Episode #87: Tailored LPA interventions for dementias: A Conversation with Becky Khayum

Aphasia Access Conversations

Welcome to the Aphasia Access Conversations Podcast. I’m Jerry Hoepner, a faculty member in the department of Communication Sciences and Disorders at the University of Wisconsin – Eau Claire. Today, I’m joined by Becky Khayum.

Biosketch:

Becky is a speech-language pathologist and specializes in providing person-centered care for people living with different dementia syndromes. Over the past 15 years, she has held leadership positions in rehabilitation centers, assisted living communities, memory care communities and home health environments. In 2009, Becky co-founded MemoryCare Corporation, a therapy company specializing in providing care for families coping with dementia. Becky currently serves as the President of MemoryCare. In 2020, she co-founded Cognitive Concierge, which provides digital services and programs for people living with cognitive challenges. She has been involved in research initiatives in Primary Progressive Aphasia at the Northwestern Mesulam Center for Cognitive Neurology & Alzheimer’s Disease. Becky speaks nationally to train healthcare providers and families on how to creatively apply the life participation approach for people living with dementia.

Take aways:

1. Learn about applications of the LPAA framework to individuals with dementias, including primary progressive aphasia (PPA).
2. Learn about tools you can use to implement LPAA interventions with individuals with Alzheimer’s disease and PPA.
3. Learn about several key authors/researchers/clinicians in the areas of dementia interventions that should serve as starting points for learning about person-centered care in dementias.
4. Learn how to frame person-centered, LPAA goals for persons with dementias, including PPA.
5. Learn how to document so that LPAA interventions are reimbursable for Medicare and other insurance providers.

Interview Transcript:

Jerry Hoepner: Hi Becky so glad to have you with me today and really looking forward to this conversation.

Becky Khayum: Well, thanks for having me Jerry I’m looking forward as well to our discussion.

Jerry Hoepner: You know, I was mentioning to our listeners that if they weren't familiar with your work, they really need to explore your work, because there's just so many important connections about the life participation approach applied to individuals with progressive diseases like dementias and so forth. We know that, at least in the Aphasia Access circles you're well known for your person-centered life participation approach for individuals with dementia, including the individuals with primary progressive aphasia. Can you share just a little bit about how you got connected with Aphasia Access and the life participation approach?

Becky Khayum: So, so I’m sure others have the same story, but I was going about my ordinary day and I get a call from Audrey Holland and she's so excited and says there is this summit, and you have to go and begins to tell me all about it, and you know, of course, said Aphasia Access you know this is new and I had you know, the summit is new and I had actually hadn't heard of Aphasia Access at that point, which was surprising considering I tried to you know base my clinical work on person centered care and I was so sad because I actually couldn't make of the first [Aphasia Access Leadership] Summit but of course, I went to the Aphasia Access website at that point and signed up, and it was startling and I was so delighted because, “Oh, my goodness, everything that I am trying to think about as the clinician and train other you know speech language pathologist on is completely captured and this one group with so many leaders in our field,” so that is how I first got connected.

Jerry Hoepner: Oh that's fantastic I didn't know that story but I kind of figured that was one of the connections, I know that I had spoken to Audrey I don't know if it was that the first or the second Aphasia Access Leadership Summit and she just spoke so she raved about you and the great work that you were doing and was just so excited that you were a part of the organization so that's fantastic and like you said a lot of people have that connection. So it was fabulous that a few weeks back to have a conversation with her again on a podcast and recognize her lifetime of just brilliant work so she's been a mentor and an encourager for so many of us so fantastic.

Becky Khayum: Absolutely 100% yep.

Jerry Hoepner: Well, you found a perfect fit and a perfect home in Aphasia Access and I, as someone who loves working with individuals with aphasia my passion is really with people with cognitive disorders, with traumatic brain injuries and so forth, as well, and I just think the life participation approach has so many applications that are much broader than aphasia and certainly we're excited to talk with you today about those applications as they're made to individuals with dementia and including your work on primary progressive aphasia as well.

