Breaking barriers: A holistic approach to down syndrome care

By the Neuroaid and Research Foundation

Down syndrome (DS) is one of the most easily identified genetic conditions. Though early intervention and rehabilitation during childhood is the usual practice, holistic rehabilitation of individuals remains a challenge in adulthood. In this article, we look into areas of DS care that are rarely highlighted, but are crucial for improving quality of life.

Medical complexity: A developmental paediatrician’s insights

The developmental paediatrician plays a pivotal role in preventive care, and focuses on improving nutritional support, early screening of cardiac and vision involvements, besides monitoring progress in growth. Persons with DS also present with sleep apnoea, gastrointestinal issues, and autoimmune conditions. An important, but usually overlooked, area that is becoming apparent with research suggests that dietary modifications can affect cognitive and behavioural outcomes due to gut-brain interaction in DS. The Indian Academy of Paediatrics (IAP) has also drafted a consensus guideline on the follow-up of important medical issues in children with DS that is invaluable to parents and caretakers.

Sensory processing and motor coordination: The OT perspective

Children with DS face numerous challenges vis-à-vis gross and fine motor skills, posture, balance, coordination, and sensory processing areas due to low tone, joint laxity, and cognitive impairments. These factors have a profound effect on independence in daily life. Occupational therapists help overcome the impairment by organizing activities that emphasize core strengthening, weight-bearing, and neuromuscular facilitation. Climbing, balancing, and adaptive sports enhance gross motor skills, while hand strengthening and in-hand manipulation tasks refine fine motor abilities like writing and self-care.  Sensory integration therapy using deep pressure, weighted vests, and movement activities are carefully selected according to the need of the child in an attempt to improve regulation and body awareness.
Adaptive tools like customized pencil grips and seating modifications further support independence. By addressing these fundamental challenges OT empowers persons with DS achieve functional independence. It is imperative that a maintenance programme incorporating a physical activity regime to counterweight challenges in young adolescents and adults with DS is emphasized. An OT also is a primary member of the vocational rehabilitation team involved in recommending suitable jobs for an adult with DS. Encouraging active participation in community-based activities, suggesting suitable adaptations and reasonable accommodations in the environment go a long way in improving the overall quality of life.

Physiotherapy in down syndrome care: Building strength and mobility

Evidence-based clinical practice for physiotherapy treatment of adults with DS from infancy to old age, as part of a multidisciplinary team, manages chronic health issues and its sequelae. A PT’s role, when working with a person with DS, depends on life-stage and usually relates to facilitating physical activity. Depending on individual presentation, early in life, the focus is on optimizing motor skills and minimizing development of abnormal compensatory movement patterns. During adolescence and young adulthood, the focus is on maximizing physical and mental health. In adulthood, the focus is on maintaining function, slowing physical deterioration due to early ageing and delaying the onset of conditions such as Alzheimer’s Disease.

Research studies show that two types of therapeutic exercises are effective: aerobic exercise that includes longer-duration interventions that promote the work of large muscle groups and neuromuscular exercise to improve balance or flexibility of the patients.

Beyond speech delay: The unspoken challenges in communication

Speech delays in DS are common. However, the social and pragmatic aspects of language often go unnoticed. Difficulties with turn-taking, initiating and maintaining conversations, and understanding social cues can impact meaningful interactions. Challenges like apraxia of speech and oral-motor issues call for targeted interventions.

Communication is more than speech—it is the primary method of encouraging social interaction and participation. Techniques such as responsive interaction, modelling, and visual supports can improve communication skills when integrated into daily routines. Structured play, and storytelling also strengthens language use in real-life contexts. Realistic goals need to be set after due discussion with parent to form the backbone of any successful intervention program.

The emotional world: Psychological and behavioural interventions

Psychologists play a significant role in helping children with DS navigate their behavioural, emotional, and cognitive complexities through scientific evaluations and therapeutic methods. They use evidence-based practices like cognitive-behavioural therapy (CBT), mindfulness techniques, and structured behaviour therapy to help manage anxiety, emotional dysregulation, and neurodevelopmental problems. Children with DS face socio-emotional challenges.

Building emotional and social foundations: The role of a child guidance counsellor

A child guidance counsellor plays an essential role in the holistic development of children with DS by addressing their emotional, social and behavioural needs. They work closely with the families, teachers, and caregivers to create an environment that nurtures the child’s growth and well-being. Play therapy, in particular, is an effective intervention, as it assists the child to develop problem solving skills, express their emotions, and enhance social communication. Additionally, by supporting the parents and guiding them in using different strategies, a CGC ensures that the child with DS receives the care, encouragement, and a home environment they need to thrive to their fullest potential.

School readiness and inclusion: A special educator’s perspective

Although children with DS have additional educational needs, they also have many of the same needs as do other non-disabled pupils of their age.  Therefore, traditional education models often fail to accommodate them in mainstream settings.

The way forward: A call for multidisciplinary collaboration

The future of DS care lies in embracing a truly multidisciplinary approach. By encouraging a collaborative effort between developmental paediatrics, OT, PT, SLP, psychology, and special education, we can move beyond symptom-management toward empowering individuals with DS to lead fulfilling and independent lives.

(The article has been co-authored by Dr Priya Jain, Monika, Nidhi Kashyap, Stuti Sharma, Dr Jyotsna Wadhwa, Mihika Mittal and Rajni Nagar)