Serving Black Women through Alzheimer's Research

“Black women seek help from a healthcare system that is fundamentally not built to serve them.”

This observation from researchers at Southern Illinois University School of Medicine highlights the barriers that Black women face to receiving care for Alzheimer’s Disease and related dementias (ADRD). Despite being twice as likely to develop ADRD, Black study participants were found to be 35% less likely to be diagnosed than their white counterparts. Additionally, across all races and ethnicities, women are two times as likely to develop Alzheimer’s Disease (AD) than men, placing Black women in an especially vulnerable category when it comes to ADRD. However, as the population continues to age, the number of people with ADRD only continues to rise with 80% of surveyed Black patients reporting barriers to care for dementia.  

In the paper, “Health disparities in aging: Improving dementia care for Black women”, Findley and colleagues describe several factors that contribute to the increased risk of ADRD in Black Americans, including increased lifetime stress. The authors use the term “allostatic load” to quantify the cumulative damage or “wear-and-tear" on the body under chronic stress. Studies have found that Black Americans have the highest allostatic load of any racial group, possibly due to the prolonged stresses of systemic racism and discrimination. Another quantified measure of this chronic stress is telomere length: telomeres are the protective sequences at the end of chromosomes, DNA-containing structures in our cells, that naturally decrease in length as we age. With greater stress, these telomeres wear down faster, giving us an estimate of biological age. Using telomere shortening rate as a marker of biological age, it has been found that Black women 49-55 years old are roughly 7.5 years older than their white counterparts. Evidence of this accelerated damage due to stress thus puts Black Americans, especially Black women, at higher risk of developing ADRD. 

Despite the higher risk of developing ADRD, Black women receive care for these dementias later in the disease progression and less often than white women. Some of this delay is explained by mistrust in the healthcare system due to long-standing ethical misconduct and discrimination against Black Americans, which has also prevented inclusion of Black women in research. However, this discrepancy may also be due to lack of cultural competence in diagnostic tools. Different cognitive tests used to screen for dementia are corrected for race in ways that lead to false positives or false negatives when testing Black women, obscuring the proper diagnosis and preventing women with dementia from receiving treatment early in their disease course. For example, the Mattis Dementia Rating scale is one cognitive tool that uses adjustments for race that assume lower performance for Black patients. This means that when Black patients score within ranges that may be indicative of early dementia, they may not receive a diagnosis and therefore may receive delayed care. Additionally, accumulation of the tau protein, thought to be a marker for AD, may not be consistent across ethnicities, meaning that more research is required to determine what levels of tau might be indicative of AD in Black Americans.  

The key to addressing these disparities in diagnostic efficacy lies in greater cultural competency and inclusion of Black women in ADRD research. Several universities across the country have made efforts to increase the number of Black women included in their studies by reaching out to leaders and organizations in Black communities, providing education about ADRD and the importance of research while also receiving feedback from leaders who can advocate the needs of their communities. Importantly, the formation of these partnerships has also created a reciprocal relationship between researchers and communities allowing culturally appropriate study designs and benefits for study participants. These partnerships have demonstrated success in that these universities have been able recruit more Black women and allow greater access to dementia diagnosis and care. However, these relationships must be nurtured and sustained for long-term success in order to fully serve all communities.  The Black Women: Inflammation and Tau Study (BWITS) at UC San Diego is another example of the importance of understanding the disparity that Black women face when it comes to AD risk. Through intentional outreach and collaboration with the community, there is hope that research will help better address these AD health care discrepancies. 

UCSD Black Women: Inflammation and Tau Study (BWITS) site: https://www.b-wits.org/

Article of Interest:

Findley CA, Cox MF, Lipson AB, et al. Health disparities in aging: Improving dementia care for Black women. Front Aging Neurosci. 2023;15:1107372. Published 2023 Feb 9. doi:10.3389/fnagi.2023.1107372 

*All data in this blog post is referenced and cited in the article of interest