The Importance of Increasing the Community Awareness of Aphasia

According to The Australian Aphasia Rehabilitation Pathway (AARP), 15 million strokes occur each year worldwide, and up to 38% of stroke survivors have aphasia. The effects of aphasia create significant implications for the quality of life and functioning of an individual. The AARP’s set of care standards for aphasia management, allows speech pathologists to create person-centred evidence based services for people living with aphasia.

In the lead-up to the 4th Annual National Acquired Brain Injury Conference, taking place on 8-9 November at the Royal Rehab, Ryde, Sydney, we had the chance to speak to Colleen Kerr, Director, Optimal Speech Pathology about the challenges and competencies of people living with aphasia. Colleen is co-presenting alongside three consumers Sean O’Brien, Dianne Finch and Bernard Chandra, who have also kindly contributed to this interview.

Informa: What is Aphasia, and why does it happen?

Colleen: Aphasia is a common consequence of stroke, brain cancer and brain injury. Aphasia is a communication difficulty caused by damage to the language centres of the brain and can impact on the ability to understand, speak, read or write. Aphasia has far reaching impact on quality of life, relationships and employability.

Informa: How is Aphasia treated?

Colleen: There are many treatment options for Aphasia, and Australia is fortunate in having an active Aphasia community involved in developing and evaluating treatment options.

We have a set of best practice standards known as the Australian Aphasia Rehabilitation Pathway 1 that can be used to access guidelines related to when people should access therapy, how often they need to be seen, which approaches are most relevant and what service options can be considered.

Treatment may vary from an intensive Speech Pathology program involving constraint-induced therapies to telehealth or computer assisted treatments delivered to remote areas of Australia. The Aphasia community comprises researchers, clinicians, consumers and volunteers and all may have a role to play in guiding treatment options.

Informa: Can you explain some of the challenges for individuals living with Aphasia?

Colleen: No two people with Aphasia are the same. There is obviously a severity continuum with some people experiencing only minimal hesitation when speaking but nevertheless finding it hard to return to a job as a teacher or salesperson where there is a strong focus on communication.

Others may experience far more restricted communication options and attending even a routine medical appointment can result in frustration and feelings of exclusion. The severity of the aphasia does not necessarily predict quality of life – we have learned a great deal about other factors in resilience and adjustment to life with aphasia.

Informa: What support is required for individuals living with Aphasia?

Colleen: All aspects of Aphasia Rehabilitation are being actively researched in Australia and this includes how we can enable people with Aphasia to participate fully. This means we have to reduce communication barriers in our world, for example, by moving towards aphasia-friendly appointment letters (Parr et al, 2006) 2 or helping people learn how to use supportive communication techniques.

An important part of our work is in assisting partners of people with aphasia in facilitating communication (Simmons-Mackie et al, 2010) 3.

People with aphasia tell us that they want professionals, friends, family and colleagues to understand that Aphasia is a communication difficulty, not a problem with intelligence. People with aphasia have also been shown to greatly benefit from involvement in Aphasia groups and in Australia these supports are well-developed (Lanyon et al, 2013) 4.

Informa: What advice would you give about the best way to communicate with individuals with Aphasia?

Colleen: The best advice is to find out what works for the individual. Every person is different. In general, supporting comprehension may mean talking with more pauses between information elements, using short written notes or making sure that only one person is talking at a time.

The Australian Aphasia Rehabilitation Pathway provides some more specific guidelines on how to support comprehension of written information (Rose et al 2003) 5. Supporting expression may mean allowing the person time to think of their answer, offering to help with slow yes-no questions if they are stuck – or being comfortable to learn about whatever way the person with aphasia communicates.

Informa: You are presenting at the 4th Annual National Acquired Brain Injury Conference alongside three consumers, Sean O’Brien, Dianne Finch and Bernard Chandra. Without giving too much away, what do you hope the attendees will take away from your presentation, ‘TAAD: The Aphasia Awareness Delegation. Three Rotarians, Three Brain Injury Recoveries, One Message’?

Colleen: We hope that people will begin to consider the needs of people with aphasia in their particular circumstances. We hope that they will meet three people with different experiences of aphasia who have all adjusted well, and are committed to increasing public awareness of the aphasia experience.

We hope that attendees will gain a longer term view of both the challenges and competencies of people living with aphasia – and perhaps help us identify further opportunities for increasing community awareness of aphasia.

Informa: What elements of the 4th Annual National Acquired Brain Injury Conference taking place on 8 – 9 November 2016 at the Royal Rehab, Ryde, Sydney, are you most looking forward to, and why?

Colleen: It will be interesting to hear of the transition to NDIS, particularly in relation to self-directed services.

For more information about detailed conference agenda and to register, please visit the 4th Annual National Acquired Brain Injury Conference website.

1 The Australian Aphasia Rehabilitation Pathway http://www.aphasiapathway.com.au  

2 Parr, S., Pound, C., & Hewitt, A. (2006). Communication access to health and social care services. Topics in Language Disorders,, 26, 189–198.

3 Simmons-Mackie, N., Raymer, A., Armstrong, E., Holland, A., & Cherney, L., R. (2010).Communication partner training in aphasia: a systematic review. Archives of Physical Medicine and Rehabiliation, 91(12), 1814-1837.

4 Lanyon, L. E., Rose, M. L., & Worrall, L. (2013). The efficacy of outpatient and community-based aphasia group interventions: a systematic review. International Journal of Speech Language Patholology, 15(4), 359-374. doi: 10.3109/17549507.2012.752865

5 Rose, T., Worrall, L., & McKenna, K. (2003). The effectiveness of aphasia‐friendly principles for printed health education materials for people with aphasia following stroke. Aphasiology, 17(10), 947-963. doi: 10.1080/02687030344000319