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Nurse and Caregiving Consultant

"I'm doing the best I can," has become the exhausted refrain of health care workers who find themselves pulling "double-duty," caring for patients at work and then rushing home to care for a loved one. The stress and toll on their physical and mental health is staggering. But it does not stop there. As you might imagine, struggling to juggle work-life caregiving directly impacts virtually every aspect of their lives — the people they care for, their jobs, their peers and the many relationships they value. This growing number of people caregiving around the clock presents unique challenges to health systems and new opportunities to innovate.

THE RISE OF CAREGIVING AROUND THE CLOCK
Employers across all industry segments are waking up to the realization that up to 73% of their workforce has a secret second job: caregiver to a family member.¹ For health systems, the projected impacts are even more significant than for other types of employers. However, the exact number of health care workers who are double-duty caregivers is unknown, because data are scant.² Why? Employers do not routinely ask them, nor do workers tell their employers.

Geri Baumblatt is co-founder of the Difference Collaborative, a nonprofit focused on research, advocacy and improved organizational design related to the intersection between caregiving and work. Last year, Baumblatt coauthored a study about nurses who are also family caregivers and how that affects individuals, organizations and the care that they provide. She said one big challenge to raising awareness of the issue and working to bring about systemic improvement is that nurses don't self-identify — they don't voluntarily share they are carrying the additional role of family caregiver, nor do they often fully voice the complexities of the situation they're in. "Health care employers realize it's happening subconsciously, but are not consciously aware of it being an issue to address," says Baumblatt.

Simply look around you, or even look in the mirror, and you will see double-duty caregivers in your midst. They are the nurses, doctors, chaplains and so many other caring professionals who are passionate about helping others. It makes perfect sense then that their passion carries over into their personal lives, too.

REAL CHALLENGES, REAL PEOPLE
"My biggest challenge was how to do both of my jobs well, caring for Mom and doing my job without guilt. I was constantly worrying. The feeling of having to make the choice between my job and caring for my loved one took its toll on me," says Deborah Weber, who regularly found herself driving two hours — at a moment's notice — when her chronically ill, aged mother's condition changed. Weber eventually made the difficult decision to leave her nursing job in clinical improvement near Chicago to alleviate her stress and care for her mom.

You can feel the impact of the stress and the exhaustion, too, in Pamela Cacchione's reflection on her dual caregiving experience: "I'm constantly being pulled in two different directions. Even as a nurse practitioner specializing in gerontology, the challenges are significant — both physically and emotionally tough — when trying to make the difficult choices to get Dad the right care."

Indeed, the stress and mental health impacts of double-duty caregiving are significant. In 2020, a staggering 82% of double-duty caregivers reported having at least one adverse mental health symptom.³ Burnout, physical strain and the emotional stress of caregiving are at alarming levels.⁴ Double-duty caregivers are particularly vulnerable to increased risk for poor health outcomes, decreased work productivity, increased risk of making drug errors or mistakes, and are the least supported. ⁵

Not surprisingly, most employers lack a true sense of the full impact of this dual role, contributing to widening misperceptions between employer and employee. This confusion in turn contributes to a misaligned approach in how well the organizational culture supports balancing caregiving with work and can leave double-duty caregivers continuing to struggle between work and caregiving responsibilities.⁶

As Baumblatt explains, "Ten percent of the nurses I interviewed thought their caregiving had a negative impact on their care delivery, while 24% of their managers thought double-duty caregiving impacted quality of care and patient safety." Because we lack hard data, attitudes and perceptions are all we have to go on. While it's currently hard to measure, the effects of double-duty caregiving are real.

BALANCED WITH BLESSINGS
Both the patient in a care setting and the loved one at home — also a patient — are blessed by the dual role. "My sense of compassion with patients and their families increased," says Maria Arvonio, president-elect for the National Association of Catholic Nurses, USA. "As a hospital supervisor working with families making end-of-life decisions, I was able to tap into what I was going through, navigating these same issues with my parents, and am able to be a more understanding advocate for them."

Similarly, Janet Munday, a public school nurse in Wapakoneta, Ohio, says caring for her dad with Alzheimer's taught her how to be more patient and listen differently. "I was able to hone my skills because of caring for Dad and became a more compassionate, better listener with my patients."

As Cacchione so perfectly summarizes, there are distinct advantages to being a double-duty caregiver, saying, "I had the ability to draw on my professional knowledge as I cared for Dad. I knew what to do at home, who to ask for help and what equipment would provide him the best support."

MAKING THE CAREGIVING PROCESS EASIER FOR ALL
So, what can be done to make the lives of double-duty caregivers better and easier? Those serving in this dual role say they need more than the traditional employer offering of Family Medical Leave Act days. Although it's a good benefit, it's not enough.

To help improve her challenging situation, Weber suggests, "I need a support group available to me. That would be a lifesaver." And because double-duty caregiving is complex, she adds, "I, too, need practical tools to help me stay as organized as possible, along with spiritual resources to sustain me on a daily basis."

