Developed by The Recognize, Assist, Include, Support, and Engage (RAISE) Act Family Caregiving Advisory Council & The Advisory Council to Support Grandparents Raising Grandchildren (SGRG)
“The goal is always to provide support that meets the needs of the individual receiving it—as defined by that person—and to allow the individual receiving care to maintain autonomy, independence, and quality of life…Ensuring family caregivers have the resources they need to continue to support older adults and disabled people in the community is critical to containing the rising costs of health care.”
Family caregivers are individuals of all ages and abilities who provide care for a family member or someone with whom they have a significant relationship. Individuals who receive care often have a chronic condition or disability, including an intellectual and/or developmental disability (IDD). Family caregivers provide these individuals with a wide range of assistance such as medical care, personal support, transportation, and advocacy – often without formal training, financial compensation, or recognition.
Family caregivers provide the majority of long-term care in the United States, enabling millions of individuals to continue living in their communities rather than in institutional arrangements. Without family caregivers, millions of adults needing care would have no other option but to enter a nursing home or institution. Institutionalization is highly associated with poorer health outcomes, well-being, and quality of life. As a result, the widely recognized care crisis in the United States would be exacerbated without family caregivers, and our already overwhelmed healthcare and social services systems would collapse. Therefore, it is important to recognize the invaluable contributions of family caregivers and ensure that they have the necessary supports to effectively continue to be the backbone of long-term care in the US.
Despite having immense value to society, family caregivers often find themselves at the intersection of fragmented health and social services systems and unaccommodating workplace policies. These gaps force many family caregivers to sacrifice their own physical, emotional, and financial well-being. For example, most family caregivers step into a caregiving role without receiving adequate training to provide care safely and comfortably, which can lead to physical and emotional strains. Research also shows that family caregivers face higher rates of loneliness, stress, depression, and mortality than non-caregivers. Furthermore, inflexible work schedules, limited remote work options, and inadequate paid leave policies make it difficult for family caregivers to balance employment with caregiving responsibilities, which can contribute to poorer mental health outcomes.
As a result of the inadequate workplace policies, family caregivers also collectively forgo an estimated $522 billion in wages each year and employers collectively pass up approximately $33 billion annually through a loss of retention, productivity, and acquired talent. At the same time, healthcare and social services systems lack sufficient resources to provide adequate long-term care, leaving families to fill the gaps and incur out-of-pocket costs — in addition to their foregone wages — for caregiving-related essentials, like meals, transportation, medical supplies, and home modifications. Juggling employment, caregiving without adequate training, and financial strains from out-of-pocket costs ultimately diminish the quality of life among many family caregivers. With no acceptable alternative to family caregiving, this report marks family caregiving as an urgent public health issue among families and society, marked by significant physical, emotional, and financial strains.
As of 2017, the economic value of unpaid family caregiving to older adults was estimated at $470 billion annually.1 This figure does not include the economic value of unpaid family caregiving to other populations, including individuals with IDD. However, this figure alone highlights an immense cost-savings opportunity: if Medicaid and other state and federal programs invest more in supporting family caregivers through financial assistance, training, and respite care, they can achieve reduced costly hospitalizations, delayed institutional care, and improved health outcomes for families.
The Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregiving Act is a federal law that was passed in 2017 and aims to address challenges faced by family caregivers by improving awareness, services, financial assistance, and data collection to better support family caregivers and those for whom they provide care. This act directed the creation of the National Strategy to Support Family Caregivers (Strategy).
The Strategy identifies five key goals to better support family caregivers:
- Goal 1: Increase awareness of and outreach to family caregivers
- Goal 2: Advance partnerships and engagement with family caregivers
- Goal 3: Strengthen services and supports for family caregivers
- Goal 4: Ensure financial and workplace security for family caregivers
- Goal 5: Expand data, research, and evidence-based practices to support family caregivers
The Strategy calls for a wide spectrum of stakeholders, including policymakers, state and federal agencies, healthcare systems, community-based providers, and researchers, to align their work with the goals listed in the Strategy. These reports offer actionable recommendations so that each of these stakeholders can increase support for family caregivers, work to improve health outcomes of family caregivers and those for whom they provide care, and address the urgent public health issue identified in these reports.