Monday, 6 January 2014

Week 9: People with Aphasia

Aphasia is an acquired language disorder caused by traumatic brain injury or disease. It’s common consequence of stroke that damages specific brain regions responsible for language generation and comprehension. Aphasia affects approximately over 30% of stroke survivors. Aphasics can have different communication disabilities depending which area and extent of brain is damaged and these impairments may vary in intensity and severity. Language modalities including talking, reading, writing, remembering words and understanding spoken or written languages can be affected in various combinations. Precise classifying types and subtypes of aphasia is difficult because language is a comprehensive and complex behavior. Therefore every aphasics is unique and has highly selective range of disabilities. The most common kinds of aphasia are: expressive aphasia (loss the ability to produce spoken or written language also called Broca’s aphasia), receptive aphasia (inability to understand language in its written or oral form also called Wernicke's aphasia) and global aphasia (combination of both comprehension and expression of language). Other impairments concern problems with recalling words or naming objects (anomic aphasia), poor speech repetition (conduction aphasia) and many more.

Please watch this sad document to better understand main problems concerning people with aphasia:

When someone loses the ability to use language due to injury, for instance because of aphasia, he or she also loses the ability to communicate and share stories, which can eventually lead to social isolation. Individuals with aphasia like to be listened to and understood like other healthy individuals. They want to express their ideas, comments, anecdotes and feelings about what occurred to them in their daily life. Storytelling supports also communication goals such as maintaining or establishing social connections, besides the transfer of information. Aphasics require easy access and simplicity in their communication aids and need the ability to communicate at a distance instantaneously.

There are many Augmentative and Alternative Communication (AAC) solutions providing hardware and software tools for supplementing or replacing speech or writing in the production or comprehension of spoken or written language.

Thanks to mobile devices like smartphones/tablets and social networks the aphasics have a great opportunity to communicate and share their everyday experience via multimodal interfaces. Many applications are available starting from very basic like picture dictionaries (for example ICOON digital or Oxford Picture Dictionary) with icons/images representing objects, activities etc.:



to very advanced like DynaVox Compass offering comprehensive set of tools supporting everyday conversations:


These tools can help to communicate using the precise words for complete communication and self-expression.

If you interested in this topic I recommend further reading:
http://www.cs.ubc.ca/~joanna/papers/CUU2003_McGrenere.pdf

Some questions for discussion:
1. Have you ever heard about aphasia or met a person with this disability?
2. What is the biggest problem for people with aphasia in your opinion and how it could be reduced?
3. Do you know any applications that might be useful to such people?
4. Quality of life of such persons is very important for better rehabilitation results. What is the level of awerness of this issue in Polish society?

22 comments:

  1. 1. No, I have not heard of aphasia before. I am very surprised.
    2. In my opinion the biggest problem for people with aphasia is problem with communication. Perhaps the solution is sign language?
    3. I'm sorry but I do not know this type of application.
    4. I am afraid, the level of awareness is very low. From now on I will try it to change!

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    2. You have intrigued me with idea to use sign language and I started to look for answer to this question. My medical knowledge is limited but I've found information that deaf people can have aphasia as well and then make errors similar to those of speaking people. People with aphasia have different skills and skill deficits depending on the size of damage to the brain and then resulting in different aphasia type. Every individual with aphasia is different, so it is impossible to make a one statement saying that people with aphasia can or cannot do something or learn something. Whether people with aphasia are able to acquire sign language as a substitute depends very much on the type of aphasia. So if they do learn it, there grasp of it will be very limited and overall there signing will be more like gesture and not like sign language.

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  2. 1. Not really. While I do have a stroke patient in my more distant family, there haven't been any serious consequences - be it aphasia or anything else. There is some slight speech impediment, but nothing quite that bad. Granted, I'm not a doctor, so maybe it is a mild form of aphasia, I can't really tell.

    2. Without personal experience and only the previously mentioned family member, I can only guess what it's like to deal with actual aphasia patient - seeing as some issues are already present in such a mild case. Communication is a big issue, requiring a lot of patience both to understand them and be understood. Sometimes it's difficult to tell what they're trying to say and easy to get confused. It can even get annoying - even though you realize you're not supposed to react in this way, but can't really help it.

    The only real thing to do is being patient and "give them time" - just like it's mentioned in the movies.

    3. No, I don't - and I'm not sure if they'd be so easily available in Poland. There is the issue with older people having trouble adjusting to modern technology, making it more difficult to benefit from such applications. Granted, if it was the only way they could communicate effectively, they'd probably do it - or at least try. How well would that work is anyone's guess.

    4. It's quite low, and I'm hardly an exception. As a sidenote - which might not really be about aphasia specifically, but about the said family member. I believe recently there were some changes in law that made it even more difficult to take care of older people that need outside assistance. I'm not really directly involved in it so I'm not aware of the details, but, like usual, it was about money (family members helping out and getting paid for it... something something) - and instead of helping, it made things more complicated and annoying.

