The Public Awareness of Aphasia Around the World

Globe with flagsImproving understanding of the public awareness of aphasia in different cultures and communities is particularly relevant to efforts to improve and extend services, to increase research support and to encourage improved social inclusion of aphasic people.

There is a relationship between the services that are provided for a condition, the research funds invested in that condition, and the level of public awareness of that condition.

For instance, there is a much lower frequency of occurrence of the word ‘aphasia’ in US newspapers compared to other comparable conditions, like Parkinson’s disease, despite the fact that aphasia occurs more often (Elman et al., 2000).

Frequency of occurrence of a condition in the media is related to the levels of public knowledge and the funding of services for that condition.

Therefore, the targeting of awareness raising, that is, education and raising awareness in those who come into contact most with aphasic people in different countries and cultural contexts is important.

In 2000 Speakability in the UK conducted a telephone survey of 1005 respondents balanced for class, age, sex and regions of the UK, who were asked what they knew of aphasia. Three percent responded appropriately. When provided with a basic definition of aphasia, 21% knew or had known someone with aphasia, and this figure increased with age.

A more recent phone survey was carried out in 2008 with 2000 respondents in the UK by the Aphasia Alliance. Over 90% had never heard of aphasia and 79% could not distinguish aphasia from ‘skin disease’ or ‘a fruit’.

Researchers around the world are attempting to discover what the general public know about aphasia so that we can identify the best ways to raise the public awareness of the condition. In our research study we have used the same survey method conducted in shopping centres, in order to gauge what people know about aphasia.

So far surveys have been carried out with shoppers in Argentina, Australia, Croatia, England, Greece, Norway, Slovenia, and the USA.

Shoppers were surveyed using translations of the same questionnaire and were asked, not only if they had heard of aphasia, but were also asked questions to find out how much they knew and where and how they had heard about aphasia.

We found significant variability in knowledge of aphasia among the countries surveyed.

Between 60% and 9.25% of shoppers said they had heard of aphasia.

In the English-speaking countries, we found that between 10% and 18% said they had heard of aphasia, but only between 1.5% and 7.6% had even some basic knowledge of aphasia. We also found that:

  • more females knew something about aphasia than males
  • older people were more likely to have heard of itthose with some knowledge of aphasia were significantly younger.

In the graph below you can see that levels of awareness vary a great deal between countries. We found that, overall, an average of 7.34% of the samples have some knowledge of what aphasia is.

Levels of awareness of aphasia between countries.

Levels of awareness of aphasia between countries.

Variation in awareness may be related to:

  • local media impact
  • regional variations in how often aphasia occurs
  • occupation and educational variations
  • cultural differences in attitude to disability.

Such information is vital for targeting awareness raising.

Where Do People Hear About Aphasia?

We wanted to find out where people had heard of aphasia, if they had, so that we could target awareness raising more usefully.

Where do people hear about aphasia

Where do people hear about aphasia

You can see from this graph that people hear about aphasia mainly through:

  • the media
  • their work
  • family or friends who have aphasia

People who were most likely to have heard of aphasia were mainly professionals like teachers, nurses, therapists, managers and administrators.

This information provides further evidence of differences in levels of awareness of aphasia in different cultures. Our combined sample of 3580 is larger than previous surveys and researchers in other countries are currently conducting similar surveys.

Increasing Awareness & Knowledge of Aphasia to Reduce Communication Barriers & Improve Access & Inclusion

The findings in our study highlight the importance of raising awareness and providing education in order to:

  • improve resources and services
  • increase access
  • reduce communication barriers for people with aphasia

Our surveys provide some clues as to where to aim awareness raising and education and to whom. There are certain groups in the community

  1. Service Providers’ in pubs, cafes, restaurants, shops, churches, cinemas, public transport, community venues.
  2. The Media: many people hear about aphasia through TV and radio, newspapers and magazines. The media is always hungry for those ‘human interest’ stories, and we can do a great deal to inform and educate the public through the media.
  3. Professionals that come into contact with people with aphasia. Health and social services, residential homes and hospitals, as well as conversation partner training, lobbying & advocacy with ‘purse holders’ who provide the funds for services.

