"I'm Not Mad, I'm Not Deaf": What People with Aphasia Want Hospital Teams to Know
After her stroke, one woman found that her specialist spoke too quickly, raised his voice when she was slow to answer, and turned to her husband instead of her. So she practised typing on her iPad. Then she typed "I'm not mad and I'm not deaf" and carried it to his office to show him.
That moment comes from a 2024 study in the journal Disability and Rehabilitation. It's one short sentence, but it really captures what hospital care can feel like when you have aphasia.
First, what is aphasia?
Aphasia is a language impairment, most often caused by a stroke or brain injury. It can affect speaking, understanding, reading and writing. People with aphasia know what they want to say; the words just don't come out the way they mean them. Aphasia affects approximately one in three people in hospital after a stroke.
About the study
Researchers at La Trobe University in Melbourne, Australia, wanted to hear directly from people with aphasia about communicating with hospital staff. They held a focus group with four people living with aphasia and two family members.
The participants had their strokes several years before the group took place. Their aphasia ranged from mild to severe. The facilitator, an aphasia researcher who previously worked as a speech pathologist, used supported conversation strategies like writing key words, drawing and gesture so everyone could take part.
What people with aphasia told the researchers
The team identified five themes from the conversation.
Aphasia makes it hard to communicate. From the first moment with paramedics, participants struggled to get their words out or to understand what was said. One participant described having an adult brain but the communication of an 18 month old.
Hospital staff focused on medical status. Participants described many checks and tests, but very little real conversation with them as people.
People didn't get the help they needed to improve. Once the medical emergency was over, participants and families felt left without guidance on what to do next. One family was shown a brain scan and told it was a serious injury, which felt like hope being taken away.
Staff lacked the skills to communicate with people with aphasia. Participants recalled staff talking louder, saying "come on, you can say it," or speaking to a spouse instead of the patient. Some informal tests, like a doctor pointing at a watch with no explanation, were confusing. Participants worried these quick tests were shaping decisions about their rehabilitation.
Staff can make a real difference. When staff used simple supports, communication worked, and it meant a lot to people.
Not every experience was negative. One participant with severe aphasia and her husband said they were satisfied with the communication in hospital. The researchers included this as a valid and different point of view.
The moments that worked
The good moments in this study were often small and simple.
A schedule on the wall. One participant found it really helpful to see the therapy timetable posted in the rehab gym. She could see what was happening each day without needing it explained.
Pointing instead of talking. When catering staff offered tea or coffee, a participant could point to her choice and be understood.
Gesture and choices. One participant remembered trying to ask for pain medication for a headache and not being understood. She said that if a nurse had simply asked "Have you got pain?" while acting it out, she could have answered. She called this "charades" and felt every member of the team should do it.
The researchers also found something important in what was missing. None of the participants remembered hospital staff using writing, gesture or checking back to confirm they understood. These strategies are not complicated, but they weren't being used.
If you or someone you love is in hospital with aphasia
Family members in this study often became the go-between for the person with aphasia and the hospital team. That role matters, and you can use it to keep your loved one at the centre of their own care.
Let staff know about the aphasia right away. A short written note at the bedside can help: "I have aphasia. I understand more than I can say. Please speak slowly and give me time."
Ask staff to talk to the person, not just to you. You can gently redirect: "Can you ask her directly? I'll help if she needs it."
Keep a pen, paper or tablet nearby. Written key words, simple drawings and yes/no choices can make a big difference.
Ask what a test is for. If a doctor or therapist gives a quick test, it's okay to ask what it's checking and how the results will be used.
Ask about next steps. Ask who the speech-language pathologist is, what support is planned after discharge, and how to keep practising communication at home.
What this means for healthcare teams
Participants were clear that communication isn't only the speech-language pathologist's job. They expected every member of the team, from doctors to nurses to therapists, to adjust how they communicate. The authors also point out that communication is a safety issue. Research they cite shows that people with communication disabilities are at higher risk of preventable problems in hospital, including falls.
A few simple habits can change the experience:
Speak to the person directly, at a normal volume and a slower pace.
Write down key words as you speak.
Use gesture, pictures and objects to support what you say.
Offer choices the person can point to.
Check back to make sure you understood: "So you're saying your head hurts?"
Explain why you're asking a question or giving a task before you start.
The researchers also noted that training alone isn't enough. Hospitals need systems that give staff the time and tools to communicate well.
A note on hope
One of the hardest parts of this study to read is how quickly some participants felt their potential was decided. A brain scan or a single quick test left families feeling that the door to improvement had closed.
We want to be clear: a hospital stay is only the beginning. Many people with aphasia keep building their communication skills for years after a stroke, and progress looks different for everyone. Your goals matter, and they should shape your therapy.
A few things to keep in mind
This was a small study with six participants from one city in Australia, and the focus group took place in 2016. The authors note there is no evidence that these experiences have improved since then, and they suggest the findings may still reflect hospital care for some people today. People from different cultural and language backgrounds, or from rural areas, may have different experiences.
How Evergreen can help
At Evergreen, we work alongside adults living with aphasia and the people who support them. Our therapy is built around your goals, whether that's having a conversation with your grandkids, returning to a hobby, or speaking up at your next medical appointment.
If you or someone you love is living with aphasia, we'd love to talk. Email us at info@evergreen-therapy.ca to get in touch.
Your goals. Our clinical insight. Your life.
Reference
Carragher, M., Steel, G., O'Halloran, R., Lamborn, E., Torabi, T., Johnson, H., Taylor, N. F., & Rose, M. L. (2024). Aphasia disrupts usual care: "I'm not mad, I'm not deaf" – the experiences of individuals with aphasia and family members in hospital. Disability and Rehabilitation, 46(25), 6122–6133. https://doi.org/10.1080/09638288.2024.2324115
