Validating a model of chronic illness and family caregiving

CGs can undermine older adults’ decision making if the CG inappropriately speaks for, interrupts, or criticizes the older adult during health care or social service encounters.

Providers can likewise undermine decision making if they inappropriately direct their advice to the CG instead of the older adult—or when providers exclude CGs whose involvement is desired by the older adult.

When family caregivers accompany an older adult, as they often do, they help provide or supplement this information particularly if the patient is forgetful or has dementia (Bookman and Harrington, 2007).

The family caregiver may encourage the older person to ask questions and actively engage the provider, thus increasing his or her involvement in his or her own health TABLE 6-1 Barriers to Optimal Caregiver Involvement in Older Adults’ Care When caregivers (CGs) prompt older adults to ask questions and tell a physician, nurse, social worker, or other provider their concerns, the provider may take more time to help resolve any confusion and, thus, foster decisions that best reflect the care recipient’s values and priorities.

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It is well established that health care in the United States is often of low value, poor quality, or results in harm (IOM, 2000, 2001, 2012b). These consequences include impeding information sharing between family caregivers and providers of care (Crotty et al., 2015; Petronio et al., 2004), tense and adversarial health system interactions, and expensive and unwanted care that is inconsistent with older adults’ preferences (Abadir et al., 2011; Levine and Zuckerman, 1999; Srivastava, 2010). One national survey found that only one in three family caregivers (32 percent) reported that a doctor, nurse, or social worker had ever asked them about what was needed to care for their relative. Early community-based utilization and its effects on institutionalization in dementia caregiving. CGs often play an integral role in arranging medical visits, coordinating home- and community-based services, facilitating older adults’ transitions between settings of care, and transmitting critical health and other information across settings of care. Developing effective criminal background checks and other screening policies for home care workers. When CGs do not have access to up-to-date, understandable, and comprehensive information about care recipients’ health and treatments, they cannot coordinate older adults’ care and services effectively. In order to fulfill the numerous roles that they play (as Chapter 3 describes), family caregivers must interact with a wide range of providers and navigate within a variety of systems.

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