What can be done to mitigate Alzheimer’s disease disproportionately affecting African Americans?

According to British-Canadian medical anthropologist Margaret Lock, Alzheimer’s disease “is ranked as the fourth-biggest killer in the United States, and the massive sum of $100 billion” is spent every year on patient care. Currently, an “estimated 6.9 million Americans are living with Alzheimer’s” (Alzheimer’s Association). For the past many years, Alzheimer’s has become an increasingly concerning mental disease, with the elderly population being impacted the most. The mental disease can be traced back to internal biological mechanisms as well as external/environmental risk factors that are experienced by the individual. Furthermore, social and economic influences also play an important role in the prevalence of Alzheimer’s in the US population. Rachel Kaadzi Ghansah’s story My Mother’s House metaphorically conveys the severity of Alzheimer’s in a meaningful way. Throughout the passage, Ghansah explores how memory shapes one’s identity and sense of self, where oftentimes some objects and places can be meaningfully attached to a person, whether they themselves remember it. In the story, her mother describes her old house remembering that “ it was filthy, so filthy that she has been forced to forget it.” She only remembered “a house full of dogs, and curtains made of paper, and keeping her clothes in boxes”, which illustrates the capabilities and limitations of human memory. Sometimes this fading away of memories is caused by Alzheimer’s Disease (AD), which is mentally crippling for elderly Americans. The disease chips away at their sense of individuality, causing them to gradually forget the experiences that are essential to who they are and their personal history. Moreover, the story delves deep into Ghansah’s pursuit to learn more about her African American ancestry that has shaped her own individuality. As a matter of fact, African Americans are significantly impacted more by Alzheimer’s compared to other races, with them being “1.5 to 2 times as likely than whites to develop Alzheimer’s and related dementias” (Walker).  Thus, the question naturally arises: what can be done to mitigate Alzheimer’s disease disproportionately affecting African Americans? Even though currently caregivers are the main people specializing in the care of affected individuals, the promotion of more diversity coupled with increasing awareness in Alzheimer’s studies seems to be the optimal approach.

Prior to discussing approaches to the issue of Alzheimer’s in Black Americans, it’s crucial to deeply understand AD itself. Oftentimes, as a person ages, they begin to experience problems with memory, and Alzheimer’s tends to exacerbate the issue. According to the Mayo Clinic, AD is a biological process that begins inside the brain, where “a buildup of proteins in the form of amyloid plaques and neurofibrillary tangles” result in the death of brain cells and brain shrinkage over time. As the brain shrinks, the mental disease starts to manifest itself to others via the main symptom: memory loss. Along with loss of memory, the person affected by Alzheimer’s may also struggle with cognitive abilities related to thinking and reasoning through important tasks such as finance management. Furthermore, routine activities that the person is normally used to may become more challenging, while changes in behavior such as depression, social withdrawal, etc. can be observed. There also exist risk factors for Alzheimer’s which include elderly age, genetic predisposition for the disease, down syndrome, heavy alcohol use, bad lifestyle habits such as lack of exercise and smoking, among others. Although the disease could possibly be prevented by healthy lifestyle habits, no cure has currently been found. Nevertheless, numerous neuroscience researchers in recent years have been discovering new breakthroughs targeted towards a cure. Aiysha Chaudhry and Mie Rizig, researchers from the UCL Queen Square Institute of Neurology, extend upon Mayo Clinic’s information regarding the internal processes of the brain, stating that AD fluid biomarkers have been useful in studying the prevalence of the disease between different populations and races inside the US. Chaudhry and Rizig state that “biomarker research for Alzheimer's disease (AD) has grown rapidly in recent years, ensuing the integration of the AD fluid biomarker profile: Aβ1-42, t-tau, and p-tau181, into clinical and research criteria”. Consequently, they imply how clinical research influences Alzheimer’s rates between different races such as African Americans and Whites. 

As indicated by Emma Nye and her colleagues from the Office of Behavioral Health, Disability, and Aging Policy, racial minority populations are frequently underrepresented in research studies and clinical trials that are conducted, which as a result shape the diagnosis and treatments targeted towards ADRD. This is especially true for African Americans, who aren’t incorporated into clinical trials of Alzheimer’s Disease and Related Dementias (ADRD) to the extent that White Americans are. Chaudhry and Rizig agree with Nye and her team, finding that “a number of prominent federally funded biomarker studies conducted in the United States (U.S.) have failed to recruit adequate numbers of” Black Americans. Keenan Walker from the National Institute of Health further elaborates on Nye, stating that due to underrepresentation of African Americans in Alzheimer’s studies, African Americans “were 35% less likely to be diagnosed with Alzheimer’s” than white people were. Not being diagnosed allows for the disease to further onset and be harmful. Hence, it’s clearly observable that an insufficient representation of minority races has certainly been highly influential in the increasing occurrences of AD in Black Americans. However, it needs to be considered that systemic issues that have historical origins in the US are also impacting Alzheimer’s occurrences in African Americans. Discrimination based on race, also known as racism, is a problem that has plagued the US social structure for many decades. Even though laws and legislation prohibiting racist discrimination exist in modern times, traces of the issue still linger and exist in the modern day healthcare system. Kat Stafford, Associated Press, mentions that inequality in the quality of healthcare for African Americans compared to Whites pervades throughout the United States. In fact, Dr. Carl V. Hill of the Alzheimer’s Association asserts that experiences with racism is a trauma that promotes stress, in turn causing neuroinflammation, a dangerous lead to Alzheimer’s. Therefore, not only is racism a concern for disparities in proper quality healthcare, but it’s also a threat that can translate into the development of Alzheimer’s excessively in African American populations. Nye and her researchers supplement Stafford’s insights by explaining that bias based on race inside the US healthcare system itself undermines equality of Alzheimer’s treatment; it amplifies racial disparities in mental disease. Moreover, Nye adds that many Black people in the US also struggle with having convenient access to healthcare and ADRD services. And so, underrepresentation of minority races, racist discrimination in healthcare, and restricted accessibility to Alzheimer’s services are key aspects that contribute to the disproportionate effects of the disease on African Americans. 

