Australian-first handbook guides stroke survivors living with aphasia

Stroke survivors who are diagnosed with language and communication disorder, aphasia, will now have access to a tailored resource instead of failing to receive appropriate information after diagnosis.

Stroke Foundation and Australian Aphasia Association this week launched an Australian-first Aphasia Handbook, designed specifically for stroke patients with aphasia, ensuring they have the information they need after this life-changing diagnosis.
36-year-old Adelaide man, Peter Dempsey, who survived a stroke at the age of 4 and is living with aphasia, says information in the early recovery stage is often lacking and can make an already difficult time more frustrating.

“After my stroke, my family and I were left in the dark and the information that was available didn’t apply to me or fit my circumstances.”

Peter played a key role in developing the handbook which is designed to address the specific issues and needs of stroke survivors living with aphasia as well as their families, carers and friends.

It has information about aphasia, assessment and therapy, as well as communication tips and tools.

“The right information given to you as early as possible creates a framework for you to go on and something to work with. It’s the best way to learn about your aphasia and start on the path to recovery,” Peter said.

Stroke is the most common cause of aphasia and impacts around 140,000 Australian survivors of stroke.
Aphasia is a communication disability resulting from injury to language processing networks in the brain. It can affect talking, comprehension, reading, writing, spelling, using numbers and gestures or texting and typing.

Stroke Foundation National Manager of StrokeConnect Information, Jude Czerenkowski, says this Australian-first handbook will go a long way in supporting and empowering stroke survivors living with aphasia.

“Before the Aphasia Handbook, there wasn’t any information that catered specifically to stroke survivors living with aphasia. Aphasia caused by stroke creates unique and specific challenges that can’t be covered by a one-size-fits-all approach. Not having the information you need makes the road ahead much harder than it needs to be so we wanted to change that.”

Australian Aphasia Association Chair, Professor Deborah Hersh, says this will help stroke survivors living with aphasia understand what’s happened to them after what’s often a traumatic experience.

“Stroke is a shock – and people who have a stroke need information. They need to know what has happened to them. When stroke causes aphasia it can be very hard to ask for that information or understand it, especially if it is not aphasia friendly.”

“Up to now, there has been a gap in information for people with aphasia after stroke across Australia. The Aphasia Handbook will be an important source of accessible, aphasia friendly information which will be available to everyone with aphasia after a stroke.” Professor Hersh said.