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Episode #106: Prioritizing Life Participation for Individuals with Mild Cognitive Impairment: In Conversation with Dr. Alyssa Lanzi
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Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.
I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature Dr. Alyssa Lanzi. In this episode, we'll be discussing Dr. Lanzi’s research on mild cognitive impairment and the role of the LPAA approach in serving individuals with mild cognitive impairment and dementia.
Biosketch:
Alyssa M. Lanzi, Ph.D., CCC-SLP, is a speech-language pathologist and Research Assistant Professor in the Department of Communication Sciences and Disorders at the University of Delaware. She is an executive committee member of the Delaware Center for Cognitive Aging Research at the University of Delaware. Dr. Lanzi is the PI of a K23 award from the National Institute on Aging to investigate the effects of an intervention designed to improve the independence of older adults with mild cognitive impairment from probable Alzheimer's disease. She is also MPI of awards that develop, test and disseminate a large-scale online database to study the language and cognitive skills of older adults to help develop cost-effective biomarkers to identify adults at risk for dementia from Alzheimer's disease. Dr. Lanzi's research broadly focuses on investigating person-centered assessment and treatment approaches for individuals with mild cognitive impairment and dementia and prioritizes the implementation and dissemination of evidence-based practice to practicing health professionals.
Take aways:
- The LPAA fits interventions for mild cognitive impairment too.
- We need to focus on training the next generation to understand the applications of LPAA to other disorders and contexts.
- You don’t always need a standardized test, you can use goal attainment scales to measure anything.
- We need to be prepared to counsel individuals with mild cognitive impairment, as we are often the discipline having those conversations.
- When we intervene with individuals with mild cognitive impairment early, we can involve them as collaborators.
- There is a continuum of counseling needs that changes over time. See Alyssa’s counseling plus paper in SIG 2 Perspectives.
Interview Transcript:
Jerry Hoepner: Hi Alyssa. Good to see you.
Alyssa Lanzi: Hi, good to see you. I'm happy to have a conversation with you today.
Jerry Hoepner: Likewise, I'm looking forward to this conversation. It's kind of tradition that at the beginning of podcast we talk a little bit about your journey in your path to the life participation approach. So, I’m hoping that you can share a little bit about why an LPAA approach is so crucial to your research and clinical interactions.
Alyssa Lanzi: Yeah, Absolutely. Well, thanks for having me, and I’m excited to kind of give a glimpse into how we can start to think about the LPAA approach outside of aphasia, because I think I’m a little bit unique in that way. And I am clinically trained as a speech language pathologist, and I was fortunate that most of my master's training was in a really strong university-based life participation approach model for aphasia. So, I had a large amount of experience working with Dr. Sarah Wallace and Katerina Staltari, and really thinking about group-based approaches for aphasia care. And I really fell in love with the functional nature of that model and with my master's thesis really tried to think about, well, how can we do this with individuals at risk for dementia with thinking about group-based approaches and functional care. And then I went on to get my PhD at the University of South Florida with Michelle Bourgeois. With a really strong research focus on functional approaches for mild cognitive impairment and dementia but also had the opportunity to work clinically the entire time during my PhD at voices of hope for aphasia under Jackie Hinckley, really learning about the life participation approach for aphasia. So, I feel super fortunate in that I have a lot of clinical work and exposure with the life participation approach that really has driven my research. Although I don't clinically practice with the life participation approach anymore, it really is a key foundation and a key kind of framework to how I have conducted all of my research and run the lab at the University of Delaware, which I'm currently a research assistant professor at right now.
Jerry Hoepner: Excellent. Yeah. And thanks for sharing that, I really believe there is not a lot of transferability and generalizability of the LPAA in the approach being someone who has one world or one foot in the traumatic brain injury world, and another foot in the aphasia world. There's definitely some strong carryover across those contexts, and I think members of aphasia access are really interested in thinking about how that extends into those contexts. So, I really appreciate that. And like I said before, you have quite the pedigree in terms of experiences with very life participation approach minded academics, and having some of those clinical experiences, is really just so crucial for those, you know, when you step into the research world that you're doing something that really applies. So, I know you already talked about Sarah Wallace and Dr. Satari and Dr. Bourgeois and Jackie Hinckley. But are there other people along that journey that have kind of shaped the way that you think about LPAA applications to aphasia but beyond obviously?
Alyssa Lanzi: yeah, I think you know, really the names that you mentioned were kind of the key mentors in the process. However, individuals like Roberta Elman, and really her approach to kind of book and learning and reintegration was structured. But flexible activities are really kind of key to my thinking, and also, as you know, an early career researcher as well. Folks like yourself and Tom and Katie really show how we can also train students in this approach as well, which is kind of being key to figuring out how I really run this lab that's based in life participation. That's not only my line of research, but also supporting the next generation. I feel fortunate in that I have mentors that really have integrated a life participation approach in many different settings from big R1 universities to smaller, R2, and R3 universities to clinical practice settings to nonprofits. And I think I've taken pieces of all of those to really support my research and teaching pedagogy, and really life participation in that way, and without aphasia access, I wouldn't have had access to those leaders and mentors in the field like yourself, and it really has given me an opportunity to have conversations with these folks, and every single conversation has really impacted and influenced my work thus far.
Jerry Hoepner: I think that tends to be a really common reflection on aphasia access that everyone is so accessible. So, the name really says it, and willing to have those conversations. And certainly, that supports us in all of those avenues, research, clinic, well and academic in terms of teaching as well so completely agree with that.
Alyssa Lanzi: I think that's what's a beautiful thing about aphasia access and the life participation approach is that it's not just research, either. Right? It's research, it's clinical, it's teaching, it's mentoring, it's service. And I think we will probably talk about in a little bit. But in all of my work that's really what I try to think about, I don't just try to think about, you know, research, I try to think about well, how can I study this so it can actually be implemented in clinical practice? And then how can I also teach the next generation using this approach in that way? And I think that framework, although we often think of life participation as like a clinical approach. In some ways it's really this entire framework to all those kind of core components that are necessary in terms of teaching, research, clinical care and service.
Jerry Hoepner: I really love the way that you describe that, because I don't know that that's been done really clearly before. But there is a thread running through all of those pieces, and it kind of speaks to your experience with Jackie Hinckley in terms of thinking about that implementation piece, and how we make sure what we're doing matters, and is the right stuff in the first place. And obviously teaching is near and dear to my heart, and being able to frame that in a way that students understand, but also feel like it's not something that's high in the sky that you know only a few people do, but that's accessible and usable by everyone, and even for my students. I mean, I know that a lot of my students will end up in a school setting, and I know that these foundational principles of LPAA still have relevance to them. So, I say, you know, regardless of where you're going. This content matters, and it should shape the way that you think conduct LPAA work.
Alyssa Lanzi: Yeah, you don’t have to be at a center to conduct LPAA work, you don’t have to be with people with aphasia to conduct LPAA work, and that's the cool part of it. And having these conversations is an opportunity to kind of brainstorm with one another of, well how do we take you know, from the traditional mold, how do we kind of break that and really think of it as threads that can be kind of interwoven into all these elements that are core components of our discipline in a lot of ways.
Jerry Hoepner: Agreed. Maybe that's a new task for aphasia access worker to kind of map all of those pieces, because I do think not. Maybe individuals have those pieces, but it hasn't been all put together. So, I appreciate that overview.
Alyssa Lanzi: And yeah, hopefully.
