Work

Caregiving for Adults With Down Syndrome: Caregiver Experiences and Support Needs

Year: 2025

Type: article

Abstract: BACKGROUND: Family caregivers of adults with Down syndrome often provide life-long caregiving support for their loved one. Long-term caregiving can impact caregivers' health and well-being, yet their experiences and support needs are underexplored. METHOD: Semi-structured interviews were conducted with caregivers of adults with Down syndrome to understand their caregiving experiences and perceived caregiver support needs. Transcripts of the recorded interviews were coded and analysed thematically. RESULTS: = 58.8 years) of adults with Down syndrome completed the interviews. We identified four major themes: constancy of caregiving, future planning, significance of social supports and positive joys and rhythms. CONCLUSION: Our findings demonstrate that caregiving responsibilities can feel constant and unceasing, yet consistent routines and positive appraisal help ease the burden. Family and friends support thriving, but trusted options for transportation services, life transition planning and respite care are needed. Targeting these support needs may improve caregiver well-being.

Source: Journal of Applied Research in Intellectual Disabilities

DOI: 10.1111/jar.70118

Authors: Amy E. Bodde, Joanna Veazey Brooks, Bethany Forseth, Tara Wolfe, Kristine Williams, Lauren T. Ptomey

Institution: University of Kansas Medical Center

Language: English

Topic: Family and Disability Support Research

Subfield: Clinical Psychology

Field: Psychology

Domain: Social Sciences

SDG: Good health and well-being

Open Access status: bronze

Funders: National Institutes of Health, National Institute on Aging, National Institute of General Medical Sciences, National Center for Advancing Translational Sciences