ALS And Speech Therapy: A Helpful Guide for SLPs

Around 5,000 people in the U.S. are diagnosed with ALS every year. As the disease progresses, up to 95% will develop a motor-speech disorder (Beukelman, 2011), while 85% will develop dysphagia (Chapin, 2020).

This means that your speech therapy expertise is much needed with this population. So how can you best help patients with ALS?

In this article, you’ll learn all about ALS and speech therapy, including diagnosis-specific assessments and treatments.

Save and share the infographic below for an overview. Then keep scrolling for a detailed, evidence-based guide!

Your First Patient With ALS: What To Expect

Amyotrophic lateral sclerosis (ALS) is a rapidly progressing degenerative disease that attacks both the upper and lower motor neurons. 

There are two main types of ALS: bulbar-onset and spinal-onset (Canosa et al., 2022). Spinal onset begins as weakness in the limbs, while bulbar-onset begins as difficulty with speaking and swallowing.

Most people with ALS (around 2 out of 3) have spinal-onset ALS.

Since ALS is a progressive neurodegenerative disease, your patients have a high likelihood of developing dysarthria and dysphagia. The severity of each will depend on how advanced the disease is and the type of onset.

Patients with bulbar-onset ALS may develop dysphagia and dysarthria earlier than those with spinal-onset ALS. But all patients will need ongoing monitoring of their communication and swallowing abilities.

Since ALS is complex and progresses rapidly, working closely with a multidisciplinary team is especially important. Throughout treatment, have frequent and ongoing communication about your speech therapy plan and the patient’s progress. Collaborate and seek help as needed.

The ALS multidisciplinary team often includes a(n):

• Neurologist. Neurological management of ALS (education, medications, referrals)
• Nurse. Vitals, medications
• OT. ALDs/IALDs, energy conservation, positioning, assistive devices
• PT. Mobility and access (durable medical equipment, custom wheelchairs)
• Registered Dietician. Caloric, nutritional, and feeding tube management
• AAC specialist. Order and troubleshoot high-tech devices
• Pulmonologist/Respiratory Therapist. Evaluate and monitor respiration, respiratory equipment, and other therapies
• Social Worker. Social, emotional, and financial support

ALS And Speech Therapy Assessment 

Complete thorough communication and swallowing assessments for all patients with ALS. Because the disease can progress so quickly, your speech therapy assessment won’t end with the report.

Even during treatment, each session should include ongoing assessment. These may be follow-up questions, stimulability testing, customizing AAC, or even fully reassessing an area of concern.

See our bestselling Adult Speech Therapy Evaluation Pack for print-and-go templates.

Do An ALS Communication Assessment

Most patients with ALS will develop a motor-speech disorder (Beukelman et al., 2011).

When possible, do a comprehensive communication assessment early in the diagnosis. This is to establish a baseline of their speech intelligibility, even when minimal speech deficits are noted.

Here are the general parts of an ALS communication assessment:

• Oral motor and cranial nerve exam
• Assess diadochokinetic rate: (DDK rate norms)
• Assess voice quality (Consensus Auditory-Perceptual Evaluation of Voice (CAPE-V)
• Collect connected speech sample (Read the Rainbow Passage, describe the Cookie Theft Picture)

For more help, read our full guide to ALS communication assessments.

During your assessment, educate patients and their caregivers about the progressive nature of ALS and how it will affect their speech intelligibility. Introduce AAC, voice banking, and compensatory strategies to improve speech intelligibility.

If your patient’s speech has already deteriorated to the point that they can’t communicate daily wants and needs, consider doing an AAC assessment.  

Do An ALS Dysphagia Assessment

Swallowing disorders are also very common in ALS. Complete early and ongoing swallow screens and/or assessments. Include objective measures like videofluoroscopy or electromyography (Heffernan et al., 2004). 

The Northeast Amyotrophic Lateral Sclerosis Consortium® recommends that an ALS swallowing screen includes (Pattee et al., 2019):

1. Patient-reported outcomes (EAT-10)
2. Dietary intake (ALS Severity Scale, Neuromuscular Disease Swallowing Status Scale)
3. Pulmonary function & airway defense capacity (Forced Vital Capacity, cough testing)
4. 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)
5. Dysphagia/aspiration screen (Yale Swallow Protocol)

If appropriate, complete a full clinical swallow examination.

Next, we’ll explore how to treat communication and swallowing disorders in patients with ALS.

ALS Communication Treatment

Even if your patient living with ALS doesn’t yet demonstrate speech issues, start educating right away. At this early stage, communication treatment may include:

• Education about how and when speech therapy can treat communication
• Introducing AAC
• Introducing message and voice banking (there are free options!)
• Introducing basic communication compensations and strategies
• Early trials of speech-generating devices

For patients with speech issues, focus on communication partner support and compensatory speech strategies. If you haven’t already, trial speech-generating devices.

