The State of Caregiving 2023

By Gretchen Barry, Director of Marketing Strategy

As someone who is in the midst of a long-distance caregiver situation, there was one number in particular that jumped out at me from the AARP report “Valuing the Invaluable: 2023 Update,” which you can find here. The number that troubles me is 36 billion because that’s the estimated number of hours of care that family caregivers performed in 2021. That is a staggering data point. 

AARP Public Policy Institute has provided an updated analysis of the current state of family caregiving in the United States, highlighting the challenges and opportunities for supporting this vital workforce. Family caregivers are individuals who provide unpaid care to a relative, friend, or neighbor who needs assistance with daily activities or health care. They are essential for the well-being of millions of older adults and people with disabilities, as well as for the sustainability of the long-term services and supports (LTSS) system.

So let’s recap the most important numbers: According to the report, there were about 38 million family caregivers in 2021, providing an estimated 36 billion hours of care worth $600 billion. The value of the care is based on an average hourly wage of $16.59 for home health aides, but it does not capture the full economic and social costs and benefits of caregiving.

More important than the above data, family caregivers face financial risks, such as lost income, reduced career opportunities, and lower retirement savings and benefits. They also experience physical, emotional, and mental health impacts, such as stress, depression, and chronic conditions.

The report identifies several prominent issues that affect family caregivers, such as:

• The sandwich generation: These are caregivers who also have children or grandchildren living in their household. They represent about 30% of family caregivers and tend to be younger and more diverse than other caregivers. They face multiple competing demands and responsibilities that affect their work-life balance and well-being.
• Working caregivers: These are caregivers who are employed either full-time or part-time. They account for 61% of family caregivers and often struggle to balance their work and caregiving obligations. They may need flexible work arrangements, paid leave policies, and other workplace supports to manage their dual roles.
• Direct care workforce shortage: These are paid workers who provide personal care or home health services to older adults and people with disabilities. They are in high demand but face low wages, poor working conditions, and high turnover rates. They are essential partners for family caregivers, who often rely on them for respite and assistance.
• Diverse caregivers: These are caregivers who belong to racial and ethnic minority groups, LGBTQ+ communities, rural areas, or other underserved populations. They represent a growing share of family caregivers but face unique challenges and barriers to accessing services and supports. They may need culturally competent and linguistically appropriate interventions that address their specific needs and preferences.

The report also reviews recent developments and promising practices at the federal and state levels that aim to strengthen support for family caregivers. Some examples are:

• The RAISE Family Caregivers Act: This is a federal law that was enacted in 2018 to create a national strategy to recognize and support family caregivers. It established a Family Caregiving Advisory Council that includes representatives from various sectors and stakeholders. The council issued its first report in 2020 with recommendations for improving the coordination and delivery of services and supports for family caregivers.
• The CARE Act: This is a state-level model legislation that was developed by AARP to help family caregivers when their loved ones are hospitalized and discharged. It requires hospitals to identify, record, inform, and instruct family caregivers about the care plan and tasks they need to perform at home. As of 2020, 43 states and territories have enacted some version of the CARE Act.
• The Lifespan Respite Care Program: This is a federal grant program that was authorized in 2006 to help states develop coordinated systems of accessible, affordable, and quality respite care services for family caregivers. Respite care is a temporary break from caregiving that can reduce stress and improve the well-being of both caregivers and care recipients. As of 2020, 37 states have received funding from this program.
• The Paid Family Leave Program: This is a state-level program that provides partial wage replacement for workers who take time off from work to care for a seriously ill family member or bond with a new child. It can help working caregivers maintain their income and job security while fulfilling their caregiving responsibilities. As of 2020, nine states and the District of Columbia have implemented some form of paid family leave.

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The report concludes with specific recommendations for policymakers, employers, and healthcare providers. Some of the key recommendations include:

• Expand access to affordable and high-quality long-term services and supports (LTSS) that meet the needs and preferences of older adults and their family caregivers. This includes increasing funding for home- and community-based services (HCBS), implementing LTSS insurance programs, and promoting consumer-directed care models.
• Strengthen workplace protections and supports for working caregivers, such as paid family and medical leave, flexible work arrangements, caregiver discrimination protections, and tax credits.
• Enhance training and education for family caregivers, especially on how to perform complex medical and nursing tasks at home. This includes providing standardized assessments, care plans, instructions, and demonstrations by health care professionals, as well as offering online and in-person training programs and resources.
• Improve coordination and communication between health care providers and family caregivers, such as by recognizing them as members of the care team, involving them in care transitions and discharge planning, and sharing relevant health information with them.
• Increase recognition and representation of family caregivers in popular media, such as by featuring diverse stories of caregiving experiences, challenges, and solutions in films, television shows, podcasts, books, and social media platforms.

These recommendations aim to improve the awareness and quality of life of both older adults and their family caregivers. By valuing the invaluable contributions of family caregivers, we can create a more compassionate and sustainable LTSS system for everyone.

If you or someone you know is facing a stressful caregiver situation, we encourage you to reach out to TCare, our Community Partner focused on supporting caregivers around the nation. You can email them at buddyins@tcare.ai.