Jerry Hoepner: well. I've been having fun re-reading and refreshing myself on your work on. I used a lot of it within my teaching so. But it's always fun to see when you read something again that you pick up something that you just didn't even like process before or you don't remember you process it, maybe. But clearly, I mean, there's this thread going through all of it about person-centered strength-based care right at the heart of all of that. It really one of the things that stood out to me the last couple of days as I've been meeting is that emphasis on fostering choice and collaboration along the way in every single step with the with the individual, with mild cognitive impairment or dementia, with their family members. And I think that's really crucial. I mean whether you're kind of choosing an external memory aid, or script, or whatever is best right. Can you talk about how you facilitate those choices? Maybe a little bit about the kinds of tools that you use on one end, but also a little bit about how you just foster a mindset of that collaborative decision making, because, you know, sometimes people can just want to defer to you and say you tell me so. I'm interested in your thoughts on both of those pieces.
Alyssa Lanzi: Yeah, Absolutely. Well, thanks for the flattering words, and I’m happy. You picked out the core elements there, because I think those are really kind of the key words of a lot of the work that I try to do, and starting really with person or family centered, in that way, and it's tricky. I think a lot of people say that their work is person centered, and we can always argue. What do you mean by that? And how do you ensure that, same with functional right? But something I try to teach people, and my students are just because it's related to something practical doesn't necessarily mean it's a functional approach, either, you know, so really kind of parsing out by what we mean by that. But in particular, with working with folks with mild cognitive impairment and dementia, the goal is to really support their independence for as long as possible, and then to support their quality of life right? And a lot of times when thinking about people with chronic aphasia, it's very similar in that way, right? And that, you know, kind of gotten to a point. Not that improvements can no longer been made, but the shift is really about like, well how can you live the best life as possible? Right? How can we get you participating in as many things as possible, and that’s the same mindset when we're working with people with mild cognitive impairment in particular. So, when I’m trying to design the treatment approaches that I'm testing with my clinical trials. Really, the whole framework is, how can we make something structured and standardized but flexible to that individual’s needs. So, I think it starts from a treatment level, figuring out what are the active ingredients? What are the things that can't be changed, what are the core elements that can't be changed. And then, once we figure that out, then the meat of the sandwich, you know the meat of the treatment can be customizable to that individual right. And a lot of this work really comes from McKay Solberg, and views of cognitive rehab as well. But I think, when we think about person centered, we need to think about what are the core elements of this evidence-based approach? What are the active ingredients? And then what are the things that can change in between right? And when we're talking about external memory aids, it's not enough just to give somebody a calendar right. We're not seeing that individuals actually continue to use this calendar later on. And I would argue that's because of 2 reasons, one because we didn't systematically train them, and the use of it and 2 is because we didn't include them in the process from the start to the finish. And you are asking about what kind of tools and what things can be helpful. And in terms of thinking about goal development tools, a lot of times we can lean on our colleagues and occupational therapy and use a lot of the models that they have for goal development. So, they have the COPM which I'm probably going to butcher the name, but it's the Canadian Occupational Performance Measure, I believe it is, and that can be a really great tool to have a structured approach to goal setting. Same with goal attainment scaling, and incorporating some motivational interviewing techniques on top of it. But the key is that you have some type of structure, some type of evidence-based approach, on top of the conversation that you're having right, just asking somebody their interests is important, but we need to think about what's the best thing for our buck, since we have such limited time with them. So those 2 tools, in terms of goal setting have been really helpful for me, paired with using patient reported outcome measures and kind of figuring out how to use that as an initial conversation, and then paired with some further probing of tell me more about these items. Tell me more about the issues that you're facing. And then what I think is tricky, and where I relate most to my life participation colleagues are, what are the outcome tools, or what are the treatment planning tools that we can use to design these participation approaches. And it's hard because most of the outcome tools that we have are developed for looking at impairment-based improvements, right? So very decontextualized type tasks and that's really tricky. If the treatments that we're doing are all meant to be functional and person centered and improved participation. But we're not looking at necessarily improvements in worthless learning, or serial sevens or things like that. So, I couldn't figure out any tools. So, part of my dissertation work was designing a measure that was really aimed to help drive treatment planning. And then look at if there's gains an actual participation, so that tools called the functional external memory aid tool, and my lab in the last year or so have tried to do a lot of work, and coming up with free resources to train students, clinicians, and researchers, and how to use this tool to drive treatment planning because it's a little bit of a different way than we think of how to use assessment tools. Traditionally we think of assessment tools to tell us is that that person has an impairment or not and this is not designed in that way. It's really designed to tell you how to design your treatment, and a functional meaningful in person-centered way. I don't have great answers of what the tools are, but I think collaborating with clinicians and collaborating with evidence-based researchers really helps us to try to fill that gap in some ways.
Jerry Hoepner: Yeah, and I think you got at part of it when you talked about goal attainment scales that you could make that a measure of any goal that the person identifies themselves. You don't necessarily have to try to fit a tool around that you can just measure what they hope to change right, or what they hope to sustain in terms of function. So, I think that's really good and really helpful. Just want to kind of circle back to a couple of things you talked about active ingredients, and how to really recognize what those active ingredients are, what the cores are, and what is content that you can do without, so to speak, made me think of some of the recent work in RTSS from the standpoint of really mapping that out. But I think that principle of my own is really important. Just to be able to say what is at the core? What do I always need to do? And what is kind of supportive of that, and can be individualized? So that's really helpful.
Alyssa Lanzi: That shouldn't be on the clinician either right? If you’re a clinician listening to this like that shouldn't be on you. This is on the researchers to consider from the beginning, and this should be really clearly outlined in this plan. And it is somewhat hard to figure out what some of these analyses like what are the active ingredients? But that's really, if you go to a talk, if you’re a clinician on this call like that's what you should be asking, when you go to these talks like, what are the active ingredients? What do you think is really evident of what's making the change? It's not on you to decide. It's really on researchers to be thinking about this from the beginning, and not for you to try to figure out by any means.
Jerry Hoepner: Yeah, I think that's a really some really sound advice, because finding out what those active ingredients are that's really crucial, and I think there's times, and I won't say who, but I reached out to a researcher once to do some work related to their work, and I said, “So do you have some place where you have more specific information about what exactly you did?” And they said “it's all in the paper” and I was kinda like no, it's not all in the paper, and I think we're getting better at that, providing that information, at least to the best of our knowledge, what those active ingredients are. And you know this is on the researcher to provide that, and then to allow that clinician to be able to work within that framework. So, I'm really glad that you said that. I also wanted to highlight the fact that you talked about your measure, and I think the acronym is FEAT right?
Alyssa Lanzi: FEMAT, yep, close.
Jerry Hoepner: Sorry. Missed it. I missed one letter, but we'll make sure that that is in the list of resources at the end as well, so that people know how they can access that information, and you mentioned that you're trying to make as much freely available as possible. So I think that's really helpful for our listeners to know where to find that information.
Alyssa Lanzi: Yeah, the tool can be downloaded completely for free. And there's educational and training resources for free on there as well as we just publish an open access manuscript, describing with case examples of how to use it as well, because if we as researchers want clinicians to use our work. Constantly, we're hearing the biggest barriers pay walls and everything else so really trying to make this as accessible as possible, so that individuals can actually use it in their practice.
