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Caregivers and Long-Term Services and Supports

Publication Date

As the United States population ages, a larger proportion of individuals will likely need and use long-term services and supports (LTSS). Much of this support is provided by informal (i.e., unpaid) caregivers. For those that need paid LTSS, most Americans pay out-of-pocket. Some may do so until their personal resources are exhausted, and then rely on the Medicaid safety net. Reliance on Medicaid for those with little income or limited assets may result in increased federal and state spending for LTSS. As such, there is a pressing need to understand the current cost of long-term care, national expenditures on LTSS, and future projections of the availability of informal caregivers. This project built off previous ASPE work modeling LTSS needs and expenditures, as well as work that explores how key demographic changes will affect the supply of informal caregivers for older Americans. One of the primary goals of the project is to provide current and improved estimates of national LTSS expenditures, as well as projections that show how changing demographics could affect older Americans’ need for LTSS, the supply of future caregivers and Medicaid spending.

This research was conducted under contract # HHSP233201600024I between HHS/ASPE’s Office of Behavioral Health, Disability, and Aging Policy (BHDAP) and Urban Institute.  Please also visit the ASPE Aging & Disability page for additional research or the ASPE Long-Term Services & Supports/Long-Term Care page for additional research. 

Available Reports:

  • Future Change in Caregiving Networks: How Family Caregivers and Direct Care Workers Support Older Adults with Needs for Long-Term Services and Supports at Present and in the Future. As demographics change, caregiving patterns will also gradually change. In coming decades, we expect that the United States population will age, with growth especially rapid in the age ranges when people are most likely to need LTSS, including family care. In this brief we project the impacts on the availability of caregivers on out-of-pocket costs and the use of paid care.
  • The Economic Value of Unpaid Care Provided to Older Adults Who Need Long-Term Services and Supports. Each year, older Americans who need LTSS receive unpaid assistance with personal care from millions of helpers. Far more older people with care needs receive unpaid care than paid care. Unpaid care reduces the need for expensive paid care and enables many older people with LTSS needs to stay at home instead of moving into residential care facilities. We project that the average lifetime value of unpaid care after age 50 among those who receive care is $168,000. Nearly a quarter of care recipients receive unpaid care valued at $250,000 or more.
  • Diversity in Caregiving Needs and Networks: Differences by Race-Ethnicity in the Care Older Adults Receive. The level and timing of risk of needing LTSS varies widely. Black and Hispanic older adults need care sooner and for longer periods than White older adults. They receive more unpaid care, are more likely to co-reside with family, and are more likely to report adverse consequences from unmet LTSS needs.
  • Change in Caregiving Networks Over the Course of Disability. This brief describes when and how older adults rely on their families for care, and when they turn to paid care at home or in congregate settings. It presents near-term estimates and projections of care needs, care networks, and paid care use both annually at various point in time and cumulatively from age 51 through death. People with denser care networks receive more unpaid care, while people with less dense networks are more likely to go without care or turn to assisted living. For many people, care networks and care choices evolve with age and increasing significance of LTSS needs.
Product Type
ASPE Issue Brief
Older Adults | Black & African American People | Hispanic, Latino, Latina, & Latinx People | Racial & Ethnic Groups | White People | Caregivers | People with Disabilities | People Living with Dementia
Location- & Geography-Based Data
National Data