In 2011, it was estimated that there were 50,000-60,000 cases of Frontotemporal Dementia (FTD) in the U.S. Recent research suggests that this number is likely higher due to a lack of representation in studies, especially among Black/African American communities.

Research has shown that Black/African Americans often face obstacles in getting a timely FTD diagnosis. A survey revealed they are less likely to receive prompt diagnoses and often consult with four or more doctors before getting one. Additionally, the symptoms of FTD can present differently in different ethnic/cultural groups.

Black families have reported difficulties convincing practitioners of FTD concerns, leading to delays in diagnosis. The delayed diagnosis may result in higher severity of dementia.

FTD-related symptoms, like disinhibition, can create problems in social situations and with the justice system. Black families face added concerns due to a higher impact from police brutality.

A study found that families dealing with FTD face nearly twice the annual costs compared to those with Alzheimer's disease. Black/African American families, already facing systemic inequalities, experience heightened challenges.

Efforts are underway to address these challenges. Initiatives focus on inclusive research, overcoming economic and health insurance obstacles, and educating communities. The Biomarker Evaluation in Young Onset Dementia from Diverse Populations (BEYONDD) study aims to understand young-onset dementia in diverse populations, making participation more accessible.

The Alter program collaborates with Black faith communities to create dementia-friendly environments. This program aims to educate, modify environments, and guide congregational leaders in providing support to Black/African American families facing FTD.

Article Resources:

For more information, read the Partners in FTD Care issue on Black/African Americans and FTD.

You can get more articles like these from The Association for Frontotemporal Degeneration.

If you have questions or need support, reach out to the AFTD HelpLine at 1-866-507-7222 or [email protected].