Driving change: Advancing policies to address the escalating complexities and costs of family care

Abstract Approximately 41 million family caregivers in the United States provide an estimated 34 billion hours of unpaid care to an adult with limitations in daily activities. AARP continues to support family caregivers and those for whom they care in a number of ways. This chapter describes the findings of the seminal Home Alone report. This research revealed that family caregivers are called on to perform complex medical/nursing tasks in addition to assisting with ADLs and IADLs and providing care management. Family caregivers perform these complex medical/nursing talks with limited instruction or support from health care providers. In response to the report, AARP developed model state legislation—the CARE (Caregiver Advise, Record, Enable) Act. AARP also created the Home Alone Alliance to help bridge the gap between what family caregivers are expected to do and the limited instruction they receive. The Home Alone Alliance has developed how-to videos and resources that are available on the AARP website. Because most family caregivers work outside the home in addition to caring for ill family members, AARP is encouraging employers to offer workplace flexibility options, such as paid family leave and allowing workers to use sick leave to care for ill family members. This chapter details state efforts in these areas as well as state programs to relieve the financial strain of caregiving through a tax credit for family caregivers as well as other mechanisms. On the federal side, AARP is supporting implementation of the 2018 RAISE (Recognize, Assist, Include, Support and Engage) Family Caregivers Act. As strategy is developed, AARP will continue to encourage coordination among federal, state, and local partners and stakeholders.