Becky Khayum: sure.

Jerry Hoepner: Absolutely you you've done some great interdisciplinary work with a team of professionals about dementias I’m really interested, I have been reading your work on the care D model and just want to get your thoughts on the relevance of that model to dementia care and maybe talk us through some of the different types of dementia syndromes and their typical symptoms and the way that they present themselves I guess.

Becky Khayum: Sorry, Sir absolutely so I’m during my you know collaboration in research at the Northwest Western Mesulaum Center for Cognitive Neurology and Alzheimer’s disease, I had some amazing mentors there who developed this care pathway model: Darby Morhardt, you know Sandy Weintraub, Dr. Mesulaum, and Emily Rogalski. Really learned everything there that from them that I now know about the different types of dementia syndromes you know, and so they developed the care pathway model, you know for people living with dementia and really the model highlights that there are different types of dementia syndromes with very specific symptoms depending on where that neurodegenerative disease starts in the brain and it was really trying to promote awareness that you know Alzheimer’s dementia, with the memory loss isn't the only type of dementia syndrome and therefore there really needs to be tailored care and interventions for the different types of dementia syndromes and really, how do you adapt those interventions over time. How, you know just that huge need for psychosocial you know, support and so anyways that's the basis for the care pathway model so they you know in that paper they describe. Some of the different dimension syndromes that have very distinct symptoms, so of course we know you know Alzheimer’s dementia, with the hallmark you know deficit of that short term episodic memory loss that you first see but then, you know you may have language reading and writing symptoms that first appear and get worse over time and, as in primary progressive aphasia. Another example would be for those neurodegenerative diseases that more cause deficits in behavior and personality changes, as in the behavioral variant of frontal temporal dementia and then also another syndrome, that I don't think is as well known, is where the neurodegenerative disease starts in the occipital lobes so you have you know vision difficulties that's caused by you know cortical deficit and so that is posterior cortical atrophy so you know this, the care pathway model then describes and I know we'll talk about more of this podcast. Okay, how do you can tailor the interventions given those different types of symptoms right?

Jerry Hoepner: Right and that's a big part of that that care model right that tailoring not only to the type of dementia, but to the individual that you're working with, and as I read the article I think the word tailor comes up about 100 times.

Becky Khayum: Absolutely right and that's such a good point it's not just to the symptoms. It is to that actual individual and the way their symptoms impact their daily life so completely corresponding with the LIFE participation approach yeah.

Jerry Hoepner: Absolutely, well that's actually a really good lead into my next question. We have a lot of information out there about the LIFE participation approach for aphasia but are there differences in the way that an LP might apply the LIFE participation approach for people living with a progressive condition.

Becky Khayum: Sure, absolutely you know, so I think in terms of how you might evaluate and write goals for someone with a progressive condition. The overall philosophy, with the LIFE participation approach you know, in my experience that doesn't change too much you know you're really doing that motivational interview you're learning. How their whether it's aphasia or memory loss or behavior you know behavioral changes. How was that preventing them from participating in the activities and conversations, they want to participate in, so I feel like that that part isn't you know. Really distinctly different. What is different? One thing is in terms of how people develop these symptoms, over time, so it's obviously for many people very gradual. That their first noticing the symptoms and then they're getting worse over time, so they do have the ability to already developed some different compensatory strategies that they find or helpful too. Their care partners also find that are helpful to manage some of these symptoms so compared to having a stroke, where it's just suddenly everything it has changed so that's important to consider as you're forming your goals, but what goes along with, that is, the risk of social withdrawal, so you know it's kind of the opposite usually have someone with a stroke, you know, we have all this social withdrawal and in the beginning, but then as they're going. Through the rehabilitation process and then long term the goal is to reintegrate them, you know into the Community with those social interactions with different dimensions syndromes it's quite the opposite, you know at first there perhaps staying pretty connected and then, as things get worse. Then we're starting to see that withdrawal So how do we help to prevent that? Um I think another difference in terms of therapy is that you really need to anticipate that they are going to progress in their symptoms. And how do we anticipate those future needs, so we may or you know actually need to introduce strategies, especially compensatory strategies? Before they're actually needed and then also knowing over time that we have to be realistic in the goals that we're setting and knowing. That you know, increasing care partners support, increasing the use of visual aids and whatnot those will likely be needed for them to meet that life participation goal. The goal should not be getting them more independent, it should be understanding that they're going to need some more support so Those are some of the key differences, I think, with a progressive condition.

