New research project aims to raise awareness of aphasia

A new research project run in partnership between the Irish Heart Foundation and the National University of Ireland, Galway (NUI Galway) aims to raise awareness and understanding of aphasia – a highly distressing and hidden side effect of stroke.

Aphasia is an acquired language disorder which affects approximately a third of all stroke survivors.

Despite the relatively high prevalence of aphasia post stroke (1 in 3 ), research has shown that there is a very low level of awareness and understanding of the condition among the general public and this is what the NUI Galway /Irish Heart Foundation partnership aims to improve.

Aphasia predominately affects people’s ability to communicate as it causes difficulty with reading, writing, spelling, comprehension and expression or ability to speak. Studies have shown that people with aphasia post stroke are at a much higher risk of developing depression and low mood than stroke survivors without the condition.

The project is being co led by Dr Ruth McMenamin, a lecturer in speech and language therapy at NUI Galway, and Martina Greene, Support Group Co Ordinator with the Irish Heart Foundation, and the members of the Irish Heart Foundation’s Stroke Support Group in Ballinasloe, Co Galway.

Entitled Aphasia H.U.R.T.S (an acronym for all of the skills that can be affected by aphasia: Handwriting, Understanding, Reading, Talking and Spelling) the NUIG/IHF partnership was one of three projects to recently receive funding under the Community Engaged Scholars Programme (CES-P), at NUI Galway.

The aim of the CES-P is to support the development of partnerships between researchers and community organisations interested in conducting research to improve the health of their community and driven by public and patient involvement (PPI) principles. Best summarised by the slogan ‘Nothing about us, without us,’ PPI means that the voice of the public or patient guides and influences all stages of research, and that those likely to benefit from new treatments or services arising from research are involved in the decision-making that leads to their development. This is the first roll out of the CES-P in Ireland and it is funded by the Health Research Board.

Dr McMenamin explained that the Aphasia H.U.R.T.S was a pilot project where people living with aphasia in the West of Ireland, will be involved as co researchers to decide on ways to raise public awareness and understanding of aphasia in Ireland.

“Our plan is to ask people [living with aphasia] what we need to do to improve people’s knowledge and awareness of aphasia. We want to do more than just increase awareness we want to increase knowledge,” Dr McMenamin explained

Up to 10,000 people in Ireland are diagnosed with stroke every year and up to a third of them will experience aphasia.

It is important to remember that it is a chronic condition so that means there are a lot more people, than those newly diagnosed, living in the community with aphasia, Dr McMenamin said.

According to Dr McMenamin, aphasia can range from mild to severe. For example, she explained that some people will have difficulties with all aspects of communication such as understanding, speaking, reading, writing and spelling, while others may only have difficulty finding some of the words they want to say.

“Communication networks break down. It is much harder to talk to someone if they can’t get the words that they want to talk back to you, to answer your question or initiate conversations ….one of the most devastating effects is that it impacts conversations and conversation is fundamental to relationships. There is lots of evidence that people with aphasia post stroke are at higher risk of things like depression and low mood compared to stroke survivors who don’t have aphasia,” she added.

Martina Greene, Support Group Coordinator, Irish Heart Foundation said, “People living with aphasia are one of the most marginalised groups in our communities. Our goal is to work with people living with stroke and aphasia to understand their experiences and promote inclusion by identifying how we can improve public awareness and understanding of the condition.”

This research is funded by the Health Research Board through the NUI Galway Public and Patient Involvement Ignite Programme.

The Ballinasloe Stroke Support group takes place every Wednesday in the East Midlands Cancer Support Centre, Ballinasloe, from 2 to 4pm. All are welcome.