Alzheimer’s disease has become a national crisis. The federal government has expanded federal funding to support clinical trials and research into the causes and treatments, as well as the psychosocial impact that the disease can cause to individuals and their families. More than five million people have the disease; it is the 6th leading cause of death in the U.S. Everyone is aging and if asked, you would probably know someone who has dementia or Alzheimer’s disease.
The occurrence of Alzheimer's disease in African Americans is 64 percent higher than in whites. It is also the 4th leading cause of death among African Americans. This could be attributed to the fact that African Americans are more likely to have the presence of risk factors often associated with increased vulnerability to the disease. These include high cholesterol, high blood pressure, stroke and type 2 diabetes mellitus.
The impact of these factors is hard to decipher because historically, equal access to health care and persistent mistreatment and discrimination, as well as lack of awareness among the African American community has compounded the effect. In addition, memory decline is a gradual process, so many may not even realize its impact until it is too late. This often leads to underreporting of cases, leading to diagnosis at a later stage, when treatment is less effective. African Americans are more likely than whites to be uninsured (21 percent versus 13 percent, respectively). Often African Americans report feeling mistreated in healthcare settings and thus, do not report when they first start to see memory problems among their loved ones. Is this a lack of awareness or is something else going on?
How can we address this critical disparity? We all age and, as we age, we deserve dignity and respect, regardless of our mental capacity. Given the early signs of memory loss may be missed, we need to increase awareness of Alzheimer’s among African Americans, including expanding their participation in research, to get services and treatments to those who are disproportionately affected by the disease. There are websites that promote clinical trials for all populations and the more we can diversify the samples of these research programs (TrialsMatch), the more understanding health professionals will have on how best to treat and manage the disease progression among African Americans. Families can also benefit from a fuller understanding of the disease progression and how they might best care for their loved ones.
What if African American families realized early on that mom or dad wasn’t just acting weird or had “old timer’s disease,” but that this behavior was no longer normal? Mom or dad would become almost like a piece of furniture, sitting in a room where life moved around them. Every now and then someone would stop and check on them, not knowing how to best communicate or understand their loved one’s behaviors. The next thing we know is that mom or dad no longer knows who we are. That realization is hard to deal with, especially with no tools or resources to understand the disease.
Having an awareness of the prevalence of Alzheimer’s disease and dementia and understanding what it means to have memory problems that are not normal is key. Knowing the 10 signs of Alzheimer’s disease is a first step in distinguishing normal aging from significant memory problems. This awareness and knowledge can help to mitigate the stress on families, who suffer the burden of care for their loved ones, especially within the African American community. Most of the cost for families start with the often 24-hour monitoring of the loved one who wishes to remain in the community. Respite care and in-home nursing care can be expensive. However, the earlier a diagnosis is received, this allows for more care planning for caregivers and potentially more successful medication management for behavioral changes to help reduce the severity of the disease.
Knowing is the first step in understanding how to advocate for the resources and services African American families need to facilitate the health-care system in accessing the same options for care that others are more aware of. Historically, minorities have suffered from discrimination and it is now time to address these barriers to better understand how to alleviate the occurrence, its frequency and even the individual’s subjective appraisal of these events by providing a more inclusive health-care system.
We also need to not only build awareness of the disease among the African American community, but we must increase minority participation in research, particularly clinical trials that are being tested to develop new drugs, treatments and behavioral/therapeutic interventions to ensure that these methods are effective within our African American community.
To be sure, in all races and ethnicities, the burden of Alzheimer’s disease is critical to address, however, there is a heightened need to understand which communities will potentially bear disproportionate burdens of Alzheimer’s disease.
Across all age groups, African Americans have a higher prevalence of Alzheimer’s disease than others. Making people more aware of the signs and symptoms of Alzheimer’s disease, those different from normal aging, allows for the conversation to become more normalized and less stigma will be associated with sharing stories around the disease and its impact on families.
Ishan C. Williams is an associate professor at the University of Virginia and Assistant Dean of Diversity and Inclusion at the School of Nursing. She is a Public Voices fellow with the OpEd Project.