Dysarthria speech strategies for ALS include:

• Slower speech rate 
• Over-articulate when speaking
• Speak in shorter breath groups
• Spell out a word
• Use gestures
• Keep communication simple
• Signal when you’re about to start talking. Lift your hand, make eye contact, write it down
• Use an Alphabet Board. Point to the first letter of every word that you say
• Name the topic (say 2-3 words to set the topic) 
• Signal the end. Avoid interruptions by holding up one finger. Signal that you’re finished by holding out your palm to the listener (Tomik & Guiloff, 2010; Brewer, 2021)

Dysarthria environmental modification for ALS include:

• Choose/move to a quiet environment
• Use a personal amplifier
• Sit close enough and face-to-face
• Improve lighting (to see each others’ faces, reduce glare, etc.)
• Energy conservation (take breaks, avoid extreme temperatures, use adaptive equipment)

Due to the pathophysiology and neurodegenerative nature of ALS, strengthening exercises are not recommended for dysarthria (Beukelman, 2011, Hanson et al., 2011).

ALS Dysphagia Treatment

Again, speech therapy dysphagia treatment for ALS should include ongoing swallowing assessment.

During treatment, identify the potential risks of aspiration and recommend appropriate diet modifications. Focus treatment on compensatory strategies to maintain nutrition and hydration and support quality of life:

ALS Safe Swallowing Strategy	How It May Help	Precautions
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 the 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 (add 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 & Martin, 2017; Garand, n.d.)

Other dysphagia treatment options for ALS include:

• Good oral care
• Mealtime and environmental modifications like not multitasking, adding snacks, and adaptive equipment to decrease fatigue and weight loss
• Tube feeding if and when appropriate. Factors to consider for tube feeding include the patient’s desires, degree of weight loss, nutritional status, safety when eating, cognition, respiratory status, etc.

Read our Practical Guide to ALS Dysphagia Treatment for more help.

Again, work closely with your patient’s care team.

Share your plan and patient progress and seek their guidance to help your patient maintain their swallowing abilities as long as possible, as safely as possible, and with the best possible quality of life.

References

• Beukelman, D. et al. (2011). Communication Support for People with ALS, Neurology Research International. https://doi.org/10.1155/2011/714693
• Brewer, C. (2021). The Adult Speech Therapy Workbook. Harmony Road Design Publishing.
• Canosa, A., Martino, A., Giuliani, A., Moglia, C., Vasta, R., Grassano, M., Palumbo, F., Cabras, S., Di Pede, F., De Mattei, F., Matteoni, E., Polverari, G., Manera, U., Calvo, A., Pagani, M., & Chiò, A. (2023). Brain metabolic differences between pure bulbar and pure spinal ALS: a 2-[18F]FDG-PET study. Journal of neurology, 270(2), 953–959. https://doi.org/10.1007/s00415-022-11445-9
• 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/
• Hanson, E.K., Yorkston, K.M., Britton, D. (2011). Dysarthria in Amyotrophic Lateral Sclerosis: A Systematic Review of Characteristics, Speech Treatment, and Augmentative. Journal of Medical Speech-Language Pathology, 10(3), 12-30. https://www.ancds.org/assets/docs/EBP/hanson2011.pdf
• Heffernan, C., Jenkinson, C., Holmes, T., Feder, G., Kupfer, R., Leigh, P. N., McGowan, S., Rio, A., & Sidhu, P. (2004). Nutritional management in MND/ALS patients: an evidence based review. Amyotrophic lateral sclerosis and other motor neuron disorders : official publication of the World Federation of Neurology, Research Group on Motor Neuron Diseases, 5(2), 72–83. https://doi.org/10.1080/14660820410020349
• Gosselt, I. K., Nijboer, T. C. W., & Van Es, M. A. (2020). An overview of screening instruments for cognition and behavior in patients with ALS: selecting the appropriate tool for clinical practice. Amyotrophic lateral sclerosis & frontotemporal degeneration, 21(5-6), 324–336. https://doi.org/10.1080/21678421.2020.1732424
• Pattee, G. L., Plowman, E. K., Focht Garand, K. L., Costello, J., Brooks, B. R., Berry, J. D., Smith, R. A., Atassi, N., Chapin, J. L., Yunusova, Y., McIlduff, C. E., Young, E., Macklin, E. A., Locatelli, E. R., Silani, V., Heitzman, D., Wymer, J., Goutman, S. A., Gelinas, D. F., Perry, B., … Contributing Members of the NEALS Bulbar Subcommittee (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
• 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
• Tomik, B., & Guiloff, R. J. (2010). Dysarthria in amyotrophic lateral sclerosis: A review. Amyotrophic lateral sclerosis : official publication of the World Federation of Neurology Research Group on Motor Neuron Diseases, 11(1-2), 4–15. https://doi.org/10.3109/17482960802379004