Most people living with ALS will develop a motor speech disorder. It’s estimated that, without assistance, up to 95% of this population won’t be able to communicate their daily needs as the disease progresses (Beukelman, 2011).
This is why you’re such a vital part of the ALS team! Speech therapy can help patients remain intelligible for as long as possible—while introducing the assistance they need to communicate at every phase of their journey.
In this article, you’ll find a guide to ALS speech therapy communication treatment, from dysarthria to AAC.
For our bestselling patient handouts and worksheets, check out the Adult Speech Therapy Starter Pack!
ALS Speech Therapy Communication Treatment
Speech therapy can offer communication treatment throughout a patient’s ALS journey.
While they may not need continuous therapy, it’s important to regularly assess their communication needs so you can update your goals and treatment plan as their disease progresses.
Use an assessment tool like the ALS Functional Rating Scale to track communication and other functional motor skills (scroll to ‘Supplementary Information’).
No Speech Issues
If your patient living with ALS has no speech issues, communication treatment may include:
- Education about how and when speech therapy can treat communication
- Introducing AAC
- Introducing message and voice banking
- Introducing basic communication compensations and strategies
- Consider trialing speech-generating devices early
Some Speech Issues
Once your patient demonstrates detectable speech issues, communication treatment may include:
- Introducing everyday AAC (alphabet board, gestures, apps, etc.)
- Trialing speech-generating devices
- Communication partner training
- Message and voice banking
- Consider palatal lift prosthesis for significantly reduced intelligibility due to hypernasality
Once your patient’s intelligibility is reduced, communication treatment may include:
- Training in more AAC. Patients will continue to use a mix of gestures, boards, and high-tech AAC
- Introducing an eye-gaze device and other alternative access methods, as needed
- Continued communication partner training
- Emergency communication (in case of medical emergency, hospitalization, natural disasters, etc.):
- Set up a fast, automatic way for the patient to alert a caregiver in case of an emergency (chime, etc.)
- Set up a Yes/No/Maybe system (eye movements, nods, etc.)
- Have rapid access communication boards (alphabet board and laser pointer, whiteboard, eye-gaze board, etc.)
ALS Dysarthria Treatment
People living with ALS typically have flaccid, spastic, or mixed spastic-flaccid dysarthria. Some also have ataxic dysarthria.
Common symptoms of dysarthria in ALS include:
- Imprecise, slurred articulation
- Slow speech rate
- Hypernasality, nasal air emissions
- Strained/strangled vocal quality
- Pitch abnormalities
- Low speech volume (due to decreased respiratory function)
The goal of dysarthria treatment in ALS is to help patients speak intelligibly for as long as possible. Do this by teaching compensations and strategies.
Dysarthria Compensations for ALS
When deciding on dysarthria compensations, think energy conservation.
What will make speaking as efficient as possible for your patient? How can they avoid repeating themselves or having to talk loudly? How can they conserve enough energy to speak throughout the day?
Here are a few examples:
- Choose a quiet space (turn off the TV, radio, fans)
- Have adequate lighting
- For breath support, sit as upright as you comfortably can
- Make sure the communication partner can see your face. This allows for lip-reading, facial expressions, gestures, etc.
- Get the communication partner’s attention before speaking
- At most, have 3 communication partners at a time so they can all see your face
- Save important conversations for when you have more energy
- Use a portable, hands-free amplifier if your voice is too quiet
- If your communication partner has hearing loss, encourage them to look into hearing aids
Dysarthria Speech Strategies for ALS
- Slower speech rate (only if speech is rushed and causes reduced intelligibility)
- Overarticulate, especially consonant sounds and the ends of words
- Say fewer words per breath
- Repeat yourself
- Spell out a word
- Signal when you’re about to start talking. Lift your hand, make eye contact, write it down
- Name the topic. Say 2-3 words to set the topic. For example, “Dinner tonight”
- Keep it simple. Use easier words and sentence structure
- Use gestures. Point, shrug, use hand gestures and facial expressions
- Signal the end. Avoid interruptions by holding up one finger. Signal that you’re finished by holding out your palm to the listener
- Use an Alphabet Board. Point to the first letter of every word that you say
(Tomik 2010, Brewer 2019)
Why Not Exercises for ALS?
Due to the pathophysiology and neurodegenerative nature of ALS, oral strengthening exercises are not recommended.
Unlike dysarthria in conditions such as stroke and Parkinson’s disease, research has shown that strengthening exercises don’t improve dysarthria symptoms in ALS.
(Beukelman 2011, Hanson 2011)
Message & Voice Banking for ALS
Preserving a patient’s voice before they lose vocal speech can help them maintain a sense of self and better connect with others.
