On September 21, 2022, the advisory councils of the RAISE (Recognize, Assist, Include, Support, and Engage) Family Caregivers Act and the Supporting Grandparents Raising Grandchildren Act (SGRG) jointly published their 2022 National Strategy to Support Family Caregivers. Since the acts first became law in 2018, this strategy has been developing with input from its advisory councils, the public, stakeholders, academics, practitioners, philanthropy, consumers, and more. Consequently, it is comprehensive, sensitive, practical, inspirational, and should be required reading for all of us in the field of health and aging.
The National Strategy has four components: the introduction and description of five goals, outcomes, and measures of success; the identification of four overarching principles that must guide the implementation of the goals, and the descriptions of nearly 500 actions that the federal government and state and local entities can undertake to support family caregivers, including a table of legislative and policy actions. Importantly, the strategy lays a foundation for understanding the role of caregiving by defining terms and describing the process by which the advisory councils came to a consensus on the definitions of “family” “caregiving” and “family caregiver.”
Of particular note for those of us involved in serious illness care are the four cross-cutting issues or “first principles” that the advisory councils identified as fundamental to understanding the caregiver experience. They regard these principles as essential practices to be embedded in any actions to support caregivers. I list them verbatim here because they reflect some of C-TAC’s own core principles and bear repeating:
- Person- and family-centered approaches:
It is important that family caregivers themselves—not the needs of systems or
providers—remain the focal point of each encounter.
- Trauma and its impact:
The experience of trauma, in the lives of caregivers and the people they support—including decades-old traumas—has an impact on the caregiving journey in ways that must be proactively addressed with a comprehensive, holistic set of strategies that acknowledge trauma as a powerful, yet invisible influence in the lives of family caregivers, kin and grandparent caregivers, and the people they support.
- Diversity, equity, inclusion, and accessibility:
Caregivers who represent unserved and underserved and/or marginalized communities frequently experience greater physical, emotional, and financial challenges associated with caregiving.
- The direct care workforce:
Even though the Strategy focuses on family caregiving, the well-being of the nation’s 4.6 million professional caregivers (also known as direct care workers, direct service workforce, direct service providers, etc.) directly influences the ability of family caregivers to provide long-term support (PHI, 2018). Only through the development of a robust, well-trained, and well-paid direct care workforce can we ensure family caregivers and those they support have access to reliable, trusted, and affordable paid supports and assistance when and where they need it.
I encourage you to take a look at the 2022 National Strategy to Support Family Caregivers and its component documents. It is long, but easy-to-read and contains links to “learn more,” and has extensive appendices that include resources, acronyms, abbreviations, and citations. For a quick overview of the National Strategy, check out the infographic.
