How To Do An ALS Communication Assessment

Speech therapy can help people living with ALS to communicate as effectively as possible as they move through the stages of their disease.

In this article, you’ll learn the steps to an ALS communication assessment. Plus 5 tips for how and when to introduce AAC.

See the AAC pack for premade, printable AAC boards and patient handouts!

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Review of ALS

ALS communication assessment

Amyotrophic lateral sclerosis (ALS) is a rapidly progressing neurodegenerative disease.

Spinal (Limb) Onset ALS. Most people (~70%) have spinal onset. This means that ALS symptoms first appear in their arms or legs. Symptoms can include muscle cramps, weakness, and twitching.

Bulbar Onset ALS. People with bulbar onset ALS first show symptoms in their face or neck. This type of ALS typically progresses faster than spinal onset.

Multifocal Onset. Some ALS symptoms begin simultaneously in the limbs and face/neck.

(Greenwood, 2020)

ALS Multidisciplinary Team

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 communication and swallowing abilities as long as possible and to improve quality of life.

Communicate with the team at least weekly for progress updates and to share your speech therapy plan.

ALS team members may include:

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

Ongoing Assessment

Because ALS can progress so quickly, your communication assessment doesn’t end with the report.

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

For example, a patient’s voice sounds breathier than the previous session. You ask: “I hear some breathiness in your voice. Do you hear it too? About when did it start?” Or, your patient’s intelligibility clearly deteriorated over the weekend, so you complete another oral mechanism examination.

That said, be careful not to overwhelm the patient or their caregiver. Instead, get updates from the multidisciplinary team, set a predetermined time during each session to ask questions, and allow the patient/caregiver plenty of time to share.

ALS Communication Assessment

1. Oral Mechanism & Cranial Nerve Examinations

oral mechanism exam als

Complete an oral mechanism and cranial nerve examinations to assess the type of dysarthria and type of neural involvement that may be present (e.g., spastic and upper motor neuron, flaccid and lower motor neuron)

  • Mandible (CN V):
    • At rest
    • Open
    • Open with resistance
    • Close
    • Close with resistance
    • Lateralize
    • Protrude
    • Retraction
    • Sensation
  • Lips (CN VII):
    • At rest
    • Protrude
    • Retract
    • Repetitive protrude/retract
    • Puff cheeks
    • Puff cheeks against resistance
    • Sensitivity to touch
    • Sensation
  • Tongue (CN XII):
    • At rest
    • Protrude out
    • Protrud out with resistance
    • Protrude up
    • Protrude up with resistance
    • Protrude down
    • Protrude down with resistance
    • Lateralize
    • Lateralize with resistance
    • Retract
    • Lick teeth
    • Lick lips
    • Sensation
  • Velum:
    • At rest (CN IX)
    • Prolonged “ah” (CN X)
    • Repetitive “ah” (CN X)
    • Sensation
  • Reflexes (CN IX, X):
    • Gag
    • Faucial arches
  • Other Observations
    • Dentition
    • Raise eyebrows (CN VII)
    • Breath support
    • Oral mucosa
    • Cough on command
    • Throat clear on command

Read How To Do An Oral Mechanism Exam for more details.

Speech Assessment

speech evaluation

2. Connected Speech Sample

Record a connected speech sample. This may be a conversation, reading aloud, and/or completing a monologue about a topic that’s interesting or familiar (family, career, hobby, etc.)

Assess the following:

  • Intelligibility: the number of words you understand divided by the number of total words spoken (to give you a percentage)
  • Speech rate: words per minute
  • Words per breath group

3. Maximum Phonation Time (MPT)

  • Prompt the patient to say ‘ah’ for as long as they can. They should use their normal loudness. Record their time in seconds
  • Have them repeat this 3 times. Their MPT is the longest of the 3 trials
  • You can compare their MPT with norms

4. Diadochokinetic Rate

Prompt the patient to say the following sounds as quickly and clearly as they can for 15 seconds each. They will repeat each 3 times.

“puh puh puh”

“tuh tuh tuh”

“kuh kuh kuh”

“puh tuh kuh”

You can compare their DDK rate with norms.

5. Assess Voice Quality

For this portion of the assessment, record another voice sample. Transcribe the patient’s responses, as appropriate, and note your observations

  • Word list (either repetition or have the patient read a prepared list aloud)
  • Sentences: “Tell me about your speech. Tell me about your voice. What are your speech strengths? Weaknesses?”
  • Read paragraph: Ask the patient to read a paragraph aloud (i.e. Rainbow Passage)
  • Monologue: Ask the patient about their career, hobbies, family, etc. or to describe a visual scene (i.e. Cookie Theft Picture)

Voice Quality: What To Measure

  • Overall Severity: Your overall impression of the voice problem
  • Roughness: Vocal irregularity
  • Breathiness: Audible air escape in voice
  • Strain: Excessive vocal effort
  • Pitch: Deviance from a patient’s normal pitch, given their gender, age, and cultures
  • Loudness: Deviance from a patient’s normal loudness given their gender, age, and cultures. Including whether too soft or too loud
  • Additional Features: such as diplophonia, aphonia, pitch instability, tremor, vocal fry, falsetto, and wet/gurgly quality

Use ASHA’s Consensus Auditory-Perceptual Evaluation of Voice (CAPE-V) to measure voice quality.

Differential Diagnosis: Upper Motor Neuron vs. Lower Motor Neuron Symptoms

Knowing what motor neurons are involved (upper, lower, or both) can help you set goals and make a plan of care that best meets your patient’s unique needs.

