Addressing the Needs of "Invisible" Family Caregivers in Response to the National Strategy to Support Family Caregivers

Background and Purpose: There are nearly 53 million unpaid family caregivers in the United States. Most of these caregivers are women taking care of older parents. These caregivers provide the equivalent of ~$470 billion worth of services each year. Despite their impact, family caregivers remain understudied and overlooked in the development of national policies. In 2022, the U.S. government established the National Strategy to Support Family Caregivers to chart a course of action at the federal, state, and community levels. This study was developed to better understand how the national strategy was viewed by state and community organizations.

Methods: This study performed a secondary analysis of administrative data including meeting notes and transcripts of six meetings that lasted over ten hours. Approximately 55 individuals participated in the meetings that were recorded representing 48 states and 4 territories, as well as five community organizations. Participants included Aging Directors, state leads for Caregiver programs, and non-profit directors. Meeting notes were coded and analyzed. These were developed and confirmed with an independent coder. Themes were generated based upon this analysis.

Results: Results from the study documented that many caregivers did not self-identify as caregivers and subsequently did not seek out programs available to support them. The study also revealed that family caregivers are not a monolith and that there is great variability based on rural communities, urban communities, LGBTQI+ communities, and various ethnic and racial communities. The nuances of experiences are incredibly important to document. Additionally, participants noted how complex and confusing programs could potentially be for caregivers and the need for robust educational campaigns.

Conclusions and Implications: This study confirmed that family caregivers are an important part of society that deserves additional attention from federal and state policymakers. States and community organizations stressed how critical it is to better understand this population and their unique needs. Momentum has been built through the establishment of the National Strategy, yet more information is needed to better understand diverse family caregiver needs. Future studies should investigate the perspectives of diverse family caregivers so that programs and policies can be more responsive to their needs. This study represents the first time such a wide-spread array of perspectives were collected and analyzed.