A large number of people know about aphasia because a family member of friend has aphasia. Conversation partner training, relatives’ workshops, and family counseling can do a lot to improve the lives of people with aphasia.

What do you think can be done to improve the level of public awareness of aphasia?

If you would like to join this research and help find out about levels of awareness in your own country, state or city, then get in touch with Chris Code at c.f.s.code@exeter.ac.uk.

Researchers who have so far been involved in conducting surveys are:

Beth Armstrong, Edith Cowan University, Australia

Chris Code, University of Exeter, UK

Roberta Elman, Aphasia Centre of California, USA

Line Haaland-Johansen, Bredtvet Resource Centre, Oslo, Norway

Ana Leko & Tatjana Prizl-Jakovac, Dept of Speech & Language Pathology, University of Zagreb.

Ilias Papathanasiou, Technological Educational Institute of Patras, Greece,

Silvia Rubio-Bruno, María de la Paz Cabana, Maria Marta Villanueva, Fundación, Argentina de Afasia, Argentina,

Nina Simmons-Mackie, Southeastern Louisiana University, USA

Nada Zemva, University Rehabilitation Institute.Ljubjana Slovenia

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Reader Comments

Chris, thank you for sharing this information. On the second graph I've noticed that some of the countries have significantly higher rates, for example, in Greece a lot of people hear about aphasia through media, and in Norway and Argentina through family and friends.

Do you (or researchers from these countries that contributed the analysis) have an idea on where those differences are coming from? (e.g. are there some TV shows in Greece that made aphasia awareness higher, or special programs in Norway/Argentina for families)

#1 
Written By Ognjen Todic on September 29th, 2010 @ 7:56 am

Hi Chris, really interesting post. Quite shocking really. I shall do my very small bit for raising awareness by linking to this post on my blog!

#2 
Written By karendawe on September 29th, 2010 @ 11:25 am

Oops! I got that wrong. While Argentina has invested a lot in improving awareness, it was partly in reaction to the low levels of awareness found in the country. Norway, on the other hand, had high levels of awareness. Line Haaland Johansen can tell us why.

#3 
Written By Chris Code on September 29th, 2010 @ 2:24 pm

hi there

I think, for greece, the higher rate for the media has to do with teh use of word "aphasia", as it has also a second meaning, thata of being cool.. so it is common to say I am cool and use the word aphasia..

#4 
Written By ilias Papathaansiou on September 29th, 2010 @ 4:31 pm

Guten Tag

In Ungarn ist Aphasie (Afazia) noch nicht bekannt genug.
Für den aphasien Kranken, die nichr sprechen oder schreiben können, bekommen keine Unterstüzung. Die Blinden oder die Tauben sind Schwerbehinderten, die Aphasien Kranken aber nicht.

#5 
Written By Dallos, Zsuzsanna on September 30th, 2010 @ 6:37 am

Hi, in Spain, Aphasie ist not known at all. In the media they speek about brain damage in general and don´t mention aphasia as a impairment or disease. People informe us that the first time they heard about aphasia is in the hospital. People says also that they ask for information in the web

#6 
Written By Helena Briales on September 30th, 2010 @ 7:57 am

Hi Eileen,
The blog included data from the USA, collected by Nina Simmons Mackie in Louisiana and Roberta Elman in California. There were big differences in levels of awareness between these states, although the numbers where small from California. About 1.5% of respondents in relatively small cities in Louisiana had some basic knowledge of aphasia. I would be happy to send you (or anyone) the paper if you email me.

It is probable that there will be a significant variability across the States in levels of knowledge about aphasia and that this will be related to educational and occupational levels.

#7 
Written By Chris Code on October 1st, 2010 @ 9:35 am

All comments welcome. Please keep them coming…

#8 
Written By Chris Code on October 1st, 2010 @ 7:10 pm

A few aphasia centers in the US I've had a chance to visit have been very active in educating local community. Scale Baltimore Ambassadors are working on this (they also had a post on Aphasia Corner Blog on "Ten Things You Should Know About People With Aphasia http://aphasiacorner.com/blog/living-with-aphasia... Adler Aphasia Center members are very active in educating health care, police, firefighters, etc. on aphasia. Aphasia Center of California organizes aphasia awareness events every June (aphasia awareness month), etc. I am sure other centers have similar activities — it would be interesting to hear directly from them on their experiences (what works, what doesn't work).

