By The National Alliance for Caregiving (NAC) and AARP
This research report by the National Alliance for Caregiving (NAC) and AARP describes the prevalence, work, and unmet needs of caregivers in the US based on cross-sectional data collected between August and October 2024. This overview of the report focuses specifically on family caregivers of adults with a medical condition or disability because they comprise the majority of caregivers.
Who are Family Caregivers in the United States and Why are They Important?
There are 59 million family caregivers (22.5% of adults in the US) who provided care to adults with a medical condition or disability at some point within the 12 months preceding the data collection timeframe referenced in this report. Family caregivers represent 89% of all caregivers, and approximately 80% of individuals with an intellectual and developmental disability (IDD) live with a family caregiver.1
In addition to assisting with activities of daily living , family caregivers primarily spend their time monitoring the health of the person they care for, communicating with providers, and advocating for the needs of the person for whom they provide care. Over half of family caregivers perform medical tasks, such as administering medicine or injections and managing catheters. However, only 22% of family caregivers received formal training to perform these tasks.
What Challenges do Family Caregivers Face?
Among working-age family caregivers, 70% do paid work in addition to their family caregiving. Simultaneously, 59% of family caregivers provide care for at least 20 hours each week, with nearly half of them providing over 40 hours of care per week. Although they spend a large amount of time providing similar care that paid care professionals provide, 81% of family caregivers are NOT paid for any of their services. The few who do receive payment are only paid fora portion of the care that they provide.
Despite employment income, nearly half of family caregivers report financial strains, such as stopping savings, accruing debt, and/or paying bills late. Additionally, over one in four have difficulty finding affordable services, such as meal deliveries, transportation, or in-home health services. The physical and emotional health of caregivers has been a growing concern. Nearly one in four family caregivers report struggling to care for their own health and would rate their health as fair or poor. Specifically, 64% of family caregivers report moderate to high emotional stress, and 45% report moderate to high physical strain.
In spite of facing these strains, over half of family caregivers report that their role as a caregiver gives them a sense of purpose or meaning in life.
Which Policies and Programs Support Family Caregivers?
These data underscore the urgent need to invest in family caregiver support to improve health outcomes for people with an IDD and their family caregivers. To better support family caregivers in fulfilling their essential roles, policymakers and employers must take action to implement financial supports, such as income tax credits, direct payments for caregiving time, and/or paid leave from work. To further increase financial support, the report also suggests that federal and state governments should strengthen and expand programs like Medicaid, Veterans Affairs (VA), and other state programs that currently provide partial payment to family caregivers. Policymakers should also increase access to non-financial supports, such as respite care, individual needs assessments, and support with paperwork and safety.