Jerry Hoepner: And I think that makes sense, and I know you talk a lot in your work, about the importance of counseling and education, as you know, to let people know not just the individual with dementia, or whatever the progressive condition is, but their partners that are care partners as well.

Becky Khayum: Right absolutely.

Jerry Hoepner: You know, as you as you think about those differences and I, like the way that you said from your standpoint it's not a whole lot different, right? I know that you've written a little bit about the focus on debilitation versus rehabilitation and I’m thinking about how that might apply more broadly to even stroke-based aphasia right. So, I know Michelle Bourgeois writes about the flip the rehab model, and it seems like a lot of those principles of you know, focusing on the positives and keeping people engaged are really pretty shared I don't know if you have thoughts about that.

Becky Khayum: I know, and certainly with the flip the rehab model, you know, Dr. Bourgeois has been my mentor you know I remember first attending one of her talks at ASA and of course Audrey had already told me, you know you need to connect with Michelle and I was just so energized you know and it completely changed the way that I thought about assessment in terms of really yes flipping that around and how that goes right along with the from you know live participation model because we're having more of a client directed assessment and goal formation, rather than yeah the clinician doing that yeah absolutely.

Jerry Hoepner: Well you're really natural with transitions between questions because I was just gonna talk to a little bit about goal setting, I know that you've written about this in a couple of really nice papers and one of the things I value about them is that they are so practical and so easy to digest for everyday clinicians and all of us, to be honest and you wrote a paper in 2015 with me Emily Rogalski and then he wrote another in 2015 with Rachel Wynn and talked a lot about goals for individuals with dementia or primary progressive aphasia from an LPAA standpoint and just really interested in your suggestions and thoughts about that goal writing process.

Becky Khayum: Oh, absolutely and I, we certainly already touched upon this and the last question where you know I tell us if you aren't using a person-centered kind of the flip the rehab model assessment. Overly for anyone with any type of cognitive deficit, but particularly for those living with dementia syndrome. If you're not doing the right type of assessment then you're not going to be able to formulate the right types of life participation goals. So, certainly, I think, in some graduate training and externship you know, say, a fly training I think some clinicians are very used to having to give a standardized test and a score and certainly that's where Dr. Bourgeois really says well that should come last you know really develop. You know, what are their needs? What are their goals? and then investigate what specific impairments. Auditory comprehension memory loss might be impacting their ability to meet those goals. So, the first you know suggestion is it's that purpose product mismatch if you're diagnosing someone that's great you know use your impairment, a standardized test, but you will not be able to form a life participation goal. If you're using an impairment based standardized tests and then the other barrier, I think that we've talked about recently on an Aphasia Access panel on documentation. Was the electronic health record systems are designed for it and impairment based goal writing? I mean you just click, click, click. Okay, they have aphasia well great here's generative naming you know and whatnot if they have memory loss will are they oriented, and so it leads clinicians to automatically form and pyramid vehicles so that's where we'll talk, maybe. Later in the podcast about how can you secure reimbursement, you know for people living with a progressive condition, but as far as goal writing you know. Certainly, again very similar to anyone with TBI or stroke and just aphasia what are their goals, how did they want to increase participation in life activities? Writing out those goals with them, and a lot of times I use, who are the people you want to talk with you know, following a from where are the environments that you want to talk with people. Or that you can't participate in because of your memory loss, because your behavioral or visual deficits. And then, what are you know what specific topics or activities, you know, do you want to talk about our participate in so. Really, I use those prompts to help write the goals and then the only real difference than is making sure that the level of care partners support and the accuracy and the use of aids and supports that it's realistic that we're not trying to say 90% accurate in Japan it so that would be the biggest tip about goal writing you gotta be realistic, especially over time.

