85% of people living with ALS will eventually develop dysphagia (Chapin, 2020). And speech therapy plays an important role in helping these patients intake enough liquid and nutrition, as safely as possible.
How is dysphagia treatment different for ALS? What unique factors should you consider?
This article will dive into these questions to offer practical, evidence-based tips to inform your practice.
Visit our shop for printable dysphagia handouts, speech therapy treatment guides, AAC boards, and much more!
More Articles
- ALS Swallowing Assessment
- ALS Dysphagia Symptoms
- ALS Dysphasia Treatment
- 1. When To Recommend A Feeding Tube?
- 2. Safe Swallowing Strategies for ALS
- 3. Mealtime Modifications for ALS
- 4. Oral Care
- 5. Respiratory Muscle Strength Training for ALS
- 6. Multidisciplinary Care
- Speech Therapy Treatment Guides & Handouts
- References
ALS Swallowing Assessment
Given the high chance of dysphagia and how quickly it can progress in people with ALS, it’s important that speech therapy regularly monitors their swallowing.
ALS Swallowing Screen
In their best practice guidelines, the Northeast Amyotrophic Lateral Sclerosis Consortium® recommends that an ALS swallowing screen cover 5 areas. They further recommend specific screens that have been validated for people with ALS:
- Patient-reported outcomes
- Dietary intake
- ALS Severity Scale (Normal swallow, Early eating problems, Dietary Consistency Changes, Need Tube Feeding, No Oral Feeding)
- Neuromuscular Disease Swallowing Status Scale (NdSSS)
- Pulmonary function & airway defense capacity
- Forced Vital Capacity (FVC)
- Cough testing
- Bulbar function
- Oral motor exam with cranial nerve testing
- Lingual function via Iowa Oral Performance Instrument (IOPI)
- Center for Neurological Study Bulbar Function Scale (CNS-BFS)
- Dysphagia/aspiration screen
If a patient with ALS fails any of the swallowing screens, recommend a clinical swallowing examination (including an instrumental assessment such as the MBSS or VFSS, if appropriate).
(Pattee, 2019)
ALS Dysphagia Symptoms
Below are common signs of swallowing difficulties in people living with ALS. Keep in mind that some patients may experience silent aspiration.
Common symptoms of dysphagia in ALS include:
- Drooling
- Food and liquid spilling from lips
- Difficulty controlling food and liquid in the mouth
- Difficulty using the muscles of the mouth, jaw, and tongue
- Difficulty chewing
- Oral residue
- A feeling of food stuck in the throat
- Multiple swallows
- Wet vocal quality
- Coughing
- Reduced cough strength/effectiveness
- Choking
- Avoiding certain foods
- Regurgitation
- Fatigue during meals
- Unintentional weight loss
(Tabor, 2017; Garand, n.d.)
ALS Dysphasia Treatment
The goal of dysphagia treatment in ALS is to help patients intake enough liquid and nutrition, as safely as possible.
Since ALS is neurodegenerative, the dysphagia is likely to get worse as the disease progresses. This means that many of your patients will eventually need a feeding tube.
1. When To Recommend A Feeding Tube?
If and when a patient living with ALS needs a feeding tube depends on several factors. These include the patient’s desires, weight, nutritional status, safety when eating, cognition, respiratory status, etc.
Communicate with your ALS healthcare team (registered dietician, nursing, doctors, etc.) throughout dysphagia treatment.
Refer your patient to their primary care provider if, despite treatment, they’re losing weight (unintended loss of more than 10% of body weight), not eating/drinking enough, unsafe when eating, out of breath when eating, or become fatigued during meals.
(Miller, 2009)
2. Safe Swallowing Strategies for ALS
Below are safe swallowing strategies for patients with ALS and dysphagia.
Choose the strategies that target the underlying cause(s) of your patient’s dysphagia, based on your swallowing assessment.
| Safe Swallowing Strategy | How It Helps | Caveats |
| Effortful swallow | Decrease residue | Stop if it causes more fatigue |
| Chin tuck | Protect airway and decrease residue | Instrumental assessment first, to determine if appropriate |
| Head turn (to affected side) | Protect airway, decrease residue | Instrumental assessment first, to determine if appropriate |
| Larger sips | Decrease pyriform sinus residue | Instrumental assessment first, to determine if appropriate |
| Extra swallows per bite | Decrease residue | Stop if it causes more fatigue |
| Liquid wash | Decrease residue | |
| Smaller bites, single sips | Decrease fatigue | |
| Moisten solid foods (sauce, gravy, cream, oil) | Protect airway, decrease fatigue | Adhere to dietary restrictions, like low sodium or sugar |
| Soft, pureed solids | Decrease fatigue, protect airway, pacing | Use only if the patient is willing to eat these types of foods to increase adherence and reduce the chance of less intake |
| Thickened liquids | Protect airway, decrease fatigue | Instrumental assessment first, to determine if appropriate |
(Tabor, 2017; Garand, n.d.)
