In September, two drug companies announced that an Alzheimer’s drug they’re developing slowed the rate of cognitive decline in 27% of participants in a clinical trial.
The news offered hope for anybody suffering from Alzheimer’s disease, a type of dementia that profoundly affects memory, thinking and behavior.
But that hope won’t go as far as it could in Wisconsin’s African American community and other communities of color. Why? Because people of color are underrepresented in clinical trials, including those that test the effectiveness of drugs for Alzheimer’s disease.
Dr. Fabu Phillis Carter is working to change that.
Research is vital
Carter, or Fabu, as she’s known in the community, serves as the senior program manager for recruitment and retention for two Alzheimer’s studies conducted through the University of Wisconsin-Madison’s Alzheimer’s Disease Research Center (ADRC).
Carter’s work is part of a nationwide effort to include more people of color in clinical trials.
It’s an effort hampered by the painful memories of the Tuskegee Syphilis Study and other instances of institutional racism perpetrated by the scientific establishment down through the decades.
“Everybody knows the history of people of color in research not being respected or valued,” Carter told UMOJA. “The reason why research is so vital is that the medicines are created from studies with a very low percentage of people of color.”
“That means the medicines don’t work as well on them. That becomes really problematic with Alzheimer’s disease, because African American people lead in the disease. As a race you don’t benefit from intervention or prevention.”
‘What can we do for you?’
One of the studies Carter recruits for is called AA-FAiM: African Americans Fighting Alzheimer’s in Midlife.
AA-FAiM is open to people ages 40-85 with no diagnosed memory problems. She describes AA-FAiM as a “wraparound” program.
AA-FAiM offers year-round exercise and nutritional programming, as well as guest speakers on topics such as COVID-19, high blood pressure, and other health issues. Carter said AA-FAiM was developed with the needs of the community in mind.
“What these two studies have done is create programming that responds to what the African American and indigenous communities want to participate in research,” Carter said.
“What I did when I first started working here was survey the community to say ‘What can we do for you that would be important and would be a give-back and would make you want to participate?’”
Carter said the “give-back” approach to recruiting study participants is an attempt to build lasting relationships with the community.
“What we’ve done is say ‘We just don’t want you to come into the research and help us find a cure—we also are interested in you being well now,’” she said.
Carter’s work in the fight against Alzheimer’s goes beyond her position at ADRC.
Carter, who served as the City of Madison’s poet laureate from 2008 to 2011, also serves as the Madison director of the of the Alzheimer’s Poetry Project.
“It uses poetry as a way to help people ignite their memory but also to let people create poetry together as a way to feel accomplished, because Alzheimer’s robs people of their memory but also their confidence in their ability to do things,” she said.
For her work with elders in the Madison community, NewBridge Madison, a nonprofit, gave Carter its 2022 Champion of Hope award.
Carter said she loves working with elders because of their link to the past.
“In working with this population, you hear — if you’re willing to listen — people’s stories of great things, of horrible things. One woman told me how she used to be walking down a dirt road down South and someone would say, ‘Don’t go that ways, so-and-so has been lynched.’”
“Elders are living history,” she said. “They are so accomplished and, for the most part, humble. They don’t talk about what they’ve seen or what they’ve done but they have quietly been living these dignified lives. That’s what I enjoy the most about working with them.”
If you’re interested in participating in the AA-FAiM study, call Dr. Fabu Carter at 608-235-4745.
Early Signs and Symptoms of Alzheimer’s
Memory loss that disrupts daily life may be a symptom of Alzheimer’s or another dementia. Alzheimer’s is a brain disease that causes a slow decline in memory, thinking and reasoning skills. Here are a few warning signs and symptoms provided by the Alzheimer’s Association. If you notice any of them, don’t ignore them. Schedule an appointment with your physician.
Memory loss that disrupts daily life
One of the most common signs of Alzheimer’s disease, especially in the early stage, is forgetting recently learned information. Others include forgetting important dates or events, asking the same questions over and over, and increasingly needing to rely on memory aids or family members for things they used to handle on their own.
Challenges in planning or solving problems
Some people living with dementia may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.
Difficulty completing familiar tasks
People with Alzheimer’s often find it hard to complete daily tasks. Sometimes they may have trouble driving to a familiar location, organizing a grocery list or remembering the rules of a favorite game.
Confusion with time or place
People living with Alzheimer’s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.
Withdrawal from work or social activities
A person living with Alzheimer’s disease may experience changes in the ability to hold or follow a conversation. As a result, he or she may withdraw from hobbies, social activities or other engagements. They may have trouble keeping up with a favorite team or activity.
Decreased or poor judgment
Individuals may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money or pay less attention to grooming or keeping themselves clean.