Message banking is the process of recording a patient’s voice to capture their important messages while also preserving the sound of their voice. These messages can be practical and/or meaningful words, phrases, sentences, sounds, and stories.
Boston’s Children’s Hospital in collaboration with Tobii Dynavox offers free message banking for patients at mymessagebanking.com.
With voice banking, the patient records samples of their natural speaking voice. These samples are used to create a custom, synthesized voice that can later be uploaded into a speech-generating device.
See the ALS Association’s chart comparing voice banking services.
Message and voice banking take time and energy. It’s important to recommend them early, while patients’ voices are more intelligible and they have the energy for recording.
AAC for ALS
The AAC Pack
AAC (augmentative and alternative communication) is any form of communication besides talking that helps someone express their wants, needs, thoughts, and feelings.
Almost every person living with ALS will need AAC at some point. Throughout their journey, ensure that they always have an effective and efficient way to communicate.
Below you’ll find a guide to AAC communication treatment in different phases of vocal speech loss.
AAC with No Speech Issues
1. Introduce AAC Right Away
Even if a patient has no communication issues, provide basic AAC education from Day 1—ideally on assessment day.
Basic AAC education:
- What is AAC
- Types of AAC. Unaided (gestures, fingerspelling), aided (alphabet board, texting, speech-generating devices, alternative access such as eye-tracking, etc.)
- When & how to use AAC
- How to pay for AAC. For U.S. patients, Medicare, Medicaid, private insurance, or the VA may pay for a speech-generating device—usually every 5 years. Plan ahead for a device that can be adapted as your patient’s disease progresses in those 5 years.
For more on the process of getting insurance funding, read the ALS Association’s Communication Options for ALS.
2. Educate On When To Start Using AAC
Educate the patient and their caregivers about the signs that it’s time to start using AAC. Loss of intelligibility may happen quickly, and being prepared can help make it a smoother transition.
Signs patients need AAC include:
- Unable to fully express their wants, needs, thoughts, and feelings by talking
- They have dysarthria
- Speech rate drops below 125 WPM
- Intelligibility drops below 90%
- Experience fatigue or frustration when communicating by talking
- Willing and cognitively able to learn to communicate by means other than talking
- Have a dedicated facilitator (main communication partner and/or caregiver) who is willing and able to support their use of AAC
3. Early Device Trials
If the patient is motivated and it’s appropriate, consider beginning the process of trialing speech-generating devices. Being prepared before the loss of vocal speech may reduce overwhelm down the line.
AAC with Reduced Intelligibility
1. Introduce Everyday AAC
Once a patient has reduced intelligibility, train on how to use everyday AAC to supplement their verbal communication.
In this article, ‘everyday AAC’ means using what’s already available or easily available to the patient (e.g., affordable on Amazon or the App store).
Examples of everyday AAC include:
- Nodding, shaking head, shrugging
- Pointing (with fingers, head, or eyes)
- Fingerspelling (tracing letters in the air or on a table)
- Writing (felt-tip pen and paper, whiteboard, boogie board™, Buddha Board™, etc.)
- Alphabet board
- Needs board
- Code board
- E-Tran board
- Typing on a tablet, computer, etc.
- Text-to-speech apps or narrator programs on at-home devices
2. Communication Partner Training
The primary communication partner is often also the primary caregiver. Be sensitive as you add communication partner training to their workload.
Use your counseling and active listening skills when communicating with caregivers so they feel heard and to reduce overwhelm.
Teach the communication partner how to use the AAC being introduced. Then teach the following listener tips for communicating with someone using AAC.
- Have the conversation in a quiet setting
- Reduce distractions: turn off the TV, silence your phone, etc.
- Make eye contact often and avoid staring at the AAC screen
- Don’t interrupt
- Speak directly to the person
- Set ground rules with your loved one about finishing their thoughts
- Set ground rules with your loved one about reading over their shoulder as they write or type
- Be prepared for longer pauses. Wait at least 5 seconds for each response
- To encourage conversation, ask open-ended questions (vs yes/no questions)
- But for quicker conversations, ask yes/no questions!
- If you’re feeling lost in the conversation:
- Be honest that you’re having a hard time understanding
- Continue speaking directly to the person while making eye contact
- Confirm what you think they said by repeating it back to them
- Ask to confirm the new subject. “Are we still discussing___?”
- If either of you are feeling frustrated, move on to the next subject and come back to it later
3. Device Trials
If you haven’t already and if the patient is motivated, begin the process of trialing speech-generating devices.
Ask yourself, “Is this person able to communicate all their needs, wants, thoughts, and feelings effectively and efficiently given their current speech and available AAC?”
If the answer is no—or if you believe the answer will change to no within a few weeks due to progressing dysarthria, fatigue, etc.—then start trials!