Jerry Hoepner: Well, that's really excellent. I really appreciate it, so I’ll double check with you at the end, and we'll make sure we have all of that information there for the for the listeners to follow up on that. So, getting into the connection and the differences between someone with aphasia and someone with a mild cognitive impairment. There's a lot of overlap and most communication supports. And as I was reading your work, I was like overlap, overlap, overlap. But there's also some ground that isn't overlapping individuals with aphasia, particularly when you get to the cognitive kinds of constructs, and so forth. So, in terms of supporting someone with MCI or dementia. What are the key distinctions that you have in your mind about how to approach that. So, distinguishing them from maybe what you would use for a language assessment, or language support excuse me, for someone with aphasia
Alyssa Lanzi: I think the good thing is, there's many more similarities than differences. Right? We have this strength-based approach, this idea of participation, reintegration, isolation, depression. These are all major psychosocial factors that we know are associated with both populations and also acute. You know older adults are highest at risk. Right? We're seeing similar populations in some ways as well, so that strength-based participation-based reintegration, type approaches are all very similar. You know the key distinction or the key differences, I should say, is unlike people with a stroke, there wasn't an event that caused the impairments right, and that instead, we need measures that are really sensitive to early declines right? So, it's not like these individuals had a stroke or a brain injury, and immediately referred to speech, language, pathology. That's a very different pipeline to referral in that way. So, speech, language, pathologists need to do a much better job of advocating for our role early on where I don't think we have to do as much of that advocacy with people with aphasia now. Yes, all the aphasia folks don’t come at me either because I know there's plenty of advocacy work that we need to do as well, but it it's a little bit different right, and that once aphasia is diagnosed, it's pretty clear that SLPs are the one to go to for the most part. For individuals with mild, cognitive impairment it's a bit different. So, we need to do a lot of advocacy work, and many of our tools, unfortunately, are not sensitive enough to these early declines. What's exciting is that language is actually showing as a pretty promising tool, a pretty sensitive metric. So, hopefully in the next, you know, 5 to 10 years we're starting to actually definitely be involved because we're noticing language changes or sensitive to these early declines, but so one is the early process, and the referral process is quite different. The other key difference in my mind is the preparation for the future and that individuals of mild cognitive impairment are at a very high risk for developing dementia due to Alzheimer's disease and in my work I am talking about mostly these clinical syndrome due to Alzheimer's disease is usually the bulk of my work. But for individuals with mild cognitive impairment. We really want to set them up with these tools, so that we can develop really strong habits and routines now and really rely on the strength of procedural memory, so that if they decline, they have these really good systems in place, and that's a very different mindset than people with aphasia. So, the mindset in that way is very different in our role in preparing for the future. So, I think the referrals is probably the big pipeline. How they get to you. The coping and the depression is all there. But viewed a bit differently. It's not, Oh, my God! My life has drastically changed instead it's, Oh, my God! What's gonna happen, you know, in 2 3 5 years. So, it's all those same constructs are there, but the rationale and the underpinnings are a bit different.
Jerry Hoepner: I want to just go back to a couple of the points that you said again. When I’m thinking about that that early intervention or early work with someone with MCI, I’m always telling my students part of what you said that idea that we want to establish those routines and habits. But the other thing I always think about going back to our previous discussion is that's the opportunity for them to make as many decisions about their future as they possibly can, and do that planning for the future. I find that to be a really effective way from a counseling standpoint to get them involved in kind of planning their future, and also building that acceptance right like this is coming. What can I do now to kind of take ownership and to take control of that versus if I wait, then it's going to be someone else's decision.
Alyssa Lanzi: Exactly. Exactly. We describe it. A lot of you want to be in the driver's seat and not the passenger seat.
Jerry Hoepner: Yeah, great metaphor. And I just wanted to mention one other thing when you were talking about that the fact that language is a really sensitive measure. You believe for individuals with MCI and predictors of for their dementia. You know some great work with the dementia bank in terms of talking about collecting samples and interpreting those samples. So, I know I’m kind of putting you on the spot for this. But any thoughts about that might lead us in the future in terms of knowledge.
Alyssa Lanzi: Yes, stay tuned. We more than likely have a pretty big grant coming our way, which is going to be exciting. But the current biomarker tools for detection, are costly and invasive. We're having MRI and imaging techniques which are costing, You know, so much money. Blood is becoming, you know, blood based biomarkers are at least a bit more cost effective. However, there's still quite still, quite invasive, and there's only a certain person who wants to come into a lab, you know, and do those types of things. So what we're hoping is that we can use language, and that people can provide us with language samples in the comfort of their own home, right and really reflective of these functional tools and paired with these other. You know data, this, this other data that we're collected, we can make this really kind of informed decision or inform diagnosis. So, hopefully, you know, we can get to the point where that is the case that people can kind of just answer some questions from the comfort of their own home and their smart home and their computer. And you know, on the back end we can analyze their language, and then, provide them with some information about what we're thinking in terms of diagnosis and things like that. The most exciting thing to me in my mind about language is that hopefully, we can get a sample of individuals to participate who are actually representative of those who have the disease and that with many of these imaging techniques, and with many of the blood-based biomarkers and these invasive techniques, there's only a certain type of person you know who wants to come to campus and do these things, and most of our large databases are really white, high SES folks who are just, not those who are at greatest risk for the disease. So, what I'm really hoping for with as really the area of language grows, thanks to a lot of the work that we're doing, and Carnegie Mellon are doing with Brian and Davida, and also Kim Mueller and her group at Wisconsin. Is that not only can we use it as a sensitive measure, but we can get people to participate because, hopefully, it reduces the common barriers to participation in research studies. So that's really kind of a focus of where we're going. And then, hopefully, with that information, we can better support those who are at greatest risk living with this disease.
Jerry Hoepner: Right and it seems like there's kind of a secondary effect to once you have those answers. There's a lot more SLP’s than there are, you know, other mechanisms for measuring those bio measures. So, if you know that contact, maybe we can contribute to that earlier detection as well, so that's fantastic.
Alyssa Lanzi: Yeah, which is why we need more SLPs going in this space, and I love aphasia work. I'm an aphasia clinician at heart. But I hope we see after today and through many of my other colleagues that the world overlap so much. But we really need a lot of researchers in this space, because speech language pathologists have a lot that they can contribute, and could very soon be at the forefront of the of the diagnosis as well. So, any students on the call or clinicians wanting to go back. My labs and others are really recruiting, and we need more individuals who are interested in researching in this space.
Jerry Hoepner: Yeah, that's great to share. And hopefully there are some students and professionals out there that are thinking about that so definitely need that. Well, I’m going to change gears just a little bit. You've talked a little bit about depression and other mental health issues a little bit, isolation that occurs not only with aphasia, but with mci and dementia. I think we're all starting to get a better idea of our roles as speech, language, pathologists, in terms of counseling individuals with aphasia, MCI, dementia, traumatic brain injuries, etc. In re-reading your 2021 paper about counseling, plus I was really struck by how you and your co-authors mapped out this continuum of counseling needs kind of makes me want to do the same for everything so in activities from the first symptoms and diagnosis to the end of life, and I’ll refer our listeners to figure one because it's a really eloquent framework for, and timeline for those changes. Will you share a little bit about the development and kind of the purpose of that timeline figure.
