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Caregiving is receiving increased attention as the world experiences demographic shifts that favor older adults. For many seniors, caregivers are vital to maintaining independence. Assessing and supporting caregivers is becoming essential for efforts to improve the quality of health care and patient experiences.
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Unfortunately, important and vital contributions of caregivers often go unrecognized and unsupported by health care teams and providers. Indeed, health care systems often do not have mechanisms for recognizing, addressing, and supporting caregiver needs. These gaps are most apparent in the situations that require intensive support over extended periods of time, such as for patients with dementia, heart failure, frailty, and chronic conditions.
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This chapter describes the sometimes surprising demographics about caregivers and the unexpected roles that they undertake. We provide an update on methods for assessing them and explore some of the supports available in health systems and communities. We suggest activities that will be useful in clinical environments and review the topic of patient privacy and the Health Insurance Portability and Accountability Act (HIPAA).
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First, it is important to consider terminology. When we think of caregiving, we often delineate between formal caregivers (ie, those who are usually trained and compensated for care, such as certified nurse assistants, physiotherapists, nurses, social workers) and informal caregivers (ie, those who are usually unpaid and untrained, such as family members, friends, or neighbors). This chapter is focused on informal caregivers.
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IMPORTANCE OF CAREGIVERS
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Caregivers assist with a vast array of tasks, including medication management, health system coordination, complex medical tasks such as wound care, and more. They often feel invisible and are frequently a shadow workforce, operating outside of usual professional practice and regulatory frameworks. Indeed, they frequently report inadequate support, strain, and low confidence in managing tasks. Caregivers have been shown to face risks to their health and well-being, such as increased rates of emotional distress, financial strain, depression, anxiety, and social isolation. It is hard work. Nonetheless, caregivers are partners in high-value care and are often involved in crucial decisions such as when to seek emergency care.
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Caregivers are increasingly important to health systems. As health systems prioritize value-based reimbursements, quality reporting, and a focus on what matters to patients, the engagement of caregivers will be vital. In the United States, the new Quality Payment programs of Medicare will measure quality in ways for which continuity of care will be important (eg, posthospitalization visits). Continuity of care may be directly related to the coordination of care that caregivers provide, such as transportation to a posthospitalization appointment.
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Despite high burdens, research has shown that 80% of caregivers report positive experiences and exhibit satisfaction with their efforts. Some sources of fulfillment come from providing regular care, supporting the wishes of the recipient, giving back to someone who cared for them, and continuing a family tradition. In reality, ...