Getting a diagnosis for Alzheimer’s disease or other, lesser-known types of dementias like frontotemporal degeneration — also known as FTD — can be difficult. It’s especially true for Latinos.

Shana Dodge is the Director of Research engagement at the Association for Frontotemporal Degeneration.

“It’s really difficult to get a diagnosis for anyone, you need to really be very healthcare literate,” she explained. “Most people find they really need to push to advocate for themselves or for their loved ones.”

The Association recently surveyed 1800 people living with FTD or their former or current caregiver. Only 15 people were Latino, which seems surprisingly low. Of that, she said, “53% said that, yes, they initially received the wrong diagnosis compared to 43% of the overall population.”

Dodge says access to FTD specialists could be one hurdle; a lack of culturally competent providers could be another. And then there’s the stigma of a dementia diagnosis. 

Frontotemporal degeneration is a type of dementia that’s typically characterized by either changes in behavior, motor function or language.

“It was about 95% Caucasian, and that is consistent with what we see in a lot of research,” she said. “And that’s something that we’re really concerned about, because it’s difficult to find people to recruit into research on FTD. But that’s really the only way that we’re going to better understand the disorder and hopefully get to an FDA-approved treatment.”

Dodge says it can take about 3 1/2 years — on average — to get an accurate diagnosis.