An article published in the journal Alzheimer’s & Dementia identifies gaps in current FTD research caused by disparities in access to proper dementia care and research centers, and outlines ways to address these obstacles in order to further diversity in FTD science globally.

The article was a collaborative effort by FTD experts worldwide through the Alzheimer’s Association International Society to Advance Alzheimer’s Research and Treatment (ISTAART) professional interest group called “Frontotemporal dementia and related disorders.” AFTD plays an active role in this interest group – and co-authors include AFTD Senior Director of Scientific Initiatives Penny Dacks, PhD, and AFTD Director of Research Engagement Shana Dodge, PhD, as well as AFTD Medical Advisory Council Chair-elect Chiadi Onyike, MD, of Johns Hopkins University Hospital, and 2014 AFTD Clinical Research Pilot Grant recipient Jennifer Yokoyama, PhD, of the University of California, San Francisco.

Research Hindered by Varying Access to Diagnosis, Expertise, Funding, and Infrastructure

A paper published in 2023 by ISTAART from the same authors called attention to the lack of representation of many cultures in FTD research, with most studies conducted in North America, Europe, and Australia with persons of European descent. Differences in social norms, language, and culture can change how FTD symptoms present, contributing to ongoing difficulties in defining, identifying, and studying FTD more broadly due to cross-cultural barriers.

The authors note that since their previous paper, the research field has already begun to meet the need for representation. Two examples they highlight are a step-by-step guide developed by the International Neuropsychological Society for adapting cognitive tests to different linguistic and cultural groups, and a web-based app for automated language analysis that identifies speech and language symptoms in different cultural contexts.

But despite this progress, crucial gaps in representation remain. The authors note that over half the studies conducted in the last 30 years to determine FTD’s prevalence were conducted in Europe or North America, with almost all data on the incidence of FTD (the number of new cases that occur within a period) derived from the populations of those two regions. In many areas, such as Africa and the Middle East, studies were scarce; the only data from the Middle East the authors found was a single-center study conducted in Oman, showing that 9.5% of the 116 documented dementia cases there were FTD. Data on the frequency of FTD in Aboriginal Australians and Pacific Islanders is also highly limited.

While there is a growing recognition that structural and social determinants of health impact one’s chances of developing neurodegenerative disease, this area remains deeply understudied in FTD, the authors note. Studies of people of European descent have discovered associations between cognition and education, as well as occupation, but most studies examining these factors in non-European people have been conducted in small cohorts in specific settings, meaning the data is not generalizable to the local population. The authors noted a study by the University of Sydney that showed people whose first language is not English could tolerate neurodegeneration longer before behavioral variant FTD (bvFTD) symptoms began, highlighting how social factors like language can influence FTD.

While our understanding of FTD genetics in diverse groups is growing, the lack of representation of those groups in FTD research has resulted in persistent gaps. For example, it is uncertain if common mutations like C9orf72, MAPT, or GRN originate with a European ancestor or if they can be found in other ancestral lines. Similar gaps exist in our current understanding of FTD biomarkers, though evidence indicates that one’s ethnocultural background may influence imaging biomarkers. One study reviewed by the authors noted that dementia diagnoses were linked to consistent differences in brain atrophy patterns in a racially and ethnically diverse cohort.

Other factors that contribute to our knowledge gaps in FTD include limited access to clinical expertise, research expertise, funding, and a lack of patient advocacy groups in many regions. Inequitable access to screening and diagnostic resources is a problem for all people facing a neurodegenerative disorder, but the unique symptomology of FTD (which overlaps with other disorders) and the limited general awareness of the disease present additional challenges to affected families. The authors note that the challenges usually faced by families navigating FTD worldwide can be traced to two main issues:

• A lack of culturally adapted diagnostic tools that can accurately detect potential symptoms specific to one’s culture and ethnic background, and
• A lack of clinical and healthcare workers who are familiar with diverse communities and their cultures.

Because of the resources required for clinical trials, most are conducted in high-income countries like the United States, United Kingdom, or Japan. Researchers in other regions have difficulty obtaining funding as well as recruiting study participants, due to socioeconomic barriers that preclude research participation. While patient advocacy groups help mitigate such barriers – often by providing affected families with access to studies seeking participants – such organizations for FTD only exist in a few countries.

How Researchers Can Address Gaps in Representation and Involvement

One of the primary obstacles to more diverse representation in FTD research is a lack of resources – often, low research funding is compounded by the variable healthcare funding in middle- and lower-income countries. Involving more diverse groups in FTD research, therefore, will require significant funding to build expertise and create resources and support for scientists. The authors underscore how researchers and scientific institutions in high-income countries can support diverse representation through thoughtful collaboration, and ensure that resources available in North America and Europe are accessible to researchers elsewhere around the world. Additionally, they can help international researchers obtain funding from existing sources – for example, by holding grant-writing workshops or offering translation assistance.

The authors also highlight the role of research consortiums in helping to facilitate collaboration, provide oversight, and drive recruitment for studies; examples include the Multi-Partner Consortium to Expand Dementia Research in Latin America (ReD-Lat) and the African Dementia Consortium (AfDC). The FTD Prevention Initiative (FPI) was recently founded to promote international cooperation and address underrepresentation; it currently brings together researchers from Asia, North America, Europe, South America, the Caribbean, Australia, and New Zealand.

Are you interested in participating in FTD research? The FTD Disorders Registry is a powerful tool in the effort against FTD for persons diagnosed, care partners, family members, and researchers. Not only can you keep up to date on trials recruiting participants, but you can also sign up to receive notifications on studies and share your experiences to guide researchers.