The Unequal Burden of Early Dementia on Black Americans and How We Can Change It

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 with a stranger. The disease is often missed, or misdiagnosed as a mental illness, with on average, 3.6 years passing before an accurate diagnosis. In Williams’s case, innuendo about her sobriety made news.

Although Willis and Williams were both recently diagnosed, the disease does not affect all communities equally. Racial health disparities exist in progressive forms of the disease. In September, research in JAMA indicated that Black individuals in the U.S. with frontotemporal dementia had a higher degree of severity and more significant functional impairment. Researchers also noted a higher frequency of delusions, agitation and depression in Black patients. Another study that spanned the U.S., Canada and the U.K. found that Black and Latinx people with FTD consulted more doctors and had to spend a longer amount of time before being correctly diagnosed. A complex interplay between social determinants of health (nonmedical factors that impact health), racial bias in diagnosis and cultural stigma likely drives these disparities.

The U.S. legacy of slavery and discrimination underpins the fact that Black Americans today are more likely to be living in poverty and uninsured. Unsurprisingly Black, as well as Latinx, patients also often lack access to quality health care. Socioeconomic inequity is a key social determinant of health, and Black patients may also present with more severe functional impairment consequent to an inability to afford care in the community leading to more rapid deterioration. The average out-of-pocket cost for patients with dementia is $61,522, which is 81 percent higher than the costs incurred by patients with heart disease or cancer. In addition, patients of color may mistrust the medical system, owing to fears stemming from past medical atrocities and the continued mistreatment of nonwhite patients. As a result of cost and mistrust, families may keep patients with FTD at home when subtler symptoms of memory impairment emerge, only seeking care once more progressive impairment and concerning symptoms, such as agitation and delusions, develop.

Moreover, sociocultural beliefs in some Black communities—in particular the idea that memory loss is a normal part of aging and a tradition of collective self-reliance (borne from a history of racial adversity)—and mental health stigma may delay seeking treatment. As a result, Black patients may be less likely to present to health care settings and receive standard diagnostic tests: neurological and psychiatric evaluations, brain imaging and genetic analysis.

Physician bias, which also delays accurate diagnosis, might also explain the higher level of impairment and more severe symptoms upon diagnosis. Consequent to physician bias, Black and Latinx individuals with FTD are three to four times more likely to be misdiagnosed with a psychotic disorder. In turn, FTD patients may not receive a further workup to identify their brain disease. In addition, rating scales, such as the Frontotemporal Lobar Degeneration Behavior and Language Domains, predominantly rely on clinician and caregiver ratings. Those may also be confounded by implicit bias when interpreting symptoms and developing screening tools. Gross underrepresentation of minoritized populations in medical research studies impedes capturing accurate epidemiological information and data about them. For instance, in the abovementioned JAMA study, Asian and Black individuals comprised only 2.4 percent and 2.5 percent, respectively, of the people studied.

Awareness of FTD matters because timely diagnosis enables occupational and physical therapy, caregiver education and psychiatric care, all of which can improve quality of life and prevent further functional decline, behavioral issues and medical complications. Early diagnosis can also aid in emotional healing, helping people process the diagnosis through contextualizing the neuropsychiatric changes.

University of California, San Francisco, researchers published preliminary findings in early April about an NIH-funded smartphone app that they developed for early detection of FTD. Increased awareness, combined with the development of accessible screening tools like this app, could decrease the disease’s inequitable impacts. In addition, clinical research should expand diagnostic criteria to reflect diversity, which starts with improving the diversity of people enrolled in research.

Doctors must learn how to provide culturally informed care, counteract diagnostic biases and recognize FTD. Increasing research and development of data-driven diagnostic tools, including biomarkers and new genetic tests, may also address the diagnostic bias exacerbated by screening tools.

Fundamentally, policy makers and health care systems must address inequitable access to health care and the mistreatment that builds mistrust. Wendy Williams is one of the many people battling FTD, and it is to be hoped that her story will raise awareness and help mitigate the racial disparities that may increase suffering in an already devastating disease.

This is an opinion and analysis article, and the views expressed by the author or authors are not necessarily those of Scientific American.