3. Mealtime Modifications for ALS
| Modification | How It Helps | Caveats |
| Don’t multitask (read, talk, scroll your phone while eating) | Decrease fatigue | |
| Add snacks | Decrease weight loss | |
| Have smaller, more frequent meals | Decrease how long meals take | Don’t split up meals if this schedule causes fatigue or less intake |
| Increase pleasure (add favorite flavors, table settings, background music, etc.) | Increase enjoyment, adherence to modifications | Follow dietary restrictions |
| Refer to OT for adaptive equipment & other modifications | Decrease fatigue, increase enjoyment, increase independence, etc. | |
| Refer to Registered Dietician | Manage weight loss, nutrition and hydration, constipation, etc. |
(Tabor, 2017)
4. Oral Care
Encourage good oral care to decrease the risk of aspiration pneumonia.
Oral care tips:
- Use a clean toothbrush with soft bristles and toothpaste
- Brush your teeth and tongue once in the morning and once in the evening (some patients may need to brush more often)
- Perform oral care before eating or drinking to avoid bacteria entering the airway
- Floss before you go to bed
- Use alcohol-free and sugar-free mouthwash, if you choose to use mouthwash
- Visit the dentist for a cleaning & check-up every 6 months
- Treat xerostomia (dry mouth) by sipping water throughout the day. Consider a mouthwash to reduce bacteria
- For patients who are NPO, lean forward over the sink/basin to catch oral secretions
- Avoid alcohol, caffeine, and sugary drinks
5. Respiratory Muscle Strength Training for ALS
There’s some evidence that respiratory muscle strength training (EMST and IMST) may improve respiratory and bulbar function in patients who are early in the ALS disease progression.
Specifically, a few small studies showed significant improvements in maximum inspiratory pressure, maximum expiratory pressure, and peak cough flow in people with ALS.
These patients had:
- Normal to mildly impaired lung function
- A neurology consultation first
- Their EMST/IMST device set at a moderate load (calibrated at 30% or 50% of the patient’s max pressure)
If your patient is early in their ALS progression and they fit the above criteria, respiratory muscle strength training may help improve respiratory pressure.
If your patient’s disease is more progressed and they don’t fit the above criteria, exercises are not recommended. Introduce modifications and strategies instead (see above).
(Plowman, 2015, 2019; Robison, 2018)
6. Multidisciplinary Care
Multidisciplinary teamwork is especially important given the complex, rapidly progressing nature of ALS.
Work closely with the patient’s care team, seeking help as soon as it’s needed in order to help your patients maintain their swallowing abilities as long as possible, as safely as possible, and with the best possible quality of life.
Communicate with relevant members of the team at least weekly for progress updates and to share your speech therapy plan.
ALS team members may include:
- Registered Dietician. Manage hydration, nutrition, weight, feeding tube formula
- ENT. Surgical interventions
- Neurologist. Neurological management of ALS (education, medications, referrals)
- Nurse. Track weight, nutrition, hydration, vitals; dysphagia screening
- OT. Energy conservation, positioning, assistive devices
- PT. Positioning for eating and drinking, mobility and access (durable medical equipment, custom wheelchairs)
- Pulmonologist/Respiratory Therapist. Evaluate and monitor lung function, airway clearance, tracheostomy tube and ventilator
- Social Worker. Social, emotional, financial support
Speech Therapy Treatment Guides & Handouts
Visit our shop for printable dysphagia handouts, speech therapy treatment guides, AAC boards, and much more!
References
- Chapin, J., et al. (2020). Diagnostic utility of the amyotrophic lateral sclerosis Functional Rating Scale-Revised to detect pharyngeal dysphagia in individuals with amyotrophic lateral sclerosis. PloS one, 15(8), e0236804. https://doi.org/10.1371/journal.pone.0236804
- Garand, K.L. (n.d.). Introduction to the Assessment and Management of Dysphagia in ALS. Medbridge. https://www.medbridge.com/course-catalog/details/introduction-to-the-assessment-and-management-of-dysphagia-in-als-kendrea-garand/
- Miller, R. G., et al. (2009). Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology, 73(15), 1218–1226. https://doi.org/10.1212/WNL.0b013e3181bc0141
- Onesti, E., et al. (2017). Dysphagia in Amyotrophic Lateral Sclerosis: Impact on Patient Behavior, Diet Adaptation, and Riluzole Management. Frontiers in neurology, 8, 94. https://doi.org/10.3389/fneur.2017.00094
- Pattee, G. L., et al. (2019). Provisional best practices guidelines for the evaluation of bulbar dysfunction in amyotrophic lateral sclerosis. Muscle & nerve, 59(5), 531–536. https://doi.org/10.1002/mus.26408
- Plowman E. K. (2015). Is There a Role for Exercise in the Management of Bulbar Dysfunction in Amyotrophic Lateral Sclerosis?. Journal of speech, language, and hearing research : JSLHR, 58(4), 1151–1166. https://doi.org/10.1044/2015_JSLHR-S-14-0270
- Plowman, E. K., Tabor-Gray, L., et al. (2019). Impact of expiratory strength training in amyotrophic lateral sclerosis: Results of a randomized, sham-controlled trial. Muscle & nerve, 59(1), 40–46. https://doi.org/10.1002/mus.26292
- Robison, R., et al. (2018). Combined respiratory training in an individual with C9orf72 amyotrophic lateral sclerosis. Annals of clinical and translational neurology, 5(9), 1134–1138. https://doi.org/10.1002/acn3.623
- Tabor, L., Plowman, M., Martin, K. (2017) Living with ALS: Adjusting to Swallowing Changes and Nutritional Management in ALS. The ALS Association. https://www.als.org/sites/default/files/2020-04/lwals_08_2017.pdf