Understanding Obesity in Individuals with Down Syndrome: Caregiver Perceptions, Awareness, and Motivation

Individuals with Down syndrome (DS) are at an increased risk of obesity and, subsequently, its cardiometabolic and cognitive impacts. Caregivers play a critical role in managing health, yet their perceptions and behaviors have been poorly characterized.

We performed a cross-sectional online survey of caregivers (n = 764) taking care of 48% females and 52% males with DS, conducted across European populations, predominantly in Spain and France. We assessed perceived obesity, perceived harmfulness of current weight, professional consultation, and confidence in promoting healthy behaviors. Associations were examined using chi-square tests, correlation analysis, and ordinal and logistic regression models.

Around one-third (32%) of caregivers perceived their family member with DS with obesity. Perceived obesity changed with age and was more frequently reported in female family members with DS. Awareness of general metabolic risk factors was high among caregivers, but half of respondents were unaware that abdominal fat affects brain health. Consultation with healthcare professionals was uncommon (57% "Never/Rarely/Sometimes") even among those perceived with obesity.

Caregivers demonstrate good general awareness about high energy food risks but limited knowledge of the link between obesity and brain health. Enhancing caregiver education and supporting behavioral change could promote healthier lifestyles in families with individuals with DS.