Considering at-work solutions, Arvonio makes the case for having a "culture of understanding" among peers, saying, "Double-duty caregivers often feel their jobs are at stake if they call off to care for their loved one." She suggests that managers "create a list among staff to volunteer to cover" in situations when the double-duty caregiver has an unplanned event. Other workplace ideas include offering day care for older adults to employees, similarly as it is provided today for workers with children.

And, of course, the need for access to additional education and training is critical. Cacchione recommends providing "support in locating financial, legal, transportation and other community resources because it takes so much time to figure these things out, and it's often accompanied by a great deal of frustration."

INNOVATION ESSENTIAL TO ADDRESS DOUBLE-DUTY CAREGIVERS' NEEDS
There is no single answer to solve all of a double-duty caregiver's needs. However, by increasing awareness of the effects of this dual role on the caregiver, their organization and their patients, new resources and inventive initiatives can be developed, creating opportunities to innovate and collaborate.

Up to this point, programs to support caregivers have been largely aimed at the family caregiver. Though much can be learned from programs supporting family caregivers, innovation is necessary to address the unique challenges of the double-duty caregiver.

The first step is to gain a better understanding of what areas to take action on and address. The good news is there's substantially more investigation underway, where before little attention had been paid to the dual role of a health care professional who also had family caregiving responsibilities.

Among a handful of initiatives, Henry Ford Health system recently expanded their family caregiver support program CARE (Caregiver Assistance Resources and Education Program) to also focus on employees who are double-duty caregivers.⁷ Launched as an online support group to create connection and support, their Employee Resource Group for double-duty caregivers has grown to more than 1,000 members.

Another initiative, which launched this fall, is the formation of an advisory group of health care leaders who are partnering with Nourish for Caregivers, a faith-based family caregiver ministry serving caregivers across the country, to collaborate on creating a program tailored to double-duty caregivers.

Clearly, there is a great need for support for double-duty caregivers and much room for innovative solutions. Emphasizing whole-person well-being will be essential as new initiatives are created and tested to support the double-duty caregiver. Catholic health care, with its long history of holistically caring for mind, body and spirit, is well-positioned to take a leadership role in defining and implementing models to care for the rapidly growing population of double-duty caregivers.

"I'm doing the best I can," is one way to power through double-duty caregiving. But there are other, better ways. Through collaborative innovation, there is hope to bring those solutions to those who need it most. As a longtime participant of a faith-based caregiver support group, double-duty caregiver Dabney Messer-Rehak, RN, best explains it, "Being supported with needed resources while integrated into a community of caregivers, as well as learning to take it back to God, has helped me recognize the graces of my caregiving roles, and it has been life-changing for me."

Nourish for Caregivers' Double-Duty Caregiver Advisory Group formed this fall and is seeking interested health care leaders to help inform and collaborate on solutions for programs that can effectively address the needs of double-duty caregivers. For more information on participating in this group, please contact Kelly Johnson at [email protected].

DEBRA KELSEY-DAVIS is co-founder of Nourish for Caregivers and Sagacity.Care, a digital health caregiver navigation and care coordination platform. She is a double-duty caregiver and a member of the board of directors for the Illinois Catholic Health Association and the National Association of Catholic Nurses, USA.

NOTES

1. Lisa Rabasca Roepe, "Here's How People Managers Can Support Employees Who Are Caregivers," Society for Human Resource Management, February 7, 2023, https://www.shrm.org/resourcesandtools/hr-topics/people-managers/pages/how-to-support-caregivers.aspx.
2. Geri L. Baumblatt et al., "The Impact on Organizations, Individuals, and Care When Nurses Are Also Family Caregivers," Nursing Outlook 70, no.3 (May-June 2022): 381-390, https://doi.org/10.1016/j.outlook.2021.12.001.
3. Mark E. Czeisler et al., "Mental Health, Substance Abuse, and Suicidal Ideation Among Unpaid Caregivers of Adults in the United States during the COVID-19 Pandemic: Relationships to Age, Race/Ethnicity, Employment, and Caregiver Intensity," Journal of Affective Disorders 295, no.1 (December 2021): 1259-1268, https://doi.org/10.1016/j.jad.2021.08.130.
4. "2020 Report: Caregiving in the U.S.," AARP and National Alliance for Caregiving, May 2020, https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf.
5. "Supporting Double Duty Caregivers: A Policy Brief," Mount Saint Vincent University, https://www.msvu.ca/wp-content/uploads/2020/05/PolicyBrief_Revised202-Jan202013.pdf.
6. Joseph B. Fuller and Manjari Raman, "The Caring Company: How Employers Can Help Employees Manage Their Caregiving Responsibilities — While Reducing Costs and Increasing Productivity," Harvard Business School, January 2019, https://www.hbs.edu/managing-the-future-of-work/Documents/The_Caring_Company.pdf.
7. Jeanne Sheils Twohig, "Doing Double Duty: Health Care Workers Who Also Care for Loved Ones," Center to Advance Palliative Care, November 19, 2021, https://www.capc.org/blog/doing-double-duty-health-care-workers-who-also-care-for-loved-ones/.