Caregiver Burden #419

Background

Patients with serious illness often require help with activities of daily living, basic medical care, social needs, and patient advocacy. Most of that support comes from family, partners, or friends as “caregivers.” Despite their will and reserve, caregivers commonly experience burdens that clinicians often overlook. This Fast Fact highlights the clinician's responsibility to recognize caregiver burden and reviews evidence-based interventions to mitigate it.

Defining Caregiver Burden

Although no standard definition exists, a useful framework is to consider the extent to which caregiving has had an adverse effect on the emotional, social, financial, physical, and spiritual functioning of the caregiver. ¹ This emphasizes both the multidimensional toll of caregiving and the highly individualized experience. ² Each caregiver may have a different capacity for caregiving as well as threshold for feeling “burdened.” Common stressors include but are not limited to:

Practical assistance: transportation to appointments, meal preparation, laundry, and home care.

Epidemiology and Impact

Unpaid caregivers provide the vast majority of home care in the United States. ³ Many are female who work in addition to caring for the person with serious illness. ³ Caregiving is often a full-time occupation—an average estimate of 8 hours of caregiving per day for 14 months ⁴ : 66 hours per week during the patient's last year of life. ⁵ Too often, caregivers are poorly prepared for the demanding, yet vital role. Distress can come in many forms including fears and misconceptions about medication administration and guilt if the patient suffers an adverse event in the home. This psychological burden can be passed on to the patient, increasing his or her risk of anxiety. ⁶ 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. ³ Caregiving has been linked to diminished quality of life, financial distress, and even mortality.^7–9 Their depression risk may be even greater than patients with serious illness.^10,11

Risk Factors

For caregiver burden include female gender, low educational attainment, residing with the care recipient, history of depression, social isolation, financial distress, higher number of hours spent caregiving, and lack of choice in being a caregiver.^11,12 Caregivers may also be at risk when care needs are continuous and indefinite, and particularly during care transitions. ¹³ The need for medically skilled tasks such as changing catheter bags, providing wound care, or overseeing complex medication management may also place caregivers at risk for burden as well. ¹¹

The Caregiver as Partner and Patient

The quality of caregiving—and thus the caregiver's health and well-being—is critical to maintain the patient's health and to enable the recipient to remain at home.^14,15 Beyond just attending to the needs of the seriously ill patient, clinicians should explore the caregiver's sense of well-being, their confidence to provide care, and their need for additional support. This is especially important during care transitions (e.g., recent discharge from the hospital and transition to hospice care). The Family Caregiver Alliance has developed a helpful toolkit for caregiving (www.caregiver.org). Suggested language to initiate conversations with a caregiver includes:

Recommendations

Research has identified several interventions that reduce caregiver burden and are associated with improvements in mood, coping, and self-efficacy. These include caregiving skills training, psychosocial educational, cognitive behavioral therapy, and cognitive reframing.^16–19 These benefits can get passed on to the patient through improved physical and mental health. ¹⁶ Other practical suggestions are as follows: