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

Background: 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. Methods: 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. Results: 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. Conclusions: 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.

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Publication Details

Journal
Nutrients
Published
2026-05-28
DOI
https://doi.org/10.3390/nu18111727
Primary Topic
Down syndrome and intellectual disability research
Type
article
Field-Weighted Citation Impact
0.00

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article

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

Klaus Langohr, María Martínez de Lagrán, Píetro Lió, Chan Li et al.
Nutrients
Down syndrome and intellectual disability research
article

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

Klaus Langohr, María Martínez de Lagrán, Píetro Lió, Chan Li, Johannes Beckers, Thomas Cahill, Valerie Nalesso, Anne Hiance-Delahaye, Laura Forcano, Rafael de La Torre, Mara Dierssen, Andre Strydom, Marie-Claude Potier, Yann Hérault, Pat Clarke
article en

Abstract

Background: 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. Methods: 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. Results: 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. Conclusions: 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.

NutrientsVol. 18(11)
Centre National de la Recherche Scientifique (FR), Inserm (FR), Queen Mary University of London (GB), King's College London (GB), Neurosciences Institute (US), South London and Maudsley NHS Foundation Trust (GB), University of Cambridge (GB), Instituto de Salud Carlos III (ES), Barcelona Biomedical Research Park (ES), Helmholtz Zentrum München (DE), Weihenstephan-Triesdorf University of Applied Sciences (DE), Sorbonne Université (FR), Institut de génétique et de biologie moléculaire et cellulaire (FR), Centre for Biomedical Network Research on Rare Diseases (ES), Institut de Myologie (FR), Laboratoire d'études sur les monothéismes (FR), Pitié-Salpêtrière Hospital (FR), Phénotypage et ingénierie précliniques des systèmes d’organismes modèles (FR), Hospital Del Mar (ES), Fondation Jérôme-Lejeune (FR), Centre for Genomic Regulation (ES), Génétique Moléculaire Génomique Microbiologie (FR), William Harvey Research Institute (GB), Deutsches Diabetes-Zentrum e.V. (DE), European Federation of Nurses Associations (BE), German Center for Diabetes Research (DE), Universidad de Londres (MX), Heinrich Heine University Düsseldorf (DE), Technical University of Munich (DE), Université de Strasbourg (FR), Universitat Politècnica de Catalunya (ES)
Wellcome Trust, Barts Charity, Ministerio de Ciencia e Innovación, Instituto de Salud Carlos III, European Regional Development Fund, Agencia Estatal de Investigación
Zero hunger
Openalex Percentile: Top 5%
Down syndrome and intellectual disability research
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