Hidden Truths #3: Increasing Rates of Employed Caregiving

By Mark Fukae, Director of Advocacy for Professionals Who Care

A Series by Professionals Who Care: Hidden Truths #3 of 12

At Professionals Who Care, we often highlight the urgent need for inclusive workplace policies for caregivers. One of the fundamental "hidden truths" is that the landscape of caregiving, particularly for employed individuals, has dramatically transformed over the last 70 years. The traditional image of who provides care, and under what circumstances, is no longer accurate.

The rates of employed caregiving have increased dramatically, driven by five primary, interconnected societal shifts:

• Medical Cost Cutting

• Women in the Workforce

• Decreased Social Supports

• Aging Baby Boomer Generation

• Deinstitutionalization of Psychiatric Hospitals

Despite these profound changes, workplace standards and policies have significantly lagged. It's time for our workplaces to catch up to these new realities and foster genuine inclusivity for employed caregivers.

Medical Cost Cutting

Since the 1980s, the medical system has increasingly transferred the burden of care from hospitals and professional providers directly to families and friends. This shift is primarily driven by efforts to manage spiraling medical costs. We've seen an expansion of outpatient procedures, decreased lengths of hospital stays, and the delegation of serious illness management – from complex medication regimens to wound care – directly to loved ones.

As Bell, Whitney, & Young (2019) note, "Increasingly, these caregivers are expected to acquire a sophisticated understanding of the recipient's condition and new skills to execute complex medical tasks, previously performed by skilled providers, often with little training or ongoing support." (1) This means family caregivers are effectively operating as an unpaid, untrained extension of the healthcare system, while simultaneously managing their professional lives.

Women in the Workforce

Historically, the American economy and social structure heavily relied on the unpaid services of women, who often provided full-time care for family and community needs from within the home. Our economy and society have undergone a radical transformation since then, with women now comprising a significant portion of the paid workforce.

However, many workplaces still operate under the outdated assumption that most employees have someone at home to manage family and community needs. This disconnect means that as women have taken on increased responsibilities in the paid labor force, the workplace has largely failed to create policies that reflect this new reality. This has led to increased stress on families, forced difficult and consequential choices for caregivers between providing care and earning an income, and created residual negative effects for those needing care.

Decreased Social Supports

The United States has experienced a decline in traditional social supports that once provided robust volunteerism and community networks. A decrease in participation in religious institutions, social organizations focused on volunteerism, and clubs that fostered community connectivity has reduced the overall social safety net and informal supports available to individuals.

This increased isolation makes it significantly more difficult for caregivers to receive backup support, particularly during emergencies or crisis management. Employed caregivers often experience a disproportionate burden of responsibility, with fewer community resources to lean on.

Aging Baby Boomer Generation

We are currently in the midst of a dramatic demographic shift driven by the aging baby boomer generation. In 2010, the ratio of family caregivers for people eighty years or older was 7:1; by 2030, the U.S. Census predicts this ratio will shrink to a stark 4:1.

As medical advances continue to extend life expectancy, much of the increasing care needs for the elderly fall to family and friends. Informal caregivers who find themselves providing for both their aging parents and their own children are commonly known as the "sandwich generation," facing intense pressure to manage these often opposing and demanding responsibilities. As Bornstein, Williams, & Painter (2012) highlight, "Workers worldwide face caregiving responsibilities that can be very long term, sandwiched between aging parents and children." (2)

Deinstitutionalization of Psychiatric Hospitals

Starting in the 1950s and continuing through the 1980s, the country underwent a significant period of deinstitutionalization of psychiatric hospitals. Today, over 92% of patients who previously would have received full-time inpatient treatment are now cared for within society, supported by what is often a thin and fragmented patchwork of community resources.

For individuals fortunate enough to have loved ones able to help, this immense work has been absorbed into the informal caregiver network. The responsibilities are significant, as many of these disabilities require a lifetime of care. Torrey (1997) notes, "Most of those who were deinstitutionalized from the nation's public psychiatric hospitals were severely mentally ill. Between 50 and 60 percent of them were diagnosed with schizophrenia. Another 10 to 15 percent were diagnosed with manic-depressive illness and severe depression. An additional 10 to 15 percent were diagnosed with organic brain diseases -- epilepsy, strokes, Alzheimer's disease, and brain damage secondary to trauma." (9) This substantial shift has placed a long-term, intensive care burden on families.

Back to Hidden Truths

These five interconnected factors have converged to create the current reality of increasing employed caregiving rates. The "hidden truth" is that our societal structures, especially our workplaces, have not evolved to meet these new demands. It is imperative that we recognize these shifts and advocate for policies that truly support working caregivers.

Next in #4: Unique Burdens

Stay tuned for the next installment in our "Hidden Truths" series, where we will explore the #4: Unique Burdens faced by specific segments of the caregiver population.

Your Voice Matters: Be Part of the Solution

The "Hidden Truths" series illuminates critical societal shifts that have profoundly impacted caregivers. But understanding the problem is only the first step. Now, it's time to act. Your engagement, your story, and your advocacy are crucial to driving the change employed caregivers so desperately need.