Others may believe that Alzheimer’s patient caregivers, as a solution, are an effective pre-existing group of people who are apt in providing comfort and care for the elderly that are affected. Indeed, caregivers do play a crucial role in assisting those affected by Alzheimer’s dementia. They execute duties that need precision such as the administration of medicines to the affected individual (Alzheimer’s Association). Alzheimer’s caregivers provide a sense of security and emotional support for the patients, as well. In fact, “more than 11 million” caregivers “provide unpaid care for a family member or friend” diagnosed with AD, “a contribution to the nation valued at nearly $350 billion” (Alzheimer’s Association). Yet, despite the beneficial and substantial role that caregivers play, they themselves frequently describe it to be mentally burdensome. Based on Jon Hamilton from the National Public Radio, Alzheimer’s caregivers work unpaid and many find it stressful since there’s a lack of guidance for them. According to a survey taken from more than 1500 caregivers, the majority of them stated that they found their work to be stressful and difficult. Furthermore, the survey also found that the healthcare system doesn’t provide much assistance to the caregivers. Thus, Hamilton’s survey reveals that caregivers oftentimes are faced with immense pressure where they are forced to manage the care of AD patients simultaneously with their own mental health. It’s essential that these caregivers maintain their own psychological stability in order to ensure that they have the mental capacity and emotional bandwidth to take care of affected patients. More importantly, caregivers aren’t the most optimal solution since it doesn’t properly address the racial disparities that exist in the occurrence of the mental disease: a major concern that both Nye and Stafford highlighted earlier. Hence, although it may seem that caregivers are sufficient enough to manage the status quo of the Alzheimer’s issue, more action needs to be taken with consideration to future generations of different races.

Increasing racial diversity by raising awareness is the optimal solution by far. As mentioned by Clare Ansberry from the Wall Street Journal, “blacks represent less than 5% of participants in most clinical trials for new drugs and therapies”. Consequently, Ansberry’s statement demonstrates that diversity in the patient Alzheimer’s research studies needs to be increased to counteract African Americans disproportionately affected by the disease. A higher percentage of Black people need to be enrolled into clinical trials to mitigate the issue. Tamara Bhandari from the Washington University of Medicine complements Ansberry’s statement, explaining that many of the studies associated with Alzheimer’s research have a Caucasian majority in the pool of participants. That said, Ansberry also states that African American awareness of clinical trials for Alzheimer’s needs to be increased. In other words, it’s crucial that African Americans themselves are aware of their lack of representation in clinical trials, since without awareness, efforts to diversify patient pools in AD research wouldn’t be feasible. When racial diversity in AD clinical studies is prioritized, the issue of African American underrepresentation underscored by Walker and Nye’s team can be mitigated. With improved representation of minority races such as African Americans in AD research studies, a more effective and heedful approach can be formulated in the pursuit for a cure to Alzheimer’s. 

Increasing awareness will fundamentally be the keystone and overall powerhouse to ensure that racial diversity exists in Alzheimer’s research studies. Nonetheless, numerous barriers exist between building awareness and creating diversity in clinical research for Alzheimer’s, and these impediments need to be removed for racial diversity to be established. Dr. Owen Garrick, MD, states that these barriers can be categorized as existing at the system level, the patient level, as well as at the study level. At the system level, it’s critical to consider macro-scale aspects. Dr. Garrick and his colleagues emphasize investments in programs that are targeted at increasing diversity, equality in the healthcare system, and healthcare accessibility for minority races. In terms of its application to the United States, it’s imperative that the federal government collaborates with the national healthcare system in order to execute these economic investments supporting the programs. In particular, by addressing the systemic barriers, Nye’s earlier mentioned concerns regarding African American inequality and inaccessibility regarding healthcare can be resolved. Proceeding to the patient level barriers, Dr. Garrick asserts that building trust in Alzheimer’s patients is paramount in racial diversification of clinical trials. Oftentimes, it’s due to patient mistrust that disproportionately low numbers of black people, as accentuated by Anbserry, are represented in AD clinical trials. As for how trust in African American patients can be nurtured, establishing localized awareness and educational programs will be beneficial, especially in areas predominantly occupied by minority races. Moving on to the study level, Garrick believes that if system and patient level barriers are eliminated, the only remaining aspects are the prevention of bias during the study and the prioritization of patient choices/comfort. Khushnoo K. Indorewalla from the Edith Nourse Rogers Memorial Veterans Hospital agrees with Dr. Garrick’s strategies to increase racial diversity; he also emphasizes that clinical researchers need to take the initiative to implement this approach and ensure clinical studies are more diverse and representative of Alzheimer’s frequencies within the US population. Hence, utilizing these specific strategies would allow for the spreading of awareness within the African American community. In turn, it would ensure their proper representation in AD research, while diminishing the disparity of Alzheimer’s rates between Black and White people.

