In 2008, Aliyah Gause’s great-grandfather came up from Florida to live with her and her family.
“My family is very loud, very entertaining,” she said. “So, when he came up here … I just knew that he was going to be this fun-loving person."
But her parents informed her that her great-grandfather had dementia.
“I thought it was going to be the situation [where] I just have to repeat myself,” she remembered.
When he arrived, however, he stayed to himself, remained very quiet and was confused.
“He was in a time period way before I could have existed.” she said. “It was really sad."
At the onset of the COVID-19 pandemic, the situations for Black families like Aliyah’s got even worse. Studies arose linking the SARS-CoV-2 virus to various psychiatric complications, cognitive decline and long term motor impairment – even more so for people of color.
When, at the beginning of the pandemic, Gause also had to confront her grandfather’s dementia diagnosis, things were completely different.
“It was right around when COVID started, he was acting a little strange,” but the pandemic made it difficult to provide him with care.
“With COVID, we weren't sure,” she notes, “because we weren't able to check up on each other, we couldn’t be around each other."
Suddenly, Gause’s grandfather began struggling with bodily functions, experiencing memory lapses , and complaining of heart problems. He had a rapidly progressing, hallucination-inducing form of dementia called Lewy Body Dementia.
Within seven months of the diagnosis, she remembered “seeing him go from being competent to maybe forgetting some things […] to having to admit him to the hospital and put mitts on his hands because he's trying to attack the nurses.”
It was hard, she admits.
Dr. Faika Zanjani, associate professor of gerontology at Virginia Commonwealth University and co-director of the VCU Richmond Brain Health Collaborative (RBHC) explains: “Stress, of any kind, impacts the brain.”
She notes that socioeconomic stressors, such as poverty and racial violence, increase cortisol levels in the brain. High cortisol, which summons our fight or flight responses, can cause neuroinflammation.
“Scientifically, we know that stress, especially economic stress, increases brain-aging,” she said. “In the situation of dementia, specifically, it increases confusion, behavioral problems, impairs cognitive functioning … and if the stress is related to basic needs, … they're fighting this fight without the basic resources that they need to survive.”
While Gause’s family had some resources to care for her great-grandfather and grandfather, many people from marginalized socioeconomic backgrounds have none.
“The same health disparities that we see with other diseases, like heart disease, cancer, diabetes, all of those are encompassed in brain health,” said Katie McDonough, executive director of the southeastern Virginia chapter of the Alzheimer’s Association. “We know that to combat Alzheimer’s disease, you have to have access to good healthcare, good foods and a healthy diet. If there’s a lack of access to those things throughout the lifespan, we know that’s going to increase risk [of disease progression].”
McDonough noted that this risk of progression is furthered by the persistence of racial and economic disparities across the country.
“I found out there is still discrimination within the medical care system,” Gause said. “There are still people trying to go to their doctor, and their doctors are not giving them the time of day."
According to the Alzheimer’s Association: "The difference in risk for Alzheimer’s and other dementias is explained by disparities produced by the historic and continued marginalization of Black and Hispanic people in the United States."
The socioeconomic effects associated with a dementia diagnosis makes coping much more difficult.
For instance, homelessness, one of the ripple effects of lacking access to dementia care, is surprisingly easy to fall into.
“Someone gets diagnosed all of a sudden with a terminal disease … and because it affects cognitive ability for someone … a lot of jobs can’t be done anymore,” explained Joshua Myers, director of government affairs at the Alzheimer’s Association. “So, many people have to fold up shop."
Essentially, he said, “your housing situation, your family situation, everything, has been flipped upside down."
Dr. Lana Sargent, associate professor at the VCU School of Nursing and co-director of the VCU Richmond Brain Health Collaborative (RBHC), said, “Sadly, I have someone in that pipeline now.” However, they are working to fight that pipeline. “We’re learning what it takes to disrupt it …. We know that all these factors have to be taken into account, but we haven’t found the magic disrupter."
VCU’s Zanjani added: “From what we’ve seen in our work, … it's not an issue of engagement it's an issue of access."
Through the Richmond Health and Wellness Program and the VCU RBHC, issues of access are addressed by meeting people wherever they are — be it their own housing units or at the VCU Health Hub at 25th Street in Richmond’s East End.
“There are issues of trust, still,” Zanjani admitted. But by showing up and working with local partners, the VCU RBHC has seen success, she said.
“We started some of this work through our health coaching, and our population loved it,” she states. “They said, yes we need support for prevention, we need support for health management, and we need support for our caregivers."
Investing in the community proved a necessary tool on the path towards disruption.
After her experiences with the racial and economic effects of dementia firsthand, Aliyah Gause became invested in looking for a solution.
“It definitely led me to want to know more,” she said. “A lot of these [diseases] are genetic, they are hereditary, so I needed to know more."
This desire to know more catapulted her to work with the New IDEAS study — a clinical trial run by the Alzheimer’s Association that will ensure more than 50% of participants will be people of color.
Gause noted that amyloid plaques, an accumulation of misfolded proteins between nerve cells, is what most doctors look for during scans of dementia patients. In the New IDEAS study, patients receive an IV that sends a medical-grade dye into the body, through channels of brain mass, in order to locate pockets of amyloid plaque build-up.
“This is way better than an MRI or a CT, where they just scan the brain,” Gause said. “We are really going in to see the amount, the depth, where and how it started."
Through this new approach, the only thing left to figure out is why.
“Our community is so accustomed to dementia that when … I tell them that it's not supposed to be like this, they're amazed,” she said.
Gause noted that being unwell is too often accepted in the Black community: "Other people don't go through that, that's not normal. But it always happens to us. Well, let's talk about it."
The conversation continues to happen between healthcare professionals, caretakers and patients alike.
“We have a generation that wants to live alone longer, they don’t want to go into assisted living, they are fiercely independent," Sargent said.
In order to keep it that way, Gause encourages people to educate themselves and get involved in as many ways as they can.
“Having our community have that conversation, seeing people acknowledge the problems … to see the empathy, it was amazing,” she said.
Gause argued that people still need to challenge their physicians, challenge the world around them and take their health seriously. Knowledge is power, and she hopes to see that knowledge blossom into a cure for Alzheimer's at some point in her life.
“It would not surprise me if the key to what we’re looking for lies in one of us," she said.
Tani Washington, VPM summer intern, is an honors undergraduate student studying African History and Political Science at Western Kentucky University.
