The Hidden Costs of Caregiving

By Ben Williams, IVI 2023 Summer Intern and Student at Davidson College

Over the summer, my parents helped my grandparents move into an assisted living facility. It was an intense process that involved taking time off from work, packing up my grandparents’ home of 15 years, navigating their finances, and worrying about their future. Throughout the experience, I witnessed firsthand the stress and exhaustion that comes with being a caregiver for someone with a chronic illness. It gave me a new understanding of the daily challenges these caregivers face in their work.

There are approximately 38.0 million caregivers providing care to adults with a disability or illness in the U.S. – nearly 1 out of every 5 Americans over 18.^[1] Twenty-seven percent, or nearly a third, of adult caregivers are helping someone with a mental illness.^[2] Although several state-funded programs pay caregivers to look after relatives, many individuals care for their families for free. Paid and unpaid caregivers represent one of the most essential occupations in our healthcare system. However, little has been done to recognize the economic and health burdens placed on caregivers in the United States.

According to a report by AARP, the estimated economic value of family caregivers’ unpaid contributions was approximately $600 billion in 2021, following a 25-year trend of increasing economic value.^[3] Valuing the Invaluable 2023 Update: Strengthening Supports for Family Caregivers. AARP. When they are paid, caregivers, on average, are only paid $29,000 per year, a salary well below the national average.^[4] With projects like the Economic Impacts Framework, IVI is working with its partners to improve how researchers measure and account for the full range of economic impacts on caregivers. These economic impacts can include direct medical costs, non-clinical healthcare costs, caregiver and family impacts, social impacts, ability to work, and other education and job impacts.

In addition to the economic burden, the caregiver burden can manifest itself in several different ways, such as:

• Higher rates of depressive symptoms and mental health problems
• Caregiver stress culminating in compromised physical health
• Lack of time for self-care leading to a depletion of energy
• Emotionally draining days impacting relationships outside of work
• Social strains caused by multiple responsibility conflict

Throughout the Economic Impacts project, it was stressed repeatedly that family caregiver costs are part of the economic and health costs of a severe health condition. When people face a serious health condition, no matter the costs, it all comes from one wallet.

More needs to be done to address the health concerns and economic costs for caregivers in the United States. These individuals are putting the lives and health of others before their own, and a lack of representation in both policy and research is hurting them. IVI is working with caregivers to make sure their voice is heard and be included in federal policies supported by our healthcare system.

Resources

• National Family Caregivers Month. Mental Health America. Accessed August 10, 2023. https://mhanational.org/national-family-caregivers-month
• Reinhard SC, Caldera S, Houser A, Choula RB. Valuing the Invaluable 2023 Update: Strengthening Supports for Family Caregivers. AARP. doi:10.26419/ppi.00082.006
• Caregiver Burden – An overview | ScienceDirect Topics. Accessed August 11, 2023. https://www.sciencedirect.com/topics/medicine-and-dentistry/caregiver-burden
• Caregiver Salary in USA – Average Salary. Talent.com. Accessed August 7, 2023. https://www.talent.com/salary

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About IVI
The Innovation and Value Initiative (IVI) is a 501(c)(3) tax-exempt, non-profit research organization dedicated to advancing the science and improving the practice of health technology assessment through development of novel methods and the creation and application of enhanced health technology assessment models to support local decision-making needs in healthcare.

Contact: Smita Sanwardeker
Phone: 267.909.7661
E-Mail: smita.sanwardeker@thevalueinitiative.org