Identifying and Engaging Family Caregivers

In Part 2 of a four-part series, we discuss how the Administration for Community Living’s National Strategy to Support Family Caregivers aims to identify and engage family caregivers. Check out Part 1 of the series on dementia caregivers, Part 3 on direct-care workers, and Part 4 on the stated needs of family caregivers.

As of 2020, approximately 53 million adults in the United States provided unpaid caregiving support to family and friends. The number of family caregivers in the United States is expected to increase as the global older adult population is estimated to double by 2050. Despite the large and growing number of unpaid family caregivers, social, emotional, and financial support resources for this population, such as respite care or support groups, remain underutilized. For example, nearly half of family caregivers older than age 45 report not knowing where or how to obtain professional or financial assistance.

With the goal of supporting, recognizing, and engaging family caregivers, the U.S. Department of Health and Human Services, through its Administration for Community Living (ACL), recently presented the 2022 National Strategy to Support Family Caregivers (NSSFC). The timely introduction of the NSSFC is part of a considerable repertoire of caregiver support work funded by the ACL, including the RTI International-based National Alzheimer’s and Dementia Resource Center, which produces and disseminates resources and recommendations for family caregivers and health care providers. 

The objective of the NSSFC is to offer providers and family caregivers with recommendations for strengthening and maintaining caregiver health, well-being, and financial security. The NSSFC defines family caregivers as unpaid adults caring for an aging individual, grandparents or other non-parent relatives caring for a child younger than age 18, or people caring for an adult with a disability.

The NSSFC recommendations have the potential to help millions of caregivers by enhancing their own wellness and that of the individuals in their care. It aims to address the unmet needs of this hardworking and dedicated demographic through five distinct goals to support family caregivers:

• Increase awareness and outreach.
• Build partnerships and engagement with family caregivers.
• Strengthen services and supports.
• Ensure financial and workplace security.
• Expand data, research, and evidence-based practices.

Connecting the NSSFC recommendations with caregivers requires caregiver engagement and awareness of the strategy. Therefore, a key part of the NSSFC emphasizes the importance of family caregiver self-identification as a prerequisite to accessing the NSSFC recommendations.

Increasing awareness of who is a family caregiver is one goal of the NSSFC. Family caregivers, particularly those caring for a child, may not recognize their role or identify as a caregiver. Furthermore, family caregivers may see their role as an obligation that they are expected to fulfill. This is one barrier to receiving support, as some family caregivers may not realize that health care and community-based support services for caregivers are available to them. The NSSFC addresses these misconceptions through several recommendations that encourage providers and policymakers to identify and engage family caregivers directly in the care planning process:

• Equip health care providers with intake forms that adopt inclusive language to allow family caregivers to self-identify.
• Train health care providers to identify family caregivers and integrate them in the patient’s care.
• Develop policies to guide professional organizations and society to acknowledge family caregivers and their roles across all patient populations.
• Provide reimbursements from insurance to health care providers for assessing the needs of family caregivers, such as their health-related social needs (e.g., housing and food security).

Federal and state agencies can promote evaluating and incorporating the needs of the family caregiver, as well as the care recipient, into care plans. For example, the NSSFC proposes that states can and should increase the use of family caregiver assessments by

• requiring providers to use evidence-supported caregiver assessment protocols, and
• ensuring that delivery systems and providers look critically at existing assessment tools to make sure they are trauma-informed and culturally competent.

Family caregivers can experience social, emotional, physical, and financial health impacts that need to be addressed. One survey study found that 45% of family caregivers had unmet needs in mental health care, and 85% had unmet needs in community resources and education. Research suggests that integrating the needs of the family caregiver within the goals for the care recipient can reduce feelings of loneliness, depression, and anxiety; increase long-term health benefits; and increase quality of life for both parties.

The NSSFC also proposes strategies to address equity and inclusion. For example, the NSSFC encourages states to use culturally and socially diverse measures, such as the Long-Term Care Equality Index, when conducting family caregiver assessments. This is incredibly important, especially for family caregivers or care recipients who are part of the LGBTQIA+ community. 

Unlike other older adults who tend to rely on children or extended family, the majority of caregivers for LGBTQIA+ older adults are spouses, partners, or friends. LGBTQIA+ older adults are more likely to report having a “chosen” family consisting of friends, rather than their family of origin. This nontraditional caregiver and care recipient pairing should receive assessments and care tailored to their needs, such as education on inclusive residential and senior housing or programming.

The NSSFC includes more than 150 suggested actions for states, communities, and public and private stakeholders that will holistically support the expected increase in family caregivers. Although additional funding is not included with the NSSFC, the suggested actions were designed to complement 345 commitments submitted by federal agencies and departments to support one or more of the NSSFC goals. The NSSFC guidelines serve as a foundation for states and the federal government to enhance existing caregiver supports as the aging population expands over the next decade.

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