Interview with Aura Kagan, Ph.D.
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SP/Beck:Hi Dr. Kagan. It is an honor to speak with you. Thanks for your time this morning. Would you please tell me about your professional background?Kagan:My background is in Speech Language Pathology. I did my early training in South Africa, and earned my four-year degree. I also have a BA in Psy
SP/Beck:Hi Dr. Kagan. It is an honor to speak with you. Thanks for your time this morning. Would you please tell me about your professional background?
Kagan:My background is in Speech Language Pathology. I did my early training in South Africa, and earned my four-year degree. I also have a BA in Psychology and Sociology, and I think some of the sociology rubbed off on me! I finished my master's degree in South Africa in the early 1980s. I was very interested in Luria and neuropsychology, and that was my area of study for my master's. I earned my doctorate from the University of Toronto at the Institute of Medical Science, and that was in thSP/Beck:Hi Dr. Kagan. It is an honor to speak with you. Thanks for your time this morning. Would you please tell me about your professional background?
Kagan:My background is in Speech Language Pathology. I did my early training in South Africa, and earned my four-year degree. I also have a BA in Psychology and Sociology, and I think some of the sociology rubbed off on me! I finished my master's degree in South Africa in the early 1980s. I was very interested in Luria and neuropsychology, and that was my area of study for my master's. I earned my doctorate from the University of Toronto at the Institute of Medical Science, and that was in the late 1990s.
SP/Beck:What was your dissertation topic?
Kagan:The topic was ''Supported Conversations for Adults with Aphasia: Methods and Evaluation''. Essentially it was a randomized trail on training volunteers as conversation partners. I published a randomized trial, based on my PhD research. Based on the results of the doctoral work, my colleagues and I published an article in JSLHR in 2001.
SP/Beck:Fantastic! What did you learn?
Kagan:We found that we were able to document significant change in the behavior of volunteers in two main areas. First, they learned how to acknowledge the competence of people with aphasia, and second, they demonstrated a skill in, revealing the competence of people with aphasia.
We looked at three main areas. The first was ensuring that the volunteers made their message clear, so people with aphasia could understand it. The second was that they used techniques to help the person with aphasia get their message out - to express themselves, and third, was that they knew how to check or verify that they, the volunteers, had gotten the message correct.
We try to help the person with aphasia be as good a communicator as they can be, but we essentially say that the job is not theirs alone; it's also our responsibility. One thing we can do is develop skill in supporting conversation, through our ''Supported Conversation'' program.
SP/Beck: I like the idea of training communication partners to be more actively involved in sending and receiving the message. I think that must reduce stress on both parties in their roles as expressive and receptive communicators.
Kagan:I too think it really is beneficial for all concerned. This is ground up research that's extensively rooted in clinical experience. We've developed a training program which we use for our own volunteers, and we've adapted almost the identical training for healthcare professionals who come here from all over the world to learn these techniques. We teach them how to become good partners themselves in their own interactions with people with aphasia and then they also adapt the techniques to teaching the family. We have developed programs for training family members as partners. We're trying to encourage speech pathologists to take on more of an advocacy role in healthcare facilities using the philosophy of the Life Participation Approach to Aphasia and tools such as Supported Conversation to try and increase communicative access for people with aphasia.
SP/Beck:It seems like Supported Conversation can take many forms but, in essence, is it a matter of keeping the conversation focused and simple?
Kagan:What we try to do is balance art and science in this process. The art is keeping the ''feel and flow'' of natural adult conversation so that the person with aphasia feels they are in a natural adult conversation. At the same time, you have to make some adaptation and some compromises because of the aphasia. But these are done in such a way that they don't interfere with the feel and flow of the conversation. So when you talk about simplifying, the way we put ''it is simple, but not simplistic''. We use very sophisticated pictographic resources on topics that you and I talk about with our friends and family every day. They're not simple topics, they're complex topics, and we provide support through the resources we use. These pictographic resources are actually one of the signatures of the Aphasia Institute, and we've developed them over the years. There are hundreds and hundreds of pictographs. They are not organized under nouns and verbs, or alphabetically, but organized within conversational topics.
