Stepping Up to Address the Stated Needs of Family Caregivers

In the final installment of a four-part series, we discuss how the National Strategy to Support Family Caregivers addresses the stated needs of family caregivers. Check out Part 1 of the series on dementia caregivers, Part 2 on identifying and engaging family caregivers, and Part 3 on direct-care workers.

Caregiving can be a labor of love, but it can also put significant financial, emotional, and mental strains on caregivers. As a result, they often need support to continue providing needed care. According to a study by the National Alliance for Caregiving and AARP, approximately 34.2 million Americans provided unpaid care to an adult aged 50 or older in 2015. More than half of all caregivers in 2018 reported that they experienced a decline in their own health that compromised their ability to provide care. 

The Administration for Community Living (ACL) conducts an annual survey of participants in the National Family Caregiver Support Program (NFCSP)—the National Survey of Older Americans Act Participants (NSOAAP)—to learn about their need for supports and services. In 2020, RTI International analyzed more than 700 open-ended responses in the 2019 NSOAAP survey to identify major themes, and 63% were related to a need for additional resources. Findings from RTI’s work helped inform the development of ACL’s 2022 National Strategy to Support Family Caregivers (NSSFC).

About one-third of family caregivers who reported needing additional resources cited needing help with household tasks, such as grocery shopping, yard work, and transportation. Approximately 18% of respondents described significant financial needs, such as difficulty affording diapers or other incontinence supplies or food. Many respondents cited a need for more social support resources, including a desire for more respite and formal caregiving services. Caregivers who utilized professional caregivers wanted access to care overnight and on weekends and holidays. Additionally, some survey respondents reported needing more social engagement with other caregivers through support groups or coffee hours.

The NSOAAP survey is limited to caregivers who receive services through the NFCSP, but these themes are echoed by the broader caregiver population. This population faces significant challenges accessing needed services, supplies, financial support, and social and emotional support. The 2022 NSSFC was created in recognition of these substantial needs and is intended to align federal, state, local, and tribal efforts in support of caregivers and to build collaborations among these and other stakeholders.

Goal 3 of the NSSFC, which focuses on strengthening services and supports for family caregivers, addresses some of the needs identified by NSOAAP respondents. These include increasing access to home repair support, healthy food, and transportation. To improve access, the NSSFC recommends that states compile an inventory of services that can be distributed to family caregivers. It also recommends increasing state funding to No Wrong Door/Aging and Disability Resource systems, which support informed decision making for caregivers. States could also increase access to these services by creating community ambassador programs that would conduct outreach to family caregivers in underserved communities to share resources and assess their specific needs.  

Many survey respondents also reported not knowing where to start looking for help when they needed it. The NSFFC encourages states to collaborate with local organizations to develop support networks and facilitate resource sharing for caregivers. States and communities can work together to develop a safety net of resources for caregivers. Collaborating with local organizations will ensure that caregivers have access to resources that are more linguistically and culturally competent.

The NSFFC also recommends that states take a “whole-person” approach and address needs related to the social determinants of health for the caregiver. The survey respondents cited challenges meeting needs related to housing, food, and social engagement. The NSFFC encourages states to leverage existing programs, such as meal delivery, to provide wellness checks that can connect community members to other resources. States can also take steps to ensure that caregivers have access to web-based information by participating in efforts to expand broadband availability. Additionally, states can work with health insurers to provide coverage for assistive technologies that can improve the quality of care that the caregiver can provide. Collaboration between states and local and community-based organizations can also promote the sharing of best practices.

The solutions proposed in the NSFFC aim to address not only the accessibility of supportive services, but also the larger systemic issues that can affect caregivers. To address the need for more formal caregiving services, the strategy encourages education and advocacy for direct-care workforce reform. To ensure a sufficient supply of professionals that support family caregivers, reform is needed in the direct-care workforce. Respite care, including help on the weekends, overnight, and on holidays, helps caregivers balance their responsibilities.

Connecting family caregivers with the supports that they need will go a long way in maintaining this essential network of care. Investing in efforts to address the social determinants of health that affect family caregivers will ultimately improve not only caregivers’ quality of life, but also the well-being of those in their care. The NSFFC provides a solid framework of next steps that states can take to addressing the needs of this very important population.

Learn more about RTI’s home and community-based services capabilities here.