Overall, Alzheimer’s disease is certainly a critical problem that the United States as a nation needs to address. Despite ongoing efforts in the form of caregivers and research studies, Alzheimer’s still continues to plague the lives of minority races in the US, specifically African Americans. As the country progresses towards a potential cure to the mental disease, it’s paramount that more diversity is built in clinical trials and more awareness is promoted among minority populations. In this way, a more effective and all-inclusive approach can be pursued to end Alzheimer’s.

Works Cited

Alzheimer's Association. 2024 Alzheimer’s Disease Facts and Figures. Special Report: Mapping a Better Future for Dementia Care Navigation. 2024. Accessed 22 April 2025.

Ansberry, Clare. “An Alzheimer’s Quest: Enrolling More Black People in Clinical Trials.” Wall Street Journal, 31 August 2020, www.wsj.com/articles/an-alzheimers-quest-enrolling-more-black-people-in-clinical-trials-11598891561. Accessed 27 April 2025.

Bhandari, Tamara. “Racial Differences in Alzheimer’s Disease Unveiled.” WashU Medicine, 2019, medicine.washu.edu/news/racial-differences-in-alzheimers-disease-unveiled/. Accessed 27 April 2025.

Chaudhry, Aiysha, and Mie Rizig. “Comparing Fluid Biomarkers of Alzheimer’s Disease Between African American or Black African and White Groups: A Systematic Review and Meta-Analysis.” Journal of the Neurological Sciences, 2020, www.sciencedirect.com/science/article/abs/pii/S0022510X20306067. Accessed 22 March 2025.

Garrick, Owen. Advancing Inclusive Research: Establishing Collaborative Strategies to Improve Diversity in Clinical Trials. 2022. JSTOR, www.jstor.org/stable/48667986. Accessed 22 April 2025.

Ghansah, Rachel K. My Mother's House. 2012. Accessed 22 April 2025.

Hamilton, Jon. “Most Caretakers of Those with Dementia Need Help Navigating Services, Survey Shows.” NPR, 20 March 2024, www.npr.org/2024/03/20/1239760991/most-caretakers-of-those-with-dementia-need-help-navigating-services-survey-show. Accessed 22 April 2025.

Indorewalla, Khushnoo K., et al. “Modifiable Barriers for Recruitment and Retention of Older Adults Participants from Underrepresented Minorities in Alzheimer’s Disease Research.” Journal of Alzheimer's Disease, vol. 80, no. 3, 2021. Sage Journals, journals.sagepub.com/doi/10.3233/JAD-201081. Accessed 22 April 2025.

Lock, Margaret, et al. Genetic Susceptibility and Alzheimerʹs Disease: The Penetrance and Uptake of Genetic Knowledge. 2006. JSTOR, www.jstor.org/stable/j.ctt5hjbhp.10. Accessed 17 March 2025.

Mayo Clinic Staff. “Alzheimer's Disease - Symptoms and Causes.” Mayo Clinic, 8 November 2024, www.mayoclinic.org/diseases-conditions/alzheimers-disease/symptoms-causes/syc-20350447. Accessed 22 April 2025.

Nye, Emma, et al. “Federal Efforts to Address Racial and Ethnic Disparities in Alzheimer’s Disease and Related Dementias.” National Library of Medicine, 2022, aspe.hhs.gov/sites/default/files/documents/5f3fc5aa6ae780f739265d40f20fc456/federal-racial-ethnic-disparities-adrd.pdf. Accessed 22 March 2025.

Stafford, Kat. “Black People Are More Likely to Develop Alzheimer’s than White People, CDC Says.” Public Broadcasting Service, 2023, www.pbs.org/newshour/health/black-people-are-more-likely-to-develop-alzheimers-than-white-people-cdc-says. Accessed 22 April 2025.

Walker, Keenan. “Data Shows Racial Disparities in Alzheimer's Disease Diagnosis Between Black and White Research Study Participants.” National Institute on Aging, 16 December 2021, www.nia.nih.gov/news/data-shows-racial-disparities-alzheimers-disease-diagnosis-between-black-and-white-research. Accessed 22 April 2025.