SP/Beck:That sounds very clever. Please tell me, what is your most recent pragmatic definition of Aphasia?
Kagan:Aphasia is an acquired disorder caused by brain injury and affects the person's ability to communicate. It is most often the result of stroke or head injury, and importantly, aphasia often masks inherent competence.
SP/Beck:Thank you. I really like that definition. Your website is quite impressive too. I urge the readers to review it, but in the meantime, I'd like to read a few notes from the website, and get your thoughts and comments if I may?
Kagan:Sure, please do.
SP/Beck:I think most of us think of aphasia in terms of expressive and receptive language, but aphasia impacts the ability to read and write too. Any comments on that?
Kagan:Yes. With aphasia, we're dealing with a language problem, not just a speech problem. Aphasia does impact all modalities and that is one of the reasons why communicative access is such a big issue. Many people with speech disorders can read and write so they have access to information.
SP/Beck:Absolutely, that's a very good point.
Kagan:Families don't often understand that reading and writing are part of the problem, and it's hard to understand how all of this fits in. The way people understand it most easily, I think, is the foreign language analogy. If you don't speak another language, and everyone else did, it would be similar to severe aphasia. It wouldn't help you to have a computer. If you don't speak Russian for example, it wouldn't help you to have a computer in Russian, because of the language problem. I also like that analogy because some people speak a second language -- but not that well. Maybe they can ask for coffee, tea, and the washroom but they can't have a discussion about the future, or about their fears, or about subtle things.
SP/Beck:Yes, and so in keeping with the analogy, concrete items are easier to discuss then less tangible things?
Kagan:Right. But if the aphasia is very severe sometimes the most concrete things are difficult too.
SP/Beck:What is the rate of recovery from aphasia following a stroke? I know it is highly variable, but are their certain numbers and guidelines you feel comfortable offering?
Kagan:Well, I'm not sure of the exact figures or quotes. In general, they're not based on hard evidence, they're based on extrapolations. The incidence of aphasia related to stroke is usually quoted something like this....Approximately half of the strokes will be on the left side, and about half of those will have aphasia. So usually it's about a quarter to a third of people that have a stroke will end up having aphasia. We know that a certain number of people do recover with treatment over time, and there's also spontaneous recovery, but a significant number are left with an ongoing disability. In Toronto, it is estimated that some 6,600 people have aphasia. The number rises to over 30,000 in Ontario, 100,000 in Canada, and over 1,000,000 in the United States but we're not sure how valid the extrapolation is. I think the figures are probably under recorded, and they often don't take into account aphasia not due to stroke, e.g. head injury and trauma, motor vehicle accidents, disease processes etc. I believe aphasia merits more attention and awareness than it gets, which is why speech pathologists certainly have a role in awareness and advocacy.
SP/Beck:How do you prefer for the diagnosis to be made?
Kagan:Well, we obviously want the speech pathologist involved in making the diagnosis of aphasia. And it's usually a combination of working with neurological data, substantiating some kind of injury, and then the symptomatic profile of aphasia. And for me one of the things that makes it aphasia as opposed to something else, is the fact that you can see the underlying inherent competence if you provide support. One of the tragedies is that it's not always easy to see it.
SP/Beck:A few notes I picked up from your website are; ''There are nearly twice as many people with aphasia as there are with Parkinson's, yet the general public knows little or nothing about aphasia.'' And also, ''The number of people with aphasia is expected to increase significantly as the population ages.'' I suppose that as the baby boomers move into their senior years we can expect to see more people with aphasia.