Jerry Hoepner: Absolutely, and I appreciate carrying that through that idea of the flip the rehab model into the goal writing in I know you're a big proponent of motivational interviewing as am I, and one of the things that William Miller always says is don't ever do an impairment based assessment on your first interaction with someone and that's what we in so many times that's what people do right they begin with that and it's like. The biggest killer of relationship build building that you could you know, and when you're trying to find out what does this person want and need to do and what kinds of things will help support that yeah so beginning with those questions as a better place, then.

Becky Khayum: Yes, for sure

Jerry Hoepner: yeah absolutely. So, how would you apply the life participation approach for someone living in long term care with behavioral challenges things like that?

Becky Khayum: Certainly, yeah and I think that's a tough one, you know, and certainly one where you absolutely need collaboration with occupational therapists, social workers, counselors you know that are also involved in the individuals care and certainly also you, it is sometimes difficult to directly in you know intervene with the person, you know, in terms of this is an intro you know intervention that directly changes the person in their behaviors. It's really more we're changing the environment around them and we're educating staff members in more you know memory care communities or Assisted Living and family members to provide the environmental supports and communication strategies visual supports and certainly that's difficult, you know. Dr. Natalie Douglas, as you know, done a lot of research on caregiver support in long term care. And so that's certainly another topic, but yeah for someone with behavioral challenges in terms of utilizing the life participation approach I think Jennifer Brush. You know just another lady, you know expert in long term care, using the Montessori approach um she always says, you know a lot of times whether it's Alzheimer’s dementia or behavioral difficulties. People have a lack of a role, you know, and in some you know you have to get to the root of what's causing the behavioral challenges but oftentimes they don't feel like they have a role anymore, and a purpose in life, so I always like to start there and then also certainly do the environmental assessments, working with OT. Really training family members and staff members keep a behavior log you know let's actually see what the triggers might be so we can better think about interventions. But then again holistically will what sorts of activities and passions did they have prior to coming to the long term care community, and how can we figure out a way to modify that activity and if we allow them to participate in that? And you know, certainly, we often will see a reduction and those behaviors we don't need pharmacological management, which is so often what you know places do and just a quick example of that you know one. I met a professor, who had just been moved to a memory care community separated from his wife and was just so confused about why he was there, and you know incredibly respected expert in in so many different areas, people and so he was hitting you know people at the front desk asking to call his wife, you know every five minutes. And so, when I came in, you know they said always an artist we've been trying to get them involved in art activities and whatnot but he doesn't want to. Um so talking with the family, you know, I was able to quickly learn know people address them is Dr., you know, a professor, first of all, second of all he realizes how his art isn't the same and the quality of what he used to do so, he doesn't want to participate in that he loves to teach. That's what he wants to do. And so we were able to create a PowerPoint with him on topics art and travel that he loved to talk about, and you know he had memory loss. Actually, Alzheimer’s dementia with behavioral you know challenges related to this lack of a role and we had signs, you know that Professor so and so is our guest lecturer today, we had a letter inviting him to be the guest lecturer at the community and then he gave his lecture I think three days a week, and so it didn't completely solve all of the challenges that came up but it drastically reduced you know his behavioral challenges, because we use that light participation approach for him.

Jerry Hoepner: I love that story for a few reasons, one that you know they identified that he was an artist, but that he went beyond that recognizing that. That was even a challenge for him, because it was not the same art that he was able to produce before and just reengaging him in a meaningful way giving him purpose and that, like you said that role. That's the LIFE participation approach in terms of engaging in something meaningful and scaffolding, the environment and the people around him so that could be accomplished yeah that's fantastic.

