Every 19 minutes, someone in Australia will have a stroke. One-third of those stroke survivors will have aphasia, a condition affecting their ability to communicate – to speak, understand, read, write, use numbers and gestures. More than 140,000 Australians are living with aphasia – and without timely intervention, aphasia can lead to concerning psychosocial outcomes, including social isolation, depression and a poorer quality of life.
“We use language every day without even thinking of it – when we send an email, listen to a podcast, or talk to a friend,” says speech pathologist and NHMRC Research Fellow Associate Professor Sarah Wallace. Her research focuses on communication disabilities in ageing and post-stroke aphasia, emphasising qualitative, participatory research methods in partnership with people who have lived experience of communication disability.
“People with communication difficulties can find it more difficult to have a say about matters that concern them. When people living with aphasia cannot be heard, it’s difficult for them to connect with the help and support they need. This is why loss of language is so devastating.”
Difficulties often persist long after stroke
Wallace explains that when people with aphasia cannot say the words they want to say, or have difficulty understanding others, day-to-day life can be overwhelmingly difficult. For many people with aphasia, these difficulties can persist long after their stroke.
“About one-third (27%) of people who have a stroke will have aphasia, a 2025 study by PhD candidate Marissa Stone has found . Of those people with aphasia, around two-thirds will continue to have chronic communication difficulties a year later.
“Our research has found important differences in the care that people with aphasia receive in acute hospital settings. We found that patients with aphasia were less likely to be assessed for mood impairment, receive risk factor education or be involved in care plan development.”
People with aphasia were also more likely to have a more severe stroke, more in-hospital complications and in-hospital deaths. They were less independent at discharge, less often discharged home, and more likely to be discharged into residential care.
“This combination of poor outcomes and differences in care quality can result in significant unmet needs.”
Optimising the lives of people living with aphasia
Wallace leads a large research team, LexLab — the Lived Experience Lab — within the Queensland Aphasia Research Centre (QARC; https://shrs.uq.edu.au/qarc). QARC is the first centre of its kind in Australia, dedicated to optimising the lives of people living with aphasia through research, service, and partnerships.
Curiosity, sparked
It was working with people with aphasia in Canberra that sparked Wallace’s interest in aphasia.
“As a speech pathologist in Canberra, I witnessed firsthand the extent of the challenges that people with aphasia experience. Because aphasia is a communication disability, it can be difficult for those who live with it to explain the condition to others or advocate for themselves.”
“In Canberra, I worked with people with aphasia from when they first had a stroke to many, many years later when they had returned home to live in the community. One of the highlights of my time in Canberra was working with the community to host the 2006 Australian Aphasia Association Conference. The AAA is the national peak body and advocacy organisation for people living with aphasia in Australia. During the conference people with aphasia gave presentations and shared their stories and experiences. This really brought home to me just how important it is for people with aphasia to have the opportunity to connect and be heard.”
Co-designing better ways of living well with aphasia
In the years since, co-designing better ways to live well with aphasia has become central to Wallace’s work.
Wallace and her team work with people living and working with aphasia to co-produce interventions (such as technology and therapies), systems and standards that improve quality of care and outcomes for people with aphasia. Key to this is working in partnership with people who have lived experience of aphasia – as well as their families, friends, clinicians and community members.
So far, this work has included co-design of technology such as the Aphasia Research Library, the AphasiaFit app, and the CommuniKey browser extension.
Wallace has also led work to co-create systems and standards for measuring quality of aphasia care and outcomes, such as the ROMA core outcome set, and the MEASuRES minimum dataset. Supporting the development of PhD candidates is a key role for Wallace. These projects have spanned topics including returning to driving with aphasia, raising aphasia awareness, developing outcome measures, and establishing priorities for aphasia services.
“One project that we are really excited about is an international project to raise awareness of aphasia. Dr Claire Bennington co-designed an international aphasia awareness campaign during her PhD. It’s the first campaign of its kind – built by people living with aphasia, shaped by their stories, and driven by a shared vision for change. We are now working to translate our campaign design into action. The Tavistock Trust for Aphasia has offered us AU$72,958 in funding to support this, if we can match it with an additional AU$72,958. So, this week, in Stroke Week, we are launching a campaign to ‘Match the Momentum’. We have set up a JustGiving page to help raise the additional funds and we are encouraging the community to get behind this initiative: https://www.justgiving.com/campaign/qarc-uq-aphasia-awareness
Accessible and meaningful information through co-designed research library
Wallace and her team co-designed the Aphasia Research Library (https://www.aphasialibrary.org), an online template and searchable database. The Aphasia Research Library supports information access by generating user-friendly research summaries that reflect individual content and communication preferences.
“It was our goal to create an inclusive, user-friendly resource that empowers people with aphasia to access and understand research that is relevant to their lives and will inform their treatment decision making,” Wallace said.\
Wallace and her team are currently seeking funding to expand the library to suit the needs and preferences of all people living with stroke.
When it’s measured, it can be monitored and improved
Wallace leads the MEASuRES project, aimed at establishing routine measurement of important information about who people with aphasia are; the quality of care they receive in hospital, the treatments they receive, as well as the language, communication, emotional wellbeing and quality of life outcomes they experience before and after treatments.
“My interest in this area began with my PhD. I wanted to improve the efficiency and relevancy of aphasia research by developing a core outcome set (a minimum set of outcomes that should be measured in aphasia treatment studies). We worked with researchers, clinicians and people living with aphasia around the world to work out which outcomes were most important to measure. We are now looking at this in hospital environments and trying to collect consistent data and outcomes that help us understand where gaps in care exist and the factors that might improve someone’s outcomes.”
So far, the team has developed a new set of quality indicators for aphasia care and is testing a minimum dataset in partnership with five health services: Metro North Health (QLD), Monash Health (VIC), St Vincent’s Hospital Melbourne (VIC), Sir Charles Gairdner Osborne Park Hospital Group (WA), and Fiona Stanely Fremantle Hospitals (WA). Data collection is well underway, with nearly 70 participants already contributing valuable information.
AphasiaFIT app for managing recovery at home
Wallace, together with her co-investigators at Queensland Aphasia Research Centre, including Mr. Gopal Sinh who has aphasia, have designed a smartphone app to support people living with aphasia in managing their own recovery at home.
Co-designed with people with aphasia, families and clinicians, the app connects users in a private social network, supporting ongoing, individualised care.
Much like a ‘fitness tracker for communication’, it supports goal setting, links goals, therapy and outcomes, and offers visual graphics of progress, and daily wellbeing check-ins via prompts. The app is in prototype form and will be further developed as part of a new project.
Wallace says a highlight of this project was travelling to Perth with Gopal to co-present the research outcomes at the National Australian Aphasia Association Conference and Aphasiology Symposium of Australasia.