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DMEJ

Duke Medical Ethics Journal

Caring for Caregivers

By Yurika Sakai
Yurika Sakai_Graphic1.png

As human lifespans increase in response to the growth of scientific knowledge and medical technology, caring for a growing elderly population has become a worldwide concern. By 2050, the global population of people aged 60 years and older is expected to reach 2.1 billion [1]. However, this trend is particularly concerning for residents of East Asia, where 90% of Japanese, 80% of South Koreans, and 70% of Chinese people describe aging as a “major problem” for their country [2]. In Europe, countries like Germany and Spain also face concerns regarding the responsibility of caring for their aging population. These countries have some of the oldest populations today, and the proportion of elderly to young people is expected to increase dramatically in the next 30 years [2]. 

Who will, and who should, be responsible for the care of these elderly people? While most people hope that their family members will take care of them as they grow old, cultural differences reveal surprising variations in the expected allocation of responsibility. A majority of people in most countries expect the government to care for their elderly, followed by family and the elderly individual themself [2]. Meanwhile, people in countries where the government is expected to care for the elderly worry more about their standard of living in old age than people in countries where individuals expect to care for themselves. Even in Israel, where a majority of the population expects the government to care for their elderly, people who rely on the government are 44% less confident in their standard of living in old age than people who expect their family or themselves to take responsibility [2]. If confidence in quality of care declines with increased expectation of governmental responsibility, is it morally acceptable to decline the responsibility of caring for our loved ones? To what extent should family members be obligated to care for their elderly family members?

A family caregiver is any individual who provides at-home care for a relative, friend, or loved one to help alleviate the challenges of their physical or mental health problems [3]. Help can range from cooking and cleaning to aiding the individual in taking medication or caring for personal hygiene [4]. Given the flexibility of this definition, many people may be surprised to realize that they or their family members are already family caregivers in some capacity. The variety of roles that a caregiver can play makes the experiences and perceived burdens of care different for each family caregiver. Yet, most people are willing to step up to this role due to a sense of familial obligation. Family caregiving can be fulfilling, as caregivers have the opportunity to give back to a loved one who has cared for them in the past [5]. Being involved in the caregiving process also gives family caregivers a sense of control and reassurance over the quality of care their loved one receives. Engagement with people at the end of their life can also give caregivers a better appreciation for life itself, and enrich their worldview [6]. In part because of the emotional gratification that caregivers experience, 83% of family caregivers view their responsibility as a positive experience overall [5].

Despite the emotional fulfillment that can motivate family members to continue caregiving, there are various burdens of care that affect the caregiver’s livelihood and well-being. Foremost, caring for another family or friend can interfere with the caregiver’s career. Depending on the degree of impairment, a caregiver may spend between 85-253 hours a month providing assistance to their loved ones, the latter of which is equivalent to nearly two full-time jobs [6]. Since family caregivers only receive payment from the government if the individual receiving care is on Medicare or Medicaid, more than one fourth of eldercare providers give their services unpaid [7]. The time and energy spent caring for elders can also lead caregivers to neglect their own medication and health appointments and interfere with the caregiver’s physical health [8]. More than a third of caregivers report getting insufficient sleep and 17.6% of caregivers report experiencing more than 14 days of physically unhealthy days in a month [9]. The uncompensated time devoted to supporting a loved one can hinder a caregiver’s ability to pursue their own career and life goals.

More urgent than the physical burdens of care may be the mental and emotional stress that caregivers can experience. Caregivers are often unprepared to assume the roles of their caregiving, particularly when they need to provide medical assistance for nursing tasks (such as for patients with dementia). Caregivers sometimes need to become decision makers for the elderly and make decisions regarding care goals, end-of-life care, finances, and insurance issues, which can place an emotional burden on the caregiver. The sudden onset of responsibilities can be overwhelming, and 44% of caregivers agree that caregiving is emotionally difficult [6]. Moreover, in countries where expectations of caregiving discriminate by gender, fulfilling caregiving roles may lead to a sense of oppression. In Japan, where some families continue to follow traditional norms that prescribe women to care for the needs of their elderly parents, their husband, and the housework, assuming these responsibilities, even out of their own volition, can lead women to feel undervalued. This may alter the woman’s relationship with their care recipient and generate tension between the caregiver and the elderly parents [10]. The responsibilities of caregiving also generate familial conflict in around 20% of caregiver families who experience disagreements over the procedures of care [6]. The desire to provide the best possible care conditions out of love for the recipient of care can in turn generate stress in caregivers and tension within the caregiving families. 