Alyssa Lanzi: Yeah, thank you for the kind words that was probably one of the hardest things I've ever done was writing that paper, but we knew it needed to be done for many different reasons, but really to paint the picture that SLPs have a key role from the start all the way to the finish with these folks, and that's really what that figure is trying to highlight is that we can provide both primary and supportive roles to our colleagues from prevention and education all the way through end of life. And fortunately, that figure has really resonated with a lot of people which has been really helpful and I've actually gotten a lot of feedback from clinicians who've been able to use it to advocate for their role in this working with this population and doing support groups and things like that. So that's really great, because that's the whole point of it. But what's unique about this paper is that I work on a very interdisciplinary team of neuropsychologists and geriatric psychiatrists. And it was really interesting to come at it with all 3 of our mindsets for kind of developing this, because everybody has a very different education in terms of these important psychosocial constructs. So a really big shout out to my colleagues, Matt Cohen and Jim Allison, who really also helped me push my mindset of thinking about counseling as much more than just a conversation, and really thinking about counseling, plus as we call it, in terms of everything else right, and that a conversation is only the start of it, and that education and management and advising and referrals, that's all, that's all the big piece of it. So, I think that's why we were able to really round out this figure is because we were coming at it from 3 different disciplines as well, and then being able to go back to okay Well, what's within the scope of practice, of speech, language, pathology. The other thing about this figure is you'll see that the x-axis, the way that we looked at over time was by residential status, not by necessarily MMSE score or MoCA score right, and that framework was very much from my background in life participation approach in thinking about okay, let's think about them on a continuum of like residential needs versus what is their cognitive status on like an impairment type measure. I encourage people to think that way when we think about working with older adults in particular with neurodegenerative conditions, and that not thinking about them as a numerical value in a stage on one type of those measures because I think it opens up our roles, and also shows how hopefully within that figure that you can see that the roles overlap. Right, there's some roles that we start from our first conversation that we're going to continue all the way through the end of life. The other really important thing to consider with the figure, is in our field we have a really strong understanding of like language milestones in pediatrics, right? But what we don't have a really good strong foundation is, is understanding what is typical aging right, and our role in supporting healthy aging as well. Just as we support language development in pediatrics. So that's a big piece of this figure and a big piece of the counseling article is that we have a major role like we do in language development in healthy aging development as well, and that we can do a lot to support healthy aging and prevention just like we do in language development of kids, and also like we do like with the FAST acronym for stroke or with concussion protocols and management, we just haven't, yet kind of adapted that approach to aging, and that's what hopefully this figure gets us to start to think and talk about as well.
Jerry Hoepner: I think it definitely does. And I really like that analogy or metaphor comparison between the developmental milestones, because I was thinking that as I was looking at the figure, this is really similar. It kind of reminds me of, like the norms we looked at when we were in child phono or child language development laid out in the same kind of framework. So, I think that's something that is really comprehendible by the average SLP, and I think that's helpful, and I and I love how you describe x-axis in terms of those descriptions rather than numbers, just so crucial to see the person from that lens rather than as simply those numbers. So.
Alyssa Lanzi: Yeah, in addition to my LPAA colleagues, my early intervention birth to 3 colleagues, or who were the closest with in a lot of ways, I definitely the treatment approaches the in-home approaches. They're in the next group, I would say. That is pretty close to LPAA as well in some ways is early intervention. Birth of 3.
Jerry Hoepner: Agreed. Yeah, that's it. Another really great point. The other thing I really liked about the terms and you mentioned this: I think part of this comes out of the interprofessional kind of nature of development. But when you look at them, sure some of them are, you know, you think. Oh, yeah, that's counseling still, but many of them you don't necessarily wait to. Oh, yeah, that's in my counseling tool belt, and I think it's important for people to recognize those things are a part of that counseling process, and that can make it a little bit more accessible. I mean, we know that from an education standpoint that people are intimidated by counseling, and they feel unprepared and inadequate to carry out those steps. So, I mean just being able to see that on paper and say, I can do these things, I know these things, I think, are a really valuable part of that framework as well. So.
Alyssa Lanzi: And to make sure that when we are describing counseling to our students, we’re describing that as well, right, because its such a daunting thing for our students and if we help them in the beginning set up education, it really breaks down some of the common barriers to providing counseling of its daunting and scary. But a support group is one really small element of counseling that's within our scope of practice and our scope of practice does define it really well. I just think that how we describe it in articles is way too specific, and we need to think about it much more broadly and through, like the journal that you're responsible for with teaching and language. And you know we're starting to develop these models which is really helpful as well. But I agree, I think we just need to step outside of our really kind of specific way of thinking about counseling, because once again, then, by having a more broad continuum viewpoint. It really shines through our role. And why we are such key players of the team.
Jerry Hoepner: Yeah, agreed. I mean, we are always going to be the ones who are put in that moment, that counseling moment we have to be prepared and stepped into it so obviously. That's my bias. But I think we always are. Well, this has been a fantastic conversation, and I could go all afternoon, but want to keep this reasonable for our listeners too. So, I want to end on kind of a broad question, just in terms of what's your advice for SLPs and other disciplines, for that matter, in terms of working with individuals, with mild cognitive impairment and dementia, specific to the use of the external strategies and supports, but kind of weaving, counseling into those interactions?
Alyssa Lanzi: Make sure we're really listening to our patients and our families and take that extra second to pause and really make sure they feel valued and heard because especially for these individuals, they're scared. They may not yet see consequences in their everyday life. So, we need to really have a lot of buy in, and good rapport with them from the beginning, because they can make key changes in their life that may actually delay the onset of dementia. But they need to have buy in from you, and they we need to really promote behavior change and to do that they need to feel, listened to and heard. So, take the extra second and make sure you're doing that. Then I think, make sure that we are providing evidence-based approaches around these strategies that we are teaching and the 3-step approach by Solberg and Mateer and the pie framework. All of these, you know, meta-cognitive strategy frameworks. It starts with education, and we need to make sure that our clients have a really big education of what even is the strategy? What are all the components of the different strategy? Why is it they are even using the strategy right? Don't, jump into training the strategy yet, really start with the education and use the teach back approach, and make sure that they can help you in that way and then make sure you also don't view your approach as linear, things are going to change right, and you're going to have to go back a step and go to education. But you know I think functional is key and important, but it doesn't mean that we take away the evidence based, either right. And it's really thinking about how to integrate both of those things, and being honest with yourself and your client if things aren’t working, and you need to readjust as well. But if your patient feels valued and heard, then that's the first step, and we need to make sure that we're continuing that step all the way through to the end of the sessions.
Jerry Hoepner: Absolutely agree. Well, again, it's been a fantastic conversation. So really, thank you so much on behalf of Aphasia Access for your time and your insights and hope to see you again soon.
Alyssa Lanzi: Yes, thank you. Please feel free to reach out. And if you ever see myself or my Doc students, Anna or Faith, or my colleague, Mike Cohen, at a conference. Please say hi to us as well. We love talking about our work and brainstorming with others, especially in the LPAA world.
Jerry Hoepner: Sounds terrific. Thank you, Alyssa.
Alyssa Lanzi: Thank you.
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 info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.
Articles & Resources:
- Cohen, M. L., Harnish, S. M., Lanzi, A. M., Brello, J., Victorson, D., Kisala, P. A., ... & Tulsky, D. S. (2021). Adapting a Patient–Reported Outcome Bookmarking Task to be Accessible to Adults With Cognitive and Language Disorders. Journal of Speech, Language, and Hearing Research, 64(11), 4403-4412.
- Lanzi, A., Burshnic, V., & Bourgeois, M. S. (2017). Person-centered memory and communication strategies for adults with dementia. Topics in Language Disorders, 37(4), 361-374.
- Lanzi, A., Wallace, S. E., & Bourgeois, M. S. (2018, July). External memory aid preferences of individuals with mild memory impairments. In Seminars in Speech and Language (Vol. 39, No. 03, pp. 211-222). Thieme Medical Publishers.
- Lanzi, A. M., Saylor, A. K., Fromm, D., Liu, H., MacWhinney, B., & Cohen, M. L. (2023). DementiaBank: Theoretical Rationale, Protocol, and Illustrative Analyses. American Journal of Speech-Language Pathology, 32(2), 426-438.
- Lanzi, A. M., Ellison, J. M., & Cohen, M. L. (2021). The “counseling+” roles of the speech-language pathologist serving older adults with mild cognitive impairment and dementia from Alzheimer's disease. Perspectives of the ASHA special interest groups, 6(5), 987-1002.
Links:
Delaware Center for Cognitive Aging Research- Free Memory Screenings
Counseling+ Open Access Manuscript
100 episodes
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Welcome to the Aphasia Access Conversations Podcast. I'm Jerry Hoepner. I'm a professor at the University of Wisconsin – Eau Claire and co-facilitator of the Chippewa Valley Aphasia Camp, Blugold Brain Injury Group, Mayo Brain Injury Group, and Thursday Night Poets.
