Family Caregivers and What They Tell Us About the American Healthcare System

According to Vox, nearly 48 million Americans provide some form of informal care to an adult with either physical or mental health needs. My mother happens to be one of these people. She takes care of her mother–my grandmother–who has Alzheimer’s, and who is also physically unable to take care of herself. Family caregivers, like my mother, play a critical role in providing care and support to individuals who are unable to take care of themselves due to age, illness, or physical or mental disability. A challenge that many family caregivers have faced since the Covid-19 pandemic is the inability to take off work to be able to care for their loved ones, which puts caregivers in an unfair situation–to either provide less care or lose their job. Because of the time and extensive care that many older patients require, the commitment for family caregivers is immense. Fortunately enough, my mother happens to be one of the lucky ones.

Source: National Alliance for Caregiving (NAC)

According to the KFF reading, many family caregiving responsibilities (both before and after the pandemic) largely fall on women. More than one in ten women report they were caring for a family member who needed special assistance prior to the pandemic, and over one in ten women also report that they have new caregiving responsibilities as a result of the pandemic. As I think about my parents, my mother happens to have an older mother than my dad’s mother (she’s 84), so it makes sense that she is the one that has caregiving responsibilities. Thankfully, my dad’s mother is only 63 and father only 67 (both in very good physical shape), so I don’t foresee my dad having to take on the role of caregiver anytime soon. However, the findings about gender differences in caregiving was striking to me nonetheless. 

Source: Unsplash

Since 2020, my mother has worked from home and our family relocated cities from New York City to Milwaukee, WI. Now, my mother is a short drive from the facility that my grandmother currently lives in. She is able to see her everyday and is constantly checking in on her, bringing her meals, and taking her to doctor’s appointments. However, she is not paid or compensated for the time, money, and care that she pours into my grandmother. My mother would do what she does whether she was paid or not, however it does significantly affect her everyday life. This kind of constant care can take a significant toll on caregivers’ physical, emotional, and mental health. Specifically, as my grandmother’s Alzheimer’s has progressed, my mom has experienced increased feelings of sadness, anxiety, and hopelessness when she visits my grandmother.

Source: MDPI

These kinds of feelings are common among caregivers and exposes the flaws in the American healthcare system that do not provide family caregivers with the proper help, resources, or money that they need to not only take care of their loved ones, but to take care of themselves in the process too. The lack of proper healthcare services and resources in the United States places a significant burden on family caregivers, who may struggle to provide the care that their loved ones need while also maintaining their own physical and mental health and well-being. Addressing these issues will require a comprehensive approach that addresses the systemic economic, social, and cultural barriers to accessing proper healthcare services and resources.

Source: Atlas

A topic that we did not discuss too much in depth in class, but directly relates to the healthcare system, unpaid family caregivers, and the inequalities that are exacerbated, is long-term care insurance. Privatized long-term care insurance is something that my grandmother was afforded after being a public school teacher in Wisconsin for nearly fifty years. In the 1960s, my grandmother and other teachers like her were not paid well, however in return she was provided with great health insurance, life insurance, and dental insurance. Even though the insurance at the time was great, because healthcare costs for the elderly in the United States have skyrocketed tremendously, her insurance only covers about half of her facility bill, which is $7,000 a month for a single room. My grandmother has recently moved into a shared room with another woman, with the cost being $3,000 less, so the insurance covers the entirety of the bill now. However, the cost for the facility that my grandmother lives in is still too steep for most Americans to pay, leaving them no option but to place their elderly loved ones into nursing homes–instead of homes with more comprehensive, tailored care such as assisted living or memory care facilities.

Source: McKnights Senior Living

The American healthcare system does not prioritize or protect its elderly population. One of the main issues is the high cost of healthcare, which is often unaffordable for those aged 65 and older that are living off of fixed incomes. Many elderly patients also struggle to access quality care because of their inability to be mobile. There is a significant lack of attention on preventative care for seniors, which can lead to more serious health issues down the line, as well as frequent instances of medical errors and misdiagnoses that can have devastating consequences for elderly patients. Reforms are needed in the American healthcare system to protect our elderly population. This could include policies that expand access to affordable care for seniors, provide more comprehensive coverage for preventative care, and implement stronger safeguards to prevent medical errors. Protecting the elderly is so important because they are a vulnerable group at higher risks for health issue, financial insecurity, and social isolation. They have contributed to the inner workings of society for decades, and deserve to be treated care. Their health and well-being is crucial for the overall functioning of society.

