A study published in JAMA Neurology explores whether FTD symptoms present differently based on the race of the person diagnosed. Previous studies have sought to compare neuropsychiatric symptoms in Black/African American and White individuals — though, as the authors point out, this research has either been related to Alzheimer’s disease or was a part of studies where participant data was not sorted by race. Other research has found evidence of racial disparities in the clinical presentation of dementia but in a sample population with various dementia types. The authors theorize that the differences in dementia symptoms could come from a variety of factors, ranging from socioeconomic to cultural.

The authors hoped to expand the research to FTD by examining data from persons diagnosed and identifying potential differences along racial lines. Using data from 2,478 individuals diagnosed with behavioral variant FTD (bvFTD) or primary progressive aphasia (PPA), the authors examined differences in symptoms, disease severity, and demographics for evidence of racial disparities. Further, this study sought to understand whether differences in initial presentation varied between Asian, Black and White persons diagnosed with FTD.

The research team noted several crucial findings in disease severity and symptoms. While not all participants had data on functional status, most did, allowing researchers to examine whether race played a part in the challenges they faced performing daily activities.

• Disease Severity
  • Black/African American individuals were found to have higher severity scores than White and Asian individuals.
  • Asian and White individuals did not differ in disease severity.
• Symptoms
  • Black/African American individuals showed a higher frequency of delusions, agitation, and depression, and greater severity for these symptoms.
  • White individuals were more likely to exhibit apathy than Black/African Americans.
  • Asian individuals more frequently experienced apathy, nighttime disturbances, and eating-related issues than White participants. The severity of apathy and eating-related issues was more pronounced in Asian individuals as well.
• Functional Status
  • Black/African American individuals demonstrated greater difficulty with daily activities than the other tracked racial groups.
  • Asian individuals did not have significant differences in functional status from White individuals.

These findings suggest that Asian and Black/African American people could be at heightened risk of misdiagnosis, the authors note. The greater frequency of delusions, agitation, and depression in Black/African American individuals, for example, is not captured in current diagnostic criteria.

The causes for these disparities are likely tied to the more general healthcare disparities among racial groups, the authors theorize. The authors note that there are likely numerous systemic and structural barriers obfuscating access to healthcare and health information, especially in the Black/African American community. The researchers underscored a critical need for deeper research into the factors determining whether people had access to and used healthcare.

There is a growing need for greater racial and ethnic diversity in the study of FTD, as highlighted in a research paper co-authored by prominent names in the FTD community, including AFTD staff and advisors. If you are interested in getting involved in research, there are many ways to participate, from joining a clinical trial to sharing your experiences with the FTD Disorders Registry.