The CDC estimates that the number of people with Alzheimer’s Disease and related dementias will double by 2060. The director of the CDC has also acknowledged the existing disparity between various ethnic groups and the effect this sharp increase will have, especially on black people. They report that the African American population has the highest percentage of dementia cases at nearly 14% but that by 2060, Hispanics are likely to surpass this. However, black Americans still face many challenges in fighting this brain disorder. Let’s look at some facts surrounding Alzheimer’s Disease and black people.
African Americans are More Susceptible to Risk Factors
You may not be surprised that the African American population typically has more risk factors for dementia. Even those they share with different ethnicities and multiracial people, affect the race disproportionately. Some risk factors lead to others. Many are unavoidable, but some could be lessened with better education and resources within mainly black communities.
- Age: The risk of developing Alzheimer’s increases as you get older, with the highest risk after age 85. We should note that caucasians still have a longer lifespan, on average, compared to blacks, but that the life-expectancy gap has narrowed significantly in recent years.
- High Blood Pressure: More black men are diagnosed with hypertension than white males. The disparity between black and white women is even more significant.
- Vascular Conditions: While this is still being studied, those with chronic vascular conditions may be at higher risk.
- Stress and Depression: It’s well documented that African American communities experience higher rates of depression and related symptoms of stress due to racism, segregation, socioeconomic barriers, and more. Stress directly contributes to cognitive decline later in life.
- Diabetes: Stress and many of the same risk factors can lead to diabetes, which creates another risk factor for dementia.
- Heart Disease and Stroke: Vascular dementia is typically caused by a stroke but may be caused by any condition that reduces or blocks blood flow to parts of the brain, damaging brain tissue.
- Obesity: It hasn’t yet been proven that weight contributes directly to the risk of developing dementia. However, obesity does increase your risk of diabetes and heart disease. All three can be decreased with a healthy lifestyle.
- Family History: There appears to be DNA unique to African American populations making them more susceptible to dementia. If you have a family member with Alzheimer’s Disease, you should be screened regularly and limit your risk factors.
- Exposure to Pollution: One study suggests that those living in neighborhoods with higher levels of environmental pollution are at higher risk of developing dementia.
Many View Dementia and Aging Differently
African American adults perceive their health and the health care system differently than others, especially compared to white men. Some misperceptions may come from a lack of health education, and others from previous experiences, either their own or people they know. However, the Alzheimer’s Association reports that more than half of black people believe that significant memory loss is natural as they get older, and only about a third are concerned as symptoms develop. Even more startling is that these numbers are despite nearly two-thirds of Black Americans knowing someone with some form of dementia and severe memory problems.
Healthcare Discrimination Affects Patients and Caregivers
Discrimination is a significant part of black history. Healthcare disparity is one of the ways in which black communities are still affected by it, and there are several reasons these racial inequalities persist. Neighborhoods comprised mainly of African Americans often don’t have enough clinics or hospitals. If they do, they may not have access to the latest technology, or those who live there might not be able to afford it. The rates of low-income health insurance are higher in primarily black communities, which can limit the care received.
Even within these neighborhoods, there is a lack of diversity among providers, making it challenging for patients and caregivers to find a doctor with the same ethnic background. Caregivers may find navigating the healthcare system more difficult, especially with some types of insurance, like Medicare, because they haven’t done it before, and the processes can be confusing. Finding a caseworker or other advocate is a hurdle that many family members face when a loved one is diagnosed with Alzheimer’s Disease or dementia.
Blacks are Less Likely to Receive an Early Diagnosis
Even though black people are up to two times more likely to develop Alzheimer’s Disease than the general population, only a third will receive a correct dementia diagnosis and begin a treatment plan on the first visit compared to white patients. In total, African American patients are 10% less likely to receive a diagnosis of dementia at all even as the disease progresses and the first symptoms develop.
Cultural perceptions delay care for memory problems because many believe it to be a natural part of aging. Black people often won’t see a doctor until more severe signs of dementia develop, like hallucinations and behavioral symptoms. This makes it less likely they will be diagnosed early on. Discrimination may play a factor, as it seems that many patients need to exhibit more severe symptoms to warrant a dementia diagnosis than white patients. Some people may not have access to health care due to socioeconomic status, even with low-income options and the Affordable Care Act (ACA). In 2018, it was reported that 9.7 percent of black racial groups were uninsured compared to only 5.4 percent of Caucasians.
