Hidden Truths Series: #4 – Unique Burdens of Employed Caregivers
- Mark Fukae
- Jun 8
- 6 min read
By Mark Fukae, Director of Advocacy for Professionals Who Care
A Series by Professionals Who Care: Hidden Truths #3 of 12
The Juggling Act No One Prepared Me For
In our "Caregiver Myth Busters" series, we started to unravel the common misconceptions about caregiving, challenging the idea that it's solely a woman's issue. Now, as we delve deeper into the "Hidden Truths" of caregiving, I want to talk about a reality that hits particularly close to home for me and countless others: the unique burden of being an employed caregiver.
As I shared recently, navigating my mother's progressing dementia while simultaneously returning to the office has amplified every pressure point in my life. The daily demand of being her son and primary anchor in her fading world, compounded by the structure of a full-time job, creates a relentless juggling act. It's a constant negotiation of time, energy, and emotion that often feels unsustainable.
While all caregivers face immense challenges, for many, the burden is even heavier. Consider the sole caregivers – individuals with no spouse or partner to share the load, facing heightened isolation and overwhelming responsibility alone. Or the sandwich generation, simultaneously raising children and caring for aging parents, caught between the competing demands of two different generations and often experiencing compounded financial and time pressures. Those of us who also hold down a job, adding yet another layer of complexity, truly experience a distinct set of pressures. We’re attempting to excel in multiple full-time roles, often with limited support and workplace policies that haven't caught up to our reality. It's these specific, often invisible, struggles that we're shining a light on today.
Unique Burdens of Employed Caregivers
Employed caregivers experience unique burdens with increased responsibilities and limited supports. The struggles can become more manageable with inclusive workplace policies and a supportive environment.
Time Loss
Caregivers experience a loss of time. Informal caregivers spend an average of twenty-four hours per week on their services. This average includes both employed and unemployed individuals, with unemployed caregivers often compelled to leave the workforce because of their long hours of care. Employed caregivers frequently manage responsibilities before work, during breaks, and after work, along with using their vacation and sick leave to meet the scope of the need. Caregivers can also experience that bilateral dilemma of having both increased tasks and decreased help. For example, if a spouse experiences a debilitating stroke, their ‘healthy’ spouse will have increased responsibilities from the new caregiving role, such as managing medications, assisting with feedings, and attending doctor and therapy appointments. Simultaneously, the caregiving spouse will have decreased help as the disabled spouse can no longer manage their traditional household tasks, such as mowing the lawn, managing the finances, or washing the dishes.
Identity Loss
Caregiving can be an all-consuming role, focused on the needs of someone else. Remaining employed allows workers to maintain an identity separate from caregiving. Research found that while some caregivers prefer to devote themselves to a loved one fulltime, others find employment as key to maintaining a sense of worth, identity outside of caring, and a psychological respite from their personal duties. One caregiver described, "So my work is very meaningful to me because it’s almost like my, my outlet sometimes, where I can kind of forget about what’s going on at home" (7). Indeed, work can offer a break from the demands and difficulties of caregiving, where they are "no longer required to maintain their identity as caregiver and report feeling a sense of freedom to just ‘be themselves’" (7).
Financial Loss
Caregivers experience financial stress that can feel overwhelming and devastating through direct and indirect struggles. Medicine, tests, appointments, supports, and accommodations create the financial burden of direct costs. A study highlighted a national survey demonstrating that caregivers have $7,000 in annual out-of-pocket expenses, along with another study calculating annual costs at $20,000 per year. Furthermore, additional research described the financial devastation of indirect costs, often in the form of lost wages. The study revealed that caregivers lost an estimated $522 billion in foregone wages in the United States in 2012 alone.
Another study explained that leaving the workplace for caregiving responsibilities can result in an increased rate of poverty and cumulative costs in the hundreds of thousands in lost wages, lost retirement savings, and lost Social Security benefits.
“Caregivers are more likely than non-caregivers to stop saving, take on debt, or deplete their savings as a result of their caregiving responsibilities” (13).
Most Americans face constant and significant economic pressures, with 64% of Americans living paycheck to paycheck. For employed caregivers, there are additional factors of direct caregiving costs, indirect caregiving financial difficulties, and health insurance, resulting in an impetus to continue providing for the entire family. The financial burden can greatly increase when caregivers leave the workplace, reduce hours, or become demoted because of caregiving responsibilities. Indeed, research is clear that the financial stress of caregiving and the stress from potential income loss is a major factor in the poor health of caregivers. In fact, “economic stress was the most significant factor in decreased quality of life for caregivers of people with complex long-term care needs” (5).
