Jessica Guthrie is already making arrangements for her mother Constance’s funeral, even though she is still alive. The funeral will take place in a funeral home owned by Black Americans and will feature ancestral songs. Rather than a sad reflection on her long decline, Jessica envisions it as a celebration of Constance’s life.
Constance, who is a Black woman, has lived a full life for 74 years as a mother, educator, and businesswoman. However, she is now battling Alzheimer’s disease, which is disproportionately affecting Black Americans, and is expected to increase in prevalence in the coming years.
In the United States, Black Americans face a higher risk of Alzheimer’s compared to white Americans. Unfortunately, they are less likely to receive accurate diagnoses and adequate treatment due to the bias present in the medical system.
The Centers for Disease Control and Prevention reports that 14% of Black Americans over 65 years old have Alzheimer’s disease, whereas only 10% of white Americans in the same age group have the condition.
The actual disparity is likely much greater, as many Black Americans are not appropriately diagnosed. Shockingly, by 2060, the number of Alzheimer’s cases in Black Americans is expected to increase by four times.
Although some risk factors for Alzheimer’s may vary depending on race, genetics cannot fully explain the significant disparities that exist among racial groups. The issue of racial inequality begins early in life. Health problems such as heart disease and diabetes increase the risk of developing Alzheimer’s disease. These conditions are more prevalent among Black populations due to factors such as pollution from nearby industries, lack of healthy food options, and chronic stress. Other contributing factors include depression, high blood pressure, obesity, and poverty.
Moreover, Black Americans are not provided with the same level of quality healthcare as white Americans across all stages of life. This disparity exacerbates the likelihood of developing Alzheimer’s and other health issues.
Unfortunately, Black Americans are often not provided with high-quality medical treatment or any treatment at all, even for conditions that are risk factors for Alzheimer’s disease. As a result, they are less likely to receive medication that could alleviate symptoms associated with Alzheimer’s and other dementia-related illnesses.
Moreover, systemic racism creates trauma and increases stress levels, leading to health issues such as inflammation, which is a risk factor for cognitive decline. Dr. Carl V. Hill, Chief Diversity, Equity and Inclusion Officer of the Alzheimer’s Association, explains that racism is a form of trauma that can contribute to cognitive decline.
However, due to inequitable access to healthcare, medication, housing, and other basic needs, Black Americans who experience racism and discrimination are not given a pathway to reduce their risk of developing Alzheimer’s disease or other health conditions.
Dr. Hill describes the situation as a “one-two punch” for Black Americans. For people like Jessica, it means that the final years of her mother’s life have been filled with frustration and heartache as she navigates doctors who do not believe her mother is suffering and is left with few healthcare partners. Despite the slow and steady decline of her mother’s health, Jessica has found that healthcare providers do not take her concerns seriously.
“Having to care for someone with Alzheimer’s means watching your loved one die every day. I’ve been grieving my mom for seven years,” Jessica said.
The experience for caregivers of Black Americans with Alzheimer’s can be lonely and isolating, as these caregivers often struggle to find adequate support and resources to provide care effectively. For Black Americans living with Alzheimer’s and their caregivers, addressing systemic racism in healthcare is critical to ensuring that they can access quality care and support services, which are essential for managing the disease and maintaining quality of life.
Constance Guthrie was the proud owner of “Hair by Connie,” a salon that was the go-to spot for Black women seeking to look their best in Alexandria, Virginia. For over 18 years, she presided over the salon, traveling the world to attend hair shows. Constance was a colorful and larger-than-life personality, attending fashion shows such as “Tall, Full and Sassy” and dressing flamboyantly to match her persona.
In the 1990s, she faced a difficult decision and chose to close her much-loved salon and move to Fredericksburg. Constance purchased a home in the area so that her daughter could attend the best schools. She later became a paraprofessional in the local school district and decided on her schedule so that she could attend every choir recital and oratorical contest her daughter participated in.
Constance was always there for her only child, Jessica. Together, they stayed up late working on school projects, despite having limited resources. Jessica was surrounded by her mother’s love and support throughout her childhood and felt that Constance gave up everything to ensure that she had the best opportunities and support.
Jessica became a teacher and eventually moved to Dallas to build her own life and pursue her dreams. She became a successful chief program officer for an education service organization. Unfortunately, seven years ago, Constance’s health began to decline, and her descent into dementia began.
