Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that progressively affects motor neurons, impairing the capacity for voluntary movement. Among the functions that become compromised, swallowing occupies a central place: eating and drinking, acts we perform automatically thousands of times a day, can become a complex and, at times, dangerous challenge. Dysphagia — difficulty swallowing — is not just another symptom of ALS; it is a determining factor in the quality of life, nutritional status and respiratory safety of the person affected.
This guide aims to offer rigorous and accessible information about how dysphagia progresses in ALS, which signs to monitor, what strategies exist to manage it, and when to consider gastrostomy. It is aimed both at people living with the diagnosis and at their families and carers, in the conviction that good information can contribute to making calmer, more informed decisions.
Swallowing is an extraordinarily complex process involving more than 30 pairs of muscles and several cranial nerves coordinating with precision. In ALS, degeneration of upper and lower motor neurons can affect any of these elements, producing a dysphagia that evolves over time.
The form and timing of onset depend largely on the type of onset of the disease:
Typical progression follows a pattern that can be described in several phases, although each person is unique and the rate varies considerably:
| Phase | Typical characteristics |
|---|---|
| Initial | Fatigue when chewing, isolated coughing episodes when drinking, increased time needed for meals. Often goes unnoticed. |
| Intermediate | Need to modify textures, avoidance of certain foods, unintentional weight loss, more frequent choking episodes. |
| Advanced | High aspiration risk, inability to maintain safe and sufficient oral intake, need for alternative feeding route. |
It is important to note that dysphagia in ALS is not limited to difficulty swallowing solid food. Management of saliva (sialorrhoea or, conversely, xerostomia), weakness of the lips and tongue in forming the food bolus, and reduction of the cough reflex are equally relevant components of the clinical picture [3].
Early identification of swallowing problems can contribute to preventing two of the most serious complications of dysphagia: pulmonary aspiration and malnutrition. Both have a direct impact on prognosis and quality of life.
Warning signs of aspiration:
It is worth bearing in mind silent aspiration: in some cases, aspirated material reaches the airways without triggering a cough, due to reduced laryngeal sensitivity. Evidence suggests that up to 30% of aspirations in people with neuromuscular disease may be silent [4], underlining the importance of periodic instrumental assessments.
Warning signs of malnutrition and dehydration:
Malnutrition in ALS is not a minor phenomenon. Several studies have associated weight loss and low body mass index with faster disease progression and lower survival [5]. Maintaining adequate nutritional status is therefore a primary therapeutic objective.
The management of dysphagia in ALS is fundamentally compensatory and adaptive. Unlike other conditions where functional improvement can be pursued, in ALS the main objective is to maintain the safety and efficacy of swallowing for as long as possible, as part of an individualised programme.
Modifying the texture of food and the viscosity of liquids is one of the most frequent and effective interventions. The International Dysphagia Diet Standardisation Initiative (IDDSI) provides a standardised framework that facilitates communication between professionals and carers [6].
Recommendations are individualised based on the speech-language therapy assessment, but some general principles include:
Certain postures and manoeuvres can contribute to protecting the airway during swallowing. Their application must always be supervised and taught by a specialist speech-language therapist:
The role of active swallowing exercises in ALS is a subject of debate in the scientific community. Unlike vascular dysphagia (such as after stroke), where muscle-strengthening exercises have demonstrated benefits, in a neurodegenerative disease like ALS there is concern that intensive exercise may accelerate fatigue in already compromised motor neurons [8].
Current guidelines suggest a cautious approach: low-intensity maintenance exercises rather than maximum-strengthening exercises, adapted to each person's functional status and closely supervised by the speech-language therapy team. Evidence in this area is still limited, and decisions must be individualised.
Percutaneous endoscopic gastrostomy (PEG) is a procedure in which a tube is placed directly into the stomach through the abdominal wall, creating an alternative route for nutrition and hydration. It is probably one of the most difficult decisions faced by the person with ALS and their family, and deserves to be approached with honesty, sensitivity and sufficient advance planning.
International clinical guidelines recommend that the conversation about gastrostomy begins early, ideally when swallowing is still relatively functional. Criteria that typically indicate the need to consider PEG include [9, 10]:
Evidence suggests that PEG placement is safer and better tolerated when respiratory function is still relatively preserved — specifically when forced vital capacity (FVC) is greater than 50% of the predicted value [10]. Waiting until respiratory function is severely compromised can increase procedural risk.
The speech-language therapist specialising in swallowing is a key figure in accompanying the person with ALS. Their involvement spans from the initial assessment through to ongoing follow-up throughout the course of the disease.
Given the progressive nature of ALS, assessment cannot be a one-off event. Regular follow-up allows:
The complexity of ALS demands a response that transcends the work of any individual professional. International guidelines are clear: the multidisciplinary approach is associated with better quality of life and, according to some studies, with increased survival [13].
In the management of dysphagia, this translates into close coordination between:
At GNeuro, as a robotic neurorehabilitation centre, the approach is complemented by advanced rehabilitation technologies (robotic gait training systems, upper limb rehabilitation robots, functional electrical stimulation systems, etc.) which, as part of an individualised programme, can contribute to maintaining functionality for as long as possible in areas where intervention is appropriate.
Each person with ALS is unique. The care plan must be adapted to their needs, values and wishes, reviewed as frequently as the clinical evolution requires. Decisions about nutrition and gastrostomy are always framed within an advance care planning process that respects the autonomy of the individual.
When does dysphagia appear in ALS?
Dysphagia may appear in the early stages when the onset of the disease is bulbar, or it may emerge as the disease progresses in spinal-onset forms. Evidence suggests that up to 85% of people with ALS will experience some degree of swallowing difficulty over the course of the disease. It is therefore recommended that speech-language therapy assessment of swallowing forms part of routine follow-up from the time of diagnosis, regardless of whether symptoms are evident.
Does gastrostomy (PEG) mean stopping eating by mouth?
Not necessarily. Many people continue to take food orally in a complementary way, provided that the speech-language therapy assessment confirms it is safe. The PEG acts as the primary route to ensure adequate hydration and nutrition, but does not exclude oral intake of those foods and textures considered safe. What matters is that the decision is made in an informed and shared manner, ideally before respiratory function is severely compromised.
Which professionals should be involved in the management of dysphagia in ALS?
The approach must be multidisciplinary and include, as a minimum, neurology, rehabilitation medicine, specialist speech-language therapy for swallowing, nutrition and dietetics, pulmonology, gastroenterology and nursing. Psychological support is also fundamental, both for the person affected and for their family. Coordination of these professionals can contribute to comprehensive care and shared decision-making that respects the values and wishes of each individual.
Are there exercises to improve swallowing in ALS?
In ALS, the approach to swallowing exercises differs from other neurological conditions. Since it is a neurodegenerative disease, intensive strengthening exercises may not be appropriate and there is debate about whether they may accelerate muscle fatigue. Current guidelines suggest low-intensity maintenance exercises, always individualised and supervised by a speech-language therapist experienced in neuromuscular diseases. Compensatory manoeuvres and texture adaptation are usually the most effective interventions.
At GNeuro we have a multidisciplinary team with experience in the management of neurological dysphagia. If you or your family need a specialist assessment, we are here to support you.
Request assessment