Adkins, then age 26, recalls leaving the appointment “feeling very unseen and unheard.” She steeled herself to seek another opinion about her mother’s changes in behavior: severe mood swings, quick-temperedness and short-term memory loss.
Six months later, Adkins’s mother saw another neurologist at an Alzheimer’s research center in Atlanta. After a psychological analysis and brain imaging, the doctor diagnosed her with suspected early-onset Alzheimer’s disease. The medication that he prescribed worsened her symptoms. Aisha’s mother finally received an accurate diagnosis from a fourth provider in 2013, almost two years after her first neurology appointment: frontotemporal dementia, the leading cause of dementia for people under age 60.
Her long journey to a diagnosis wasn’t rare. Two-thirds of the roughly 6 million Americans with dementia are women, according to the Alzheimer’s Association. Black people are twice as likely to have Alzheimer’s and other forms of dementia compared with White people, while Latino people are roughly one-and-a-half times as likely to develop dementia, according to an Alzheimer’s Association special report from 2021. Despite this elevated risk, Black and Latino people are less likely to receive a diagnosis than White people, according to the report — which can limit treatment access, preclude care planning and worsen health outcomes.
“People of color, but particularly women of color, are in the crosshairs of our nation’s dementia crisis in so many ways — from being at greater risk of dementia, to being more likely to serve as a caregiver for someone living with dementia, to having their economic security threatened by caregiving,” said Jason Resendez, executive director of the UsAgainstAlzheimer’s Center for Brain Health Equity.
Such health disparities stem from a confluence of systemic gaps: lack of culturally competent providers, socioeconomic inequities, mistrust of doctors, stigma about symptoms of dementia and education that isn’t tailored to reach high-risk communities. Experts also say that miseducation about dementia is compounded by a lack of widespread awareness and basic literacy surrounding memory health in the United States.
Cognitive health is a key component of wellness that can be monitored over one’s lifetime, like considering nutrition or pursuing regular blood tests. Yet “very few people really consider your health from your head down,” said Petra Niles, senior manager of African American services for Alzheimer’s Los Angeles.
People need baseline points to measure cognitive function over time, just as primary care providers track height or vital signs at annual checkups. Resendez points to the annual wellness visit covered by Medicare, which includes a yearly cognitive assessment that’s underutilized because many don’t know they can access it, he said.
Such tendencies reflect larger systems: the government allocates far more funding toward research developments than to public health programming. “What keeps me up at night is the lack of focus on translation of what we’re learning in research settings into community-based settings,” Resendez said.
“There’s so much more that we understand now that we didn’t before, but that doesn’t actually equip the communities that are actually responsible for direct care,” echoed Josephine Kalipeni, executive director of Family Values at Work.
Family members who may become caregivers — more likely to be women of color — need to know the warning signs to watch for, Kalipeni said. This information is especially important because family history is a risk factor for developing dementia. Signs can include memory loss that disrupts daily life, challenges in completing familiar tasks and having new problems with words in speaking or writing. It’s not about someone losing their car keys, but forgetting what car keys are used for, Resendez said.
They also must be prepared for what to do after a diagnosis, which can set off a domino effect for documentation and potential treatment to slow disease progression. Clinical trials and new drugs are typically available for people in the earliest stages of the disease, making timely detection critical to accessing therapeutics that people are most hopeful about, Resendez said.
Early detection also empowers the person with a diagnosis to make decisions about their wishes, support needs and financial or legal issues. “You get to have a conversation about how someone wants to receive their care and you get the opportunity to honor that,” Kalipeni said. She coaches family caregivers to talk early with family, regardless of current health status. “Things like, ‘Where are important documents kept ... who has access to those important documents? How do you ensure that someone from the family and a caregiver is named on a loved one’s medical records?’ ”
Even so, there are valid concerns that preclude some from seeking this label, Rajiv Mehta, CEO and founder of Atlas of Caregiving, said. While a diagnosis may validate someone’s experience or symptoms, it can also trigger a loss of liberty and autonomy over decision-making. Others may fear that providers will dismiss their symptoms. Meanwhile, the Alzheimer’s Association report found that more than half of non-White Americans surveyed said they believed significant loss of memory or cognitive abilities is a “normal part of aging” — which is not scientifically supported — rather than being an indicator of disease. The report also found that more than 1 in 4 Latino people surveyed said they do not believe they will live long enough to develop Alzheimer’s or another dementia.
American tropes that glorify productivity and “usefulness” to society also compound stigma, Kalipeni said. This belief layers on racist stereotypes against which women of color already fight uphill: “This country has a history of wanting to paint communities of color as lazy,” she said. “I think that adds to the shame within communities of color, where you’re also sort of fighting those racist undercurrent narratives at the same time as you’re trying to fight the narrative that a less ‘sharp’ mind is not valuable.”
It took Adkins time to approach her parents about the behavioral changes she noticed in her mom. Living at home, Adkins was “around to observe all of those tiny details,” like shifts in her mother’s temper and eating habits. The family was navigating a patchwork of stressors — her father had been laid off due to the Great Recession, while Adkins had graduated into the downturn — making it difficult to pinpoint one cause. They paid out-of-pocket for each doctor they consulted.
Ultimately, the frontotemporal dementia diagnosis came too late for Adkins’s mother to have the chance to outline her care wishes. Adkins reoriented her plans for her 20s and 30s to provide the support that she believes her mom would want.
She eventually left her health-care job to become a full-time caregiver as her mother’s symptoms progressed (Adkins now also holds a remote, full-time job focused on caregiver advocacy). Hiring a home health aide hasn’t been possible due to Georgia’s shortage of home care workers. “The time that my peers spent developing relationships and forming families, I spent caring for my mom,” she said. “I know that I really did commit to giving her quality care, and did not commit halfway.”
For the first time in more than 15 years, new treatments are emerging that could delay disease progression — making it urgent for providers to share information that reaches Black and Latina women, Resendez said. Some organizations are showing how this can be done.
Niles, of Alzheimer’s Los Angeles, focuses on building awareness about Alzheimer’s disease within Los Angeles’s African American communities through outreach, education and partnerships with trusted community organizations and specific churches. “We have to be strategic about the outreach and the effort to be able to then tailor very specific messaging,” said Niles, adding that effective messengers differ across communities.
Likewise, the Alzheimer’s Association has partnered with nearly 20 community-based organizations representing various racial and ethnic groups — including the African Methodist Episcopal Church, the Black Nurses Rock Foundation and the National Association of Hispanic Nurses — that shape the association’s resources, according to Carl V. Hill, chief diversity, equity and inclusion officer for the Alzheimer’s Association.
Adkins, meanwhile, keeps her eyes fixed on the big picture. “You can spend hours asking, ‘Why? Why me? Why my family? Why my mother?’ ” Adkins said.
“The greater question for me is always more so for researchers, for funders, for society at large,” she said. “ ‘What can we do to solve for these disparities?’ ” she said.
Adkins hopes that national dialogue is shifting, though she worries about her own health and future. “Should I end up in the same situation, what support measures will be in place for me?”
This story was written with the support of a journalism fellowship from the Gerontological Society of America, the Journalists Network on Generations and the Commonwealth Fund.