African Americans Suffer From Alzheimer’s at High Rates
“They got lost in the house. How does someone get lost in their own house?” This was the question my client asked me as he began grappling with the reality that his parents were losing their minds. What he did not realize years ago – when his father started asking the same question over and over again, or the time when his mother looked at him and asked “How’s Lonnie doing? Have you heard from him?” or when his father got up in the middle of the night and put on his suit to go to church – they were not just getting old.
They were losing their minds.
This is what life is like for about 5.7 million Americans living with Alzheimer’s, a type of dementia that is the fifth-leading cause of death among American adults 65-85, according to the Alzheimer’s Association. The stakes are even higher for African-Americans, whose older family members are even more likely to die of this unpreventable, uncurable disease that can’t be slowed down. Alzheimer’s is the fourth-leading cause of death among older African-American adults, after heart disease, cancer, and stroke.
The likelihood of suffering Alzheimer’s is up to three times as great among African-Americans than whites. If I didn’t actually know these facts, I could have guessed based on my work with older African-Americans and their families in South Los Angeles and other under-resourced, underserved communities.
Of the many crisis-oriented requests I receive as a social worker, the most common involve the effects of memory loss on a person’s ability to live independently and their family’s inability to care for them. Consider scenarios where an aging parent repeatedly calls the police for no reason or falls into extreme debt for inexplicable purchases or scams. Housing issues come up a great deal: Adult children seek to understand what help Social Security can give (none) and face considering quitting their job when realizing they and their parents can’t afford $7,000-a-month for memory care, special care living units designed for Alzheimer’s or dementia patients. Let’s not even mention latchkey parents; seriously, don’t because health care providers are duty bound to report that.
While, the causes of Alzheimer’s are relatively unknown, the higher prevalence of Alzheimer’s among African-Americans has been attributed to a higher incidence of diabetes, hypertension and poverty – all risk factors for Alzheimer’s. However, few studies focus on risk-reduction factors such as Alzheimer’s education.
Studies show many African-Americans report significantly lower levels of basic knowledge about Alzheimer’s than whites. They also have lower levels of perceived risk of Alzheimer’s, and receive less information than whites from physicians and relatives and because they often don’t access the Internet. Moreover, online information often is presented in an inaccessible manner.
When I talk about brain health as part of my education efforts in African-American communities, I often ask them to “turn and look at your neighbor” just like pastors do in church. Instead of giving their neighbor a hearty greeting or repeating an uplifting phrase, I tell them either they or the person they’re staring at will have Alzheimer’s by the time they’re 85. This always results in audible gasps, disbelief and fear. And this is the case despite the fact that so many people know someone who has a memory problem.
Alzheimer’s is scary. I know. When my mother was diagnosed with moderate to severe dementia a year ago, I wondered if things would be different now, better somehow, if my family hadn’t continued to dismiss the symptoms and accept my mother’s explanations for her unusual behavior: “Why are they listening to someone who is clearly losing her mind?”
Some African-Americans delay consulting a physician about memory problems by as long as seven years, according to Patricia Clark and colleagues, at Emory University. Reasons include their own or their family’s inability to recognize the symptoms, low perceived threat of getting Alzheimer’s or their belief that the symptoms of Alzheimer’s are just part of the aging process.
This tracks with the fact that racial and ethnic minorities have higher rates of chronic disease, obesity and premature death than white people. Black patients, in particular, have among the worst health outcomes, experiencing higher rates of diabetes, hypertension, stroke, and of course, Alzheimer’s disease, linked to lifestyle factors and delayed treatment.
There’s good reason for this: African-Americans often harbor mistrust of the health care system, and have experienced racial discrimination from providers. Numerous studies have identified racial bias by providers as the reason why many African-Americans delay getting screened, diagnosed and treated for both fatal and nonfatal diseases.
A recent study found clinicians in the U.S. saw black patients as less likely to improve because of their belief that black patients as less personally responsible for their health than white patients. Clinicians tended to see black patients as less likely to take responsibility for their health, less likely to follow treatment recommendations and less likely to get better, according to Natalia Khosa, lead author of this study.
Alzheimer’s education is important for everyone. However, increasing Alzheimer’s literacy among African-Americans is crucial for increasing their awareness of their personal risk for the disease, improving care, reducing disparities, and ultimately enhancing the quality of life of people diagnosed and their caregivers.
Health plans typically provide their beneficiaries with general consumer health information and need evidence on the effectiveness of Alzheimer’s literacy programs for minority populations as they bear the escalating costs of care. Providers need scalable care models and delivery programs to improve care and lower costs for high risk patients.
What if you knew you had a 50-50 chance of winning the lottery? Would you play? Now, what if you knew you had a 50-50 chance of losing your mind? Exactly.
— Karen D. Lincoln, Ph.D., an associate professor of social work, director and senior scientist at the University of Southern California, is an Encore Public Voices Fellow. She is the creator of Brainworks, a culturally tailored Alzheimer’s disease literacy program for African-Americans.
Photo: Sebastien Bozon, AFP/Getty Images