Compound Caregiving: Toward a Research Agenda

Chung Eun Lee, Meghan M. Burke, Elizabeth A. Perkins

Research output: Contribution to journalArticlepeer-review


Aging family caregivers of adults with intellectual and developmental disabilities (IDD) have unique circumstances setting them apart from the general caregiving population. Such differences include the extensive duration of the caregiving, and health concerns that manifest in the caregiver and individuals with IDD over time. Because of increasing longevity, family caregivers are likely to become compound caregivers (i.e., individuals caregiving for multiple people). Almost 70% of family caregivers of individuals with IDD experience compound caregiving, yet we know very little about compound caregiving. In this article, we highlight the importance of supporting compound caregivers by identifying research issues that address current challenges and future directions. Implications for research are noted, including the need for multidimensional outcome measures and longitudinal studies.

Original languageEnglish (US)
Pages (from-to)66-79
Number of pages14
JournalIntellectual and developmental disabilities
Issue number1
StatePublished - Feb 2022


  • compound caregiving
  • intellectual and developmental disabilities
  • respite care

ASJC Scopus subject areas

  • General Medicine


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