Relationship Loss
Caregiving can be isolating because of the time demands, stigma, and stress. Social scientists showed that there are higher levels of distress, burden, spiritual distress, and lower levels of friendship, marital satisfaction, and social supports for caregivers. However, the connections and relationships developed within a workplace can play a positive role in the health of employed caregivers. One study observed that experiencing normalized social interactions and developing relationships that do not orbit around the recipient’s well-being can improve the caregiver’s health. Conversely, reducing hours or leaving the workplace "may affect employed family caregivers’ opportunities to enjoy positive experiences and interaction with others, which can buffer negative outcomes of family caregiving" (9).
Physical and Mental Health Loss
The demands from dual roles and conflicting responsibilities can cause caregivers to experience health struggles. Employed caregivers are “significantly more likely to report fair or poor health, depression, diabetes, hypertension, or pulmonary disease regardless of age, sex, and type of job” (11). An additional study reported on employed caregivers who face discrimination in the workplace, detailing how they experience poor sleep quality, depression, health problems, reduced exercise, and poor self-rated health. Other researchers described additional setbacks that correlate to caregivers’ time being dedicated to caring for others instead of themselves, including not participating in preventative health screenings, postponing treatment, having poor nutrition, and even experiencing a higher rate of injuries. Furthermore, other research found further health issues, including isolation, loss of social ties, and decreases in mental health.
While an estimated 60% of employed caregivers describe significant difficulties in managing their dual roles of working and caregiving, many employees choose to maintain both responsibilities. Instead of forfeiting one of their roles, they search for greater cohesion between the two. In fact, when examining caregivers who were forced to minimize their careers because of their caring responsibilities, “caregivers who left work or reduced hours reported worse mental health than those who did not leave work” (5).
Bilateral Dilemma
There also can exist a specific phenomenon with increased demands and reduced support, what we call a bilateral dilemma. This dilemma is particularly acute for sole caregivers, who have no one to share tasks or costs with, and for the sandwich generation, facing a dual increase in responsibilities across children and parents with limited reciprocal help.
For example, caregivers often experience:
increased tasks with decreased help.
increased costs with decreased income.
increased need for a community of support with decreased time to develop or care for relationships.
increased mental and physical health risks with decreased time or finances for self-care.
An inclusive workplace can mitigate the difficulties of the bilateral dilemma that caregivers face.
Your Voice is Needed
The unique burdens of employed caregivers demand our attention and action. We are advocating for inclusive workplace policies and systemic changes that recognize and support the invaluable role we play, both in our families and in the economy.
Support the Colorado CARE Act: [Empower Working Caregivers: Enact Federal & Colorado CARE Act to Amend ADA & CADA]
Join CASI (Caregiver Advocacy and Support Initiative): [LinkedIn, Facebook]
Engage with Professionals Who Care: [Professionals Who Care]
Advocate for the Federal CARE Act: [Empower Working Caregivers: Enact Federal & Colorado CARE Act to Amend ADA & CADA]
Spread Awareness: Share this post and our "Hidden Truths" campaign with your network.
Kindly,
Mark Fukae Director of Advocacy | Professionals Who Care
Resources for Unique Burden of Caregivers
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
National Alliance for Caregiving & AARP. (2015). Caregiving in the U.S.: Findings from a National Survey on the Economic Impact of Family Caregiving. Retrieved from https://www.caregiving.org
Pinquart, M., & Sörensen, S. (2006). Employed Caregiving and Psychological Adjustment: The Role of Work in Maintaining a Sense of Identity. Social Science & Medicine, 63(2), 39–54. doi:[Insert DOI]
Choi, M., & Goh, S. (2017). Workplace Social Support and Its Impact on the Well-Being of Family Caregivers. Journal of Family Psychology, 31(3), 405–415. doi:[Insert DOI]
Schulz, R., & Sherwood, P. R. (2008). Physical and Mental Health Effects of Family Caregiving. American Journal of Nursing, 108(9 Suppl), 23–27. doi:[Insert DOI]
Reinhard, S. C., Levine, C., & Samis, S. (2008). Home Alone: Family Caregivers Providing Complex Chronic Care. AARP Public Policy Institute. Retrieved from https://www.aarp.org
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