I'm also a member of the Aphasia Access Podcast Working Group. Aphasia Access strives to provide members with information, inspiration, and ideas that support their aphasia care through a variety of educational materials and resources.
I'm today's host for an episode that will feature Dr. Alyssa Lanzi. In this episode, we'll be discussing Dr. Lanzi’s research on mild cognitive impairment and the role of the LPAA approach in serving individuals with mild cognitive impairment and dementia.
Biosketch:
Alyssa M. Lanzi, Ph.D., CCC-SLP, is a speech-language pathologist and Research Assistant Professor in the Department of Communication Sciences and Disorders at the University of Delaware. She is an executive committee member of the Delaware Center for Cognitive Aging Research at the University of Delaware. Dr. Lanzi is the PI of a K23 award from the National Institute on Aging to investigate the effects of an intervention designed to improve the independence of older adults with mild cognitive impairment from probable Alzheimer's disease. She is also MPI of awards that develop, test and disseminate a large-scale online database to study the language and cognitive skills of older adults to help develop cost-effective biomarkers to identify adults at risk for dementia from Alzheimer's disease. Dr. Lanzi's research broadly focuses on investigating person-centered assessment and treatment approaches for individuals with mild cognitive impairment and dementia and prioritizes the implementation and dissemination of evidence-based practice to practicing health professionals.
Take aways:
- The LPAA fits interventions for mild cognitive impairment too.
- We need to focus on training the next generation to understand the applications of LPAA to other disorders and contexts.
- You don’t always need a standardized test, you can use goal attainment scales to measure anything.
- We need to be prepared to counsel individuals with mild cognitive impairment, as we are often the discipline having those conversations.
- When we intervene with individuals with mild cognitive impairment early, we can involve them as collaborators.
- There is a continuum of counseling needs that changes over time. See Alyssa’s counseling plus paper in SIG 2 Perspectives.
Interview Transcript:
Jerry Hoepner: Hi Alyssa. Good to see you.
Alyssa Lanzi: Hi, good to see you. I'm happy to have a conversation with you today.
Jerry Hoepner: Likewise, I'm looking forward to this conversation. It's kind of tradition that at the beginning of podcast we talk a little bit about your journey in your path to the life participation approach. So, I’m hoping that you can share a little bit about why an LPAA approach is so crucial to your research and clinical interactions.
Alyssa Lanzi: Yeah, Absolutely. Well, thanks for having me, and I’m excited to kind of give a glimpse into how we can start to think about the LPAA approach outside of aphasia, because I think I’m a little bit unique in that way. And I am clinically trained as a speech language pathologist, and I was fortunate that most of my master's training was in a really strong university-based life participation approach model for aphasia. So, I had a large amount of experience working with Dr. Sarah Wallace and Katerina Staltari, and really thinking about group-based approaches for aphasia care. And I really fell in love with the functional nature of that model and with my master's thesis really tried to think about, well, how can we do this with individuals at risk for dementia with thinking about group-based approaches and functional care. And then I went on to get my PhD at the University of South Florida with Michelle Bourgeois. With a really strong research focus on functional approaches for mild cognitive impairment and dementia but also had the opportunity to work clinically the entire time during my PhD at voices of hope for aphasia under Jackie Hinckley, really learning about the life participation approach for aphasia. So, I feel super fortunate in that I have a lot of clinical work and exposure with the life participation approach that really has driven my research. Although I don't clinically practice with the life participation approach anymore, it really is a key foundation and a key kind of framework to how I have conducted all of my research and run the lab at the University of Delaware, which I'm currently a research assistant professor at right now.
Jerry Hoepner: Excellent. Yeah. And thanks for sharing that, I really believe there is not a lot of transferability and generalizability of the LPAA in the approach being someone who has one world or one foot in the traumatic brain injury world, and another foot in the aphasia world. There's definitely some strong carryover across those contexts, and I think members of aphasia access are really interested in thinking about how that extends into those contexts. So, I really appreciate that. And like I said before, you have quite the pedigree in terms of experiences with very life participation approach minded academics, and having some of those clinical experiences, is really just so crucial for those, you know, when you step into the research world that you're doing something that really applies. So, I know you already talked about Sarah Wallace and Dr. Satari and Dr. Bourgeois and Jackie Hinckley. But are there other people along that journey that have kind of shaped the way that you think about LPAA applications to aphasia but beyond obviously?
Alyssa Lanzi: yeah, I think you know, really the names that you mentioned were kind of the key mentors in the process. However, individuals like Roberta Elman, and really her approach to kind of book and learning and reintegration was structured. But flexible activities are really kind of key to my thinking, and also, as you know, an early career researcher as well. Folks like yourself and Tom and Katie really show how we can also train students in this approach as well, which is kind of being key to figuring out how I really run this lab that's based in life participation. That's not only my line of research, but also supporting the next generation. I feel fortunate in that I have mentors that really have integrated a life participation approach in many different settings from big R1 universities to smaller, R2, and R3 universities to clinical practice settings to nonprofits. And I think I've taken pieces of all of those to really support my research and teaching pedagogy, and really life participation in that way, and without aphasia access, I wouldn't have had access to those leaders and mentors in the field like yourself, and it really has given me an opportunity to have conversations with these folks, and every single conversation has really impacted and influenced my work thus far.
Jerry Hoepner: I think that tends to be a really common reflection on aphasia access that everyone is so accessible. So, the name really says it, and willing to have those conversations. And certainly, that supports us in all of those avenues, research, clinic, well and academic in terms of teaching as well so completely agree with that.
Alyssa Lanzi: I think that's what's a beautiful thing about aphasia access and the life participation approach is that it's not just research, either. Right? It's research, it's clinical, it's teaching, it's mentoring, it's service. And I think we will probably talk about in a little bit. But in all of my work that's really what I try to think about, I don't just try to think about, you know, research, I try to think about well, how can I study this so it can actually be implemented in clinical practice? And then how can I also teach the next generation using this approach in that way? And I think that framework, although we often think of life participation as like a clinical approach. In some ways it's really this entire framework to all those kind of core components that are necessary in terms of teaching, research, clinical care and service.
Jerry Hoepner: I really love the way that you describe that, because I don't know that that's been done really clearly before. But there is a thread running through all of those pieces, and it kind of speaks to your experience with Jackie Hinckley in terms of thinking about that implementation piece, and how we make sure what we're doing matters, and is the right stuff in the first place. And obviously teaching is near and dear to my heart, and being able to frame that in a way that students understand, but also feel like it's not something that's high in the sky that you know only a few people do, but that's accessible and usable by everyone, and even for my students. I mean, I know that a lot of my students will end up in a school setting, and I know that these foundational principles of LPAA still have relevance to them. So, I say, you know, regardless of where you're going. This content matters, and it should shape the way that you think conduct LPAA work.
Alyssa Lanzi: Yeah, you don’t have to be at a center to conduct LPAA work, you don’t have to be with people with aphasia to conduct LPAA work, and that's the cool part of it. And having these conversations is an opportunity to kind of brainstorm with one another of, well how do we take you know, from the traditional mold, how do we kind of break that and really think of it as threads that can be kind of interwoven into all these elements that are core components of our discipline in a lot of ways.
Jerry Hoepner: Agreed. Maybe that's a new task for aphasia access worker to kind of map all of those pieces, because I do think not. Maybe individuals have those pieces, but it hasn't been all put together. So, I appreciate that overview.
Alyssa Lanzi: And yeah, hopefully.
