Black Health Spotlight: My grandma’s Alzheimer’s disease shaped me into a warrior for the cause

Every 65 seconds, a person in the U.S. develops Alzheimer’s disease. It’s the fourth-leading cause of death among older African Americans.

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Ashley Stevens, social worker and dementia advocate. Photo courtesy of Ashley Stevens

Imagine how we would treat our brains if we knew that one day, we would lose all of our precious memories.

Growing up, I never understood the true definition of Alzheimer’s disease. I had my first encounter with it at the tender age of 6 years old. I watched as the disease stripped away the memories and dignity of my Grandma Trollie. I recall my mother trying to assist Grandma Trollie with bathing and grooming, as she would forget how to complete each task. Grandma Trollie would laugh, cry and constantly fight my mother. How was it that one moment she was screaming, twisting and pulling, but the very next moment, she was laughing and playing nice? Grandma Trollie always had a spirited personality about her, but this was not the Grandma Trollie I knew.

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Ashley Stevens, age 6

These vivid images stuck with me for years to come. What I was being equipped to learn at 6 years old was the devastating effects of Alzheimer’s disease. Grandma Trollie was not just experiencing simple forgetfulness. It was truly brain failure.

This “brain failure” is more common than one might think. Every 65 seconds, someone in the United States develops Alzheimer’s disease, according to the Alzheimer’s Association. Take a moment to really let that sink in. Roughly, every single minute, someone is diagnosed with a brain disease that permanently rips away their brain cells and memories.

Currently, Alzheimer’s disease is the sixth-leading cause of death in the United States. For African Americans, Alzheimer’s disease is the fourth-leading cause of death among our elders. African Americans are diagnosed two times greater than our white counterparts. Research shows multiple risk factors that account for these high diagnosis rates including:

  • misdiagnosis by physicians
  • misunderstanding about the disease and its course
  • lack of knowledge of available and accessible resources
  • comorbidities (multiple conditions in the same person)
  • higher rates of vascular disease
  • environmental factors and lower socioeconomic status within Black communities
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A brain on display during Discovery Place’s BODY WORLDS exhibit. It showed the plaques and tangles that cause Alzheimer’s disease. Photo courtesy of Ashley Stevens

Black Brains Matter

Alzheimer’s disease and other forms of dementia not only impact the individual who is living with the disease, but it also has a significant effect on the family dynamic and our Black community. According to the African American Network Against Alzheimer’s, we bear 33% of the national costs of this disease. By 2025, the care costs of Alzheimer’s disease among African Americans are expected to double.

Who will pay these out-of-pocket costs? Caregivers.

Annually, African American caregivers provide approximately $43.6 billion in unpaid caregiving. As this disease bankrupts our national healthcare system, it also sneakily bankrupts the pockets of our Black community and caregivers.

It also takes a toll on the health of caregivers. Dementia caregivers typically experience higher rates of depression, anxiety and lower overall well-being.

This is why Black brains matter.

I knew I was drawn to this cause for a reason. Currently, I’m an advocate working alongside people caring for a loved one diagnosed with Alzheimer’s disease. But that is not enough.

I ask myself, how would I treat my brain if I knew that one day I would lose all of my precious memories? How would I change my routine? How would I plan for my future? How would I be proactive with my healthcare providers? How would I speak up in my Black community and get connected?

I will start changing my habits NOW. It starts with me.


Ashley Stevens is a master’s level social worker and certified dementia practitioner. You can find the dementia advocate offering brain tips and caregiving solutions on her blog, thedementiaguru.com, on Facebook and Instagram.

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