7 communication tips for ALS caregivers
Last updated July 23, 2025, by Susie Strachan
Fact-checked by Patricia Silva, PhD
When you’re caring for someone with amyotrophic lateral sclerosis (ALS), your conversations can start to change. Your loved one’s speech may become slower, harder to understand, or eventually disappear altogether.
It is estimated that 80% to 95% of people with ALS experience speech problems at some point, making it harder to express their needs, thoughts, and emotions.
Utilizing ALS communication strategies, such as slowing down a conversation, using gestures, or learning to use assistive tools, can enhance your loved one’s ability to express who they are. These strategies can also provide essential support for ALS caregivers navigating these changes.
1. Be patient and present
Effective communication is not just about words; it’s also about the small back-and-forth moments that make conversation feel natural. Giving your loved one space and time to communicate respects their voice and fosters a more patient and present environment.
Show you’re engaged by maintaining eye contact, facing them directly, and using cues like nodding, smiling, or saying “I’m listening.” Let pauses happen instead of rushing to fill the silence.
2. Set up communication tools early
Planning ahead can make a big difference. Establishing a communication system before speech becomes more difficult allows your loved one to stay engaged and express themselves as fully as possible.
To help do this, you might:
- explore speech aids for ALS such as yes/no cards, letter boards, tablet apps, speech-generating devices, or other assistive technologies
- record familiar phrases early using voice or message banking
- support with setup, charging, updates, and troubleshooting
- save personalized messages like “I love you,” “That’s funny,” or “I’m tired” in their preferred format
- seek out a speech therapist to recommend tools and teach you both how to use them.
These tools may evolve as your loved one’s needs change, so stay open to trying new approaches as needed.
3. Use simple, clear language
As speech muscles weaken, even short conversations can take effort. You can ease communication by speaking in short sentences with one idea at a time, avoiding complex questions, and pausing between thoughts to allow time for responses.
It also helps to turn off background noise like the TV or fans, and to avoid multitasking while you’re talking.
4. Check for understanding
If you don’t understand something, say so. Being honest helps you stay connected. Try asking yes/no questions, repeating what you think you heard (“You’re asking about lunch, right?”), and using relaxed, neutral language.
Staying calm and open creates space to work through misunderstandings.
5. Respect nonverbal cues
When speech becomes limited, other nonverbal communication signals may become more important.
Watch for:
- eye movements such as looking toward objects or blinking
- facial expressions such as smiles, frowns, and raised eyebrows
- gestures such as pointing, thumbs up/down, head nods, or shakes
- body language shifts such as turning away, slumping, or tensing.
6. Adapt as the disease progresses
As ALS progresses, communication needs may change. What worked well a few months ago may now be tiring or difficult.
ALS caregiver tips for staying flexible include:
- regularly reassessing tools and strategies
- asking your loved one if they want to try something different
- watching for signs of fatigue or frustration during conversations
- adjusting expectations, as some days will be easier than others.
7. Support emotional communication, too
Your loved one will want to share memories, humor, or affection in conversation.
You can help by:
- asking open-ended questions when possible, such as “What are you thinking about?”
- creating quiet time without pressure to talk, as just being together can say a lot
- keeping augmentative and alternative communication (AAC) tools nearby during emotional moments
- using touch gently, as a hand squeeze or shoulder rub can speak volumes.
Staying connected as speech changes may not always be easy, but it is possible. With empathy, flexibility, and preparation, you can help your loved one express themselves in meaningful ways, whether through words, gestures, or shared silence.
ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
