The Common Sense Guide to Improving Palliative Care > Caring for Caregivers > 6.1 Chapter Overview
Family or volunteer caregivers make it possible to meet the needs of the long-term, medically complex patient. Approximately 25 million Americans provide care for a relative or friend who is unable to manage alone because of illness, disability, or frailty. Most of these family caregivers are middle-aged or older, and caregiving increases their risk for ill health and financial problems. Family members often assume the caregiving role under sudden and extreme circumstances, and caregivers frequently have little understanding about the patient's disease or how to provide care. Informal family caregiving involves a variety of direct care activities (i.e, activities carried out to assist the patient, such as bathing, eating, toileting, dressing, grooming, and emotional support) and indirect care (such as medication management, transportation, advocacy, supervision and management of paid care workers, coordination among healthcare providers, and assistance with medical bills and other finances). In addition, families provide complex care: they may manage symptoms, monitor clinical changes, administer medications, and operate high-technology equipment (i.e., infusion pumps or IVs).
While providing care for a disabled, frail, or seriously ill loved one can be rewarding, it also consumes time, money, and energy. Caregivers are at an increased risk for mental health problems, physical health problems, and death. To fulfill their demanding role, caregivers need information about disease progression, training in patient care, support for medical decision-making, financial help, respite care, and emotional and spiritual support. However, these needs have often been ignored (or misunderstood) by those in the healthcare system.
Although many factors influence how family caregivers respond to their role, managing advanced illness and the end of life is particularly stressful. Caregivers express fears of the future and often suffer depression and anxiety, deterioration of relationships, concern about the suffering of their loved one, and worries about how caregiving will affect their own health (e.g., fatigue, sleep deprivation, social life disruption, financial concerns, etc.). Our experience has shown that good quality improvement (QI) teams tailor their interventions to the needs of the caregivers and patients according to the care setting, the patient's disease stage, and the caregiver's situation. A few organizations have applied the QI model to support their caregivers. Some interventions reduce readmission rates while at the same time assisting caregivers. Others simply improve the caregivers' quality of life.
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