Jerry Hoepner: well. I've been having fun re-reading and refreshing myself on your work on. I used a lot of it within my teaching so. But it's always fun to see when you read something again that you pick up something that you just didn't even like process before or you don't remember you process it, maybe. But clearly, I mean, there's this thread going through all of it about person-centered strength-based care right at the heart of all of that. It really one of the things that stood out to me the last couple of days as I've been meeting is that emphasis on fostering choice and collaboration along the way in every single step with the with the individual, with mild cognitive impairment or dementia, with their family members. And I think that's really crucial. I mean whether you're kind of choosing an external memory aid, or script, or whatever is best right. Can you talk about how you facilitate those choices? Maybe a little bit about the kinds of tools that you use on one end, but also a little bit about how you just foster a mindset of that collaborative decision making, because, you know, sometimes people can just want to defer to you and say you tell me so. I'm interested in your thoughts on both of those pieces.
Alyssa Lanzi: Yeah, Absolutely. Well, thanks for the flattering words, and I’m happy. You picked out the core elements there, because I think those are really kind of the key words of a lot of the work that I try to do, and starting really with person or family centered, in that way, and it's tricky. I think a lot of people say that their work is person centered, and we can always argue. What do you mean by that? And how do you ensure that, same with functional right? But something I try to teach people, and my students are just because it's related to something practical doesn't necessarily mean it's a functional approach, either, you know, so really kind of parsing out by what we mean by that. But in particular, with working with folks with mild cognitive impairment and dementia, the goal is to really support their independence for as long as possible, and then to support their quality of life right? And a lot of times when thinking about people with chronic aphasia, it's very similar in that way, right? And that, you know, kind of gotten to a point. Not that improvements can no longer been made, but the shift is really about like, well how can you live the best life as possible? Right? How can we get you participating in as many things as possible, and that’s the same mindset when we're working with people with mild cognitive impairment in particular. So, when I’m trying to design the treatment approaches that I'm testing with my clinical trials. Really, the whole framework is, how can we make something structured and standardized but flexible to that individual’s needs. So, I think it starts from a treatment level, figuring out what are the active ingredients? What are the things that can't be changed, what are the core elements that can't be changed. And then, once we figure that out, then the meat of the sandwich, you know the meat of the treatment can be customizable to that individual right. And a lot of this work really comes from McKay Solberg, and views of cognitive rehab as well. But I think, when we think about person centered, we need to think about what are the core elements of this evidence-based approach? What are the active ingredients? And then what are the things that can change in between right? And when we're talking about external memory aids, it's not enough just to give somebody a calendar right. We're not seeing that individuals actually continue to use this calendar later on. And I would argue that's because of 2 reasons, one because we didn't systematically train them, and the use of it and 2 is because we didn't include them in the process from the start to the finish. And you are asking about what kind of tools and what things can be helpful. And in terms of thinking about goal development tools, a lot of times we can lean on our colleagues and occupational therapy and use a lot of the models that they have for goal development. So, they have the COPM which I'm probably going to butcher the name, but it's the Canadian Occupational Performance Measure, I believe it is, and that can be a really great tool to have a structured approach to goal setting. Same with goal attainment scaling, and incorporating some motivational interviewing techniques on top of it. But the key is that you have some type of structure, some type of evidence-based approach, on top of the conversation that you're having right, just asking somebody their interests is important, but we need to think about what's the best thing for our buck, since we have such limited time with them. So those 2 tools, in terms of goal setting have been really helpful for me, paired with using patient reported outcome measures and kind of figuring out how to use that as an initial conversation, and then paired with some further probing of tell me more about these items. Tell me more about the issues that you're facing. And then what I think is tricky, and where I relate most to my life participation colleagues are, what are the outcome tools, or what are the treatment planning tools that we can use to design these participation approaches. And it's hard because most of the outcome tools that we have are developed for looking at impairment-based improvements, right? So very decontextualized type tasks and that's really tricky. If the treatments that we're doing are all meant to be functional and person centered and improved participation. But we're not looking at necessarily improvements in worthless learning, or serial sevens or things like that. So, I couldn't figure out any tools. So, part of my dissertation work was designing a measure that was really aimed to help drive treatment planning. And then look at if there's gains an actual participation, so that tools called the functional external memory aid tool, and my lab in the last year or so have tried to do a lot of work, and coming up with free resources to train students, clinicians, and researchers, and how to use this tool to drive treatment planning because it's a little bit of a different way than we think of how to use assessment tools. Traditionally we think of assessment tools to tell us is that that person has an impairment or not and this is not designed in that way. It's really designed to tell you how to design your treatment, and a functional meaningful in person-centered way. I don't have great answers of what the tools are, but I think collaborating with clinicians and collaborating with evidence-based researchers really helps us to try to fill that gap in some ways.
Jerry Hoepner: Yeah, and I think you got at part of it when you talked about goal attainment scales that you could make that a measure of any goal that the person identifies themselves. You don't necessarily have to try to fit a tool around that you can just measure what they hope to change right, or what they hope to sustain in terms of function. So, I think that's really good and really helpful. Just want to kind of circle back to a couple of things you talked about active ingredients, and how to really recognize what those active ingredients are, what the cores are, and what is content that you can do without, so to speak, made me think of some of the recent work in RTSS from the standpoint of really mapping that out. But I think that principle of my own is really important. Just to be able to say what is at the core? What do I always need to do? And what is kind of supportive of that, and can be individualized? So that's really helpful.
Alyssa Lanzi: That shouldn't be on the clinician either right? If you’re a clinician listening to this like that shouldn't be on you. This is on the researchers to consider from the beginning, and this should be really clearly outlined in this plan. And it is somewhat hard to figure out what some of these analyses like what are the active ingredients? But that's really, if you go to a talk, if you’re a clinician on this call like that's what you should be asking, when you go to these talks like, what are the active ingredients? What do you think is really evident of what's making the change? It's not on you to decide. It's really on researchers to be thinking about this from the beginning, and not for you to try to figure out by any means.
Jerry Hoepner: Yeah, I think that's a really some really sound advice, because finding out what those active ingredients are that's really crucial, and I think there's times, and I won't say who, but I reached out to a researcher once to do some work related to their work, and I said, “So do you have some place where you have more specific information about what exactly you did?” And they said “it's all in the paper” and I was kinda like no, it's not all in the paper, and I think we're getting better at that, providing that information, at least to the best of our knowledge, what those active ingredients are. And you know this is on the researcher to provide that, and then to allow that clinician to be able to work within that framework. So, I'm really glad that you said that. I also wanted to highlight the fact that you talked about your measure, and I think the acronym is FEAT right?
Alyssa Lanzi: FEMAT, yep, close.
Jerry Hoepner: Sorry. Missed it. I missed one letter, but we'll make sure that that is in the list of resources at the end as well, so that people know how they can access that information, and you mentioned that you're trying to make as much freely available as possible. So I think that's really helpful for our listeners to know where to find that information.
Alyssa Lanzi: Yeah, the tool can be downloaded completely for free. And there's educational and training resources for free on there as well as we just publish an open access manuscript, describing with case examples of how to use it as well, because if we as researchers want clinicians to use our work. Constantly, we're hearing the biggest barriers pay walls and everything else so really trying to make this as accessible as possible, so that individuals can actually use it in their practice.
