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Systemic Racism is why we don’t have an Alzheimer’s Cure: Why We Need to Act Now

Imagine not knowing your own name, being relegated to a nursing home with advanced dementia, suffering from immobility, incontinence, and other pains. You rarely see your family, and when you do — you don’t even recognize them. This is the reality for almost 6 million Americans with Alzheimer’s Disease (AD). Out of these, a disproportionate number of African Americans suffer from the illness, and they often do not receive the care they deserve to live with a meaningful quality of life. AD is yet one of many diseases that hit BIPOC communities harder than others, and the ignorance healthcare systems and society have shown needs to be augmented to develop effective therapies in the future.

One quick Google Images search of “Alzheimer’s Patient” yields many old, white patients. In fact, the first 150 images show only two people of color. This doesn’t seem representative of reality because Alzheimer’s Disease is twice as common amongst African American populations (NIH). Popular media stereotypes depict the Alzheimer’s patient as an elderly white person, and this exclusive narrative ultimately hinders the care and attention that dementia patients from other backgrounds receive. Clearly, there is an unspoken reality that Alzheimer’s disease and related dementias are underrepresented among people of minority communities.

With Alzheimer’s disease expected to cost the US 1 trillion USD in 2050, more effective therapies are needed to combat AD immediately (Alzheimer’s Association). However, without first solving racial disparities in AD and society, this cannot be combated. Ultimately, this op-ed seeks to explain the reality that people of marginalized communities and low socioeconomic status are disproportionately suffering from Alzheimer’s disease and related comorbidities. In order to develop an effective cure for Alzheimer’s, we must mitigate racism in the US. This can be broken down into three key targets: creating more inclusive scientific research around BIPOC in AD, building marginalized communities’ trust in US healthcare systems, and in the long run, and promoting racial justice initiatives that mitigate systemic racism to decrease lifestyle factors (that low socioeconomic populations have higher rates of) that contribute to Alzheimer’s development.

Currently, knowledge about AD and related dementias is predicated on research almost exclusively studying non-Hispanic whites. In the scientific community, this tunnel-visioned perspective is mostly ignored when considering research developments. I work with WashU School of Medicine’s premier neurodegeneration center (Hope Center). In fact, we lump all people into one category and assume that these biochemical pathways are identical for everyone in our research. However, if research progress keeps building upon studies of whites with Alzheimer’s, the possibility of different manifestations of AD amongst other races will not be explored. WashU School of Medicine in St. Louis conducted one such study, finding that levels of a critical protein (tau proteins) in Black Alzheimer’s patients are lower than whites, making the disease more difficult to detect, recognize, and treat (WashU Medicine). John C Morris, MD of WashU School of Medicine notes, “If we only study Alzheimer’s in Caucasians, we’ll only learn about Alzheimer’s in Caucasians . . . If we want to understand all the ways the disease can develop in people, we need to include people from all groups.” Other studies have also begun to find biochemical differences in how African American’s brains show biological markers of Alzheimer’s Disease.

Recently, WashU School of Medicine announced funding for research to decrypt why African American’s have the highest prevalence of Alzheimer’s disease. While promising, this $15M fund for such a crucial gap in knowledge isn’t enough, and this funding needs to be promptly increased by other medical institutions seeking to create effective Alzheimer’s studies. This is because these such AD studies only pull in regional patients. With Alzheimer’s patient demographics varying around the country, these studies should also be conducted at other institutions for ideal data into disparities between whites and BIPOC in Alzheimer’s Disease. University of North Texas’s Health Science Center has funded $7M into their institution to decipher the molecular differences between Caucasians and BIPOC in Alzheimer’s progression. These WashU and UNT studies are just the tip of the iceberg: much more funding needs to go into studies to elucidate the mechanistic differences between AD development between non-Hispanic whites and BIPOC. The total funding AD expected for 2021’s fiscal year is $3.1B and the combined 30M that WashU and UNT have provided pales in comparison to the total funding AD research receives. Additionally, these grants are competitive, and not all aspiring AD investigators have access to sufficient funding. These grants need to be more accessible to researchers, as I can’t tell you how many hours my lab puts into grant writing and focusing on funding instead of running experiments. Unfortunately, this is true for all AD labs where hundreds of hours per lab are poured into getting funds instead of procuring results. Ultimately, without more accessible research funding investigating this pathology in all groups, effective therapies for Alzheimer’s that work for everyone cannot be discovered.

