For more than 20 years, family caregivers have been supported through the National Family Caregiver Support Program (NFCSP) of the Older Americans Act (Title IIIE). The NFCSP provides information to caregivers about available services; assistance in gaining access to services; counseling, support groups and caregiver training; respite care; and supplemental services.
The recent Process and Outcome Evaluations of the NFCSP demonstrated the program’s importance as a catalyst for states to better support the needs of family caregivers. More importantly, since 2011, 77 to 82 percent of NFCSP caregivers report services enabled them to provide care for longer than otherwise would have been possible.
The RAISE (Recognize, Assist, Include, Support, and Engage) Family Caregivers Act of 2017 directs the development of the National Family Caregiving Strategy (the Strategy) informed by a Family Caregiving Advisory Council (the Council). When complete, the Strategy will provide a roadmap for federal, state, community, health and long-term services and supports programs to more proactively and effectively identify and support family caregivers across the lifespan. The input of family caregivers will be a key component of Strategy development.
Caregiver Recommendations for Program Improvement
The 2019 National Survey of Older Americans Act Participants (NSOAAP) asked nearly 2,000 caregivers “What recommendations do you have for improving the service?” Thematic analysis of the responses revealed six major recommendation themes: Additional Resources; Staffing; Communication; Care Coordination; Quality of Services and Eligibility.
Themes similar to the NSOAAP results emerged in responses to the Council’s 2020 Request for Information (RFI), which was released in 2021. In their own words: Family caregiver priorities and recommendations: Results from a Request for Information highlights caregiver priorities and recommendations.
‘Caregiver support groups that provide social outlets and emotional supports are critical.’
The RFI took a broad approach, asking caregivers and stakeholders about general caregiving needs, concerns and recommendations. Of the 1,600 respondents to the RFI, 75 percent were family caregivers. Strengthening respite, caregiver support groups/social and emotional supports, awareness/education services, quality, availability and cost of services were common themes seen across both information collection activities.
Respite. Caregivers expressed the need for time off to address their own needs and as relief from ongoing caregiving demands. Responses suggested that currently available caregiver respite services were not enough to meet their needs and more time off would be useful.
Social and emotional supports (caregiver support groups). Because caregiving impacts an individual’s stress levels and mental health, caregiver support groups that provide social outlets and emotional supports are critical.
Awareness/education of services. Caregivers reported being unaware of available resources and services. Some caregivers reported challenges in navigating available services, even when they thought they had found appropriate services.
Quality of (paid) caregiver services. Caregivers reported a need to ensure that the direct care workers/paid caregivers brought into the home are appropriately trained and safe. There were calls for more training of paid caregivers and better screening of employees. Additionally, caregivers expressed that they wanted more access to reliable help, especially on holidays and weekends. Responses indicated that the available direct care workers and services do not always match caregivers’ and care recipients’ needs.
Availability of services. Caregivers reported that the time allocated for services was not adequate to meet the needs of caregivers and care recipients. Respondents need and want more service availability and more service hours in areas such as adult day programs, mental health, transportation, support group and respite.
Cost of services. A consistent concern was the cost of care and services. Even for the NFCSP, which cannot deny services to participants if they are unable to pay, there were several responses about difficulties paying for needed services and respondents indicating a need for financial assistance or reduced cost services.
Other key themes from the recommendations of NSOAAP respondents drew attention to issues of communication, eligibility, supplies and social engagement. Enhancing communication for caregivers around scheduling, eligibility and availability of services may be a key first step for providers wishing to strengthen NFCSP implementation.
Ideas for Next Steps
Taken together, the recommendations from the NSOAAP and the themes in the RFI Report offer numerous opportunities for better supporting the needs of family caregivers and care recipients, including:
- Developing a clearer understanding of family caregivers’ needs, experiences and preferences in accessing and using supports and services specific to their needs. By collecting more detailed and nuanced information about the caregiving experience, a clearer understanding of family caregivers can emerge and offer insights for better service planning and delivery.
- Gaining a better understanding of respite needs and use by asking current and potential respite users about the barriers (e.g., knowing the program exists, getting set up in the program) and successes (e.g., delaying placement of a care recipient, expanding use of other services) to using respite.
- Supporting growth in the range of specific services for family caregivers by analyzing future NSOAAP and RFI responses and identifying trends in types of programs and services used by caregivers. These data can inform the development of future services and supports.
- Improving access to information about available supports and services for caregivers by learning from the success of other programs for older adults and caregivers (e.g., Senior Medicare Patrol, Medicare open enrollment) regarding information sharing and adapting and testing messaging with partners across the aging and disability services networks.
- Improving the matching of family caregiver and care recipient needs with the most appropriate forms of support (e.g., adult/family day services, mental health services, transportation service), by developing guidance, technical assistance and support for family-centered assessment tools and methodologies.
- Strengthening the direct care workforce by studying and understanding the underpinnings of what defines quality. Such a study could lead to better supports for family caregivers and care recipients by identifying opportunities to improve training, compensation and retention of direct care providers.
We are at a pivotal point in realizing a stronger national approach that addresses and supports the needs of caregiving families. Both the NSOAAP and RAISE Act provide an unprecedented opportunity to achieve heightened awareness, inclusion, support and engagement of family caregivers by public and private sectors. To do that effectively, we need to seize every opportunity to listen to family caregivers, to hear their concerns, needs and successes, and then set to work strengthening existing supports to meet them where they are. The ideas presented here are but a few of the many opportunities that exist to make a difference.
Greg Link, MA, is director, Office of Supportive and Caregivers Services, Administration on Aging, Administration for Community Living in Washington, DC. Heather L. Menne, PhD, is a senior health policy researcher at RTI International in Washington, DC. Kristen Robinson, Emily Costilow, Natalie Mulmule, and Angela Gasdaska are thanked for their contributions to the analyses reported.
