Dying Indifference: Confronting the Shame of Alzheimer’s in Black Communities

Medical records from as early as 2002 indicate that Rosa Parks had progressive dementia. (Photo credit: Getty Images)

This article was published in Ghosts Issue #80 | Fall 2018

I was interviewing African American families to find one to profile in a piece on Alzheimer’s in the African American community for the Washington Post’s Sunday magazine. I thought I had found them: A family of eight—two parents, six children—that had been reduced to seven when the father died.

Both parents had developed Alzheimer’s disease in their late 70s, the mother showing the first signs after the death of her husband.

The siblings contradicted the pattern I had so often seen in families, where one adult child serves as the family’s anchor, carrying the load of care for a parent. Here, all six siblings worked together like a well-oiled machine to care for their mother. They visited her at the home of the middle daughter, her primary caretaker, to give their sister respite; stepped in regularly to assist with their mother’s physical care; and shared the financial requirements of her care.

Yet when a family meeting was called to decide if they would be willing to be profiled for my article, the siblings were torn about the prospect of “public exposure.” The most successful of them—a Washington D.C.–based businesswoman, spoke frankly, saying that she worried her business would be negatively impacted if others knew that her father had died of Alzheimer’s and that her mother was now living with the disease. “In the Black community, one of the biggest obstacles to treatment of Alzheimer’s is the silence and stigma it engenders in those affected by it and their families,” says Dr. Goldie Byrd, director of the Center for Outreach in Alzheimer’s, Aging, and Community Health at North Carolina A&T State University. The family decided not to participate in the story. For this caring and committed family of well-educated professionals, shame and stigma overruled an opportunity to help others in their community understand the toll Alzheimer’s takes on families like theirs.

I am a storyteller. So I will tell you a story of how writing about an incurable disease taught me about life and living and love and death. This journey chose me, and at the time I didn’t understand why. I had spent years researching Alzheimer’s as a way to understand and write about it in fiction, and then suddenly found myself writing about it in journalism.

It took a long time to figure out why I wrote about this disease when it had not touched me personally; I was neither its victim nor the caretaker for someone who was. It has always been important for me to put myself on the front lines of any story I tell, whether it means conjuring make-believe in a novel or reshaping reality in memoir.

Investigating Alzheimer’s in the African American community kindled the activist in me and impelled long-overdue thoughts and decisions about how I wanted to live—and how I wanted to die. During the five years I spent researching and writing—first a novel, then that Washington Post article—I was buoyed by the courage of the families of Alzheimer’s patients, marveling at how they modeled loyalty and devotion, finding new and transformative forms of love as they cared for their loved ones.

A Collective Dementia

An estimated 5.7 million Americans live with Alzheimer’s disease, the most common type of dementia. The progressive illness disrupts daily activities and cognitive skills such as memory, judgment, and language; eventually, it affects the parts of the brain that control bodily functions such as walking, swallowing, and using the bathroom.

African Americans are twice as likely as non-Hispanic whites to develop Alzheimer’s, representing more than 20 percent of Americans with the disease yet accounting for only 3 to 5 percent of those enrolled in clinical trials. In African Americans, the gene associated with Alzheimer’s, ABCA7, is a higher-risk indicator than for whites. This genetic link, when added to the rates of diabetes, high blood pressure, and obesity in the Black community, mix with the psychological and emotional stress of racism to create what Darrell J. Gaskin, director of the Center for Health Disparities Solutions in the Bloomberg School of Public Health at Johns Hopkins University, calls “an existential threat.”

Why? Because African Americans are more likely than non-Hispanic whites to have multiple cases of Alzheimer’s and other dementia in the same family, and are often diagnosed at a more advanced stage. African Americans who leave the workforce to care for an affected family member lose, on average, more than $300,000 in earnings, pension, and Social Security benefits over their lifetimes and are more than three times as likely to live in poverty as white Americans. The cultural codes of the Black community privilege caring for our elderly at home rather than placing them in institutions, especially given that the cost of high-quality, long-term care in a private memory-care facility can cost between $5,000 and $7,000 a month.

Though the public face of Alzheimer’s is often an elderly white male, the fastest-growing group affected is Black women. Blacks and Latinx people are also developing the disease at increasing rates; no one is certain why, even as researchers search for a cure. In America, researchers receive paltry levels of support and work against continuing silence about and stigmatization of those with the disease.

The high incidence of Alzheimer’s among African Americans is shocking, but even more disheartening is that so few of the doctors and caretakers who work with patients seem to be aware of the disparity or working to solve it. The heartbreak of the disease is that the silence, shame, and indifference it inspires springs from our culture’s attitudes about aging, dying, and the value of those who are growing old. “They’re going to die anyway” is one such attitude in the medical profession that helps explain why only 45 percent of those with Alzheimer’s and other dementias are formally diagnosed.

Close to Home: A Tale of Two Families

Jonathan had always been close to his mother, Janice. He was the youngest, and his older siblings, Alex and Nina, had watched with a mixture of awe and some envy the bond Janice and Jonathan shared. Jonathan was the first to recognize that something was wrong with their mother: Janice kept getting lost driving to familiar places. She resisted answering his questions about the changes he was witnessing. She called him by his brother’s name.

The heartbreak of the disease is that the silence, shame, and indifference it inspires springs from our culture’s attitudes about aging, dying, and the value of those who are growing old.