Kagan:Right. Those are the predictions. The numbers are huge even though there have been strides made in preventing the impact of stroke. One problem we face in all of North America is adapting our healthcare systems to provide what people need in the way of long-term support. For example, with diabetes, there's ongoing treatment because it's easy to see people need insulin. Counseling is usually provided for individuals and families. Nobody would dream of not treating diabetes because it's a chronic disorder. In the same way, people live with aphasia for the rest of their lives. There's a lot of great work going on in the States and Canada, the UK, Europe, and Australia where people are starting to recognize that aphasia is not an acute disorder, and doesn't end when rehab ends. Our role may end at that time, but people live with aphasia the rest of their lives and we're not there. One thing I'd like to recommend for the interested professional is that they read ''Life Participation Approach to Aphasia: A Statement of Values.'' It was first published in the ASHA Leader and republished in Roberta Chapey's latest book.
SP/Beck: So part of your training for SLPs involves taking an active role and taking responsibility for their treatment plans?
Kagan:We encourage clinicians to look at an expanded role. We ask them, have you made a difference? Have you increased access to participation in life and to participation in family life, and community life? And we look at quality of life issues too. If we're doing it right, we should actually make a difference in people's ability to participate in relationships and in their life.
SP/Beck:In essence you're saying we need to make sure we have outcomes that support our theories and our treatment and rehab programs!
Kagan:Right. Unless you're reaching and achieving those outcomes, you have to ask yourself what you're doing and why.
SP/Beck:That's fantastic. Before I let you run, I want to mention that you have a training program December 1- 4, 2003 on Supported Conversation for Adults with Aphasia. And the workshop has two goals, teaching techniques to help healthcare professionals communicate more effectively with adults with aphasia, and using those techniques to acknowledge the inherent competence of those with aphasia.
Kagan:The other thing I'd like to mention is that we're coming out with a new series of book of pictographic resource material that will be a useful way for our profession to promote ourselves with other healthcare professionals e.g. doctors, physiotherapists, nurses, hospital chaplains. Other resources will include book on intimacy and sexuality. That resource will be available in the fall.
SP/Beck:Thanks so much for your time. I really enjoyed speaking with you this morning.
Kagan: Thank you too Doug. I appreciate the opportunity to speak about our organization.
For more information, please visit www.aphasia.ca.e late 1990s.
Kagan:My background is in Speech Language Pathology. I did my early training in South Africa, and earned my four-year degree. I also have a BA in Psychology and Sociology, and I think some of the sociology rubbed off on me! I finished my master's degree in South Africa in the early 1980s. I was very interested in Luria and neuropsychology, and that was my area of study for my master's. I earned my doctorate from the University of Toronto at the Institute of Medical Science, and that was in thSP/Beck:Hi Dr. Kagan. It is an honor to speak with you. Thanks for your time this morning. Would you please tell me about your professional background?
Kagan:My background is in Speech Language Pathology. I did my early training in South Africa, and earned my four-year degree. I also have a BA in Psychology and Sociology, and I think some of the sociology rubbed off on me! I finished my master's degree in South Africa in the early 1980s. I was very interested in Luria and neuropsychology, and that was my area of study for my master's. I earned my doctorate from the University of Toronto at the Institute of Medical Science, and that was in the late 1990s.
SP/Beck:What was your dissertation topic?
Kagan:The topic was ''Supported Conversations for Adults with Aphasia: Methods and Evaluation''. Essentially it was a randomized trail on training volunteers as conversation partners. I published a randomized trial, based on my PhD research. Based on the results of the doctoral work, my colleagues and I published an article in JSLHR in 2001.
SP/Beck:Fantastic! What did you learn?
Kagan:We found that we were able to document significant change in the behavior of volunteers in two main areas. First, they learned how to acknowledge the competence of people with aphasia, and second, they demonstrated a skill in, revealing the competence of people with aphasia.
We looked at three main areas. The first was ensuring that the volunteers made their message clear, so people with aphasia could understand it. The second was that they used techniques to help the person with aphasia get their message out - to express themselves, and third, was that they knew how to check or verify that they, the volunteers, had gotten the message correct.
