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Caregiver-reported social impacts in down syndrome regression disorder

Katherine Chow, Lilia Kazerooni, Maeve Lucas, Samuel Otey, Mariam Yousuf, Ruth Brown, Eileen Quinn, Jonathan Santoro

4.2.2026

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Summary

Down Syndrome Regression Disorder (DSRD) is a sudden neurocognitive decline in individuals with Down syndrome that affects communication, social, motor, cognitive, and physical abilities. This decline places significant and immediate strain on carers, whose social wellbeing is deeply impacted by the increased demands of caring. The study compared the experiences of DSRD carers with non‑DSRD carers to understand these social effects. Researchers found that DSRD carers experienced far higher levels of social exclusion and withdrawal, with 65.66% reporting negative impacts on adult friendships and 71.21% reporting declines in overall social relationships. Many described a shrinking social world as caregiving demands intensified. Rates of social withdrawal were also markedly higher among DSRD carers (43.2%) compared with non‑DSRD carers (17.9%). The study highlights the profound and lasting impact of DSRD on both individuals and carers, urging holistic interventions that support carers’ social and emotional wellbeing.

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