Building trust between African Americans and the medical system is another step needed to effectively mitigate AD disparities. After all, the system was not designed for them in mind, which must change slowly to have long term benefits. Numerous studies have shown a history of mistrust between African Americans and the US healthcare system. Lindsay Wells, a physician from UCLA, recounts a Black patient not receiving preventative care because he simply couldn’t find a doctor before Dr. Wells who he “trusted” because they “didn’t look like him” (Wells and Gowda 2020). This is the reality for countless more BIPOC patients whose mistrust of the US healthcare system trumped their need for healthcare.

Additionally, if this trust is not there, we cannot expect thousands of Black AD patients to willingly volunteer for critical dementia studies. Dr. Lisa L. Barnes, a neuropsychologist at the Rush ADRC in Chicago, recounts patients saying that “being a minority in this research involves being a guinea pig, and no one wants to be a guinea pig.” Another patient noted, “why would you want to participate in their research and donate your brain if it does not benefit you?” (CNN). Ultimately, without this gap in trust being bridged, substantial progress in AD therapy development isn’t possible. Political leaders and healthcare systems everywhere need to create a cultural change within society to bring an equitable space that openly invites Black and marginalized communities for treatment. This is the only way Alzheimer’s and related dementias can be explored effectively for treatment development.

Another key target for reducing AD and dementia among BIPOC are related to lifestyle factors. These are mostly seen through increased risk cardiovascular factors and increased stress. However, it is known that these risk factors are increased in BIPOC because of systemic racism, leaving these marginalized communities at high risk for these ingredients that exacerbate Alzheimer’s development. Vascular risk factors that contribute to Alzheimer’s development include obesity, hypertension, type 2 diabetes, high cholesterol, atherosclerosis, low physical activity, and smoking (Hasnain and Vieweg 2014). All of these factors are more prevalent amongst Black populations and marginalized communities with low socioeconomic status (Yaffe et al., 2013). It’s been said that these communities have greater exposure to these risk factors from poor working and living conditions, less access to proficient health education, and reduced access to healthcare (Kreatsoulas et al. 2010). Unfortunately, this exacerbates rates of vascular risk factors amongst Black populations. In 2017, African Americans were 20% more likely to die from heart disease than whites. Furthermore, hypertension was found to be 60% more likely to occur in Black females than whites, increasing their respective risk of developing dementia in their later years.

Stress is also a significant factor that contributes to AD development. Stress is statistically associated with social disadvantage and BIPOC (Nurius et al., 2013). In a nation that only serves to disadvantage marginalized populations, stress will undoubtedly arise in higher levels in low SES areas (Nurius et al., 2013). Therefore, social and anti-racism movements should continue to push our leaders to create an equitable space for marginalized communities. This will translate into health equity. A result of these cultural shifts in society would be reducing AD and dementia rates amongst elderly BIPOC when the current generations become elders. Dr. Rachel Whitmer, professor and chief of epidemiology at UC Davis, notes that this stress is also linked to risk factors like hypertension. She asserts that this is a result of racial experiences and structural racism. Moreover, Dr. Megan Zuelsdorff of Wisconsin’s Registry for Alzheimer’s Prevention and Wisconsin’s ADRC showed that social conditions are pivotal in determining risks for cognitive aging and higher dementia rates in BIPOC communities (Gilsanz et al. 2019). From a more present perspective, during the COVID-19 pandemic, many BIPOC are facing extraordinary physical, financial, and psychological distress. Through the lens of dementia, this only serves to aggravate stress and ultimately increase risk factors for AD and dementia development. We need to address this by developing an anti-racist culture first in society and, ultimately, healthcare space. This requires government input to address racial inequities and systemic racism, which will ultimately help initiatives to solve disparities in AD development.

