The Unequal Burden of Early Dementia on Black Americans and How We Can Change It
Black Americans face higher hurdles in diagnosis and treatment of frontotemporal dementia, the most common form of dementia for people under 60
The first time many people likely ever heard of frontotemporal dementia (FTD) was in 2023 when actor Bruce Willis revealed the diagnosis, or this year when talk show host Wendy Williams did the same. A debilitating brain disease that can affect personality, behavior and language, it is the most common form of dementia for people under 60 years old.
Williams ran her own show for 13 seasons, before stepping down for her health in 2021; not until last February did she announce she has frontotemporal dementia. Her case, which played out in the public eye, highlights how this grim brain disease takes an especially hard toll on Black Americans.
FTD is a complicated and heartbreaking neurodegenerative disease. Aside from 40 percent of patients having a family history of the disorder and some common genetic mutations, its causes are largely unknown. It has no cure. Unlike other dementias, it afflicts people much earlier, typically in their 50s or 60s; it predominantly presents with either neuropsychiatric symptoms—including aggression, apathy and disinhibition—which is called the behavioral variant, and symptoms involving language comprehension, called primary progressive aphasia. The disease affects around 60,000 people in the U.S.
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The bizarre and painful reality is that patients’ physical state remains intact for the first few years of the disease, and—as their personalities and behaviors change—patients’ loved ones may feel like they’re living…
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