Aphasia after a stroke, and how to talk when the words will not come

A woman who cannot produce the word for tea still knows that she wants tea, and still hears the tone somebody takes with her. When a nurse turns to you and asks what your mother would like while she is sitting in the chair beside you, it is fair to say that she can answer if she is given a moment.

Communication is screened in hospital within 72 hours of a stroke under the NICE guideline on stroke rehabilitation in adults, so the ward team should have flagged any difficulty before discharge. What the weeks after that look like at home is covered in the first weeks home after a stroke, and the wider picture of recovery is on the stroke recovery care page.

Dysarthria and apraxia of speech are not aphasia. The Stroke Association reports that about one in four people have dysarthria directly after a stroke, and another one in four have it together with aphasia. The NHS page on dysarthria describes it as difficulty speaking because the muscles used for speech are weak, which is a different thing from difficulty with the words themselves.

The difference changes what you do. Slurred speech from weak muscles needs a quiet room and patience while a sentence is finished. Difficulty understanding needs your sentences to get shorter. Either way the practice happens between therapy visits, as it does with walking and arms, which rehab at home after a stroke sets out in full.

If a word will not come at all, the Stroke Association suggests asking the person to spell it, write it, draw it, point to it, or give the letter it begins with, and it advises allowing silences and trying not to interrupt. Fatigue after a stroke makes language harder, so an afternoon conversation is not always a fair test of what somebody can do, and on a bad day it is reasonable to stop and sit together instead.

The Stroke Association, the UK charity for stroke survivors and their families, publishes information and communication resources for aphasia, including material written to be read by somebody who has it. The NHS page on aphasia is worth sending to the people who visit.

1. 1

   Screening in hospital

   Within 72 hours

   NICE says people should be screened for communication difficulties within 72 hours of the stroke starting, and referred to a speech and language therapist when something is found. If you can see a problem and nobody has mentioned it, say so before discharge.
2. 2

   Assessment, then goals set with your relative

   The first weeks

   The therapist works out which difficulties are present and how severe each is, then agrees goals. Ask to be in the room, because a goal the family understands can be carried on through the week.
3. 3

   Sessions, and practice between them

   Weeks to months

   The NHS says therapy may be one to one or in a group, face to face or online, and that it usually involves the people around you, including anyone who helps with care.
4. 4

   Communication training for you

   Ask for this by name

   NICE recommends offering communication skills training, such as slowing down, not interrupting and using props, gestures or drawing, to people who regularly talk with someone with aphasia. Ask whether a carer can attend too.
5. 5

   The six-month review, and after it

   6 months, then yearly

   If communication difficulties are still there at the six-month or annual stroke review, NICE says the person should be referred back for assessment and treatment if they would benefit. Being discharged once does not close the door.

NICE sets a standard for rehabilitation after a stroke of at least three hours a day on at least five days a week, covering physiotherapy, occupational therapy and speech and language therapy together. The number gives you something specific to ask about at a review. If NHS therapy has finished and you want to add to it, speech and language therapists also work independently, and the Association of Speech and Language Therapists in Independent Practice keeps a directory you can search.

Continuity matters more here than in most care, because every new carer starts the learning again, and the same carer every visit explains how to arrange it. The quality to look for is patience and a willingness to be taught, which no certificate shows. You can search for carers near you and compare their rates and read what each one says about their own experience. Anything a carer says about stroke work is their own account on their profile, and it is for you to ask about: PrimeCarers checks identity and right to work, runs an enhanced DBS on the Update Service and interviews every carer online, and carers hold insurance for their work, but we do not check qualifications, training or references. Questions to ask at interview covers the rest.

Hourly visits on PrimeCarers run from £18 to £25 an hour with our fee included, against £28 to £35 at an agency, where the rota may send a different person each time. Put the communication notes into the care plan, which writing a care plan together explains, and go through them on the first morning, which preparing for your carer's first day covers. If the help needed is closer to round the clock, live-in care after a stroke explains that, and a council care needs assessment is free to ask for.