Becky Khayum: Yes, absolutely.

Jerry Hoepner: Terrific, I’m so glad you mentioned Jennifer Brushes name, too, because she and Natalie Douglas because they've contributed so much to that context.

Becky Khayum: I learned so much from them.

Jerry Hoepner: Absolutely yeah, yeah. Okay um so I know that one of the common things that comes up in discussions and Aphasia Access panels and when we're talking about return to group kinds of context is how a person with primary progressive aphasia might best participate in and aphasia Center and or a group over time, as we know that you know symptoms are going to continue to worsen and more cognitive challenges arise, and what are your thoughts on that and how to make that work.

Becky Khayum: Yes, that that is certainly a tricky, tricky topic, you know, and again I think one that probably doesn't have one answer.

Becky Khayum: In every person may be different, you know just talking about tailored approaches it's likely going to be the case in this situation. On the first question, you know will, should they should they participate in groups or centers that are predominantly made up of people living with stroke and aphasia. Knowing that they're going to get worse over time for some people, the psychological impact of that watching themselves get worse, you know, during the groups, you know people with PPA. Most tend to be very cognizant you know of their deficits of their predicament and so psychologically, how are they doing? And I’ve worked with some people who they don't they don't, mind you know they they're just so happy to be talking with other people who have aphasia and that social interaction is so meaningful to them that they don't really think too much about the fact that maybe they're getting a little you know worse over time, but that's different you know, certainly for everyone, others, you know, certainly will get very anxious. I think, from the beginning it's good to have a good relationship with their family members as well, and just having that talk, you know from the get go, you know we just want to be open with you, this is a group that's predominantly people living, you know with stroke and just aphasia. Just knowing with PPA you know conversation can get a little more challenging over time, it might be, you know emotionally difficult for them. If we ever find that we think that they're not enjoying the group or it's challenging for them, they don't seem to be getting. The social interaction out of it that they need, and maybe documenting that you know and kind of a systematic way over time being open with the family and saying we just don't think they're getting out of this, the meaning that they did before, but the critical thing is to have other programs or groups to refer them to so it's because that's the meaning that's behind the groups who want to continue that role for them, and so that's where, if you have a local aphasia center, day programs, or whatnot that may hopefully have activities and whatnot that are stimulating and then certainly with coven I think the number of virtual groups for just people living with PPA has really grown, I found and so it's allowed people to participate in an efficient group and I certainly in the ones that I lead, I found a broad range of people with different abilities and those who have more difficulties you know their care partners help jump in so you know those certainly there's no one answer to that, but those are just some. And lastly, I guess, I forgot to mention we're so great at thinking of different types of compensatory strategies and so certainly before. Making that decision, you know that Okay, they just can't participate in the group anymore trialing a lot of different interventions, you know that we might use with someone who has memory loss or whatnot I’m trying those first before we decide that maybe they're not the best fit.

Jerry Hoepner: Right so as long as it's working keep going with it is what I’m hearing you say, but when that no longer becomes a viable option looking for other options, where they can participate, and where they have the scaffolding and support to do that.

Becky Khayum: Yes, that's usually what I would typically recommend for this situation yeah.

Jerry Hoepner: And one thing I’m thinking about the people with primary progressive aphasia that are tend to our groups here and also our aphasia camp that connection that's established for the care partners becomes really a close bond to so thinking about what the next step is for them, maybe.

Becky Khayum: that's you know that's such a good point. In the other in the PPA chats that I run a lot of them, we have a whole separate breakout room just for care partners and yeah, there doesn't even need to be a facilitator in that room, I mean they I’ve been told, over and over again, the benefit that they get from just having a chance to connect with other care partners and I’m so glad you brought that up because I do think for them meeting with care partners of people who had stroke induced aphasia would probably not, and this is just me again my personal opinion, I don't think it would be very helpful because a lot of the discussion is about the fear as things get worse, not knowing what's down the road and then for those who are further down the road what they've learned what they've tried and sharing information about that so I’m so glad you brought that point up about care partner support yeah.

