Unpacking Diversity and Dementia: The Black Caregiver Experience

“Mom… What’s going on with Grandma Trollie? Why is she acting that way?”

These were the words I murmured at the tender age of 6 years old, the day I was first introduced to Alzheimer’s disease.  

Picture this: A bright-eyed, young 6-year-old walking down the hallway of her great Grandma Tollie’s house (her name was Montrola, but we all affectionately called her “Trollie”). I was confused and alarmed by the sounds I heard from the back bedroom, but I journeyed down the hallway. 

At first, I could hear faint screams, and then suddenly I could hear bursts of laughter, all coming from our beloved Grandma Trollie. The combinations of screaming and then laughter became louder and louder, and more and more frightening for my young heart.  

Finally, I reached the bedroom door. The innocent eyes of a young child watched my mom and my grandma try their best to calm my Great Grandma Trollie as she fought them with a fierce intensity.

“Boy, she has a tight grip!” I thought to myself.

I recall seeing my mother trying to help Grandma Trollie with bathing and grooming, as she would forget how to complete each task and ask simple questions, that even I could answer as a 6-year-old.

The sounds grew louder and went back and forth from screaming to laughing. Screaming to laughing. What a sound!

How was it that one moment she was screaming, twisting, and pulling, and the very next moment, she was laughing and playing nice?

I stood there long enough to have a solid mental picture which confused and frightened me beyond belief. At this young age, I had no clue what Alzheimer’s disease was, but I quickly learned that it would forever change my Great Grandma Trollie’s life, and mine as well.

I watched Grandma Trollie fight her way through the disease. I witnessed my family struggle to understand the disease process and what to expect. I was forever impacted by seeing this heartless disease rip away pieces of Grandma Trollie as we knew her. I once heard her ask my Mom, her granddaughter whom she cared for most of her life, “What’s your name?” I watched the hurt look on Mom’s face as she repeated her name once more. Her heart must have broken to feel as though her dear Grandma Trollie had forgotten their bond.

Years later, I began to study the field of aging and dementia care, and I learned that my family was not the only family to experience this. There are currently more than 21% of Black individuals in the United States that are living with Alzheimer’s disease or some form of dementia. I learned that Black folks are diagnosed two times greater than our white counterparts. I also learned that in the Black community, Alzheimer’s disease is the 4^th leading cause of death. In our community, it is a silent epidemic due to cultural associations to a misunderstood condition, many referring to the disease as senility or simple forgetfulness. (sources: African American Network Against Alzheimer’s & Alzheimer’s Association)

To my surprise, so many other Black families were faced with the same challenges and remained silent about it due to lack of support, resources, and education about the disease. 

Like my family, many other Black families received a dementia diagnosis and were sent home packing. Looking for answers and determined to figure it out as a family, no matter what. 

Have you ever had to navigate this disease alone and felt completely lost and confused? I am sure many of you can relate.

That is the typical experience for any dementia caregiver. For Black families, however, there is the added weight of dealing with health care discrimination and racism, coupled with limited access to dementia care resources.  

According to the Alzheimer’s Association’s latest Alzheimer’s Disease Facts and Figures report, “Two-thirds of Black Americans (66%) believe it is harder for them to get excellent care for Alzheimer’s disease or other dementias.”

Additionally, 50% of Black Americans have reported discrimination when seeking health care and believe discrimination is a barrier to Alzheimer’s and dementia care.

If these numbers do not rock you, then I challenge you to dig deeper. It makes a difference when you enter the hospital and fear that your loved one may not get adequate attention and care, all because of your racial identity. That fear is compounded if your loved one is alone and unable to verbalize their concerns.

The Alzheimer’s Association’s special report is not news to many of us in the Black community. As caregivers, we experience this day in and day out. My family experienced many challenges accessing medical care for Grandma Trollie. We felt lost trying to locate resources to help us better understand the disease process and how to support her. 

The beauty in the Alzheimer’s Association’s new report is that it can truly be the catalyst for conversation and change. A bridge to the Black community. An opportunity to recognize the voices of Black caregivers and elders living with dementia. 

The report adequately highlights the daily challenges we, as Black Americans, experience. The feelings of uncertainty we bear when navigating the health care system and caring for a loved one with dementia. The challenges we face when medical providers display an implicit bias towards us and do not understand our racial background or needs.

Jean Frye, a fervent caregiver for her late husband David, can relate to this experience as well. Jean shares that caring for her husband living with dementia was no easy feat and many times she felt completely isolated from medical support and the community. 

“One afternoon, in utter frustration, I took my cell phone and went over to Starbucks and ordered a coffee. I sat down with my stack of local dementia care resources and I started calling through a long list,” Jean recalled. What she soon realized was that the long list did not include any resources for Black caregivers. “I said, I need someone who looks like me,” Jean revealed.

Shortly after, Jean and I connected, as the Alzheimer’s Association’s helpline number was listed on her resource page. We met in the Spring of 2015 both sharing a common interest in dementia caregiving. Me, holding the memories of Grandma Trollie close to my heart, and Jean making her way through her day-to-day caregiving journey. We both wanted to connect to more Black families and caregivers alike. We had a passion to create our own dementia FUBU (for us by us). Jean advocated fearlessly to the local Alzheimer’s Association Chapter, at her church, and throughout her community.

With Jean’s efforts and a lot of planning, we started the African American Alzheimer’s Caregiver Support Group. The first of its kind in the Charlotte Region. A safe space where Black folks could gather, share similar lived experiences, become educated about the disease, and get connected to meaningful resources. Our group is currently meeting virtually and is open to Black caregivers across North Carolina. Updated meeting information can be found monthly online.

Since then, our support group has grown to a roster of 75 individuals. Why? Because a large number of Black caregivers are in desperate need of valuable support and education. The numbers continue to grow. Black caregivers are in search of a space that is familiar and safe. As identified in the report, Black caregivers want to feel more confident that they have access to quality dementia care and health care providers who will understand their racial background and needs. 

The report further explains that Black caregivers do not feel that health care providers empathize with them and their experiences. A staggering 89% of Black Americans say it is important for Alzheimer’s and dementia care providers to understand their ethnic or racial background and experiences, yet only 48% feel confident there is access to providers who are culturally competent. 

It is clear that racial disparities exist within dementia care. It is critical to begin understanding how Black families experience discrimination and view access to quality health care & dementia support. 

Our hope is to open up the conversation and help to decrease incidents where families experience similar uncertainties like my family and Jean Frye. 

The local Alzheimer’s Association Chapter in North Carolina is taking action by developing partnerships in the Black community and offering dementia care & support. Their upcoming virtual Program: The African American Experience of Alzheimer’s and related dementias: A Community Forum for Mecklenburg and Surrounding Counties, will take place on May 10. At this event, learn about Alzheimer’s, dementia and memory loss in this listening session to hear from the Black community. In addition, Dr. Carl V. Hill, the Alzheimer’s Association’s Chief Diversity, Equity and Inclusion Officer will share information from the new Alzheimer’s Association report which examines racial and ethnic attitudes on Alzheimer’s and Dementia Care. RSVP today online or by calling 800.272.3900.

I am thrilled to be a part of this upcoming community forum and continue my advocacy work in dementia care. This work is personal for me. It is my calling. I feel extremely blessed to continue the legacy of my Great Grandma Trollie.

That tender 6-year-old still lives inside of me and will forever be changed by the love and care of my Great Grand Trollie. I hope I make her proud. I am determined to do this work in her honor and continue to advocate for our Black caregivers and elders impacted by dementia.

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