Dysphagia in Adults with Cerebral Palsy: Ageing, Progression and Management

Cerebral palsy (CP) is the most common motor disability of childhood, affecting approximately 2 per 1,000 live births. The majority of children with CP survive to adulthood, and an increasingly large population of adults with CP is now presenting to adult healthcare services. Dysphagia is one of the most clinically significant comorbidities — present in 35–85% of children with CP — and its management in adults differs in important ways from paediatric practice.

A key clinical misunderstanding is that CP is a “static” condition. In adults with CP, swallowing function can and frequently does deteriorate with ageing, sometimes dramatically, owing to a convergence of factors that produce a new dysphagia or worsen a pre-existing one.

This article follows ASHA Practice Portal guidance on adult dysphagia and NICE CG162.

Dysphagia in Childhood CP vs Adulthood

In childhood, CP dysphagia is primarily a neuromuscular motor impairment superimposed on a developing feeding system. With intensive SLT input during development, many children with CP develop functional feeding strategies that allow adequate nutrition.

In adulthood, however, these compensatory strategies are progressively undermined by:

1. Musculoskeletal ageing — progressive scoliosis, kyphosis and cervical spine arthrosis reduce the range of motion available for hyolaryngeal excursion; joint contractures alter seated posture and head position during meals
2. Early-onset sarcopenia — adults with CP have higher rates of sarcopenia than the general population; high-energy requirements during childhood growth combined with reduced mobility in adulthood contribute to progressive muscle atrophy
3. Dental deterioration — higher rates of dental decay and tooth loss in CP (from enamel hypoplasia, medication-related xerostomia, and practical difficulties with oral hygiene) impair the oral preparatory phase
4. Fatigue accumulation — the higher metabolic cost of movement in CP produces earlier fatigue and may extend to swallowing musculature in adults who have always used considerable compensatory effort to swallow
5. Medication side effects — many adults with CP take long-term anticonvulsants, antispasmodics and antipsychotics; all may impair salivary flow, reduce cough reflex, or worsen dysphagia

CP Type and Dysphagia Profile

Spastic CP

The most common type (80–90%). Bilateral spastic CP (previously called “spastic quadriplegia”) carries the highest dysphagia risk. Oral phase is characterised by hyperreflexic tongue and jaw movements, tonic bite reflex, and hypersensitive gag reflex that may be triggered prematurely during oral phase. Pharyngeal phase is typically delayed and reduced in amplitude.

Dyskinetic CP

Characterised by involuntary, fluctuating tone movements (athetosis, dystonia). Dyskinetic CP dysphagia has a distinctive profile: highly variable from swallow to swallow, with sudden involuntary tongue or jaw movements fragmenting bolus or obstructing laryngeal closure. These patients may have much better swallowing on some days than others, creating assessment challenges similar to Lewy body dementia.

Ataxic CP

Cerebellar-type CP produces dysmetric, uncoordinated swallowing with imprecise timing and variable bolus propulsion. Tremor may be evident during the oral phase.

Hypotonic CP

Reduced muscle tone throughout the system; inefficient bolus gathering; poor lip closure; reduced pharyngeal constrictor force.

Age-Related Deterioration Patterns

Several distinct deterioration patterns are recognised in adults with CP:

• Gradual progression: slow worsening over years, typically presenting to services when a threshold is crossed (recurrent pneumonia, weight loss, mealtime duration exceeding 45 minutes)
• Precipitous deterioration after intercurrent illness: acute illness (fractured hip, respiratory infection, surgery) precipitates a sudden step-down in functional swallowing that may not fully recover
• Transition gap deterioration: at transition from paediatric to adult services (typically age 18–21), loss of specialist SLT input leads to under-recognition of worsening

In Hong Kong, adults with CP in residential care settings may have had no specialist SLT review since their mid-teens. Systematic re-assessment at transition and during adult care home placement is strongly recommended. The HKU Swallowing Research Lab (Prof. Karen Chan) has been involved in advocating for evidence-based adult CP dysphagia services in Hong Kong.

Assessment

SLT assessment of adults with CP must be adapted to the individual’s cognitive capacity, communication style, and typical food and liquid preferences. Key considerations:

• Usual diet and liquid level: what does the patient typically eat? This is the baseline, not a standard bolus test
• Postural assessment: what is the resting head, trunk and limb position? Can the patient be optimally positioned for assessment?
• Communication: augmentative and alternative communication (AAC) tools may be needed; SLT should have experience with supported communication in intellectual disability
• Fatigue: conduct assessment at a time when the patient is typically rested, not post-exercise or after a demanding activity session
• Instrumental assessment: FEES is often preferred as it can be conducted in the patient’s usual wheelchair with adapted positioning; VFSS requires transfer to radiology table which may be difficult with severe contractures

Management

IDDSI Modification

The IDDSI framework applies to CP dysphagia management. Adults with bilateral spastic CP or dyskinetic CP often require IDDSI Level 4 (Puréed) or Level 5 (Minced & Moist) for solid foods, and Level 2 (Mildly Thick) or Level 3 (Moderately Thick) for liquids. The appropriate level must be confirmed by instrumental assessment.

Importantly, the IDDSI prescription should be reviewed at least annually in adults with CP, given the potential for age-related deterioration.

Adaptive Equipment

Adults with CP often benefit from adaptive feeding equipment:

• Angled and weighted utensils to accommodate involuntary movements
• Non-slip bowls and plates
• Cut-out cups to avoid neck hyperextension
• Assistive technology-controlled plate or bowl positioning for those with very restricted arm function

Positioning

Optimal feeding posture is critical and specific to the individual. This typically requires an occupational therapy assessment and wheelchair seating review, working alongside the SLT.

When to Refer

Any adult with CP showing signs of declining swallowing function — reduced food variety, increased mealtime duration, new coughing or choking, weight loss, or recurrent chest infections — should be urgently referred for SLT assessment. See When to Refer to a Speech and Language Therapist.

References

1. American Speech-Language-Hearing Association. Adult Dysphagia Practice Portal. https://www.asha.org/practice-portal/clinical-topics/adult-dysphagia/
2. National Institute for Health and Care Excellence. Stroke Rehabilitation in Adults (CG162). https://www.nice.org.uk/guidance/cg162
3. IDDSI. The IDDSI Framework. https://www.iddsi.org/framework
4. Logemann JA, et al. (2015). Disorders of deglutition. Handbook of Clinical Neurology, 129, 465–487. PMID: 26315994