Sources

Alzheimer’s Association. (2022). What is Alzheimer’s Disease? Retrieved March 27, 2023, from https://www.alz.org/alzheimers-dementia/what-is-alzheimers.

Atlas

Breijyeah, Z and Karaman, R. (2020). Comprehensive Review on Alzheimer’s Disease: Causes and Treatment. DMPI. Retrieved March 27, 2023, from https://www.mdpi.com/1420-3049/25/24/5789.

CAP. (2014). Reforms to Help Meet the Growing Demand for Long-Term Care Services. CAP. Retrieved March 27,2023, from https://www.americanprogress.org/article/reforms-to-help-meet-the-growing-demand-for-long-term-care-services/.

Courage, H. (2021, August 4). America isn’t taking care of caregivers. Vox. Retrieved March 27, 2023, from https://www.vox.com/22442407/care-for-caregivers-mental-health-covid.

Meadowmere and Mitchell Manor Oak Creek. (2023). Memory Care in Oak Creek, WI. Retrieved March 27, 2023, from https://www.fivestarseniorliving.com/communities/wi/oak-creek/meadowmere-mitchell-manor-oak-creek/memory-care.

NAC. (2020). Caregiving in the U.S. NAC. Retrieved March 27, 2023, from https://www.caregiving.org/research/caregiving-in-the-us/.

Ranji, U. et al. (2021). Women, Work, and Family During COVID-19: Findings from the KFF Women’s Health Survey. KFF. Retrieved March 27, 2023, from https://www.kff.org/womens-health-policy/issue-brief/women-work-and-family-during-covid-19-findings-from-the-kff-womens-health-survey/.

Rothschild, P. (2021). Supporting unpaid caregivers in crisis: A talk with Alexandra Drane. Mckinsey. Retrieved March 27, 2023, from https://www.mckinsey.com/industries/healthcare/our-insights/supporting-unpaid-caregivers-in-crisis-a-talk-with-alexandra-drane.

Unsplash

The Intersectionality of Privilege

I think that privilege can be one of the most difficult things to explain to someone who either a) doesn’t understand it, b) has it, or c) fails to acknowledge that it exists. Often when I hear the word privilege, like many people, I usually assume that the context around it is from a racial standpoint. However, privilege exists in so many different dimensions. Privilege exists not only racially, but also based on gender, ability, socioeconomic status, age, sexual orientation, religion, citizenship, education level, and most associated with this class–health

Source: UK Research Integrity Office

Understanding different forms of privilege is important to understanding how systems of inequality are perpetuated because privilege is one of the key mechanisms that perpetuates these systems. When certain individuals or groups have privilege based on certain identities that they possess, they have greater access to opportunities and resources that others (without those identities) do not. For example, studies have shown that prospective job employees with more ethnic-sounding names face hiring discrimination in comparison with their competitors with white-sounding names. This kind of discrimination leads to unequal variations in status, opportunity, and resources–that end up being key factors in the perpetuation of systemic inequality. However, learning about these inequalities and addressing them can help dismantle them to create a more equitable, just society.

Many of the inequalities that we have discussed in this class highlight an underlying trend of individuals with privilege–or lack thereof, and how this affects their lives. In the first week of class, we discussed the many pros and cons of the American healthcare system using readings from The Commonwealth Fund. Although there are pros–such as advanced care, technological innovation, and vast research–there are also many cons in the system that have detrimental effects to those that may not have some of the privileges that I listed above. Some of these cons include, but are not limited to, expensive costs of care, uneven investment in resources, lack of access, corruption, and disparities affecting marginalized groups. 

Source: Unsplash

The film that we watched in class, Remote Area Medical, was a powerful visualization of what some of the healthcare inequalities look like in this country. The film followed the nonprofit group that stages free clinics in Bristol, Tennessee that lacks access to basic health care. The film explained that Bristol has a bad drug problem and many of its citizens have done/do drugs, leading to various conditions such as lung cancer, bronchitis, lung disease. Many of the people living in Bristol are also blue collar workers that have no jobs or have low paying jobs with no insurance coverage.