Jerry Hoepner: Well, that's really excellent. I really appreciate it, so I’ll double check with you at the end, and we'll make sure we have all of that information there for the for the listeners to follow up on that. So, getting into the connection and the differences between someone with aphasia and someone with a mild cognitive impairment. There's a lot of overlap and most communication supports. And as I was reading your work, I was like overlap, overlap, overlap. But there's also some ground that isn't overlapping individuals with aphasia, particularly when you get to the cognitive kinds of constructs, and so forth. So, in terms of supporting someone with MCI or dementia. What are the key distinctions that you have in your mind about how to approach that. So, distinguishing them from maybe what you would use for a language assessment, or language support excuse me, for someone with aphasia
Alyssa Lanzi: I think the good thing is, there's many more similarities than differences. Right? We have this strength-based approach, this idea of participation, reintegration, isolation, depression. These are all major psychosocial factors that we know are associated with both populations and also acute. You know older adults are highest at risk. Right? We're seeing similar populations in some ways as well, so that strength-based participation-based reintegration, type approaches are all very similar. You know the key distinction or the key differences, I should say, is unlike people with a stroke, there wasn't an event that caused the impairments right, and that instead, we need measures that are really sensitive to early declines right? So, it's not like these individuals had a stroke or a brain injury, and immediately referred to speech, language, pathology. That's a very different pipeline to referral in that way. So, speech, language, pathologists need to do a much better job of advocating for our role early on where I don't think we have to do as much of that advocacy with people with aphasia now. Yes, all the aphasia folks don’t come at me either because I know there's plenty of advocacy work that we need to do as well, but it it's a little bit different right, and that once aphasia is diagnosed, it's pretty clear that SLPs are the one to go to for the most part. For individuals with mild, cognitive impairment it's a bit different. So, we need to do a lot of advocacy work, and many of our tools, unfortunately, are not sensitive enough to these early declines. What's exciting is that language is actually showing as a pretty promising tool, a pretty sensitive metric. So, hopefully in the next, you know, 5 to 10 years we're starting to actually definitely be involved because we're noticing language changes or sensitive to these early declines, but so one is the early process, and the referral process is quite different. The other key difference in my mind is the preparation for the future and that individuals of mild cognitive impairment are at a very high risk for developing dementia due to Alzheimer's disease and in my work I am talking about mostly these clinical syndrome due to Alzheimer's disease is usually the bulk of my work. But for individuals with mild cognitive impairment. We really want to set them up with these tools, so that we can develop really strong habits and routines now and really rely on the strength of procedural memory, so that if they decline, they have these really good systems in place, and that's a very different mindset than people with aphasia. So, the mindset in that way is very different in our role in preparing for the future. So, I think the referrals is probably the big pipeline. How they get to you. The coping and the depression is all there. But viewed a bit differently. It's not, Oh, my God! My life has drastically changed instead it's, Oh, my God! What's gonna happen, you know, in 2 3 5 years. So, it's all those same constructs are there, but the rationale and the underpinnings are a bit different.
Jerry Hoepner: I want to just go back to a couple of the points that you said again. When I’m thinking about that that early intervention or early work with someone with MCI, I’m always telling my students part of what you said that idea that we want to establish those routines and habits. But the other thing I always think about going back to our previous discussion is that's the opportunity for them to make as many decisions about their future as they possibly can, and do that planning for the future. I find that to be a really effective way from a counseling standpoint to get them involved in kind of planning their future, and also building that acceptance right like this is coming. What can I do now to kind of take ownership and to take control of that versus if I wait, then it's going to be someone else's decision.
Alyssa Lanzi: Exactly. Exactly. We describe it. A lot of you want to be in the driver's seat and not the passenger seat.
Jerry Hoepner: Yeah, great metaphor. And I just wanted to mention one other thing when you were talking about that the fact that language is a really sensitive measure. You believe for individuals with MCI and predictors of for their dementia. You know some great work with the dementia bank in terms of talking about collecting samples and interpreting those samples. So, I know I’m kind of putting you on the spot for this. But any thoughts about that might lead us in the future in terms of knowledge.
Alyssa Lanzi: Yes, stay tuned. We more than likely have a pretty big grant coming our way, which is going to be exciting. But the current biomarker tools for detection, are costly and invasive. We're having MRI and imaging techniques which are costing, You know, so much money. Blood is becoming, you know, blood based biomarkers are at least a bit more cost effective. However, there's still quite still, quite invasive, and there's only a certain person who wants to come into a lab, you know, and do those types of things. So what we're hoping is that we can use language, and that people can provide us with language samples in the comfort of their own home, right and really reflective of these functional tools and paired with these other. You know data, this, this other data that we're collected, we can make this really kind of informed decision or inform diagnosis. So, hopefully, you know, we can get to the point where that is the case that people can kind of just answer some questions from the comfort of their own home and their smart home and their computer. And you know, on the back end we can analyze their language, and then, provide them with some information about what we're thinking in terms of diagnosis and things like that. The most exciting thing to me in my mind about language is that hopefully, we can get a sample of individuals to participate who are actually representative of those who have the disease and that with many of these imaging techniques, and with many of the blood-based biomarkers and these invasive techniques, there's only a certain type of person you know who wants to come to campus and do these things, and most of our large databases are really white, high SES folks who are just, not those who are at greatest risk for the disease. So, what I'm really hoping for with as really the area of language grows, thanks to a lot of the work that we're doing, and Carnegie Mellon are doing with Brian and Davida, and also Kim Mueller and her group at Wisconsin. Is that not only can we use it as a sensitive measure, but we can get people to participate because, hopefully, it reduces the common barriers to participation in research studies. So that's really kind of a focus of where we're going. And then, hopefully, with that information, we can better support those who are at greatest risk living with this disease.
Jerry Hoepner: Right and it seems like there's kind of a secondary effect to once you have those answers. There's a lot more SLP’s than there are, you know, other mechanisms for measuring those bio measures. So, if you know that contact, maybe we can contribute to that earlier detection as well, so that's fantastic.
Alyssa Lanzi: Yeah, which is why we need more SLPs going in this space, and I love aphasia work. I'm an aphasia clinician at heart. But I hope we see after today and through many of my other colleagues that the world overlap so much. But we really need a lot of researchers in this space, because speech language pathologists have a lot that they can contribute, and could very soon be at the forefront of the of the diagnosis as well. So, any students on the call or clinicians wanting to go back. My labs and others are really recruiting, and we need more individuals who are interested in researching in this space.
Jerry Hoepner: Yeah, that's great to share. And hopefully there are some students and professionals out there that are thinking about that so definitely need that. Well, I’m going to change gears just a little bit. You've talked a little bit about depression and other mental health issues a little bit, isolation that occurs not only with aphasia, but with mci and dementia. I think we're all starting to get a better idea of our roles as speech, language, pathologists, in terms of counseling individuals with aphasia, MCI, dementia, traumatic brain injuries, etc. In re-reading your 2021 paper about counseling, plus I was really struck by how you and your co-authors mapped out this continuum of counseling needs kind of makes me want to do the same for everything so in activities from the first symptoms and diagnosis to the end of life, and I’ll refer our listeners to figure one because it's a really eloquent framework for, and timeline for those changes. Will you share a little bit about the development and kind of the purpose of that timeline figure.