Some may argue that research funding could go into other diseases, or Alzheimer’s Disease as a whole and ignore potential racial differences in disease pathogenesis. But as illustrated above, research needs to be conducted on all races to create effective treatments for all. Furthermore, some will claim that risk factors like hypertension and obesity are linked to genetics. However, recent longitudinal data from the Jackson Heart Study stipulate life-long discrimination is linked to a 33%-50% greater chance of developing hypertension, which helps explain racial differences in health outcomes (Forde et al., 2020).

There may even be those that assert Alzheimer’s funding isn’t worth it in the first place compared to other pressing medical issues like cancer, HIV/AIDS, and heart disease. Alzheimer’s disease currently costs $277B to the US per year, and this is only projected to increase to $1,000B by 2050 (Alzheimer’s Association). The hit to Medicare and Medicaid would be $750B per year — a substantial amount and currently a fifth of the federal government’s entire budget. Alzheimer’s research already gets $1.4B per year in funding annually, which may seem substantial however pales compared to AIDS research receiving $3B per year and cancer research receiving $6B per year. Moreover, Medicare and Medicaid costs are consistently higher for those with dementia than those with heart disease and cancer (NIH). With a projection of 14 million Americans living with Alzheimer’s in 2050, there is no time to waste on R&D for effective AD treatments — and it starts first with investigating the disease pathogenesis in those of marginalized and most vulnerable communities. Also, some assert that the cardiovascular risk factors play a lower role in Alzheimer’s development and that genetics plays a larger role. This is false, and research has indicated genetic factors, while a contributor to AD risk, are not a significant contributor compared to lifestyle factors (NIH).

Tactics for anti-racism in this healthcare space include developing and expanding cultural sensitivity in Alzheimer’s. Research must be race-specific to ensure the translatability of new therapies. A greater sense of trust should be developed in low socioeconomic populations by improving community outreach efforts. Furthermore, we must translate new research to public health practices, especially to those in marginalized communities. It is interesting that multiple institutions like WashU, and the University of North Texas announced funding into racial differences in AD pathology the same year groundbreaking racial justice initiatives arise. But more significant national efforts must be resourced to fund the incredible challenge Alzheimer’s poses for our economy in the long run, and this requires the US government to allocate more funding in the next fiscal year. AD simply doesn’t get the attention it needs from our government or healthcare organizations compared to HIV/AIDS or polio in the 20th century, and more recently, like Zika Virus and Ebola. It is beyond critical for the US and healthcare organizations to deeply invest in racial differentiation in Alzheimer’s research and more effective anti-racist care support for AD patients of marginalized communities. While grim, let this serve as a call to action to avert this crisis — or the healthcare system will be overrun with this problem in the future. The clock is ticking.

Works Cited and Referenced

Forde A.T., Sims M., Muntner P., Lewis T., Onwuka A., Moore K., Diez Roux A.V. Discrimination and hypertension risk among African Americans in the Jackson Heart Study. Hypertension. 2020; 76:715–723. DOI: 10.1161/HYPERTENSIONAHA.119.14492

Graham G. Disparities in cardiovascular disease risk in the United States. Curr Cardiol Rev. 2015;11(3):238–245.

Gilsanz P., Mayeda E.R., Glymour M.M., Quesenberry C.P. Jr, Mungas D, DeCarli C.S., Whitmer RA. Birth in High Infant Mortality States and Dementia Risk in a Cohort of Elderly African American and White Health Care Members. Alzheimer Dis Assoc Disord. 2019 Jan-Mar;33(1):1–6. DOI: 10.1097/WAD.0000000000000270. PMID: 30106754; PMCID: PMC6374212.

Kreatsoulas C., Anand S.S.. The impact of social determinants on cardiovascular disease. Can J Cardiol. 2010;26(Suppl C):8C–13C. DOI: 10.1016/S0828–282X(10)71075–8.

Mehrul Hasnain1,* and W. Victor R. Vieweg. Possible Role of Vascular Risk Factors in Alzheimer’s Disease and Vascular Dementia

Yaffe K., Falvey C., Harris0Tamara B, Newman A,, Satterfield S., Koster A. et al. Effect of socioeconomic disparities on incidence of dementia among biracial older adults: prospective study BMJ 2013; 347

Wells, L. Gowda, A. A Legacy of Mistrust: African Americans and the US Healthcare System. 2020. Proceedings of UCLA Health Volume 24.

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