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Updated: Oct 5, 2025

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Compound Caregiving: Toward a Research Agenda.

Chung Eun Lee1, Meghan M Burke1, Elizabeth A Perkins1

  • 1Chung Eun Lee, Chonnam National University, Republic of Korea; Meghan M. Burke, University of Illinois at Urbana-Champaign; and Elizabeth A. Perkins, University of South Florida.

Intellectual and Developmental Disabilities
|February 1, 2022
PubMed
Summary

Aging family caregivers of adults with intellectual and developmental disabilities (IDD) face unique challenges, including extensive care durations and compound caregiving. Research is needed to support these caregivers, focusing on multidimensional outcomes and longitudinal studies.

Keywords:
compound caregivingintellectual and developmental disabilitiesrespite care

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Area of Science:

  • Gerontology
  • Disability Studies
  • Caregiver Research

Background:

  • Aging family caregivers of adults with intellectual and developmental disabilities (IDD) have distinct needs due to prolonged caregiving and co-occurring health issues.
  • Increased longevity leads to a rise in "compound caregivers" who manage care for multiple individuals.
  • Nearly 70% of family caregivers for individuals with IDD are compound caregivers, yet this role is understudied.

Purpose of the Study:

  • To highlight the importance of supporting compound caregivers for individuals with IDD.
  • To identify critical research issues and future directions for compound caregiver support.
  • To underscore the need for enhanced research methodologies in this area.

Main Methods:

  • This article reviews existing literature and identifies gaps concerning compound caregiving for adults with IDD.
  • It synthesizes challenges faced by this specific caregiver population.
  • It proposes future research directions and implications.

Main Results:

  • Compound caregiving is prevalent among family caregivers of adults with IDD (nearly 70%).
  • Current research significantly underestimates the complexities and needs of compound caregivers.
  • Specific challenges include extensive care duration and managing multiple care recipients' health.

Conclusions:

  • There is an urgent need to develop targeted support systems for compound caregivers of adults with IDD.
  • Future research should employ multidimensional outcome measures to capture the full impact of compound caregiving.
  • Longitudinal studies are essential to understand the long-term effects and evolving needs of these caregivers.