Although many people expect the government to care for their elderly, few of these families actually rely on the government for eldercare due to the barriers to accessing the provided services. 72% of middle class seniors in 2033 are projected to be ineligible for federal programs like Social Security and Medicare while being unable to afford assisted living [11]. Even those who do qualify for these federal programs may find it difficult to navigate websites and online resources that are needed to select appropriate insurance plans or apply for benefits. While most state governments do have Aging and Adult Service departments, the services provided can differ between states and create discrepancies in care. For instance, North Carolina’s Aging and Adult Service department offers home assistance, home delivered meals, and transportation services, while Connecticut’s Aging and Disability Services provide job training and nutritional advice [12]. The ranging nature of services provided from state to state makes government programs an inconsistent resource for families seeking elderly care across the United States. 

Ultimately, family caregiving provides great comfort for patients and families as they are able to have more control over the care services provided for their loved ones. However, too much responsibility placed on family caregivers can have repercussions on their careers and emotional and physical well-being, which may inadvertently worsen the quality of care that the elderly receive. While familial care is a beneficial experience that most care providers are willing to take on voluntarily, many burdens of care could be reduced with increased reliance on government support programs. Rather than shouldering all responsibilities of care or conversely leaving the elderly to care for themselves, family members of those who are eligible for Medicare and Medicaid services may benefit from helping their elderly navigate and access government support programs; utilizing these resources can help the elderly and their families feel control over their care while easing the burden of care on family members. Meanwhile, it is also necessary for governments to expand eligibility for their eldercare services so more families can feel confident entrusting the government with the care of their elderly loved ones. Public eldercare services should expand to support not just the elderly, but also provide mental and physical wellness checkups for caregivers. Although caring for the elderly is important, caring for the caregivers is equally important in order to preserve family relations and allow caregivers to experience the benefits of assisting their loved ones. 

“The proportion of elderly to young people is expected to increase dramatically in the next 30 years. Who will, and who should, be responsible for the care of these elderly people?”
Yurika Sakai_Graphic2.png
Review Editor: Mahi Patel
Design Editor: Heiley Tai
References
  1. World Health Organization. (2022, Oct 1). Ageing and Health. Retrieved from https://www.who.int/news-room/fact-sheets/detail/ageing-and-health

  2. Pew Research Center. (2014, Jan 30). Attitudes About Aging: A Global Perspective. Retrieved from https://www.pewresearch.org/global/2014/01/30/attitudes-about-aging-a-global-perspective/

  3. HelpGuide.org. (2024, Feb 5). Help and Support for Caregivers. Retrieved from https://www.helpguide.org/articles/parenting-family/family-caregiving.htm#:~:text=Family%20caregiving%20is%20the%20act,a%20loved%20one%20at%20home

  4. National Institute on Aging. (2023, Oct 12). Sharing Caregiving Responsibilities. Retrieved from https://www.nia.nih.gov/health/caregiving/sharing-caregiving-responsibilities

  5. American Psycological Association. (2011). Positive Aspects of Caregiving. Retrieved from https://www.apa.org/pi/about/publications/caregivers/faq/positive-aspects

  6. Committee on Family Caregiving for Older Adults; Board on Health Care Services; Health and Medicine Division; National Academies of Sciences, Engineering, and Medicine; Schulz R, Eden J, editors. Families Caring for an Aging America. Washington (DC): National Academies Press (US). (2016, Nov 8). Family Caregiving Roles and Impacts. Retrieved from https://www.ncbi.nlm.nih.gov/books/NBK396398/

  7. Bureau of Labor Statistics. (2023, Sept 21). Unpaid Eldercare in the United States– 2021-2022 Data From the American Time Use Survey. Retrieved from https://www.bls.gov/news.release/elcare.nr0.htm.

  8. Wang, X., Robinson, K. M., & Hardin, H. K. (2015). The Impact of Caregiving on Caregivers' Medication Adherence and Appointment Keeping. Western journal of nursing research, 37(12), 1548–1562. https://doi.org/10.1177/0193945914533158

  9. Centers for Disease Control and Prevention. 2019, Aug 7). Caregiving for Family and Friends– A Public Health Issue. (https://www.cdc.gov/aging/caregiving/caregiver-brief.html)

  10. Hashizume, Y. (2010). Releasing From the Oppression: Caregiving for the Elderly Parents of Japanese Working Women. Qualitative Health Research, Volume 20, 731-867. https: //doi.org/10.1177/1049732310362399 

  11. NORC at the University of Chicago. (2022, Aug 31). Many Middle-Income Seniors Will Not Be Able to Pay for Long-Term Care and Housing in 10 Years. Retrieved from https://www.norc.org/research/library/many-middle-income-seniors-will-not-be-able-to-pay-for-long-term.html

  12. North Carolina Department of Health and Human Services. (2024). Senior Centers. Retrieved from https://www.ncdhhs.gov/divisions/aging-and-adult-services/senior-centers; https://portal.ct.gov/AgingandDisability/Content-Pages/Main/Programs-and-Services

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