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Keywords:

  • Caregiving;
  • survey methodology;
  • disability

Context: Public policy regarding family caregiving for disabled older adults is affected by their estimated number, their attributes, and the services provided. The available national surveys, however, do not have a uniform approach to ascertaining the number of family caregivers, so their estimated number varies widely.

Methods: This article looks at nationally representative, population-based surveys of family caregivers conducted between 1985 and 2010 to find methods pertinent to ascertaining the number of caregivers. The surveys’ design, definition of disability, and approach to identifying and defining caregivers of disabled adults aged sixty-five and older were identified, and cross-survey estimates were compared.

Findings: Published estimates of the numbers of caregivers of older disabled adults ranged from 2.7 million to 36.1 million in eight national surveys conducted between 1992 and 2009. The surveys were evenly divided between caregivers identified by disabled older adults (n= 4, “disability surveys”) and self-identified (n= 4, “caregiver self-identification surveys”). The estimated number of family caregivers of disabled adults aged sixty-five and older was, on average, 4.8 million in disability surveys and 24.4 million in caregiver self-identification surveys.

Conclusions: The number of family caregivers of disabled older adults estimated by national surveys varied substantially. Greater consistency in defining caregivers could yield more informative estimates and also advance policy efforts to more effectively monitor and support family caregivers.