    Advanced applications and software specifically tailored for such people being widely available and accessible? I'm really not seeing this in the nearest future. Our healthcare system has significant issues and "aphasia" wouldn't even make it into top ten most pressing ones - or maybe even a hundred.

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    1. Very good observations.You are right that even therapist or closest family members may feel annoyed because typical daily communication is very fast and we are not accustomed to long waiting or guessing what people want to say. It's very uncomfortable feeling for both parties when they cannot understand each other.

      In fact technological advancement of older people abroad is much higher than in Poland. I remember being in the Netherlands watched really old people using electronic devices like iPads and it wasn't something extraordinary. Unfortunately, when we consider Polish conditions it's completely different story. So easy availability of such equipment in Poland does not necessarily means that people would like to use them. This has a direct impact on the willingness to use such devices in the event of disability occurred.

      Your last answer presents very sad truth about the Polish realities. Aphasia is marginalized and it seems completely irrelevant compared to the problems faced by the Polish healthcare system today.

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  3. Fortunately none of my friends and family have been touched with aphasia. Also, I did not hear any information about this disability (besides the information presented on the PhD workshops that we had some time ago). Looking at the histories presented in the videos I feel that most of the people with aphasia are lonely and feel isolated from society as they find it difficult to communicate with others. All of the tools presented in the article are a workaround of these communication problems but at the same time I feel that they are still a barrier of communication that some people would find hard to overcome.

    As for the awareness of Polish society concerning this disability - I think that it's not a very popular topic. Maybe one day WOŚP will target this and make it one for which money is being raised and the current situation will change...

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    1. Mental attitude and the quality of care provided in particular by the closest family has a big impact on whether such persons will want to use these tools and and with what success.

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  4. 1. I never heard about aphasia before seeing your presentation. I don't know any person with this disease. I probably don't know any stroke survivor (maybe I know but they are unfamiliar people to me) - it is maybe a cause why I didn't heard about aphasia earlier.

    2. I think that the biggest problems for people with aphasia is lack of time other people required for communication with them. This problem can be reduced by using devices presented by you.

    3. I don't know such applications but I suppose that for older people their using should be as easy as using remote controller for TV. Otherwise they wouldn't want to use them.

    4. I hope that direct surroundings of such people has better (and appropriate) knowledge about that disease than mine. I also would like to thank you for approaching aphasia and giving basic information about it.

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    1. Yes, high level of usability of such devices is very important factor and aphasics require easy access and simplicity in their communication aids. Moreover aphasics generally have a paresis of the right hand which also imposes specific design guidelines for such devices.

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  5. 1. I never heard about aphasia, of course I already know that traumatic brain injury or other brain disease like Alzheimer can cause difficulties with language but I never thought about it as independent problem.
    2. I think that the biggest problem is awareness of some needs of communication and lack of way to communicate. I believe that this can be really frustrating. When you realize important role of verbal communication in our lives you can understand how abandoned this people can feel.
    3. Unfortunately, I do not know any of application that can be useful.
    4. I'm afraid that the level of awareness of this issue in Poland is low and probably this can be the biggest problem for people with aphasia. We as a community can communicate using other simpler form of communication and we often practice it during the communication and very young children. I do not mean that we should treat people with aphasia like kids. Rather, I wanted to highlight that if we are aware of some problem we can be patient and adapt to the situation.

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    1. Your comparison to the methods of communication used in teaching children is very appropriate. Practically aphasics learn to speak from the beginning. The level of frustration is usually extremely high because communication is one the most important actions we do on daily basis. Without it you immediately can feel completely helpless and useless. It's so important to be patient and empathic for such people.

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  6. Have you ever heard about aphasia or met a person with this disability?

    I have never heart about that disability except of Marcin’s experience from his internship in University of Technology in Eindhoven. I am surprised why Marcin didn’t mention about his results from internship in this post. Marcin makes me aware of what aphasia really is. The problem seems to be really serious and people affected with it are very sad - the films showed that. After reading this post and after multiple conversations with Marcin I can say that I has opened into this problem even though I have never met a person with such disability.

    What is the biggest problem for people with aphasia in your opinion and how it could be reduced?

    In my opinion, the biggest problem for people affected aphasia is that their body refused signal from the brain and they are not able to express themselves easily (supposing that the brain is not damaged to much). It is annoying for them (if I can say that) and for their relatives. Generally speaking, the biggest problem lies in communication. The problem of communication may be reduced by incorporating modern technology that assist them with communication with others. But if we want that technology meets the requirements of disabled people, it must be as much intuitive as possible...

    Do you know any applications that might be useful to such people?

    Only one – that which Marcin has been showing many times during multiple presentations. It is application for a tablet which aim is to assist people with aphasia to communicate with others. This application, among other things, can publish photographs from their daily life, compose history from their daily activities, drawing pictures, showing when and where they was etc.
    The interface is very important for such an application. Such interface must be as much intuitive and easy in operation as possible. People should focus on communication without thinking about handling with particular device. I think, user interface experience play essential role in helping such people.

