A comprehensive research paper published in the journal Alzheimer’s & Dementia highlights critical gaps in FTD research and calls on the international scientific community to incorporate greater diversity in future research and clinical studies.

Members of AFTD’s staff and Medical Advisory Council (MAC) were among the many professionals who helped co-author the paper, including AFTD’s Senior Director of Scientific Initiatives Penny Dacks, PhD, Director of Research Engagement Shana Dodge, PhD, and MAC Chair-Elect Chiadi Onyike, MD.

A great deal of FTD research is based on studies conducted in North America, Western Europe, and Australia on individuals of European descent, owing to their socio-economic advantages over others. Not only does this preclude the inclusion of people from diverse populations outside these regions of the world, but it often precludes diverse peoples within them too. As some care partners have shared, there is often a disconnect between different cultures and best care practices, making a care partner’s duties much more difficult even if they live in a country like the US.

As the authors explain, changes in cultural context can change how the symptoms of FTD disorders present themselves. For example, a study found that eating disorders associated with behavioral variant frontotemporal degeneration (bvFTD) in the UK, like the US, are typically associated with overeating and weight gain; in Japan, however, bvFTD-related eating disorders don’t normally include severe weight gain due to cultural differences in diet.

Because much of the global population hasn’t been included in FTD research, many diagnostic tools, care practices, and treatments lack adaptations to account for different cultures and languages, the study highlights. The Boston Naming Test, an exam commonly used to assess word-finding in primary progressive aphasia (PPA), depicts objects that are culturally specific to North America and likely won’t be recognizable to other population groups.

The study finds that the lack of diversity in the FTD space has profoundly impacted global awareness, leaving some areas of the world largely in the dark about the cruel disease. The lack of awareness makes seeking diagnosis and treatment more complex, leading to FTD being diagnosed later in progression in many regions, which causes a significant amount of anxiety for care partners and family members. To make matters worse, a lack of awareness can also lead to people with FTD and their families feeling stigmatized.

The study shares the story of Amir to highlight how the lack of awareness can affect people with FTD worldwide.

Before his diagnosis, Amir was a generous, compassionate, well-respected man and a devout Muslim. In his late 50s, he began to show signs of FTD, with behavioral changes that would cause him to breach social norms (such as being loud and wearing shoes in a mosque) and fail to observe major Islamic holidays such as Ramadan. The family faced social rejection and stigma; they avoided public places to avoid further conflicts. Amir’s diagnosis of bvFTD and his family’s subsequent explanation of his condition to local religious leaders led to an understanding of what he was going through and helped Amir and his family restore some, but not all, of their social activities.

The study notes that considerable research will be required to cover the significant gaps in FTD research and clinical practice. One of the improvements the authors propose is public awareness campaigns tailored to the cultures and languages of different regions. In addition, the authors suggest investments to help bring knowledge of FTD to clinicians around the world. As the paper highlights, there are many ways that these goals can be accomplished, such as adding FTD to health science curriculums at the undergraduate level or the creation of a best practice manual, such as a diagnostic manual recently published in Latin America.

Another way the study recommends patching gaps in FTD research is the development of formal partnerships and exchange programs between current leaders in the FTD space and experts in developing countries. Not only will this help provide FTD expertise to more people worldwide, it will also provide researchers with valuable insight into how FTD symptoms present in other populations.

To further the inclusion of diverse groups into FTD research, the authors recommend that researchers try to better meet the needs of diverse peoples and work more closely with local experts. For instance, limiting the requirement for in-person visits and allowing for remote data collection can let people living in rural areas participate in research. Researchers can also provide technical assistance to treatment and research centers in developing countries, helping them with tasks such as navigating local regulations and acquiring the proper equipment for running a clinical trial.

Interested in learning more about how experts are diversifying FTD research? An Australian study  discovered that people with a non-English first language can tolerate bvFTD longer before symptom onset.