Towards Creating Synergies for Improving Indigenous Brain Health Globally

Indigenous populations around the world face substantial health inequities as a result of systemic and socioeconomic disadvantages. The prevalence of chronic diseases is disproportionally high in Indigenous peoples, and the increasingly aging Indigenous populations are at particularly high risk for Alzheimer’s disease and other dementias.

For example, epidemiological data from Australia highlighted that dementia is 3—5 times higher, and the average age of onset ten years, earlier among Aboriginal Australians and Torres Strait Islanders compared to the general population. Despite the enormous heterogeneity and diversity among the worldwide Indigenous populations, observations tend to be similar.  However, for many communities reliable epidemiological data are lacking.

Other challenges are timely diagnosis, and the availability of reliable and culturally appropriate assessments to allow for accurate diagnosis in the first place. In addition,  Indigenous people often have difficulties accessing health care as it is common for these communities to live in remote areas. Moreover, language, insufficiently trained health professionals, health illiteracy with regards to age-related disorders, and stigma of mental illness are barriers to adequate Indigenous brain health care. Additionally, progress on developing and implementing effective prevention, intervention and care approaches is limited by a shortage of funding for research into these rapidly growing and important issues.

At GBHI, numerous Atlantic Fellows for Equity in Brain Health work on the frontline to reduce the scale and impact of dementia in Indigenous populations. For example:

• Neurologist Martha Unaucho Pilalumbo and geriatrician Kuri Tituaña aim to develop better approaches for dementia diagnosis in Ecuador. 
• Photographer Alex Kornhuber documents aging in Indigenous communities in his home country Peru and other locations around the world. 
• Kirti Ranchod, a neurologist from South Africa and co-founder of the African Brain Health Network (ABHN), focuses on traditional or cultural practices within Indigenous and other communities that support brain health.

To gain a deeper understanding of how to address common challenges, Atlantic Fellows joined a recent meeting of the International Indigenous Dementia Research Network (IIDRN). IIDRN aims to enhance knowledge of how Indigenous peoples understand and experience dementia and its impact on their communities. This aligns closely with the goals of GBHI and the Atlantic Fellows working in the field. Researchers in the IIDRN network, which was founded in 2009 by Professor Kristen Jacklin, a medical anthropologist at the University of Minnesota Medical School (Duluth, U.S.), support and inspire each other through an online discussion platform, sharing results and findings, collaborating, and occasional meetings. 

Photography by Alex Kornhuber, Atlantic Fellow

At the recent IIIDRN online meeting in November 2021, five Atlantic Fellows had the opportunity to provide a glimpse of the multitude of work that GBHI community is undertaking:

• Susanne Röhr, psychologist and epidemiologist from Germany, opened by giving an overview of the Indigenous brain health challenges that GBHI seeks to address.
• Maritza Pintado Caipa, neurologist from Peru, illustrated barriers and opportunities in the case of aging Peruvians
• Maira Okada de Oliviera, neuropsychologist from Brazil, presented on detecting cognitive impairment in Brazilians with low education
• Lina Zapata, psychiatrist from Colombia, informed about the frequent misdiagnosis of behavioral variant frontotemporal dementia in underrepresented Colombian populations
• Dana Walrath, medical anthropologist, writer and artist, shared an illustrated piece on (k)new approaches to dementia in the light of Indigenous knowledge, social justice, and the end of life.

Illustrations by Dana Walrath, Atlantic Fellow

Atlantic Fellows for Equity in Brain Health linking with IIDRN is an important first step towards creating synergies for improving Indigenous brain health globally: Connecting researchers, clinicians, creatives and stakeholders will raise the awareness for the challenges and accelerate the development of  much needed solutions for the growing number of Indigenous people at risk for dementia and living with dementia.

"I am very excited about Atlantic Fellows at GBHI connecting with IIDRN and the potential for our growing global network to make a contribution to improving Indigenous brain health," says Brian Lawlor, Deputy Executive Director of GBHI. 

Get Involved

At GBHI, Atlantic Fellows are establishing a special interest group on Indigenous Brain Health to further develop the shared goals of addressing threats to brain health in these vulnerable populations around the world. If you are interested, please email susanne.roehr@gbhi.org.