The Healing Power of Counseling: Addressing How Racial Inequities Impact Dementia
After her husband died in 1986, Cornelia Moss lived alone in her native Arkansas for 13 years before moving to Wisconsin to live with her daughter.
As the wife of a cotton farmer who raised 16 children in a segregated small town in the South, Moss, who was Black, had lived a hard life filled as much with stress as joy.
“You know, now when I drive by and see people sitting on the porch just relaxing, I think, that was not something my parents could do,” said Moss’ daughter, Jewelline Wiggins, 70. “They never had lax time. There was always something to do just to maintain.”
Moss’ mind steadily broke down during her time in Wisconsin. Her family saw small, gradual changes in her state of mind.
“What we started noticing was that she would get very irritated when you would point out that she had misspoken or misplaced something, or had forgotten something,” Wiggins said. “It frightened her and it bothered her a lot.”
Moss is part of a pattern identified in a growing body of academic research about the prevalence of dementia in Black Americans. Those studies point to racial inequities in people with Alzheimer’s disease and other forms of dementia, dispelling previous beliefs that genetic factors were the root cause. They also discuss growing evidence that early-life stress and neighborhood conditions contribute to dementia risk later in life.
Black people are about twice as likely as White people to develop late-onset Alzheimer’s disease, but less likely to be diagnosed with the condition. One reason for this is the history of abuses against Black people in medical research which has resulted in a well-documented reluctance for them to take part in additional research or seek medical help. Some other contributing factors may include cultural beliefs on aging, inequalities in health care, as well as varying life course influences, like exposure to a stressful environment.
Black men and women are shown to be most at risk, experiencing over 60 percent more incidents of major stressors than non-Hispanic whites over their lifetimes.
Wiggins said the stress her mother experienced could be attributed to segregation and the attitudes of people in the South during her mother’s life there. “The lifestyle itself was just dreadful,” she said.
Moss died in 2014 at age 94 of complications from dementia. Today, her daughter recognizes the consequence of stress on her mother’s mind, and she is trying to ward off those problems in her own life. She left Arkansas because she did not want to experience the same hard life as her mother. She went to nursing school in New Mexico, and later relocated to Madison, WI, after finding opportunities there.
“I came across the causeway and Madison was the prettiest thing I have ever seen,” she said. “I saw a lot out in Albuquerque but that water was pretty and that city was clean. And I said, ‘I’m not going to go back.’”
Working eight years at the Veterans Affairs hospital, and then for 34 years at General Motors, she escaped the stressful life her mother endured.
“You didn’t really have to worry about anything but getting out and being responsible and going to work,” she said.
For the past seven years, Wiggins has undergone annual brain scans, blood tests, and lumbar punctures as part of the Wisconsin Registry for Alzheimer’s Prevention research, the world’s largest longitudinal research study on adults whose parents were diagnosed with Alzheimer’s disease.
Research from the Journal of the Alzheimer’s Association found that a single major stressful event in early life was equal to four years of cognitive aging. Black men and women are shown to be most at risk, experiencing over 60 percent more incidents of major stressors than non-Hispanic whites over their lifetimes. Last July several teams presented evidence at the Alzheimer’s Association International Conference in London that poverty, disadvantage, and stressful life events were strongly associated with cognitive problems in middle age and dementia later in life among Black people. This shows a shift in not only Alzheimer’s research, but also in the way we treat the disease. Because it is based on mental health as much as physical health for this population, how can we prevent or address the issue moving forward?
Counseling Can Help
The research points to the need for the healing power of counseling.
“It’s boots on the ground and grassroots type of stuff,” said Dr. Tonya Davis, a licensed clinical professional counselor (LCPC) in Illinois and a clinical training director and core faculty member in the Counseling@Northwestern program. “For someone who may have just gotten an Alzheimer’s diagnosis, imagine the difficulty of grasping this new information and all that it might mean for the patient and family alike. Psychoeducation provided alongside the various aspects of the counseling process can make room for emotional and mental support as clients and their families work to make sense of this diagnosis.”
In order to equip and empower clients and their families with the tools and resources needed to “maintain homeostasis and experience forward movement,” Davis recommends that counselors complete a thorough assessment of client needs (i.e., personal and familial), identify the potential for personal and communal barriers due to race/ethnicity, gender, SES, etc., and determine if access to resources are accessible and equitable. To specifically help Black Americans experiencing dementia, she also encourages counselors to be steadfast and diligent regarding multicultural awareness, to advocate for individuals experiencing various aspects of discrimination, stereotypes, and biases, and to help stamp out systemic oppression in existing health care systems and communities.
Davis adds that while U.S. Congress has approved funding for more research on Alzheimer’s to go beyond the latest study, questions remain as to what comes next.
“It takes counselors to get out there to advocate for the needs of our communities,” she said.
Trust Is the Key
Alzheimer’s research shows the need for a dramatic increase in studying the health of Black people.
But that could be a challenge. Black Americans tend to be wary of medical research after a long history of abuses by researchers, including the Tuskegee Study in which researchers monitored the progression of syphilis in nearly 400 Black men under the ruse that they were receiving free health care from the U.S. government.
Dr. JoAnn Pritchett, a former higher education professional, hopes Black men and women can trust modern medicine moving forward while also overcoming the history of past abuses. Although she shows no signs of dementia, Pritchett submits to tests as part of a control group for the study in the Journal of the Alzheimer’s Association. And she has been actively recruiting others in the Madison area to participate.
“What you’re trying to do is get people beyond not trusting,” she said. “Knowing how Alzheimer’s effects the [Black] community, I, as a party of one, had to show that I was willing to do this.”
Wiggins agreed, but said convincing the community to embrace science will be difficult. When she first heard her mother’s dementia diagnosis, she had never heard of the disease. When her mother started receiving treatments, she wondered, “What if she’s a guinea pig?” But, over time, she could see that her mother was functioning better under the doctors’ care.
At the time “in our community there was a phobia, a lack of knowledge,” she said.
Today, Wiggins and her husband watch what they eat. They cut back on butter and salt. And, most importantly, they try to reduce stress.
“Maybe we can ward it off,” she said. “I think we may be able to slow down, if not stop this erosion of the brain.”
As research continues in the fight against dementia, counselors will be critical resources for those affected. According to the Alzheimer’s Association, seeking consultation from licensed counselors can provide educational tools as well as support for crisis intervention and complex decision-making related to living arrangements, finances, and quality care. With the help of counselors, those impacted by dementia can receive the assistance they need to help themselves and others.
To be a part of this community of counselors helping individuals with Alzheimer’s, learn more about how to become a clinical mental health counselor at counseling.northwestern.edu.
If you or someone you know is caring for a person with Alzheimer’s and need support, call the 24/7 Alzheimer’s Association Helpline at 1.800.272.3900 or visit www.alz.org.