Supporting the Supporters: What Family Caregivers Need to Care for a Loved One With Cancer

An estimated 4.6 million people in the United States care for someone with cancer at home.² Too often, these caregivers—spouses, other family members, or friends—are poorly prepared for this vital but demanding role that takes a toll on them and, by extension, the patient.^3,4 Only one third of all caregivers report being asked by a health care provider what they need to care for the patient; even fewer are asked what they need to care for themselves.² That lack of preparation can worsen the anxiety that caregivers already feel about a loved one’s health.^5–10

An at-home caregiver, whom we simply call the family caregiver, typically provides the patient with cancer with at least four types of assistance: (1) daily living activities (eg, transportation, meals); (2) medical care (eg, wound care, medication management, injections); (3) social support (eg, companionship, encouragement, communication with friends and family); and (4) advocacy (eg, with providers and insurers).¹¹ If the patient’s illness progresses, a caregiver’s responsibilities often consume even more time, energy, and emotional resources. The patient may need help with walking, bathing, toileting, and self-feeding, just as hope for disease remission is fading.¹⁰

[I]n the desperate race for cancer cures, I also hope that doctors, politicians, and scientists will remember to look to the dark side of that moon—where the caregivers live—and find a way to ease their journey.¹

A family caregiver’s work can be a full-time occupation—an average estimate of 8.3 hours per day for 13.7 months, according to one U.S. study,¹² and of 66 hours per week during the patient’s last year of life, as documented in another study.¹³ Caregiving also is a high-risk occupation¹⁴ whose effects on the caregiver have been linked empirically to diminished quality of life, depression, impaired immunity, heart disease, and early death.^10,15–21 Many family caregivers also have to quit a paying job or take extended leave, which worsens the financial impact of a cancer diagnosis.^2,22 Lifestyle disruption and social isolation are common, as one family caregiver’s comment illustrates¹:

Jonathan now has a quality of life that can only be described as poor. And so, truthfully, is mine. The fact that he is incapable of leaving the house and enjoying a movie or a walk in the park means that I no longer can do these things, either. Like other well-spouse caretakers, I am a victim, too, of his illness.

The psychological burden may be even greater for family caregivers than for the patient, especially as the disease advances,¹⁰ and greater for female than for male caregivers.⁷ Stress is particularly heavy if caregivers feel ill prepared: a sense of low self-efficacy heightens the perceived burden, so it is important to develop self-confidence for the caregiving role.¹⁶

As patients with cancer benefit from advances in therapy and extended survival, treatment is shifting from inpatient to outpatient settings, and more daily caregiving now occurs in the home. In-home support may have bidirectional health effects: the patient’s health affects the family caregiver’s health and vice versa.²³ Nevertheless, family caregivers are often not seen as valuable human resources who themselves require support to give support.^8,11,23 With cancer and other serious diseases, support services must extend beyond the patient to his or her primary source of home assistance, if any. A 2016 report calls for a national strategy on family caregiving that advances the goal of achieving family-centered care.²⁴