At five oclock every morning, Yun Kam So, known as Kim by her friends, woke up with a simple, but essential, goal: to see the sunrise. And every morning, that familiar sunrise increasingly became an unfamiliar sight.
Often, we tend to take our ordinary, expected, and routine experiences for granted, whether it be as intricate as tasting the sweet-bitter taste of coffee, or as plain as simply brushing our teeth, but for Kim, a wife, mother, and grandmother, the ability to even experience a breath of fresh air was an experience worth treasuring. In 2010, Kim was diagnosed with Alzheimer’s disease, and like many Americans with the same diagnosis, her future, which she had worked so hard to secure, now had an end date that seemed terrifyingly close. Kim, my grandmother, battled the unstoppable disease every waking moment with admirable strength until she was able to finally rest in peace in 2019. However, having a relative with Alzheimer’s and seeing the disease’s impacts up close, it is clear that the battle does not just affect the individual, and that that battle does not end with the passing of a loved one.
Despite affecting 5.8 million Americans, killing 1 in 3 seniors, and taking more lives than breast cancer and prostate cancer combined, Alzheimer’s disease remains an elusive problem in both the medical and social arenas. Being more than a century since its discovery and no definitive cure in sight, it is important that we illuminate the progress made in as well as the problems facing research into the overshadowed disease.
Alzheimer’s disease is a neurodegenerative disease, meaning that the primary casualty that results from this malady is one's neurons; through amyloid plaques and neurofibrillary tangles, the typical operations of neurons are interrupted, ultimately leading to cell death. The National Institute on Aging under the NIH describes the progression of Alzheimer’s, noting that the illness typically starts in the hippocampus and entorhinal cortex, areas of the brain responsible for memory, and progresses to parts of the cerebral cortex responsible for language, reasoning, and behavior. As the disease progresses, damage to the brain increases, leading to shrunken brain tissue, enlarged ventricles, and flattened gyri and sulci (the folds of the brain).
Although the brain endures severe damage during the progression of Alzheimer’s, what makes the disease fatal for some are the health complications that arise from failing bodily functions. Notably, a meta-analysis observed data that suggest an association between Alzheimer’s and pneumonia-caused deaths, which is consistent with the narrative of impeded physical processes (Manabe et al., 2019). The association appears to arise due to the inability for the ill to swallow properly, which results in the inadvertent inhaling of food particles and fluids, transferring bacteria found in their mouths and throats to their lungs, leading to pneumonia. Although Alzheimer’s disease is terminal in and of itself, it additionally acts as a catalyst for many other malignant illnesses, raising the need for improved treatments and, most importantly, a cure. But only through the continuation of research is this possible.
Problems in research
Back in 2009, the Alzheimer’s Study Group highlighted a fundamental step needed to be taken in order to advance treatments for Alzheimer’s disease: basic research. Yet, in 2020, comprehensive research, specifically through clinical trials, remain an impediment to finding a cure. Multiple studies (eg,. Watson et al,. 2015) have highlighted a variety of obstacles in regard to organizing clinical trials, among them being issues with recruitment: hurdles ranging from the lack of referrals to the lack of participation from different populations have made comprehensive studies difficult to attain. For instance, variables such as the “proximity to a research center and availability of diagnostic clinical tools” were found to be predictors of clinical trial referrals (Galvin et al,. 2010), as well as reducing travel inconvenience for patients could “offset the dencentive of study features such as the risk of intervention” (Karlawish et al,. 2008). With there being a plethora of different emcuberments to bolstering the efficacy of clinical trials, among them being the issue of recruitment, it is important that the scientific community not only continues to recognize these complications, but also actively work to address them in the most efficient and effective manner as possible in order to progress the fight against Alzheimer’s disease.
Societal implications
Alzheimer’s, combined with other dementias, is reportedly the most expensive disease in the United States, costing Americans roughly $290 billion dollars as of 2019 with Medicare and Medicaid spending $195 billion dollars on caring for those with Alzheimer’s. Clearly, this affliction takes a broad, detrimental economic toll on the American constituency, but let us further understand the mental, emotional, and physical toll Alzheimer’s has on the individual caregivers of those with the disease. A national survey of employed adult caregivers found that of the 49% of caregivers that had access to paid medical and family leave, only 55% said that the paid leave had a positive impact on their emotional well being and only 47% said that it had a positive impact on their own health. Meanwhile, of the caregivers without paid leave, 77% and 79% said that the lack of paid leave had either no impact or a negative impact on their emotional well being and their own health, respectively. As a result of the general ignorance towards the plight of patient and caregiver, it is apparent that the lack of support, whether it be through comprehensive policy or assistive programs, have left many of our caregivers without the care they need.
For my family, we were lucky to have a circle of loved ones that acted as caregivers for my grandmother, allowing us to have the ability to give her the best quality of life given her situation, but for many caring for a loved one with Alzheimer’s, the dream of being able to comfortably tend to their loved one’s needs remains elusive in our harsh reality. Alzheimer’s disease rarely affects just the individual, but in the status quo, many of our policies fail to reflect this concept.
Although the current generation of Alzheimer’s patients and their families will have to continue their strenuous fight against this disease, it is their struggles and success that ultimately pave the way for a brighter future. Through renewing a greater focus on Alzheimer’s trials, treatments, and cures, we can ensure that this now unstoppable ailment comes to an end.
this is seriously eye-opening-- a solid look into the lives of patients with Alzheimer's.