For families

Someone you love has lost their speech. Here is what to do.

If you are reading this at two in the morning after a bad day in a hospital: you are not behind, and you have not missed anything. Almost nothing here needs money, and nothing here needs our app.

What to do right now, tonight

Six things, in order. All of them are free and none needs an app.

1. Talk to the person, not about them

   Stand where they can see you. Use their name. Say what is happening. People in this situation describe being talked over, at length, by doctors and relatives standing at the end of the bed as one of the worst parts of the whole experience. If a nurse asks you a question about them, look at them first.

2. Switch to yes and no questions

   Open questions like “what do you need?” are extremely hard for someone who has just lost language. “Are you in pain?” then “is it your head?” works. Agree a clear signal for yes and for no — a thumb, a blink, a squeeze — and tell every nurse on the ward what it is.

3. Write the key word down, big

   Not sentences. One or two important words, in large letters, on paper, where they can see it. Writing down the key word helps someone with aphasia follow a conversation even when speech alone is too fast. It also gives them something to point at.

4. Wait longer than feels natural

   Then wait again. Ten, twenty, thirty seconds of silence is normal and is not a sign of confusion. The most common complaint from people with aphasia is that everyone jumps in and finishes the sentence for them.

5. Make a pointing sheet

   One sheet of paper, ten items, big letters, one per line: pain · toilet · water · too hot · too cold · tired · nurse · phone · my glasses · call my family. Tape it where it can be reached from the bed. Families invent this independently in every stroke and ICU forum, because it works immediately, costs nothing and never runs out of battery. Keep it even after you have an app.

6. Ask the ward for a speech and language referral, in writing

   Use the exact words: “I would like a referral to a speech-language pathologist for a communication assessment.” Ask for the date it was made. In the UK the title is speech and language therapist. This is the single highest-value thing you will do this week.

Can they still understand me?

Very often, yes — far more than they can say.

Aphasia is damage to the language system. It is not damage to intelligence, memory of who you are, personality, or judgement. People describe lying in a hospital bed following every word of a conversation about them and being unable to interrupt it. One phrase turns up again and again in stroke and ALS communities, written on a medical bracelet: Can't talk — understands!

So: assume competence. Speak to them as the adult they were three weeks ago. If comprehension really is affected, a speech-language pathologist will tell you, and will tell you exactly how to adapt.

How to talk to someone with aphasia

These techniques come from Supported Conversation for Adults with Aphasia, a method developed by the Aphasia Institute in Canada and tested in a controlled trial. The idea behind it is simple: the person's competence is intact, and the conversation partner's job is to reveal it.

Getting your message in

• Short sentences. One idea per sentence.
• Slow down, but keep your normal adult tone.
• Write down the key word as you say it.
• Use gesture, pointing, and things in the room.
• Pause between sentences instead of running them together.

Getting their message out

• Ask yes and no questions, one at a time.
• Offer a written choice: write two or three options and let them point.
• Give them a pen. Some people can write a word they cannot say. Some can draw it.
• Accept a gesture, a drawing, or a sound as a real answer.
• Let them tell you when you have got it wrong.

Check that you got it right

This step is easy to skip and it is the one that matters. Say back what you understood, and ask: “Have I got that right?” Guessing wrong and moving on quickly is how people end up with the wrong meal, the wrong visitor, and the belief that talking is not worth the effort.

Should you finish their sentences?

Ask. Some people find it an enormous relief. Others describe it as the most humiliating part of their day, especially when they were most of the way there. Ask once, plainly — “do you want me to guess, or do you want time?” — and then do what they said, every time.

Free tools on the phone you already own

Before buying anything, use these. They cost nothing and they are available immediately.

If the voice loss is temporary

Throat or mouth surgery, a laryngectomy, a tracheostomy, a broken jaw, intubation in intensive care, a paralysed vocal cord, cancer treatment. Speech may come back, in weeks or in months.

Two things are different in this situation:

• The hands usually work perfectly. Typing is not the problem. Speed and social awkwardness are. Free type-and-speak tools like Live Speech often cover it completely.
• There is often a known date. If surgery is scheduled, you have a window beforehand to record the voice. See the voice banking section — it applies to head and neck cancer just as much as to ALS, and some free programmes explicitly include mouth cancer and laryngectomy.

Do not spend hundreds of dollars on a system designed for permanent, progressive loss if the plan is to be talking again by Christmas. Start with what is free.

Getting professional help

1. Ask for a speech-language pathologist

   In hospital, ask the ward. After discharge, ask the family doctor or the stroke or neurology team for a referral. In the UK, ask for a speech and language therapist.

2. Ask specifically about communication, not only swallowing

   In acute wards, speech-language pathologists are often pulled toward swallowing assessments, which are urgent and life-saving. You may need to say the word communication out loud, more than once.

3. Ask about a communication aid trial

   The phrase to use is: “can we trial a communication aid?” A trial means the person tries a tool for a set period while the clinician records how it goes. That record is what funding applications are built from later.

4. Ask about an equipment loan programme

   For ALS and motor neurone disease especially, loan closets lend equipment free. See the ALS equipment section.

What things cost: devices compared with apps

This question is asked constantly and answered badly. Here is the honest shape of it.

Two things worth knowing before anyone tells you otherwise:

• Buying an app does not disqualify anyone from a funded device. A funded claim is assessed on the person's needs. Many clinicians use an app deliberately as a bridge while the funding claim is in progress, precisely because the paperwork takes months and the person needs to talk now.
• Subscriptions are a problem for funding. Assistance programmes generally reimburse a purchase, not a monthly charge. This is one reason people in these communities react so strongly to subscription pricing.

Where this app fits, honestly

Aloud is not on the App Store yet. When it is, it will be free, with everything included, and it will do one specific thing: the person taps two or three words, and their iPhone offers three complete sentences to choose from. See exactly what that looks like.

That is worth having when typing whole sentences is too slow or too tiring, which is the usual situation after a stroke. It is worth much less if the person types comfortably — in which case free options may serve them better, and you should use those.

It will not be right for everyone:

• It needs a fairly recent iPhone for the sentence feature. See the device table.
• It is text-based. Someone who cannot read at all will need a different kind of tool, usually with photographs, chosen with a clinician.
• It cannot be used by eye gaze or a head pointer in the way a mounted device can.
• It is for a person who can tap a screen, or use iPhone Switch Control or Voice Control.

Looking after yourself

One thing that turns up in every stroke and ALS community, in almost the same words: the loneliness is on both sides. The person who cannot speak becomes isolated. So does the person doing the talking for them, the phone calls, the appointments and the explaining.

Two practical suggestions. Tell three friends specifically what would help, because “let me know if you need anything” never converts into help. And find one group of people in the same situation — the organisations below all run them, and they are free.

Organisations worth contacting

• National Aphasia Association (United States) — plain explanations, support groups, and an aphasia identification card you can print.
• Aphasia Institute (Canada) — the source of the conversation techniques above, with free downloadable communication tools.
• Stroke Association accessible information guidelines (United Kingdom, PDF) — how to write anything so that a person with aphasia can read it. Useful for letters, rotas and household notes.
• American Speech-Language-Hearing Association: Aphasia — the clinical reference, readable by families, and useful when you want to check what someone has told you.
• ALS Association certified centres and Team Gleason — for ALS and motor neurone disease, including equipment.