Alyssa Lanzi: Yeah, thank you for the kind words that was probably one of the hardest things I've ever done was writing that paper, but we knew it needed to be done for many different reasons, but really to paint the picture that SLPs have a key role from the start all the way to the finish with these folks, and that's really what that figure is trying to highlight is that we can provide both primary and supportive roles to our colleagues from prevention and education all the way through end of life. And fortunately, that figure has really resonated with a lot of people which has been really helpful and I've actually gotten a lot of feedback from clinicians who've been able to use it to advocate for their role in this working with this population and doing support groups and things like that. So that's really great, because that's the whole point of it. But what's unique about this paper is that I work on a very interdisciplinary team of neuropsychologists and geriatric psychiatrists. And it was really interesting to come at it with all 3 of our mindsets for kind of developing this, because everybody has a very different education in terms of these important psychosocial constructs. So a really big shout out to my colleagues, Matt Cohen and Jim Allison, who really also helped me push my mindset of thinking about counseling as much more than just a conversation, and really thinking about counseling, plus as we call it, in terms of everything else right, and that a conversation is only the start of it, and that education and management and advising and referrals, that's all, that's all the big piece of it. So, I think that's why we were able to really round out this figure is because we were coming at it from 3 different disciplines as well, and then being able to go back to okay Well, what's within the scope of practice, of speech, language, pathology. The other thing about this figure is you'll see that the x-axis, the way that we looked at over time was by residential status, not by necessarily MMSE score or MoCA score right, and that framework was very much from my background in life participation approach in thinking about okay, let's think about them on a continuum of like residential needs versus what is their cognitive status on like an impairment type measure. I encourage people to think that way when we think about working with older adults in particular with neurodegenerative conditions, and that not thinking about them as a numerical value in a stage on one type of those measures because I think it opens up our roles, and also shows how hopefully within that figure that you can see that the roles overlap. Right, there's some roles that we start from our first conversation that we're going to continue all the way through the end of life. The other really important thing to consider with the figure, is in our field we have a really strong understanding of like language milestones in pediatrics, right? But what we don't have a really good strong foundation is, is understanding what is typical aging right, and our role in supporting healthy aging as well. Just as we support language development in pediatrics. So that's a big piece of this figure and a big piece of the counseling article is that we have a major role like we do in language development in healthy aging development as well, and that we can do a lot to support healthy aging and prevention just like we do in language development of kids, and also like we do like with the FAST acronym for stroke or with concussion protocols and management, we just haven't, yet kind of adapted that approach to aging, and that's what hopefully this figure gets us to start to think and talk about as well.
Jerry Hoepner: I think it definitely does. And I really like that analogy or metaphor comparison between the developmental milestones, because I was thinking that as I was looking at the figure, this is really similar. It kind of reminds me of, like the norms we looked at when we were in child phono or child language development laid out in the same kind of framework. So, I think that's something that is really comprehendible by the average SLP, and I think that's helpful, and I and I love how you describe x-axis in terms of those descriptions rather than numbers, just so crucial to see the person from that lens rather than as simply those numbers. So.
Alyssa Lanzi: Yeah, in addition to my LPAA colleagues, my early intervention birth to 3 colleagues, or who were the closest with in a lot of ways, I definitely the treatment approaches the in-home approaches. They're in the next group, I would say. That is pretty close to LPAA as well in some ways is early intervention. Birth of 3.
Jerry Hoepner: Agreed. Yeah, that's it. Another really great point. The other thing I really liked about the terms and you mentioned this: I think part of this comes out of the interprofessional kind of nature of development. But when you look at them, sure some of them are, you know, you think. Oh, yeah, that's counseling still, but many of them you don't necessarily wait to. Oh, yeah, that's in my counseling tool belt, and I think it's important for people to recognize those things are a part of that counseling process, and that can make it a little bit more accessible. I mean, we know that from an education standpoint that people are intimidated by counseling, and they feel unprepared and inadequate to carry out those steps. So, I mean just being able to see that on paper and say, I can do these things, I know these things, I think, are a really valuable part of that framework as well. So.
Alyssa Lanzi: And to make sure that when we are describing counseling to our students, we’re describing that as well, right, because its such a daunting thing for our students and if we help them in the beginning set up education, it really breaks down some of the common barriers to providing counseling of its daunting and scary. But a support group is one really small element of counseling that's within our scope of practice and our scope of practice does define it really well. I just think that how we describe it in articles is way too specific, and we need to think about it much more broadly and through, like the journal that you're responsible for with teaching and language. And you know we're starting to develop these models which is really helpful as well. But I agree, I think we just need to step outside of our really kind of specific way of thinking about counseling, because once again, then, by having a more broad continuum viewpoint. It really shines through our role. And why we are such key players of the team.
Jerry Hoepner: Yeah, agreed. I mean, we are always going to be the ones who are put in that moment, that counseling moment we have to be prepared and stepped into it so obviously. That's my bias. But I think we always are. Well, this has been a fantastic conversation, and I could go all afternoon, but want to keep this reasonable for our listeners too. So, I want to end on kind of a broad question, just in terms of what's your advice for SLPs and other disciplines, for that matter, in terms of working with individuals, with mild cognitive impairment and dementia, specific to the use of the external strategies and supports, but kind of weaving, counseling into those interactions?
Alyssa Lanzi: Make sure we're really listening to our patients and our families and take that extra second to pause and really make sure they feel valued and heard because especially for these individuals, they're scared. They may not yet see consequences in their everyday life. So, we need to really have a lot of buy in, and good rapport with them from the beginning, because they can make key changes in their life that may actually delay the onset of dementia. But they need to have buy in from you, and they we need to really promote behavior change and to do that they need to feel, listened to and heard. So, take the extra second and make sure you're doing that. Then I think, make sure that we are providing evidence-based approaches around these strategies that we are teaching and the 3-step approach by Solberg and Mateer and the pie framework. All of these, you know, meta-cognitive strategy frameworks. It starts with education, and we need to make sure that our clients have a really big education of what even is the strategy? What are all the components of the different strategy? Why is it they are even using the strategy right? Don't, jump into training the strategy yet, really start with the education and use the teach back approach, and make sure that they can help you in that way and then make sure you also don't view your approach as linear, things are going to change right, and you're going to have to go back a step and go to education. But you know I think functional is key and important, but it doesn't mean that we take away the evidence based, either right. And it's really thinking about how to integrate both of those things, and being honest with yourself and your client if things aren’t working, and you need to readjust as well. But if your patient feels valued and heard, then that's the first step, and we need to make sure that we're continuing that step all the way through to the end of the sessions.
Jerry Hoepner: Absolutely agree. Well, again, it's been a fantastic conversation. So really, thank you so much on behalf of Aphasia Access for your time and your insights and hope to see you again soon.
Alyssa Lanzi: Yes, thank you. Please feel free to reach out. And if you ever see myself or my Doc students, Anna or Faith, or my colleague, Mike Cohen, at a conference. Please say hi to us as well. We love talking about our work and brainstorming with others, especially in the LPAA world.
Jerry Hoepner: Sounds terrific. Thank you, Alyssa.
Alyssa Lanzi: Thank you.
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 info@aphasiaaccess.org. Thanks again for your ongoing support of Aphasia Access.
Articles & Resources:
- Cohen, M. L., Harnish, S. M., Lanzi, A. M., Brello, J., Victorson, D., Kisala, P. A., ... & Tulsky, D. S. (2021). Adapting a Patient–Reported Outcome Bookmarking Task to be Accessible to Adults With Cognitive and Language Disorders. Journal of Speech, Language, and Hearing Research, 64(11), 4403-4412.
- Lanzi, A., Burshnic, V., & Bourgeois, M. S. (2017). Person-centered memory and communication strategies for adults with dementia. Topics in Language Disorders, 37(4), 361-374.
- Lanzi, A., Wallace, S. E., & Bourgeois, M. S. (2018, July). External memory aid preferences of individuals with mild memory impairments. In Seminars in Speech and Language (Vol. 39, No. 03, pp. 211-222). Thieme Medical Publishers.
- Lanzi, A. M., Saylor, A. K., Fromm, D., Liu, H., MacWhinney, B., & Cohen, M. L. (2023). DementiaBank: Theoretical Rationale, Protocol, and Illustrative Analyses. American Journal of Speech-Language Pathology, 32(2), 426-438.
- Lanzi, A. M., Ellison, J. M., & Cohen, M. L. (2021). The “counseling+” roles of the speech-language pathologist serving older adults with mild cognitive impairment and dementia from Alzheimer's disease. Perspectives of the ASHA special interest groups, 6(5), 987-1002.
Links:
Delaware Center for Cognitive Aging Research- Free Memory Screenings
Counseling+ Open Access Manuscript
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