Informal caregiving is the foundation of long-term care for the older population in the United States. At least 90% of persons receiving help with daily activities receive some informal care, and about two-thirds receive only informal care (Freedman et al. 2013; Kaye, Harrington & LaPlante 2010; Spillman 2009; Spillman & Black 2005). Reliance on informal care is even higher among those who have spouses or adult children, who are the most common source of informal care. Previous research has found that collectively, informal caregivers to older Americans living in non-institutional settings provide 75%-80% of total care hours, indicating their paramount importance in the long-term care system and the substantial amount of care that would have to be provided otherwise in their absence (Spillman 2009; Johnson & Wiener 2006).
In recognition of their critical role in care for the older population with disabilities, greater emphasis has been placed in recent years on understanding how best to support informal caregivers’ efforts, notably through Administration for Community Living (ACL) initiatives, such as the National Family Caregiving Support Program and Aging and Disability Resource Centers, and more recently through the U.S. Department of Health and Human Services (HHS) National Plan to Address Alzheimer’s Disease.
Research has shown that the financial, emotional, and physical demands of caregiving can be high and that the resulting stress or burden can threaten the ability of caregivers to maintain their efforts. Kasper et al. (1994) found that perspectives on caregiving, including stress, were factors in the decision to end caregiving. Spillman & Long (2009) found that having a highly stressed caregiver was associated with a greater risk of long-stay nursing home entry over a two-year follow-up period and that financial and physical strain were important predictors of perceived high stress from caregiving. A substantial literature has examined caregiving-related stress, burden, and their consequences, especially among caregivers to persons with cognitive impairment (Pinquart & Sorensen 2003, 2007).
In this report, we provide new estimates from the National Survey of Caregiving (NSOC), a nationally representative survey of informal caregivers to the older population, supported by the Office of the Assistant Secretary for Planning and Evaluation (ASPE) within HHS. The NSOC was a supplement to the 2011 National Health and Aging Trends Study (NHATS), a new National Institute on Aging-supported annual survey of a nationally representative sample of Medicare beneficiaries age 65 or older. The NHATS is designed to measure both trends and trajectories of health and functioning and the consequences for the older population, their families, and society. The NSOC is particularly innovative in that it attempts to interview all informal caregivers for a well-defined study population of persons receiving informal help with daily activities from family members or friends.
We address the following questions:
- How many informal caregivers provided help with basic and instrumental activities of daily living (IADLs) to elders with disabilities and how many hours of help did they provide on a monthly basis in 2011?
- How does the type and amount of care provided vary by caregiver characteristics (gender, age, relationship to care-recipient, employment status, and health status)?
- What is the distribution and balance of positive and negative aspects of caregiving by caregiver and care-recipient characteristics?
- What roles do different caregivers play, and how do these different roles and caregiver health and participation in valued activities relate to well-being and negative aspects of caregiving?