Jerry Hoepner: yeah equally as important as those connections for the person with primary progressive aphasia for sure. I mean, what are the common threads that we've been talking about in this conversation, you know, are the things that you're engaging people with our real-life meaningful engagement figuring out creatively how to accomplish that, like the exam the example you gave of the teacher and so forth. I’m wondering if you can walk us through an example of applying life participation to someone with living with Alzheimer’s dementia and how that might be a little bit different for someone who, at least initially starts with more of a language focus and PPA.

Becky Khayum: Sorry sure yeah so again, you know with Alzheimer’s dementia now we're thinking about with that memory loss the short-term memory loss. How, you know again we're going to identify an activity that's important to them so just give me one example of a woman who really love birdwatching and that was something that she said over and over again, you know I am would repetitively asked her spouse, you know. I want to go look at the birds because it's been something that they've done for a long time, but just forgetting that they've already just earlier in the day, maybe gone and seen the birds, you know and not knowing whether they're going to go do that next and then having difficulty telling others about the experience, because she didn't remember what they saw what verse she saw and whatnot. So, thinking about you know really documenting from her perspective, what she wants to do and it's mainly you know would love to see the birds would love to share that with others. And then from the communication partner standpoint, just as important, was interviewing them about what is their experience what are their frustrations, you know, and for them, it was these repetitive questions all the time figuring out how to talk about you know, allowing her to talk about birdwatching with other people, so they aren't dominating that whole conversation, you know that she can remember with you know with supports and do that herself. So, really, in that case it's again, you see a lot of Dr bourgeoise work, you know it versus thinking about Okay, how do we use visual aids to help her come up with more of a routine and schedule and the answers to her repetitive questions in a memory station and a memory wallet you know so in the hall, and we created a little memory station, you know with the dry eraser, it clearly has the dates and when they're you know going birdwatching that day, where if they're going in the backyard if they're going somewhere, but then, also in that memory station really having collecting pictures and experiences to put in a memory book also I love the bird watching walks where you can just stated, and put Okay, these are the birds, I saw today, this is where they were. And then being able to use those visual aids to communicate with others. Certainly, care partner, helping to take videos and pictures, you know so they can scroll through the phone and show others and then Lastly, you know for people who are more impaired, you know and would benefit from simple bird Montessori activities, you know, and so it might be bird matching and they have so many on Amazon, like so many neat bird large picture books and Bingo and matching cards and whatnot so really kind of maybe sorting feathers or whatnot you know there's so many different activities, you could do with birds and showing them videos online pretending like you're going bird watching online they have all these virtual bird feeders now, so I think again it's thinking about here's the memory loss here is what they and their care partner once for the school and then, using the appropriate supports and carrot partner training to get there.

Jerry Hoepner: yeah, that's fantastic I, you know as you were talking through that I was just kind of anticipating thinking. You know, in some of the papers that you've written you talk about the use of photo stream and how easy, that is to flip through post photos, but that is just the kind of the antidote to you know the behavioral challenges that come about when someone isn't engaged in something meaningful. And in these are ways and you have such creative and practical ways to accomplish that like you said as a person is progressing, to be able to use the video resources that are out there to keep that person engaged. The same videos that I have my cat watch right? that's right same kind of thing like a rare bird at my birth feeder today, so that one occasionally, yeah I mean I just think that's so powerful and such a such a stark contrast to an approach, where you do decontextualize things that you know I said I would get this in there at some point, you know the “throw out the memory books” paper that you wrote for the ASHA Leader and I just think as a mantra that's a pretty good mantra right throughout that.

Becky Khayum: Throw out the workbooks.