Source: National Institute for Healthcare Management

I think one of the biggest eye-opening moments for me from the film really was the way that privilege, in many different areas, was displayed. Because so many people in rural areas like Bristol do not have the resources or education to obtain college degrees, they are often forced to work in jobs with dangerous health implications such as jobs in the painting industry, automotive industry, and mining industry. Many of these jobs do not have medical benefits, which highlights one of the flaws in the American healthcare system, that there is no universal coverage.“Compared with the insured, uninsured individuals have a higher prevalence of chronic medical illness, greater physical morbidity, and higher mortality” (Washington, 2001). This would be an example of individuals lacking privilege from a socioeconomic standpoint that then affects their lives in other areas, such as health and education. While all of the patients in the film were white and do obtain privilege in their lives from their whiteness, and some may have privilege as it pertains to their physical ability or sexual orientation, they are all disadvantaged socioeconomically in one way or another. This demonstrates a key idea around privilege–that it is not one-dimensional. 

For example, a white woman in America can experience sexism and not racism, while a Black woman can experience both. The white patients that were being treated in the film were disadvantaged academically and economically, but they were not discriminated against based on their race.

The socioeconomic statuses of the patients being treated by RAM significantly impacted their way of life and their access to quality medical care. Bristol, TN is over 90% white, so this racial makeup makes sense, however I could not help but wonder how the availability and accessibility of this free medical care could be different if Bristol was 90% Black. Would the clinic even exist? Would RAM try to make sure that the physicians that were volunteering represented the demographics of the people that they were serving? Would there have been racial bias within the diagnosis and treatment of certain conditions that are often racialized?

Understanding the intersectionality of privilege is critically important because it helps us to conceptualize that individual experiences that people have are constantly being shaped by their numerous identities, whether that be based on their race, gender, sexual orientation, socioeconomic status, or ability. These compounding identities intersect with one another that can either exacerbate or mitigate one’s privilege or lack thereof.

Sources

Blacksher, E. White Privilege, White Poverty: Reckoning with Class and Race in America. Moral and Social Challenges of Civic Learning. 25 February 2021. https://onlinelibrary.wiley.com/doi/full/10.1002/hast.1230.

University Libraries at Rider University. Privilege and Intersectionality. https://guides.rider.edu/privilege

United States Census Bureau. United States Census Bureau. 2022. https://www.census.gov/quickfacts/bristolcitytennessee

Bridges, K. Implicit Bias and Racial Disparities in Healthcare. American Bar Association. 2023. https://www.americanbar.org/groups/crsj/publications/human_rights_magazine_home/the-state-of-healthcare-in-the-united-states/racial-disparities-in-health-care/

UK Research Integrity Office. Academic Wheel of Privilege. 2023. https://ukrio.org/research-integrity-resources/equality-diversity-and-inclusion/academic-wheel-of-privilege/

Washington, D. Charting the path from lack of insurance to poor health outcomes. West J Med. July 2001. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071459/#:~:text=Lack%20of%20health%20insurance%20is,it%20has%20significant%20health%20consequences.&text=Compared%20with%20the%20insured%2C%20uninsured,physical%20morbidity%2C%20and%20higher%20mortality.

Day, J. Rates of Uninsured Fall in Rural Counties, Remain Higher Than Urban Counties. United States Census Bureau. 9 April 2019. https://www.census.gov/library/stories/2019/04/health-insurance-rural-america.html

Roberts, N. Urbanization Leaves Rural America In A Health Care Crisis. Forbes. 25 October 2019. https://www.forbes.com/sites/nicolefisher/2019/10/25/urbanization-leaves-rural-america-in-a-health-care-crisis/?sh=36210e3d1b2a

Carlsson, M. Is It Your Foreign Name or Foreign Qualifications? An Experimental Study of Ethnic Discrimination in Hiring. ECONSTOR. November 2008. https://www.econstor.eu/bitstream/10419/35823/1/584702035.pdf