Here's how you can be part of the solution and help us build a more supportive and inclusive future for caregivers:

• Engage with Professionals Who Care: Our latest "Hidden Truths" post is published right here on the Professionals Who Care website, serving as the central hub for our advocacy. Connect with our community of caregivers and allies. Share your story (anonymously if preferred, we respect your privacy!), find invaluable resources and support, and learn how you can advocate for a more inclusive workplace that truly understands the #FutureOfWork.

  • Visit Professionals Who Care: [Professionals Who Care]

  • Connect on LinkedIn: [Link to PWC LinkedIn page]

• Support the Colorado CARE Act: As a Colorado resident, your voice has direct power in our state. While our dedicated website for the Colorado CARE Act is coming soon, you can make an immediate impact. Sign and share our petition on Change.org to urge legislators to support this crucial legislation. The Colorado CARE Act will provide vital protections, accommodations, and support for family caregivers in the workplace, ensuring they don't have to choose between their loved ones and their livelihoods. Your voice can make a definitive difference in ensuring its passage through the Colorado General Assembly in the upcoming session.

  • Sign and share the petition: [Link to Change.org petition: Empower Working Caregivers: Enact Federal & Colorado CARE Act to Amend ADA & CADA]

• Join CASI (Caregiver Advocacy and Support Initiative): If you're a concerned Colorado citizen, become a member of CASI and add your voice to our growing movement right here in our state. Together, we can amplify our advocacy efforts, mobilize local support, and push for meaningful, Colorado-specific change.

  • Learn more about CASI on LinkedIn and Facebook

• Advocate for the Federal CARE Act: The challenges facing caregivers are not unique to Colorado; they are a national imperative. We are actively advocating for a Federal CARE Act, modeled after the comprehensive Colorado legislation, to create nationwide protections by amending Article 42 of the Americans with Disabilities Act (ADA). Your support for this broader effort is essential.

  • Sign our petition: [Link to Empower Working Caregivers: Enact Federal & Colorado CARE Act to Amend ADA & CADA]

• Spread Awareness: The "Hidden Truths" campaign is designed to bring critical issues out of the shadows and into the light. Share this blog post and other content from our series with your network, friends, family, and colleagues. Help us educate, inspire, and mobilize a broader community to demand change.

The Colorado CARE Act, alongside the proposed Federal CARE Act, offers a tangible path towards a more just, equitable, and economically resilient society for working caregivers and for all of us who depend on them. Let's seize this opportunity to care for those who care for others.

Kindly,

Mark Fukae Director of Advocacy | Professionals Who Care

Resources:

1. Bell, J. F., Whitney, R. L., & Young, H. M. (2019). Family Caregiving in Serious Illness in the United States: Recommendations to Support an Invisible Workforce. Journal of the American Geriatrics Society, 67, S451–S456. https://doi.org/10.1111/jgs.15820

2. Bornstein, S., Williams, J. C., & Painter, G. R. (2012). Discrimination against Mothers Is the Strongest Form of Workplace Gender Discrimination: Lessons from US Caregiver Discrimination Law. International Journal of Comparative Labour Law & Industrial Relations, 28(1), 45–62.

3. Cech, E. A., & O’Connor, L. T. (2017). ‘Like second-hand smoke’: the toxic effect of workplace flexibility bias for workers’ health. Community, Work & Family, 20(5), 543–572. https://doi.org/10.1080/13668803.2017.1371673

4. Earle, A., & Heymann, J. (2012). The cost of caregiving: Wage loss among caregivers of elderly and disabled adults and children with special needs. Community, Work & Family, 15(3), 357–375. https://doi.org/10.1080/13668803.2012.674408

5. Greene, R., & Hunt, G. G. (2017). Who Is My Brother’s Keeper Now? Caregiving: Yours, Mine, and Ours. Generations, 41(2), 71–78.

6. Greenfield, J. C., Hasche, L., Bell, L. M., & Johnson, H. (2018). Exploring how workplace and social policies relate to caregivers’ financial strain. Journal of Gerontological Social Work, 61(8), 849–866. https://doi.org/10.1080/01634372.2018.1487895

7. Hirsh, C. E., Treleaven, C., & Fuller, S. (2020). Caregivers, Gender, and the Law: An Analysis of Family Responsibility Discrimination Case Outcomes. Gender & Society, 34(5), 760–789. https://doi.org/10.1177/0891243220946335

8. Paulson, G. W. (2012). Closing the asylums: Causes and consequences of the deinstitutionalization movement. McFarland & Company, Inc.

9. Torrey, E. F. (1997). Deinstitutionalization: A Psychiatric "Titanic". PBS. Retrieved February 19, 2022, from https://www.pbs.org/wgbh/pages/frontline/shows/asylums/special/excerpt.html#:~:text=Deinstitutionalization%20is%20the%20name%20given,to%20the%20mental%20illness%20crisis.