    Quality of life of such persons is very important for better rehabilitation results. What is the level of awerness of this issue in Polish society?

    I have impression that the awareness of this disability is very low in Poland. I heart about a research treating about influence of listening to music into people with Parkinson’s disease. I think the influence of music into people with aphasia has never been studied before. It might be a new interesting field to research.

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    1. I am glad that you remember so many details about my application. I was very curious what the response will be about this subject so I didn't want to reveal too much.
      Your idea concerning influence of music into people with aphasia looks very interesting, maybe someday we will join our forces building new solutions for aphasics?

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  7. 1. Have you ever heard about aphasia or met a person with this disability?
    I never met people with aphasia and I never heard about that disability.

    2. What is the biggest problem for people with aphasia in your opinion and how it could be reduced?

    I think that the biggest problem of such people is loneliness. Everyone know that communication is one of most important think in our society and when you are have problem with communication you are become lonely. Another problem is that probably only few people know that there is such a thing as aphasia so most of probably don't know how to react when they met such person. In my opinion the best way to solve this problem is to increase people's awareness about aphasia by the different types of social actions.

    3. Do you know any applications that might be useful to such people?

    I don't know any of that kind of application

    4. Quality of life of such persons is very important for better rehabilitation results. What is the level of awerness of this issue in Polish society?

    I think that awareness about that disability in Poland is very low, but I hope that this will change

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    1. I like your idea about increasing people's awareness about aphasia by organizing social actions. I remember that one of WOŚP was dedicated to the support of older people and it's a great way to popularize information about this disability.

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  8. 1. Yes of course I heard about aphasia and even I know one person with this disability.
    2. Like everybody know, the bigest problem is communication but I can't answer you how to reduce this problem. I am patient when I talk with my friend so I don't see any problem.
    3. I never look inside this problem so I never look at for any devices / software for this purpose. But you found some devices and shown here so I think that I don't need to look for more ;)
    4. I think that awareness of this issue in Polish society is very low, but this is because this problem concerns very small percent of people. If will be more percent then I am pretty sure that people will be more opened for this issue.

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    1. I have to disagree with your last statement. In my opinion it's not only about small percent of people with this disability. I think that generally the idea of well-being and quality of life, especially the elderly people, is not taken seriously in Poland. We are in complete opposition to the situation that is taking place in the Netherlands or Nordic countries. These countries have put great emphasis on improving the quality of life of older people and try to provide them with assistance in various aspects of their problems.

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  9. I think this documentary itself proves that people with this disability can still share stories and get their point across very well if they are given a chance. I wonder how much rehabilitation effort it took to reach that level?
    As long as the person who suffered a stroke still has good motor and mental skills, such computer aides and applications can be a lot of help. They probably may also make the rehabilitation process more effective.
    The awareness issue needs to be taken seriously as well. I did not know about this particular disability (although I have heard about speech impediments after a stroke).

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    1. Aphasics can improve their language generation/comprehension but complete recovery remains unlikely. The success of the rehabilitation process is very individual matter. In some cases, it takes several years and the improvement is very small but there are situations where the time needed for it is much shorter and quality of communication is surprisingly high.

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  10. I first heard about this disease. With this presentation I learned more what this disease. I know what it is induced and what are its consequences.
    I am glad that the ongoing work on the invention of devices that will assist patients. I personally do not know of any devices or applications that could help patients. I have a friend who
    would be sick of aphasia. I hope that the number of people suffering from this disease is small.

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  11. 1. Have you ever heard about aphasia or met a person with this disability?

    Yes, I have heard about this disease but I have never spent time to find out more information.

    2. What is the biggest problem for people with aphasia in your opinion and how it could be reduced?
    I don’t know much about this disability but I think the biggest problem with these people may be communication, and fear of rejection.

    3. Do you know any applications that might be useful to such people?
    No, I’m sorry I don’t know any applications that might be useful.

    4. Quality of life of such persons is very important for better rehabilitation results. What is the level of awareness of this issue in Polish society?
    In Poland awareness of a lot of thinks is poor  the aphasia it’s not exception.

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  12. 1. Have you ever heard about aphasia or met a person with this disability?
    I heard about this defect aphasia on presentation's Mati at school. I meet older people with aphasia.

    2. What is the biggest problem for people with aphasia in your opinion and how it could be reduced?

    The main problem is the attitude of people to the sick person, the total lack of understanding and unwillingness to come into contact with patients. Lack of patience in establishing contact.

    3. Do you know any applications that might be useful to such people?
    I know an application written by Mati.

    4. Quality of life of such persons is very important for better rehabilitation results. What is the level of awerness of this issue in Polish society?

    Difficult question is probably zero awareness of the problem. I think that this disease will be addressed in the future.

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