Upper Motor Neuron (UMN)

Includes:

  • Corticospinal tract
  • Corticobulbar tract
  • Direct activation pathway (pyramid tract)
  • Innervates contralateral side

UMN involvement can manifest as spastic dysarthria. Symptoms include:

  • Spasticity
  • Muscle tightness
  • Incoordination
  • Reduced speech rate
  • Harsh/strained vocal quality
  • Increased effort to speak

Lower Motor Neuron (LMN)

Includes:

  • Peripheral nervous system
  • Final common pathway

LMN involvement can manifest as flaccid dysarthria. Symptoms include:

  • Muscle weakness
  • Muscle atrophy
  • Normal speech rate
  • Hypernasality
  • Breathiness
  • Fasciculations

AAC Assessment Tips

AAC speech therapy

AAC is any form of communication besides talking that helps someone express their wants, needs, thoughts, and feelings.

Below are 5 tips to help you decide when to do an AAC assessment and how to lay the groundwork for future AAC use.

Not all people living with ALS require an AAC assessment right away. However, if they show any of the signs in Tip #1 below, don’t hesitate to complete an AAC assessment and introduce it into treatment as soon as possible.

1. Signs You Patient May Benefit from AAC

  • They’re unable to fully express their wants, needs, thoughts, and feelings by talking
  • They have dysarthria
  • Speech rate drops below 125 WPM (reduced comprehensibility)
  • Intelligibility drops below 90%
  • They experience fatigue or frustration when communicating by talking
  • They are willing and cognitively able to learn to communicate by means other than talking
  • They have a dedicated facilitator (main communication partner and/or caregiver) who is willing and able to support their use of AAC

2. AAC Assessments Are Ongoing

It bears repeating that the progressive nature of ALS makes ongoing assessment necessary to keep treatment as functional and helpful as possible.

Nearly all patients living with ALS will eventually need AAC to help them communicate. Even if your patient currently communicates via speech, continue to monitor their motor speech and communication abilities. Prepare them for the likely need for AAC down the line.

3. Educate ASAP

Provide Education About:

  • What AAC is
  • Types of AAC: writing on a whiteboard, texting on a smartphone, pressing icons on a speech-generating device, etc.
  • When to use AAC
  • Etc.

If your oral mechanism exam and communication assessment demonstrate dysarthria, educate about AAC right away.

If the case history indicates the patient has dysarthria, provide the education listed above and also have a few device options ready to discuss when you meet them on assessment day.

If the patient doesn’t currently need AAC, educate the patient and caregiver about when you’ll likely introduce AAC or high-tech trials. See Signs Your Patient May Benefit From AAC above.

4. Complete AAC Trials

AAC assessment

You can complete AAC device trials at any time. In fact, trialing devices even before a patient living with ALS has dysarthria can be very helpful in minimizing overwhelm.

Read How To Trial AAC Devices for more details.

High-tech devices take time to trial, order, and ship. As they wait for their device, ensure that your patient always has a way to communicate efficiently.

Ask yourself: “What will my patient need to communicate, from the time they wake up to the time they go to bed? How can AAC help them communicate these things?”

Researching and trialing high-tech AAC options can be time-consuming. Before you delve in, speak with your supervisor about getting compensated for all of the time you will spend doing this necessary task.

5. How to Choose an AAC Device to Trial

There are many factors to consider when choosing an AAC device to trial. If you’re feeling overwhelmed, zoom out and remind yourself that the purpose of AAC is to help your patient communicate as effectively and efficiently as possible. Then, find some options that can help your patient get there.

Below are some factors to consider when choosing an AAC device to trial:

  1. Patient’s communication needs
    • How often they need the device
    • How much support they need: alphabet board vs. speech-generating device
  2. Motor abilities
    • Trunk, neck, and arm strength and control
    • Hand and finger strength and control
    • Eye gaze control
  3. Cognitive abilities and technical skills
    • Memory, attention, and executive functioning abilities
    • Skills in using high-tech equipment
    • Tolerance of learning new technology
  4. Personal preference
    • Interest in technology
  5. Relative communication and motor strengths
    • Abilities that can be used to support relative weakness
  6. Physical access
    • Touch, laser, eye-gaze, etc.
    • Mounting
    • Vision and hearing (contrast, volume)
  7. Language options
    • Patient’s preferred language(s)
  8. Funding source
    • Medicare, Medicaid, private insurance, VA, grants, state telecommunication equipment distribution programs, private pay, etc.
    • How often a new device is covered
  9. How long they’ll likely need to use the device
    • Until they need a higher-tech device, for the rest of their lives, etc.

Signs That A Device Is A Good Match

  • Your patient uses it to communicate efficiently and effectively
  • They can navigate it with minimal or no frustration
  • They can afford the device
  • They show progress in speed/complexity of messages during the trial period

Speech Therapy Materials

See what SLPs are saying about the Adult Speech Therapy Starter Pack & Evaluation Pack!

5

An amazing bundle for your CF year! So helpful!

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Nicole

5

Great resource for beginner SLPs and also trying to assess various clients with different modalities. 10/10

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References

  • Costillo, J. & O’Brien, M. Speech and Augmentative/Alternative Communication (AAC) in ALS. Medbridge. https://www.medbridge.com/course-catalog/details/speech-and-augmentative-alternative-communication-aac-in-als-john-costello-meghan-obrien/
  • Greenwood, F. (2020, January). Limb and bulbar onset ALS. ALS Therapy Development Institute. https://www.als.net/news/science-sunday-limb-and-bulbar-onset-als/#:~:text=Although%20prgression%20is%20variable%20by,voice%20box%2C%20particularly%20the%20tongue.
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