We try to help the person with aphasia be as good a communicator as they can be, but we essentially say that the job is not theirs alone; it's also our responsibility. One thing we can do is develop skill in supporting conversation, through our ''Supported Conversation'' program.
SP/Beck: I like the idea of training communication partners to be more actively involved in sending and receiving the message. I think that must reduce stress on both parties in their roles as expressive and receptive communicators.
Kagan:I too think it really is beneficial for all concerned. This is ground up research that's extensively rooted in clinical experience. We've developed a training program which we use for our own volunteers, and we've adapted almost the identical training for healthcare professionals who come here from all over the world to learn these techniques. We teach them how to become good partners themselves in their own interactions with people with aphasia and then they also adapt the techniques to teaching the family. We have developed programs for training family members as partners. We're trying to encourage speech pathologists to take on more of an advocacy role in healthcare facilities using the philosophy of the Life Participation Approach to Aphasia and tools such as Supported Conversation to try and increase communicative access for people with aphasia.
SP/Beck:It seems like Supported Conversation can take many forms but, in essence, is it a matter of keeping the conversation focused and simple?
Kagan:What we try to do is balance art and science in this process. The art is keeping the ''feel and flow'' of natural adult conversation so that the person with aphasia feels they are in a natural adult conversation. At the same time, you have to make some adaptation and some compromises because of the aphasia. But these are done in such a way that they don't interfere with the feel and flow of the conversation. So when you talk about simplifying, the way we put ''it is simple, but not simplistic''. We use very sophisticated pictographic resources on topics that you and I talk about with our friends and family every day. They're not simple topics, they're complex topics, and we provide support through the resources we use. These pictographic resources are actually one of the signatures of the Aphasia Institute, and we've developed them over the years. There are hundreds and hundreds of pictographs. They are not organized under nouns and verbs, or alphabetically, but organized within conversational topics.
SP/Beck:That sounds very clever. Please tell me, what is your most recent pragmatic definition of Aphasia?
Kagan:Aphasia is an acquired disorder caused by brain injury and affects the person's ability to communicate. It is most often the result of stroke or head injury, and importantly, aphasia often masks inherent competence.
SP/Beck:Thank you. I really like that definition. Your website is quite impressive too. I urge the readers to review it, but in the meantime, I'd like to read a few notes from the website, and get your thoughts and comments if I may?
Kagan:Sure, please do.
SP/Beck:I think most of us think of aphasia in terms of expressive and receptive language, but aphasia impacts the ability to read and write too. Any comments on that?
Kagan:Yes. With aphasia, we're dealing with a language problem, not just a speech problem. Aphasia does impact all modalities and that is one of the reasons why communicative access is such a big issue. Many people with speech disorders can read and write so they have access to information.
SP/Beck:Absolutely, that's a very good point.
Kagan:Families don't often understand that reading and writing are part of the problem, and it's hard to understand how all of this fits in. The way people understand it most easily, I think, is the foreign language analogy. If you don't speak another language, and everyone else did, it would be similar to severe aphasia. It wouldn't help you to have a computer. If you don't speak Russian for example, it wouldn't help you to have a computer in Russian, because of the language problem. I also like that analogy because some people speak a second language -- but not that well. Maybe they can ask for coffee, tea, and the washroom but they can't have a discussion about the future, or about their fears, or about subtle things.
SP/Beck:Yes, and so in keeping with the analogy, concrete items are easier to discuss then less tangible things?
Kagan:Right. But if the aphasia is very severe sometimes the most concrete things are difficult too.
SP/Beck:What is the rate of recovery from aphasia following a stroke? I know it is highly variable, but are their certain numbers and guidelines you feel comfortable offering?