The Cost of Care is Typically Higher
The cost of medical care for those in the early stages of dementia is much lower. Many patients can still live at home with a family member as long as they have supervision until the disease progresses and memory loss worsens. However, this assumes a treatment plan only for mild cognitive impairment. Managing behavioral symptoms can be much more costly, including in-patient care in a facility designed for more advanced cognitive decline. According to UsAgainstAlzheimer’s, the cost of treatment of dementia and dementia-related illnesses in the United States for African Americans was over $71 billion in 2012. With the number of cases of dementia estimated to double overall by 2060, these costs will become astronomical, especially for those seeking care for more advanced stages of the disease.
Survival Rates Vary Among Ethnic Groups
It’s difficult to find a consistent answer when determining how long individuals living with dementia will live past their diagnosis. A study by the University of Southern California School of Gerontology found that the African American population with dementia had one of the shortest survival rates, only slightly longer than caucasians. One published by the National Institutes of Health places black people above both white and indigenous populations. However, we should note that many develop Alzheimer’s much earlier than they seek treatment, so their survival rates would be much longer had they received an early diagnosis at the onset of memory problems.
The Black Population is Under-Represented in Studies
Rena A.S. Robinson has been studying Alzheimer’s Disease on a molecular level, looking for a biological reason for the disproportional number of African Americans with dementia. While this research is vital, and you can read more about it below, she found something equally as significant regarding understanding how these statistics could be misinterpreted. Her research shows that most clinical trials rarely represent the actual U.S. population. On average, these studies include approximately 5% blacks, yet they comprise around 13% of the total population. This could lead to skewed results.
There is a Possible Biological Vulnerability
A recent study began by evaluating past medical research reports including over 1,200 people ranging from age 43 to 104. Researchers discovered that approximately one-third had symptoms of the early stages of dementia-related memory loss. They then used brain scans and spinal fluid samples to test for two biological markers indicating Alzheimer’s Disease. Amyloid plaques were the same regardless of ethnic background. However, in the study, spinal fluid from African Americans showed significantly lower levels of tau proteins. These levels seemed to correlate to the APOE4 gene directly. In other studies, this gene has shown an increased risk of developing Alzheimer’s Disease even in those who are white, but the risk factor may not be as profound in black people. Still, tau proteins may mean that the African American population has a higher risk of developing Alzheimer’s or other related dementias.
What is Being Done to Address These Disparities?
More Diverse Medical Research
Based on previous studies, new ones are underway to dive deeper into the reasons behind these staggering statistics. One example is the Health and Aging Brain Study by the HSC Institute for Translational Research. This study has been funded by several prominent organizations, including the National Institutes of Health, to understand better how Alzheimer’s Disease affects those with various ethnic backgrounds. Other studies continue to research amyloid plaques and tau proteins to better understand how they affect brain changes by race.
Health Education Programs
Education is becoming available at every level of health care, from neighborhood clinics to large universities like the University of Kansas Medical Center. At this university, a free program offers resources and tools for those most impacted by memory loss and encourages participation in their clinical trials. The community benefits from access to more resources like promoting a healthy lifestyle, and the research studies benefit from more engagement with the community. Programs like this are available or being developed around the country.
Caregiver Support Groups
Being a caregiver for a family member with memory loss is hard, even when you don’t face the additional challenges of discrimination and socioeconomic hardship. Caregiver support groups like the African American Dementia Caregiver Support Program and others near you or online may help you deal with everyday struggles and learn about additional resources available. If you support someone with impaired thinking skills, there are people available to support you as well.
Fighting the Disparities in Dementia
There are still many challenges, especially as the number of Americans with dementia symptoms rises. However, with continued efforts to combat risk factors, more clinical trials being funded, and additional resources being made available for vulnerable neighborhoods and socioeconomic groups, our black communities can defy the projections and become stronger against Alzheimer’s Disease and related dementias. Support is available for people living with dementia, caregivers of any age, and even providers educating their patients.