November is National Family Caregiver Month, a reminder to acknowledge and express appreciation for the caregivers in our lives. While the physical and emotional tolls of prolonged caregiving have been acknowledged, the financial impact it has on families is often overlooked, especially for caregivers supporting loved ones with chronic progressive conditions like chronic kidney disease (CKD). Learn about the financial challenges of long-term caregiving, available government resources, and ways that people living with chronic conditions can partner with their caregivers for better mutual outcomes.*

Financial Challenges and Stressors

Many caregivers find themselves juggling work responsibilities with caregiving duties, leading to tough choices that affect their financial stability. Studies show that caregivers are more likely to experience:

• Lost wages and career stagnation. Caregivers often miss out on promotions or opportunities for professional development due to reduced availability. Those who reduce work hours or take leave may lose income and, in some cases, even benefits like health insurance or retirement contributions.
• Unpaid leave or job loss. For caregivers needing significant time to manage their loved one’s health, unpaid leave or job loss becomes a reality. Some employers offer limited leave under the Family and Medical Leave Act (FMLA), but it’s typically unpaid, which isn’t feasible for everyone.
• Out-of-pocket expenses. Beyond lost wages, caregivers often bear extra costs for healthcare needs, medical equipment, specialized transportation, and home modifications that aren’t covered by insurance. 

This financial toll doesn’t just affect the caregiver’s present circumstances but can have lasting impacts on retirement savings, health, and overall financial well-being.

Government and Community Support for Family Caregivers

Recognizing the financial strain of family caregiving, several governmental programs and community resources are available to provide financial relief and support.

• Family and Medical Leave Act (FMLA). The FMLA allows eligible employees to take up to 12 weeks of unpaid leave per year to care for a seriously ill family member. While FMLA provides job protection, it doesn’t include wage replacement. However, some states have introduced paid family leave programs, which offer paid leave for family caregiving (such as CA, NJ, RI, NY, and WA).
• Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). If a loved one qualifies for SSDI or SSI, caregivers might be eligible for financial assistance to offset some caregiving costs. 
• Veterans Aid and Attendance Benefit. For caregivers of veterans, the Department of Veterans Affairs (VA) provides financial assistance through the Aid and Attendance benefit, which offers a monthly payment to qualified veterans or their spouses to cover caregiving expenses. Veterans may also qualify for VA Caregiver Support Program resources, which can provide financial assistance and respite care.
• Medicaid Home and Community-Based Services (HCBS) Waivers. Many states offer Medicaid waivers that allow low-income individuals to receive care at home instead of in a nursing facility. Some HCBS waivers provide compensation to family members acting as caregivers. Requirements and availability vary by state, so check with your local Medicaid office.
• Tax Deductions and Credits. Family caregivers may be eligible for tax deductions or credits, such as the Dependent Care Credit or Medical Expense Deductions, for certain caregiving-related expenses. These benefits can help offset out-of-pocket costs associated with caregiving. Be sure to keep records of all caregiving expenses.
• Community and Non-Profit Resources. Many non-profit organizations provide grants, stipends, or other financial assistance for family caregivers. For example, the National Family Caregiver Support Program (NFCSP) offers resources and funding for family caregivers. Local Area Agencies on Aging (AAAs) often administer these funds and can connect caregivers to additional financial support options within their communities.

Building Financial Resilience Through Collaboration

In addition to seeking out financial supports, caregivers and care receivers can work together to reduce the overall financial strain of caregiving. Here are a few strategies that may help:

• Explore cost-saving options together. Caregivers and patients can research cost-effective alternatives, like generic medications or community health programs. Many states and non-profits offer free or reduced-cost health services and transportation options for those with chronic illnesses.
• Plan for future expenses. Open discussions about potential financial needs for future treatments, equipment, or home modifications can help caregivers and patients plan and budget effectively. This proactive approach allows both parties to adjust their expectations and make informed financial decisions as the condition progresses.
• Encourage employment flexibility. Patients can encourage caregivers to explore remote work or flexible schedule options with their employers. This can help caregivers remain in the workforce, even part-time, allowing them to maintain income and benefits.

When caregivers and patients work together, openly discussing financial needs and exploring support options, they create a pathway toward resilience. Caregiving is a shared journey, and by addressing its financial challenges together, caregivers and patients can both find empowerment and stability despite the hardships that come with long-term care.

*Garcia Sanchez, J. J., Elsayed, H. M., Esposito, C., Rangaswami, J., et al. (2023). The impact of chronic kidney disease and dialysis on caregivers’ financial status and work productivity: Results from a multinational survey [Infographic]. https://www.ispor.org/docs/default-source/euro2023/isporeurope23garciasanchezpcr153poster129774-pdf.pdf?sfvrsn=e0c18bc4_0