While known as a rare disease, frontotemporal degeneration (FTD) is the most common dementia for people under 60. In 2011, researchers estimated 50,000 to 60,000 cases of FTD in the United States¹, but this figure is increasingly understood to be an undercount, for several reasons. For example, FTD is frequently misdiagnosed; additionally, diagnosis takes more than 3.5 years on average, and can often only be confirmed postmortem.

While greater attention has been paid to FTD and FTD research in the years since that study, formal research on the experience of Black/African Americans with FTD has been limited to date. But momentum is growing. This issue of Partners in FTD Care draws on perspectives from two FTD care partners and from emergent research to outline challenges, advance a crucial conversation, and emphasize the need for additional public education, awareness, support, and research.

Barriers To Diagnosis

For this issue of Partners in FTD Care, AFTD interviewed Aisha Adkins and Malcoma Brown-Ekeogu, two Black caregivers for loved ones with FTD (see page 4). They highlighted a lack of awareness of FTD and barriers to equitable care as factors leading to challenging diagnostic journeys.

A 2022 study incorporating an analysis of Medicare beneficiary data found that Black/African Americans – alongside Hispanic/Latino and Asian individuals – were “less likely to receive a timely dementia diagnosis.”²

Data from the FTD Insights Survey³ offers an additional perspective. African American respondents (n=25, representing care partners and people with FTD) were more likely to report needing to see four or more doctors before receiving a diagnosis (36% compared to 18% of total respondents), and more likely to receive a different initial diagnosis (80% vs. 45%). Notably, just 25 (1.2%) of FTD Insights Survey respondents identified as Black, far lower than the percentage they represent in the overall U.S. population (~12 percent), reflecting a need for continued outreach, education, and awareness both for our organization and our field.

Symptoms and Severity at the Time of Diagnosis

A recent University of Pennsylvania study⁴ of individuals with FTD (as recorded in the National Alzheimer’s Coordinating Center data) showed preliminary data that Black study participants diagnosed with FTD had a higher Clinical Dementia Rating (a widely used measure to rate the severity of dementia), “suggesting that there may be delayed diagnosis of FTD in Black individuals.”

Furthermore, Black/African Americans with FTD showed different types of symptoms at the time of diagnosis. Specifically, they were “more likely to exhibit delusions, agitation, and depression but less likely to exhibit apathy at their initial visit.” Therefore, they may be more likely to be misdiagnosed “if their symptom profile does not fit within the current clinical criteria.”

The study’s authors note that Black/African American participants were “considerably underrepresented in this sample,” recommending the prioritization of “both equitable access to health care and enrollment in clinical research.”

Continued lack of understanding from health professionals about FTD means that families must often serve as their own best advocates in getting an accurate diagnosis. Resources such as AFTD’s diagnostic checklists for behavioral variant FTD and primary progressive aphasia can assist families in advocating with physicians for appropriate referrals. Given the emerging understanding of possible diagnostic challenges, be sure to note any additional symptoms (including delusions) above and beyond those listed on these checklists.

Systemic Inequalities Deepen the Challenges of FTD

FTD puts a deep strain on every individual and family. For Black/African Americans, systemic inequalities in American society can exacerbate these challenges.

An AFTD-funded study on the social and economic burden of FTD, conducted in 2017 and published in Neurology,⁵ found that families facing FTD incur almost double the annual caregiving-related costs for families with an Alzheimer’s diagnosis. It’s important to note that this study did not distinguish between race or ethnicity among respondents. In addition, 58% of caregivers reported that their loved one had made bad choices around money, and two out of three (67 percent) FTD caregivers reported declines in their health. More than half said they incurred higher personal healthcare costs.

Per U.S. Census data,¹¹ Black/African Americans are impacted by poverty at a rate of 19.5%, compared to the 11.6% rate for Americans overall, suggesting that some Black families facing FTD may have fewer economic resources available to counteract FTD’s significant economic impact.

A May 2020 AARP and National Alliance for Caregiving fact sheet⁶ offered a profile of “typical” African American caregivers, identifying multiple areas in which they face deeper challenges. African American caregivers are more likely to be unmarried than all other racial/ethnic groups when taking on caregiving responsibilities; unmarried caregivers have one less resource to call on in a challenging situation. Also, African American caregivers “less often report being in excellent or very good health,” the profile said.

The portrait that emerges – of Black/African Americans being more likely to face economic and health challenges, even before experiencing FTD’s impact on their finances and well-being – suggests a need for further resources, support, and research.

Challenges in Interactions with the U.S. Criminal Justice System

Disinhibited behavior among people with FTD can lead to socially inappropriate behavior, misdemeanor offenses (such as shoplifting), hypersexual behavior, and traffic violations. A study looking at criminal behavior among individuals with FTD⁷ found that 14% of people with bvFTD were likely to present with criminal behavior, compared with 2% of people with Alzheimer’s disease. Additionally, 6.4% of people with bvFTD were more likely to exhibit violence, again compared with just 2% of people with Alzheimer’s disease.

In 2021, the American Medical Association⁸ recognized the disproportionate impact of structural racism on Black, Indigenous, and other people of color in experiences of police brutality, suggesting additional concerns for Black families facing FTD, should criminal behavior be a manifestation of an individual’s disease. Focusing training for law enforcement and first responders on the different manifestations of dementia can help to reduce risk for all families facing FTD.

A Note on Participation in Research

This piece cites in multiple areas the importance of additional research to clarify and address the challenges that Black/African Americans face with FTD. Advancing these vital efforts will require continued tending to biases within the research process itself.

A June 2022 study on health disparities in dementia² argues that research efforts in this area need to bear in mind the well-established “lack of representation among ethnoracial groups and limited general results” in dementia research to date, while navigating “increased challenges with recruitment, enrollment, and retention” and avoiding sampling/selection bias. In other words, there are clear and obvious gaps in current research on dementia’s effects that must be addressed directly and thoughtfully. A 2023 paper published in Alzheimer’s and Dementia⁹ covers such gaps in FTD-specific research and identifies steps that can be taken to overcome this current lack of understanding, as does a 2020 FTD Disorders Registry survey¹⁰ on best practices for minority engagement in FTD research.

One initiative already working to address these gaps is the Biomarker Evaluation in Young Onset Dementia from Diverse Populations (BEYONDD) study. BEYONDD works to assess the causes and frequency of young-onset dementia in diverse populations, and seeks to develop scalable, culturally informed research infrastructure in the continental U.S. and Puerto Rico.

Momentum is Growing

FTD research – and FTD awareness – are at a pivotal moment. Health professionals, researchers, and advocates are increasingly working to ensure that the needs of all families facing FTD are met. No one should face this disease alone, and tending to every barrier preventing families from accessing a supportive community is vital.

Black families impacted by FTD in the U.S. face unique challenges. Providing necessary information, support, and opportunities to engage in research is vital and will require a collaborative effort. AFTD is here to help.

We are dedicated to understanding FTD and advancing research targeting this disease from a full diversity of perspectives, as a vital step toward achieving a world with compassionate care, effective support, and a future free of FTD – for everyone.

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