Kagan:Well, I'm not sure of the exact figures or quotes. In general, they're not based on hard evidence, they're based on extrapolations. The incidence of aphasia related to stroke is usually quoted something like this....Approximately half of the strokes will be on the left side, and about half of those will have aphasia. So usually it's about a quarter to a third of people that have a stroke will end up having aphasia. We know that a certain number of people do recover with treatment over time, and there's also spontaneous recovery, but a significant number are left with an ongoing disability. In Toronto, it is estimated that some 6,600 people have aphasia. The number rises to over 30,000 in Ontario, 100,000 in Canada, and over 1,000,000 in the United States but we're not sure how valid the extrapolation is. I think the figures are probably under recorded, and they often don't take into account aphasia not due to stroke, e.g. head injury and trauma, motor vehicle accidents, disease processes etc. I believe aphasia merits more attention and awareness than it gets, which is why speech pathologists certainly have a role in awareness and advocacy.
SP/Beck:How do you prefer for the diagnosis to be made?
Kagan:Well, we obviously want the speech pathologist involved in making the diagnosis of aphasia. And it's usually a combination of working with neurological data, substantiating some kind of injury, and then the symptomatic profile of aphasia. And for me one of the things that makes it aphasia as opposed to something else, is the fact that you can see the underlying inherent competence if you provide support. One of the tragedies is that it's not always easy to see it.
SP/Beck:A few notes I picked up from your website are; ''There are nearly twice as many people with aphasia as there are with Parkinson's, yet the general public knows little or nothing about aphasia.'' And also, ''The number of people with aphasia is expected to increase significantly as the population ages.'' I suppose that as the baby boomers move into their senior years we can expect to see more people with aphasia.
Kagan:Right. Those are the predictions. The numbers are huge even though there have been strides made in preventing the impact of stroke. One problem we face in all of North America is adapting our healthcare systems to provide what people need in the way of long-term support. For example, with diabetes, there's ongoing treatment because it's easy to see people need insulin. Counseling is usually provided for individuals and families. Nobody would dream of not treating diabetes because it's a chronic disorder. In the same way, people live with aphasia for the rest of their lives. There's a lot of great work going on in the States and Canada, the UK, Europe, and Australia where people are starting to recognize that aphasia is not an acute disorder, and doesn't end when rehab ends. Our role may end at that time, but people live with aphasia the rest of their lives and we're not there. One thing I'd like to recommend for the interested professional is that they read ''Life Participation Approach to Aphasia: A Statement of Values.'' It was first published in the ASHA Leader and republished in Roberta Chapey's latest book.
SP/Beck: So part of your training for SLPs involves taking an active role and taking responsibility for their treatment plans?
Kagan:We encourage clinicians to look at an expanded role. We ask them, have you made a difference? Have you increased access to participation in life and to participation in family life, and community life? And we look at quality of life issues too. If we're doing it right, we should actually make a difference in people's ability to participate in relationships and in their life.
SP/Beck:In essence you're saying we need to make sure we have outcomes that support our theories and our treatment and rehab programs!
Kagan:Right. Unless you're reaching and achieving those outcomes, you have to ask yourself what you're doing and why.
SP/Beck:That's fantastic. Before I let you run, I want to mention that you have a training program December 1- 4, 2003 on Supported Conversation for Adults with Aphasia. And the workshop has two goals, teaching techniques to help healthcare professionals communicate more effectively with adults with aphasia, and using those techniques to acknowledge the inherent competence of those with aphasia.
Kagan:The other thing I'd like to mention is that we're coming out with a new series of book of pictographic resource material that will be a useful way for our profession to promote ourselves with other healthcare professionals e.g. doctors, physiotherapists, nurses, hospital chaplains. Other resources will include book on intimacy and sexuality. That resource will be available in the fall.
SP/Beck:Thanks so much for your time. I really enjoyed speaking with you this morning.
Kagan: Thank you too Doug. I appreciate the opportunity to speak about our organization.
For more information, please visit www.aphasia.ca.e late 1990s.