Jerry Hoepner: Excuse me that's what I meant, “throw out the workbooks” because right meaningful engagement is what's going to change that. So, I really just you know appreciate your perspective on that and I do encourage our readers to go to those resources that will have linked to the show notes. There are a couple of articles that really have some good, practical suggestions for exactly that kind of stuff so I’m excited for people to check that out. So, you said you wanted to return to this topic, a little bit earlier and I think I got off track, but is LPAA treatment for people with dementia reimbursed by Medicare and other insurances and, if so, how do you document that so that, how do you document status for someone who has a progressive disorder.

Becky Khayum: Sure, sure, and I think this is one of the biggest barriers, you know in across the rehab settings you know whether it's outpatient or home health or in a sub-acute you know rehabilitation facility is the way the productivity, you know expectations, you know some places, you don't get paid for an evaluation, you know some in sub-acute care whatnot and so or it's you know, compared to the treatment portion they you know want you to do a very, very quick evaluation and then more focus on the treatment. And so, really, you have to think about how to get around some of these restrictions, you have to do a standardized tests, you only have this long to do the evaluation okay well how do we get around this you know so I think the first thought is that dispelling some myths, you know Medicare doesn't require a standardized test that's a myth most companies require that but they really don't they're looking for more what's in all the electronic health record systems and narrative so there's a whole section for a narrative where you can write that motivational interview what you discovered what their goals are where they're at right now and then. There, instead of using this standard, you know goals that they have that you just click you can create your own kind of gold bank with more LPAA goals just done a template and just copy and paste those. So, if you had a bird watching you know goal, you could easily then insert okay gardening you know instead or cooking into that and so there is a way to cut and paste goals meaningful goals into the electronic health, you know evaluation. And if you then make those realistic goals and can show progress because you're not going to be able to show progress for that long you know for someone with PPA. Okay generative naming, you know I always say you know you're working on generative naming with animals well unless they're a veterinarian or a zookeeper. You know that that may, they may not make the most progress on that goal and that may not generalize to other contexts. Rather, if you're working on words related to birdwatching and they love that you know you can then document improvement, you know with script training and whatnot. So, I getting off topic, but you know so that's how you would write the goals you can show the progress on a standardized impairment based test, if you think about it, if someone with a progressive dementia just got the same score over time, that would actually indicate improvement because they should be getting worse over time. So, and certainly using more functional tests, like the CADL (Communication Activities of Daily Living), you know, like the ALA (Assessment for Living with Aphasia) also go a long way, you have to use a test, you have to use self-test go to those you know more functionally based test um so that the answer is absolutely Medicare other insurances. Certainly, some you know united signal, or some of those you do have to get preapproval or whatnot that that can be more challenging but Medicare, BlueCross, and many of those it's all about your documentation and knowing how to write that narrative and use that goal bank of functional goals, so, in short, yes. Absolutely, you can get reimbursement.

Jerry Hoepner: So that I mean it all comes back to those goals and like I said before, you've got a couple of really good resources on goals and, as you were talking It made me think of the addition that you have on your goals in order to do whatever right that is having that in mind, is connecting the LPAA to the goal right that in order to do what I do whatever happens.

Becky Khayum: yeah, yeah exactly what, if you have a goal and it doesn't have that at the end you know, in order to participate in conversations about what birdwatching you know leisure activities, exactly is that helps it to directly target that life participation activity yeah.

Jerry Hoepner: It comes down to just documenting that right and knowing that you're not bound to any of those other specific impairment-based measures yeah agreed. Well Becky, this has been a fabulous conversation, and I hope we get to have more conversations, but just to close things out today you've talked about some really strong influences and mentors like Michelle Bourgeois and influences of Jennifer Brush and obviously Audrey and Natalie Douglas but are there any kind of go to resources that you want to let our listeners know would be a good place to start if they're thinking about LPAA with progressive conditions.