Researching and trialing high-tech AAC options can be time-consuming. Talk with your employer about being compensated for the time you’ll spend on this necessary task.
What to consider when choosing AAC devices to trial:
- Patient’s communication needs
- How often they need the device
- How much support they need
- Motor abilities
- Trunk, neck, and arm strength and control
- Hand and finger strength and control
- Eye gaze control
- Cognitive abilities and technical skills
- Memory, attention, and executive functioning abilities
- Skills in using high-tech equipment
- Tolerance of learning new technology
- Personal preference
- Interest in technology
- Relative communication and motor strengths
- Abilities that can be used to support relative weakness
- Physical access
- Touch, laser, eye-gaze, etc.
- Vision and hearing (contrast, volume)
- Language options
- Patient’s preferred language(s)
- Funding source
- Medicare, Medicaid, private insurance, VA, grants, state telecommunication equipment distribution programs, private pay, etc.
- How often a new device is covered
- 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 (e.g. get funding)
- They show progress in speed/complexity of messages during the trial period
AAC with Loss of Vocal Speech
1. Speech-Generating Devices (SGD)
See the ALS Association’s Communication Options for ALS for the process of getting insurance funding for speech-generated devices in the U.S.
Communication treatment for a SGD may include:
- Adding messages from a message bank
- Navigating the device
- Editing preloaded messages
- Layout and size of icons
- Turn-taking and avoiding interruptions
- Navigating communication breakdowns (how to recognize when someone doesn’t understand, what to do when that happens, etc.)
- Adding/updating speech compensations and strategies
2. Alternative Access
Alternative access are tools that allow someone to independently use a device once they can no longer use their hands and body as they could before.
There are alternative access options for iPhones, iPads, androids, laptops, speech-generating devices, etc.
- Switch. A piece of equipment (lever, button, mouth tube, etc.) that controls a device
- Headmouse. Replaces a standard computer mouse to control a device
- Eye-gaze. A tool that uses eye-gaze to control a device
- Device mounts. Tools to mount a communication device for independent access
3. Emergency Communication
It’s important that patients living with ALS have an emergency communication plan in place—especially once they’ve lost vocal speech.
They’ll need a quick way to call a caregiver inside the home, call for help outside of the home, and communicate if they can’t get to their high-tech devices.
Examples of emergency communication for ALS:
- Establish how to quickly communicate “Yes”, “No”, and “Maybe” using gestures
- For example, look right for “Yes.” Look left for “No.” Look up for “Maybe”
- Alerting caregivers inside the home
- Wireless doorbell
- Call chime
- Both can be adapted to add a switch controller. Read Call Chimes & Alerting Systems In The Home by Amy&pALS for more details
- Calling for help outside of the home
- Email, text, phone, social media, etc.
- Personal emergency response system (can be adapted to add a switch controller)
- Emergency medical guidelines
- Prepare emergency guidelines and medical information for unfamiliar medical providers
- See the ALS Association’s free printable: ER Information for ALS
- Keep updated medical information on your phone
- Wearable medical information: medical wristband, lanyard
- Rapid access AAC
- Have a way to communicate, even when high-tech AAC isn’t available
- Examples include: alphabet board, needs board, boogie board, whiteboard, eye-gaze board, laser pointer mounted on a hat or headband
Printable AAC Boards & Handouts
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- Beukelman, D. et al. (2011). Communication Support for People with ALS, Neurology Research International. https://doi.org/10.1155/2011/714693
- Brewer, C. (2019). The Adult Speech Therapy Workbook. Harmony Road Design.
- Brownlee, A. (2021). Communication Options for People with ALS. The ALS Association. https://www.als.org/sites/default/files/2021-04/Communication%20Options%20for%20People%20With%20ALS.pdf
- Costello, J., O’Brien, M. (n.d.) Speech and Augmentative/Alternative Communication (AAC) in ALS. Medbridge. https://www.medbridge.com/courses/details/speech-and-augmentative-alternative-communication-aac-in-als-john-costello-meghan-obrien
- Hanson, E. et al. (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.
- Maier, A., et al. (2022). ALSFRS-R-SE: an adapted, annotated, and self-explanatory version of the revised amyotrophic lateral sclerosis functional rating scale. Neurological research and practice, 4(1), 60. https://doi.org/10.1186/s42466-022-00224-6
- The ALS Association. (2020). FYI: Suggestions and Information about Speech Changes & Augmentative Alternative Communication (AAC). https://www.als.org/navigating-als/resources/fyi-suggestions-and-information-about-speech-changes
- Tomik, B. et al. (2010). Dysarthria in amyotrophic lateral sclerosis: A review. Amyotrophic Lateral Sclerosis., 11, 4-15. https://doi.org/10.3109/17482960802379004