Caregivers play an essential role supporting patients with limited abilities. But these duties can drain the caregiver emotionally. For cancer caregivers – who may function as day-to-day assistants, advocates, and advisors – the toll can be significant.
What is a caregiver?
A caregiver is someone who helps take care of parents, spouses, friends, or others. Professional care providers get paid for their work, while family and friends who provide care to loved ones generally don't. More than 65.7 million Americans fall into this informal category, according to the American Association of Retired Persons (AARP) and the National Alliance for Caregiving (NAC).
A demanding role
A problem for all caregivers is they might focus too much on the person they're caring for and neglect their own health. A Centers for Disease Control and Prevention (CDC) study shows the physical challenges caregivers face, as well as how their mental health may suffer:
- 40.7% of caregivers report having two or more chronic conditions.
- 36.7% of caregivers report having insufficient sleep.
- 14.5% of caregivers say they’ve had 14 or more “mentally unhealthy” days over the past month.
Caregiving in the context of oncology
Caregiving for patients with cancer can come with a distinct set of challenges. Caregivers not only assist with day-to-day duties, but often guide the patient’s entire treatment experience.
They may become part of the patient’s cancer care team, communicating with health care providers, as well as with family and friends.
Their responsibilities may include:
- Giving medication
- Addressing side effects
- Managing immediate problems
- Talking to doctors and nurses
- Handling insurance matters
Recognizing caregiver distress
A cancer diagnosis may come unexpectedly. As a result, some individuals enter the caregiver role unprepared. The number of decisions involved in cancer care can overwhelm the patient and caregiver alike.
Social determinants of health (SDOH) may add to the pressure on caregivers. They may have to juggle work requirements, negotiate transportation issues, or manage childcare needs.
And while all these challenges can lead to caregiver distress, many may find their needs overlooked. Just 16% of U.S. community cancer clinics screen caregivers for distress routinely, according to a 2024 study published in the Journal of the National Cancer Institute. And only 13% have a referral strategy for caregivers experiencing distress.
What can plan sponsors do?
Meeting a caregiver’s needs can start with the patient’s care plan. Distress screening programs could direct patients to behavioral health resources not only for themselves but also for their caregivers. Plan sponsors should seek comprehensive plans that offer personalized support.
In addition, plans could account for SDOH that influence the caregiver arrangement, and draw on data to identify barriers.
Finally, a plan that focuses on the patient’s behavioral health can benefit the caregiver as well. Consider these Evernorth Research Institute findings:
- Patients who don’t get behavioral outpatient treatment are twice as likely to have avoidable emergency department (ED) visits.
- Pairing behavioral health treatment with antidepressant adherence for cancer patients could save plan sponsors $5,275 per person, per year.
Next steps
For plan sponsors, filling the caregiver support gap can help lessen strain and reduce costs. Ultimately, these changes could support caregivers’ mental health.
More immediately, plan sponsors can look for plans that provide comprehensive cancer care. These plans are more likely to account for both patient and caregiver needs.