There are couple of other approaches that may be interesting;

The Aphasia movie about Carl McIntyre is a great example; they recently won the Audience Award at the Big Bear festival in California (http://aphasiacorner.com/blog/living-with-aphasia-2/aphasia-the-movie-519).

It would also be great to see a mainstream TV show/movie in which one of the characters has aphasia. Things like this could go long way in terms of raising awareness. (by the way, I think there were some TV shows like this not too long ago; I haven't seen them personally but I've heard about it). If there is anybody in Southern California/Hollywood or somebody with connections to the movie industry, reading this, I'd be interested to hear your thoughts on viability of such approach.

I've heard that couple of weeks ago CBS News had weather report where person with aphasia was a newscaster. I heard it was fantastic but I have not been able to find it online.

Google has a so-called Google-doodle program (http://www.google.com/doodle4google/history.html); they frequently change the logo on their home page to celebrate specific event or help raise awareness about a specific cause. It would be great if they had a logo about aphasia (perhaps next June). Would people with aphasia be interested in creating logos which we could submit to Google (no guarantees they would use it, but it may be worthwhile a try)?

Any other ideas?

#9 
Written By Ognjen Todic on October 1st, 2010 @ 7:21 pm

Please see the website of The Foundation for Human Potential, (www.fhponline.org), where it is our mission to highlight the appreciation of individual differences in learning, which stemmed from my initial work with aphasic patients, as a speech pathologist. Of particular interest to you, may be my article on our home page, for the Encyclopaedia Britannica Medical and Health Annual.

#10 
Written By Andrea Shindler on October 2nd, 2010 @ 4:33 am

Chris,
This international perspective on aphasia, is absolutely fascinating. Since it often takes celebrity status to spread the word about any disorder, most effectively, perhaps identifying a celebrity with a personal story, willing to communicate it, would be a great place to start, in order to improve awareness.

#11 
Written By Andrea Shindler on October 2nd, 2010 @ 4:56 am

Sometimes increasing awareness is done one person at a time. My husband Harry has aphasia, and I am a speech-language pathologist. Harry sees each interaction with the public as an opportunity to educate individuals about his aphasia. I won't pretend that this is always fun or rewarding, but it is a grassroots way of making a difference. I admit that it is much easier to ignore the fact that the stranger waiting on you or the cashier at Walmart is uninformed. After all, if you "make a big deal" about the aphasia, you are constantly reminding yourself that you are living with aphasia.

However, I bet that people in Northwest Arkansas would be better informed about aphasia than in other places – simply because Harry has insisted that they listen to his explanation and that they show their understanding.

Maybe people living with aphasia could choose to educate one stranger a week…or a month. Does that sound like mission impossible? I don't know. I just know that leaving people uneducated is not the answer. And I know that putting a face with the word "aphasia" helps people learn and understand.

I hope to write a blog soon about some of these things.

#12 
Written By Barbara B. Shadden on October 3rd, 2010 @ 4:27 pm

I definitely agree with Barbara. From time to time, there have been suggestions to have an "aphasia spokesperson": a celebrity with aphasia who could "speak for" people with aphasia and increase awareness. I have always been opposed to this notion. The non-disabled community always looks to the super-achiever, the populist hero who can epitomize the struggles of someone with a disability. I find this notion personally repugnant; it is a way of continuing the stereotypic view of people with disabilities who succeed in life as extraordinary, and it makes it so difficult for most people with that disability to appreciate the struggle and engage positively. Years ago, I remember a few teen-age women who participated in a disability mentorship project. They came to hear Anne Finger, a person with polio, who had succeeded as a writer in and out of the genre of disability writing. But what those teens loved the most, was her 9 month old infant son, whom she had brought to the meeting. They took turns holding him, and feeding him, during her talk. The point is, none of them would ever achieve her level of professional accomplishment, but they could hope for a life with marriage, or children, or some "normalcy" in an existential way. We do not need super heroes. We need people with aphasia to engage and become more visible in every aspect of daily life. If we work to reduce barriers to that goal, aphasia awareness will increase, as more people with aphasia re-enter the community at large, and become less of an exception, and more of the ordinary.