Becky Khayum: yeah, no. That's such a good question and you know off the top of my head certainly any articles, you know that any of the people that you just mentioned. Their articles just contain a wealth of information, you know about everything that we've talked about today, but much more you know and examples of therapy. You know Ellen Hickey as well, has published a lot I also forgot to mention earlier, I think the counseling component, you know to Audrey’s counseling book. Counseling for people with a progressive diagnosis is also very different than someone who may be getting better over time so having that training and counseling is also critical so any resources on counseling. Certainly, just knowing for people who come to you, and they may be, or just diagnosed with a dementia syndrome. Being aware of where accurate information is because, when they get onto the web they're doing a Google search they're joining a Facebook group for PPA, they're getting all their information from other care partners, perhaps are people living with PPA and so um yeah we recently, I’ve done, you know surveys and one of the top ones is Oh, you know is we want one place where we can go or at least a list of accurate places, so you know going to giving them the links to Alzheimer’s disease centers like Northwestern where you know, on their website that's accurate information I think those are also go to resources in terms of disease education for families and at the same time providing counseling and helping to explain their diagnosis and in an aphasia friendly way that's also a problem you know that I see come up quite a bit yeah.

Jerry Hoepner: yeah, that's a really fantastic point in a in a great way to round things out anything else that we missed or you want to add just before we close things out today.

Becky Khayum: Right. No Jerry, I think you've been very comprehensive, you know in in the range of topics we talked about today and yeah I mean my last thoughts would be, you know any speech language pathologist or other health professional you know, listening to this podcast today now hopefully learned a little bit about taking this beautiful model, you know LPAA and how it is so transferable to different types of dementia syndromes and it's certainly with knowing that especially with Alzheimer’s dementia, the prevalence is only getting higher every year of people living with these progressive conditions it's critical that our field really steps up and says we can treat help work with these individuals we're trying and then provide that the interventions that are based upon LPAA philosophy. So yes, thank you for having me.

Jerry Hoepner: Wonderful, it's been really my pleasure just a fun conversation, again, I look forward to catching up with you at other conferences and so forth, so thank you again Becky and we'll close things out for today.

Becky Khayum: sounds great Jerry thanks so much.

Jerry Hoepner: On behalf of Aphasia Access, thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org. If you have an idea for a future podcast series or topic, email us at [e-mail]. Thanks again for your ongoing support of Aphasia Access.

Articles & Resources:

Rogalski, E. J., & Khayum, B. (2018, July). A life participation approach to primary progressive aphasia intervention. In Seminars in speech and language (Vol. 39, No. 03, pp. 284-296). Thieme Medical Publishers.

Morhardt, D., Weintraub, S., Khayum, B., Robinson, J., Medina, J., O’Hara, M., ... & Rogalski, E. J. (2015). The CARE pathway model for dementia: psychosocial and rehabilitative strategies for care in young-onset dementias. Psychiatric Clinics, 38(2), 333-352.

Rogalski, E. J., Saxon, M., McKenna, H., Wieneke, C., Rademaker, A., Corden, M. E., ... & Khayum, B. (2016). Communication Bridge: A pilot feasibility study of Internet-based speech–language therapy for individuals with progressive aphasia. Alzheimer's & Dementia: Translational Research & Clinical Interventions, 2(4), 213-221.

Rogalski, E., Roberts, A., Salley, E., Saxon, M., Fought, A., Esparza, M., ... & Rademaker, A. (2022). Communication Partner Engagement: A Relevant Factor for Functional Outcomes in Speech–Language Therapy for Aphasic Dementia. The Journals of Gerontology: Series B, 77(6), 1017-1025.

Wynn, R., & Khayum, B. (2015, August). Developing personally relevant goals for people with moderate to severe dementia. In Seminars in Speech and Language (Vol. 36, No. 03, pp. 199-208). Thieme Medical Publishers.

Khayum, B., & Rogalski, E. (2018). Toss the Workbooks! Choose treatment strategies for clients with dementia that address their specific life-participation goals. The ASHA Leader, 23(4), 40-42.