April is National Minority Health Month, a time to raise awareness about health disparities that continue to affect people from racial and ethnic minority groups, and to encourage action – both to reduce those disparities and to improve the health of racial and ethnic minority and American Indian/Alaska Native communities.

Throughout the month, AFTD is spotlighting stories from families of color who are impacted by FTD and those who are building towards a future free of FTD. In the second installment of the National Minority Health Month Spotlight Series, we’re featuring Aisha Adkins, MPA, CNP, an FTD advocate and caregiver working to amplify the experiences of Black caregivers and other marginalized voices who are impacted by dementia.

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Since her mother was diagnosed with FTD in 2013, Aisha Adkins, MPA, CNP, has dedicated her life to amplifying the diverse perspectives and lived experiences of people of color living with dementia and their caregivers.

Adkins never imagined that she would become a fulltime caregiver upon graduating from college more than a decade ago, but it’s a role that has allowed her to advocate for families who are oftentimes underrepresented or historically overlooked. As an FTD caregiver and organizer, she dedicates her advocacy efforts toward building an equitable, inclusive, and comprehensive public health and care infrastructure, using media and storytelling to initiate cultural and policy change.

Adkins recently took part in The Hill’s “Breaking New Ground: Innovations in Alzheimer’s Research,” a virtual event sponsored by the pharmaceutical company Eli Lilly. The Mar. 2 event included discussions with policy makers, physicians, caregivers, patient advocates, and experts about ways to combat Alzheimer’s and related dementias, and improve national dementia care. Adkins joined The Hill’s Editor-at-Large Steve Clemons for a discussion on her own experience of caring for her mother, Rose. She also discussed the challenges faced by minority racial and ethnic groups when attempting to access adequate and equitable healthcare.

“Issues around trust in communities of color and the healthcare system in making sure we are believed when we present with symptoms was something that inspired me to advocate on behalf of my mother and her lived experience,” Adkins told Clemons during the event. “This journey has certainly made me passionate about advocating not only for those living with dementia, but for those of us who are providing care.”

Adkins shared how challenging the process was when she began seeking answers for the sudden changes in her mother’s behavior and temperament as her FTD symptoms emerged. In 2020 Adkins told AFTD about her mother’s experience of being misdiagnosed multiple times before receiving an accurate FTD diagnosis. She explained how that experience inspired her to take action.

“I would love to see a world where young adult caregivers, particularly those in marginalized communities, have the support they need,” Adkins said. “I’m really passionate about filling in the gaps and am looking forward to opportunities to make a difference and a better future for folks.”

Adkins shared with Clemons the ways in which elected officials can support caregivers across the nation, and how that support is crucial for families facing a dementia diagnosis. She emphasized the need for “underserved communities to have the access that they need, making sure that there is education around the disease, and [that] people have access to ongoing primary care and specialist care.”

Adkins continued: “We [have to make] sure that we rid the social determinates of health [and] that we do all that we can to address the systemic oppression, making sure that we don’t prolong the trauma of racial and social violence against women and Black and brown bodies. These are all things that are somewhat seemingly unrelated, but they really have an impact on the care experience from a Black and brown perspective.”

Adkins has worked diligently to support other caregivers by founding Our Turn 2 Care, a nonprofit that connected BIPOC and LGBTQIA+ millennial caregivers to information, resources, and each other. In 2021, she joined the nonprofit organization Caring Across Generations as a constituency organizer helping family caregivers, older adults, and people with disabilities to transform the way care is given, received, and viewed in the U.S.

In April, Adkins shared her family’s experience of navigating the FTD journey as a panel member for “The Diverse FTD Care Partner Experience,” a breakout session that was part of AFTD’s 2022 Education Conference. She has utilized her platform and her voice to highlight the racial and ethnic disparities in dementia care, while providing insight into the barriers that people of color face in the healthcare system.

You can view Aisha Adkins’ appearance on The Hill’s “Breaking New Ground: Innovations in Alzheimer’s Research” event here.