Constance’s symptoms progressed, and she began to forget simple things, like where she left her keys. She got lost on a familiar route she had traveled almost daily for 18 years, and was even involved in a car accident. These troubling incidents occurred more frequently, causing concern for Jessica who was still living in Texas, hundreds of miles away.
The family attempted to use Post-It notes to help Constance remember her daily tasks. The walls of their home are still lined with colorful notes. However, for a woman who had grown accustomed to being so independent, accepting that she needed help was challenging.
Constance tried to hide her condition, telling others that she just forgot things and was fine. Her anxiety and stress increased because she was trying to cover up her struggles from others, while her symptoms worsened.
As her condition progressed, Constance began to wander around her neighborhood, causing concern for her loved ones. Jessica and others tried to bolt the door to prevent her from leaving unaccompanied. A neurologist confirmed that Constance was suffering from early cognitive decline, which was likely Alzheimer’s disease. She was just 66 years old when she received this diagnosis.
After Constance was diagnosed with early cognitive decline and likely Alzheimer’s disease, Jessica faced a difficult decision and moved back home from Dallas to care for her mother full-time. Jessica recently started working remotely again after an extended leave of absence caring for her mother.
Constance did not have any of the common risk factors for Alzheimer’s such as diabetes or high blood pressure. She was relatively active, often walking around her neighborhood until she suffered a transient ischaemic attack (mini-stroke) in 2015, which briefly disrupted the blood supply to part of her brain.
Jessica believes that the stress of her mother’s job as a special education paraprofessional, where she worked for 18 years, may have contributed to the mini-stroke. Additionally, she questions if genetics played a role in her mother’s diagnosis. Constance’s aunts all live with the disease, and her brother, who was a doctor, has begun to experience cognitive decline.
Constance is no longer able to communicate the difficulties she faced as a Black mother and entrepreneur running her own business. Nevertheless, her daughter Jessica can attest to the challenges of being a Black caregiver and trying to ensure her mother receives appropriate care.
In 2018, Constance began pointing to her stomach repeatedly, indicating she was in pain. Jessica brought her mother to her primary care physician, who is white, but the doctor brushed her concerns aside. Despite Constance being unable to communicate her pain accurately, Jessica knew that something was not right. However, the doctor did not listen and even questioned if Constance was truly experiencing pain. They sent her home without performing diagnostic tests, although the pain persisted.
The following day, Jessica took her mother to the emergency room where a Black male doctor ordered the necessary imaging. The results showed that Constance had a painful, protruding hernia that required emergency surgery.
After the surgery, Constance’s health declined even further, putting her in a state of constant confusion. Jessica had to fight for her mother to receive appropriate treatment, which included receiving regular medical care visits as well as psychiatric care.
As a Black caregiver, Jessica had to navigate a healthcare system that did not take her concerns seriously. It was due to her persistence and advocacy that her mother received the medical care she needs.
On another occasion, Constance was experiencing intense pain in her legs. Although she had been diagnosed with arthritis in her knee, Jessica suspected that the pain was a symptom of something more severe and took her mother to the emergency room.
In the emergency room, medical staff dismissed Constance’s complaints while Jessica was attempting to explain her mother’s pain and advocate for appropriate care. Jessica had to push for further evaluation, and it was eventually revealed that her mother had blood clots in her leg.
As a Black caregiver, Jessica had to contend with both implicit and explicit biases from healthcare providers, which affected her ability to communicate her mother’s health needs and ensure she received the appropriate care.
Despite being confident that her mother’s leg pain was more severe than just her knee arthritis, the medical staff in the emergency room dismissed Constance’s complaints. The doctor suggested that she only needed rehab for her bad knee, leaving Jessica with a feeling of unease. Knowing that her mother needed further evaluation, Jessica pressed for additional testing.
Eventually, further testing revealed that Constance had a blood clot in her leg. Jessica’s insistence, advocacy, and push for additional testing led to an accurate diagnosis and appropriate treatment, regardless of the initial dismissiveness from healthcare providers.
As a Black caregiver, Jessica had to overcome the implicit and explicit biases from healthcare providers to ensure her mother received the essential treatment she needed.