Recognizing the “Invisible Workforce”: Understanding Caregiver Stress and Providing Support

Mary Steinbach

When I think of all the roles any given caregiver tends to take on, I am reminded of a term I recently learned, "invisible workforce." This is truly what caregivers are!  A family caregiver is defined as family or friend who provided care to family or friend with a health problem or disability in the past 30 days.¹ 

In my own practice I make an effort to ask patients and their caregivers about their relationship history. I always enjoy hearing the story of their relationship, whether it is a friend/neighbor or spouse of many years. I try to pay attention to what goes unsaid as well. Often caregiver interactions with the patient can provide valuable clues about the level of caregiver stress. We are fortunate to have an extremely experienced multiple myeloma social worker who understands what patients and caregivers go through across the entire cancer continuum. Even if we cannot technically treat a caregiver, advanced practice providers can ask pointed questions and help caregivers find resources, or at least make referrals to another health care provider who can help with their needs. Social workers play an important role in this also.

Beth Faiman

I totally agree—caregivers are the invisible workforce! The dedicated caregiver will often accompany the patient to each visit, dutifully take notes, and phone or send electronic messages to the office for advice. But sometimes, being the caregiving is just too much to bear. The stress of a caregiver may be subtle at first, and each caregiver deals with stress individually. In my practice, I have observed that, when under significant stress, the caregiver will accompany the patient to the office or treatment visits less frequently, until they rarely return. I have also observed caregivers who come to the office to voice frustration over health, finances, or medical care. This is exactly when social workers are so helpful in identifying and providing resources for both the patient and caregiver.

Although a caregiver is essential to the processes for intensive treatments, such as stem cell transplant and newer CAR T-cell and bispecific-antibody therapies, sometimes patients don’t have a caregiver. The lack of a dedicated or suitable caregiver is not always talked about but is a real issue and should be viewed as a disparity in cancer care. Patients may be offered less effective therapy because a 24-hour caregiver is not available to be with the patient post-administration. Mary, why do you think that some patients may not have dedicated caregivers?

Mary Steinbach

Caregivers are everywhere and perform caregiving services for free, often suffering wage losses of their own. The statistics in our country, and specifically the ones I am familiar with in Utah, are staggering. The University of Utah, College of Nursing, leads an interdisciplinary initiative called the Family Caregiving Collaborative, and their research (specific to Utah) shows that nearly 1 in 4 women and 1 in 6 men older than 18 are family caregivers. The estimated economic value of caregiving in Utah in 2019 was $4.6 billion!² The Collaborative’s data includes caregiving for patients with a variety of medical conditions, not just cancer, but I mention these data because the numbers are so impressive from both an altruistic and an economic perspective.

The Administration for Community Living created the 2022 National Strategy to Support Family Caregivers, with the goals of increasing awareness about caregiving in the United States, building partnerships and engagement with family caregivers across medical specialties, and increasing services and support for caregivers. The strategy includes 350 actions that various federal agencies will take over the next 3 years, as well as recommended actions focused on financial and workplace security that can be taken at the state, community, and employer levels. The strategy also seeks to expand evidence-based research focused on caregivers and translation of that research into systems and resources for caregiver support.³ Knowledge of caregiver issues is critical for advanced practice providers as we strengthen and can redefine the connections among patients, caregivers, and the health system. If caregiver health suffers, so does the health of our patients.  

Beth Faiman

Wow! Yes, the statistics you shared really are staggering. There has been significant research in the past decade into the well-being of caregivers of patients with myeloma, which underscores the importance of caregiver support. These patients used to live only 3 to 5 years, and now many are living decades. Some patients are even outliving their spouses, which is devastating for patients and often comes as a shock.

One recent study by O’Donnell and colleagues I found interesting assessed quality of life, psychological distress, and prognostic perceptions of caregivers of patients with multiple myeloma by line of therapy.⁴ The study not only showed that caregivers of patients treated for myeloma experience substantial psychological distress across the disease continuum, but highlighted differences in perception of prognosis, and anxiety as a result of their situations. Fortunately, many healthcare organizations recognize the caregiver burden and provide formal and informal resources to the patient. For example, the Multiple Myeloma Research Foundation has the “Multiple Myeloma Caregiver Guide,”⁵ and the International Myeloma Foundation has a rather large section of its website dedicated to resources and support.⁶ Mary, do you think that cancer caregiving is different from caregiving for other conditions?

Mary Steinbach

Cancer caregiving may be more recognized than caregiving for some other conditions, as there are awareness campaigns through various societies and patient advocacy organizations. In addition, most cancers are understood as having symptoms related to treatment that can be limiting regarding daily life activities, as well as costly and time consuming. Caregivers for patients with multiple myeloma are essential to the cancer journey throughout a patient’s disease trajectory, but as you mentioned previously, Beth, there are critical time points where patients must have caregiver assistance to be eligible for treatment, such as during stem cell transplant, either autologous or allogeneic, and for CAR T-cell therapy infusion. During these times, patients often have to temporarily move closer to the transplant center and require both the social/emotional support of a caregiver, as well as the symptom monitoring required following these procedures to ensure safe and effective therapy. Unfortunately for caregivers, this often means their lives get put on hold. Work, their other family and community obligations, and even their own health and emotional well-being must come second. 

Beth Faiman

Yes, this is so true. The struggle is so real for patients and caregivers regarding the burden of time for treatment—all of those necessary trips back and forth to the infusion center. A study published by Auclair and colleagues reported that although recent legislation promotes the inclusion of caregivers and patients in treatment decision-making, treatment-related risks such as peripheral nerve damage and cytopenias were cited to be among the most bothersome features considered when selecting a treatment. Interestingly, cost is important to some patients when evaluating treatment options, but duration and quality of life are more important to caregivers.⁷ More research is necessary to understand years of life lost especially in the young, healthy patients with myeloma, and the financial impact on the caregiver who, in many cases, works tirelessly to support the patient and who is not always recognized by others for their efforts.