Alzheimer’s was the diagnosis they had feared and eventually received. Envisioning the challenges that awaited him and Janice, Jonathan quit his job as a graphic designer to care for his mother full time. He moved her from Philadelphia to Los Angeles to live with him. This, for Jonathan, was more than caretaking; it was being present for his mother for as long as she was able to be present. To share with his mother the mundane and the majestic of every day, every hour, before she slipped away.

I met Janice and Jonathan at an UsAgainstAlzheimer’s summit, where they were on a panel together. Janice, then in the early stages of the disease, was a dignified, graceful woman in her 60s who spoke frankly about how it felt to slowly lose memory, cognition, and a sense of self. The connection between mother and son was palpable, and in a moment of vulnerability, Jonathan spoke of his dismay that his siblings sent checks and called occasionally but were too busy or too intimidated by their mother’s transformation to join him in what he called “the greatest adventure of my life.”

“I want to find a way to tell them,” he said of his siblings, “‘Yes, this thing that Mom is going through is awful and it’s scary, but what she and I are experiencing as I honor her and witness her change is so deep.’ I want to tell them [to] come and get some of this. It will change your life. I have never loved my mother more.” For Jonathan, every day with Janice was measured in present moments, and he had chosen to live in the redemptive space of the committed caregiver who witnesses and is strengthened by the grace of the task at hand. Every day, Jonathan found a way to access the honor bestowed upon the caregiver, and to live and move beyond the obstacles.

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American restaurateur B. Smith with abstract aura photography colors

B. Smith, model and restauranteur who is currently fighting Alzheimer’s. Getty Images.

WHAT WE NEED NOW

We need a national education campaign that educates people about Alzheimer’s disease—and that directly targets the Black community. We need to confront and challenge the lack of basic knowledge about—and the silence and stigma around—this disease. People affected might be diagnosed earlier, allowing families to more effectively marshal the emotional and financial resources required to hang in there for the long haul.

More than a decade ago, when a national prostate cancer awareness campaign was launched in Black churches, Black media, and Black sororities and fraternities, there was a dramatic increase in the number of Black men seeking prostate exams, and an attendant decrease in the number of Black men dying from the disease. Occasionally, popular culture can also successfully step into the breach to speak on subjects often burdened with shame, as it has with ABC’s How to Get Away with Murder, which has for three seasons explored the lives of a Black family dealing with Alzheimer’s.

In season three, Annalise Keating (Viola Davis) is on trial for murder, and her parents attend the trial, during which Annalise’s mother, Ophelia (Cicely Tyson), shows the first signs of dementia. Ophelia is convinced that Ann-alise is on trial for a crime she herself committed: That long-ago act of revenge now haunts Ophelia, and she fears her daughter will pay the price. This episode also explores one common response to the onset of Alzheimer’s: Ophelia’s husband and primary caretaker, Mac (Roger Robinson), is overwhelmed by the new demands of the disease and clings to the hope that his wife just has, per the family doctor, “a bit of dementia.” Ann-alise, already facing possible imprisonment, must at the same time ensure that her mother has access to care that her father may not be able to provide. The charges against Annalise are ultimately dropped. But there will be no such reprieve for Ophelia.

Annalise serves as the “family anchor”—the spouse or adult child who rallies the family to action or connection. In some real-life cases, the family anchor is unsupported. Black families across classes are buffeted by so many destabilizing forces—discrimination, lower salaries, disparities in access to good healthcare—that rallying the family can be a thankless and lonely undertaking. As in many Black families, Annalise alone takes on the role of researcher, organizer, and educator.

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American R&B/soul singer Etta James with abstract aura photography colors

Etta James, diagnosed with Alzheimer’s in 2009. Getty Images.

Season four opens with Annalise arriving in her hometown of Memphis to visit her parents. Opening the front door, she hears the tinkling of a bell that her father has set up to alert him should Ophelia try to leave the house unaccompanied. The bell also foreshadows the disease’s progression and the challenges that await Annalise: Ophelia has been wandering, and Annalise has come home to put Ophelia in a full-time memory-care unit.

The most breathtaking scene comes when Ophelia wakes up one night shouting that the house is on fire. In her dementia, Ophelia’s reliving a past memory, and Annalise tries to break her out of it, holding her mother by the shoulders and telling her that her fear “is just the dementia.” This moment between two magnificent actors is heartbreaking. Later, Annalise bathes her mother as they sing a song from Annalise’s childhood; she has become her mother’s mother. Yet Ophelia bravely insists, looking into her daughter’s face as though trying to imprint it in her fast-fading memory, “I haven’t lost my whole mind, not yet.”

Rarely has a Black family in crisis been depicted with such brutal and compassionate honesty. Gil Scott-Heron famously said “The revolution will not be televised”—but sometimes it is.

Until a cure is found for Alzheimer’s, African Americans must break the silence in our communities. All we can do is live our lives and honor our bodies. I am honoring mine and have enlisted in the fight against one of my generation’s hidden health crises.

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by Marita Golden
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Marita Golden, the author most recently of the novel The Wide Circumference of Love, is the cofounder and president emeritus of the Zora Neale Hurston/Richard Wright Foundation, a veteran teacher of writing, and an acclaimed, award-winning author of 16 works of fiction and nonfiction. She has served as a member of the faculties of the MFA Graduate Creative Writing Programs at both George Mason Virginia Commonwealth Universities, as well as in the MA in Writing Program at John Hopkins University.