and forgiveness. In this scenario of contradiction, we met the most courageous people committed to make change happen and to channel power towards a more inclusive society. 

After a powerful welcoming by the Tekano and Australian/New Zealand group of fellows, the room warmed up, as well as our hearts. We realized how connected we are with the people who live so far away and how sometimes we need to cross geographical and mind borders to connect with people who live next door to our own colleagues, the Atlantic Fellows at GBHI. We shared the astonishment that emanated from the powerful histories we were told about. Those histories included themes of unfairness, racism, inequity, courage, but also strength, displayed by the South African populations and the indigenous groups from New Zealand. 

We listened to a powerful story from a Tekano fellow who was born in a small and under-served village in South Africa. She was the youngest of 7 siblings and was the only one that was given education in her family. This enabled her to leave the village for the first time when she was 16 years old. At that age, for the first time in her life, she caught the train that she used to watch when she was a child but was never able to take. She knew that train was going to “the city” that maybe she would never be able to go to. Now, she is an empowered Atlantic Fellow and wants to fight for a better life to the one she left behind. This story reassured us about our responsibility to speak for others who are not always listened to or who don't have a voice.

Since we come from Latin America, a region as unequal as South Africa, Australia and New Zealand, we felt that our battles are similar to their battles. In Latin America, we also face a large amount of racism, poverty, indigenous oppression and patriarchy. Many voices are unheard, but after this gathering we felt courageous to fight for the unheard voices from our regions and we felt we are accompanied by strong people who live so far away, but who are so close in our hearts. Love is needed the most, and this was encapsulated in a remarkable reflection from the Australian/ New Zealand fellow Marcus: “If you want to help your people, you need to love your people”.

Because we were curious, excited, and brave enough to allow ourselves to be vulnerable, to go deep, to suspend our judgement and assumptions, we felt connected. This gathering was the first step to make each individual fellowship part of a global movement towards social change. Now, we have the feeling of belonging to a worldwide community. We felt transformed and empowered. We felt we are getting ready to tackle the challenges we are about to face on our way back to our regions to seek social justice through activism, justice and knowledge, decolonisation, promoting a shift from pathology to potentiality.