Due to multiple historical and socioeconomic factors, Black Americans are twice as likely as white Americans to develop late-onset Alzheimer’s disease, yet significantly less likely to be diagnosed with the condition.

In a recent blog post, The Family Institute at Northwestern University’s online Master of Arts in Counseling program addressed how counselors who deal with dementia in the Black American community must consider multiple factors that can contribute to poor mental health among Black people.

“It takes counselors to get out there to advocate for the needs of our communities,” said Dr. Tonya Davis, a licensed clinical professional counselor (LCPC) and core faculty member for Counseling@Northwestern.

Dr. Davis recommends counselors assess client needs, identify potential barriers, and determine if resource access is equitable: “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.”

So, if professional counselors and researchers are aware Black Americans are at a higher risk of contracting dementia, why are the diagnosis rates so low? There are multiple factors, including distrust of the U.S. medical research system, the stigma of mental health issues, and lack of access to proper healthcare.

Sources of Distrust

 In 1932, the Public Health Service Institute began working with the Tuskegee Institute to research syphilis in Black Americans males. In return for participating, hundreds of Black American men, the majority of whom were diagnosed with syphilis, were given free medical exams, free meals, and burial insurance. They were led to believe they were being treated for their ailments when, in fact, they were not receiving the proper treatment –– even after an official cure was published.

These institutions used the innocent lives of Black people to advance their research. Many of them died believing a treatment they had never truly received failed them. Since this occurred, Black American distrust of the medical research field has been consistently affecting those who would otherwise participate in research for the improvement of their community. Since this study, going to see a medical professional for psychological reasons has become taboo in the Black American community. People are afraid of being judged by family members, friends, and possibly even their spiritual leaders.

The key to bridging the gap between patients being more open to medical research and assistance may be counseling. Counseling takes the time to build the trust between patient and professional that may be required to break the stigma surrounding medical treatment.

According to Dr. Davis, “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.”

It will take a long time to change the mindset of the entire community, but the process must begin with individuals and gradually spread. Dr. Davis calls it “boots on the ground and grassroots type of stuff.”

The imbalance of development and diagnosis of dementia also correlates to the fact that Black Americans are more likely to have grown up in stressful environments, according to the Journal of the Alzheimer’s Association.

Recent research has linked early-childhood stress with dementia in older adults. Historically, Black people in the United States have faced racial oppression and segregation that led many to live in low-income areas with poor conditions. As published on Counseling@Northwestern’s blog, Black men and women experience over 60 percent more major stressors than Hispanic and white people over their lifetimes.

According to the Health and Human Services Office of Minority Health, Black Americans are 20 percent more likely to experience serious mental health problems than the general population. According to the National Alliance on Mental Health (NAMI), common mental health disorders among Black Americans include major depression, attention deficit hyperactivity disorder, suicide and post-traumatic stress disorder.

Counseling is an important part of building individual patient-professional relationships in order to serve communities as a whole. Counselors can be a valuable resource and drive those affected by dementia to the assistance they need.