#13 
Written By Shirley Morganstein on October 4th, 2010 @ 11:32 pm

At the Snyder Center for Aphasia Life Enhancement (SCALE), educating the public about aphasia is part of our mission. SCALE members have developed a unique way of targeting lots of folks in the general public. In accordance with the Life Participation Approach to Aphasia, SCALE members aim to participate more fully in the community at large. They have identified groups/causes in the Baltimore Community that interest them and offer their support and participation in a number of outreach activities. As they interact with the other volunteers assisting our partner organizations, they are given the opportunity to educate others WHILE they contribute to the organizations' cause. In turn, when the partner organization(s) publicize their efforts, they also mention their "volunteers with aphasia" from SCALE and their supporters/readers are educated as well. We believe these efforts empower SCALE members, educate the public and contribute to the Baltimore Community- what synchronicity! SCALE members will post a blog on Aphasia Corner about their efforts soon!

#14 
Written By Denise McCall on October 5th, 2010 @ 12:43 pm

I had the pleasure of meeting Chris and hearing the presentation at the IARC conference in Montreal. The NAA's mission is to increase public awareness of aphasia and we work every day towards that end. However- it is important that we all work together- everyone who is committed to improving the quality of life for persons with apahsia and their families should be collaborating in these efforts.

The last survey of public awareness done in the US was in 2001 and it had a limited sample of states. I would like to propose that we engage in a large scale survey in the US and involve as many states as we can. The NAA would like to coordinate these efforts; I think the information would be very interesting and could allow us to better direct our public awareness activities.

If you are interested in participating email me at ganzfried@aphasis.org

Ellayne Ganzfried
Executive Director
National Aphasia Association http://www.aphasia.org

#15 
Written By Ellayne Ganzfried on October 5th, 2010 @ 9:04 pm

My Dad has aphasia and I would like to help in raising awareness in Atlanta. Most people that we come in contact with seem to never have met an adult like my Dad who cannot speak.

#16 
Written By Jessica Strack on January 10th, 2011 @ 6:01 pm

I feel like I am drowning from the lack of understanding, compassion, and support services. I wasn’t able to sustain concentration long enough to read this whole page, but I hope it’s ok to ask at this point if anyone knows about anyplace on the globe where people with aphasia are getting interpreting services.

interpreters are provided for people who speak the language from another country than the one the other party is talking in, and interpreters are provided for people who speak with their hands (ASL, etc), but where is our interpreting services??

we speak the language from injuries and illnesses. we deserve effective communication as much as the others.

when the conversation doesn’t have to be live. when someone will instant message with me, i have a fighting chance of being understood and of understanding, but when I get no accomodation at all, especially in live conversation, it is a daily mess.

I don’t get the healthcare I need cause providers don’t take me seriously and/or don’t have the time for my mode of expression and difficulty comprehending (can’t tolerate how I lack the ability to be brief and to the point, get angry when I ask questions seeking clarification when i didn’t comprehend). I can’t get access to social services cause the social workers take advantage of my deficits and instead of trying to decipher my meaning, they portray me as ridiculous in the records. I get unfair outcomes in any types of courts I have to deal with cause I get misperceived. The problem even shows up in restaurants where servers get inpatient and the retaliation shows up in the food served to me.

help. help. help.

#17 
Written By c cecilia on March 17th, 2011 @ 4:30 pm

I applaud your research Chris. I think we as SLPs need to do more public education to raise an awareness of aphasia. Here in the USA I have heard the the word "aphasia" used less frequently in the media e.g. movies, newspapers compared to diabetes, or Parkinson's yet most people are aware of strokes. I think people for the most part are aware of the symptoms of aphasia, but may be less away of the term.

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