I began serving people with Alzheimer’s Disease and Related Dementias (ADRD) in 2007, a pivotal year marked by a personal crisis involving my mother, Deloris. At that time, she was battling uncontrolled diabetes, which had reached alarming levels. Her medical team warned us that she was at significant risk of needing an amputation due to painful ulcers on the soles of her feet. While the surgeon managed to save her leg, a partial amputation of her toes was necessary due to infection.
What complicated matters was my mother’s professional background in healthcare. My sisters and I struggled to understand why she wasn’t managing her A1C levels. We soon discovered she often forgot to take her medications. After the surgery, when we visited her in recovery, we noticed a troubling change—although she was alert and smiling, she could not speak. Nurses assured us it was likely the lingering effects of anesthesia and that her speech would return.
However, as hours turned into a full day, my mother’s silence continued. Concerned, we consulted her physician, who conducted a thorough evaluation. The diagnosis was a shock: my mother had developed dementia and could no longer live independently.
Confusion and fear gripped us. We knew little about dementia and its implications. The physician’s explanation was vague and lacked information on the resources and support we desperately needed. Our family embarked on a 6-year journey marked by trials and errors as we learned to care for my mother.
We later learned that we were part of a troubling statistic: African Americans are twice as likely to be diagnosed with ADRD, often at younger ages. My mother’s diagnosis at age 55 underscored this disparity. I realized her years as a caregiver were now mirrored in her own story, which became my call to action. That day marked the start of my determination to assist others navigating similar challenges.
‘Melanin Minded’s work seeks to turn personal challenges into community triumphs.’
In 2021, I founded Melanin Minded LLC, followed in 2023 by the Melanin Minded Foundation, to create Dementia Villages in underserved communities. Our mission is to help individuals connect to vital information, services and culturally tailored support systems, empowering people of color to achieve an optimal quality of life.
Our services directly address caregivers and those living with ADRD. One key initiative is Navigator Transportation, in which trained drivers safely transport individuals with ADRD, their caregivers, and older adults to necessary locations. Our ride-share app, “My Melanin Nav,” facilitates access to these services, helping individuals remain connected to their communities.
Navigator coaching guides families through caregiving with culturally informed assistance. The Bridge Youth Program, created from my 2020 doctoral research, focuses on “invisible caregivers”—adolescent caregivers in communities of color. This program provides age-appropriate, culturally tailored training, equipping young people to support their loved ones who have ADRD effectively.
Studies have shown African Americans face a 40% higher risk of ADRD compared to white Americans. Most individuals with ADRD live at home, often cared for by unpaid family members. Familism, a cultural expectation of providing family care without question, can place unique pressures on adolescent caregivers. These young, “hidden” caregivers often help with daily activities such as dressing, feeding, and medication management—skills recognized by the National Association for Home Care as certifiable personal care assistance.
Our focus extends to men’s health, encouraging men to “know their numbers” as they take on caregiving roles, just as I did for my mother.
Melanin Minded’s work seeks to turn personal challenges into community triumphs. By fostering connections, offering tailored programs, and promoting health literacy, we aim to make caregiving a shared and supported experience.
I invite you to join us in building communities where Black elders and their caregivers are empowered and equipped to thrive. Visit our website or reach out to learn how you can support our mission, contribute to our programs, or share your story. Together, we can ensure that the wisdom and strength of our elders are honored and that caregivers have the resources they need to succeed.
Bashir Raheem Easter, PhD, is the founder of Melanin Minded and Melanin Minded Foundation, as well as an adjunct professor at Milwaukee Area Technical College.
