Episode #103: Counseling for People with Primary Progressive Aphasia with Kristin Schaffer Mendez

Interviewer info Lyssa Rome is a speech-language pathologist in the San Francisco Bay Area. She is on staff at the Aphasia Center of California, where she facilitates groups for people with aphasia and their care partners. She owns an LPAA-focused private practice and specializes in working with people with aphasia, dysarthria, and other neurogenic conditions. She has worked in acute hospital, skilled nursing, and continuum of care settings. Prior to becoming an SLP, Lyssa was a public radio journalist, editor, and podcast producer. In this episode, Lyssa Rome interviews Kristin Schaffer Mendez about her work on counseling for people with primary progressive aphasia and their families.   Gap Areas This episode focuses on Gap Area #6, insufficient attention to depression and low mood for people with aphasia across the continuum of care.   Guest info   Dr. Kristin Schaffer Mendez is a speech-language pathologist and assistant professor at the University of St. Augustine in Austin, Texas. Prior to entering academia, she worked in several clinical settings, including inpatient rehabilitation, home health, and private practice. Dr. Mendez’s experience as a clinician has inspired her research, which is centered upon examining and addressing psychosocial factors in acquired neurogenic communication disorders through patient-centered and care partner-inclusive treatment paradigms, including counseling, support groups, and the use of telerehabilitation platforms.   Listener Take-aways In today’s episode you will: Learn about some of the psychosocial factors that people with primary progressive aphasia may face. Understand how speech-language pathologists can provide both educational and personal adjustment counseling for people with PPA. Describe a cognitive behavioral approach to personal adjustment counseling for people with PPA. Edited show notes Lyssa Rome Welcome to the Aphasia Access Aphasia Conversations podcast. I'm Lyssa Rome. I'm a speech language pathologist on staff at the Aphasia Center of California, and I see clients with aphasia and other neurogenic communication impairments in my LPAA-focused private practice. 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. Kristin Shaffer Mendez. Dr. Schaffer Mendez is a speech language pathologist and assistant professor at the University of St. Augustine in Austin, Texas. Prior to entering academia, she worked in several clinical settings, including inpatient rehabilitation, home health, and private practice.   Dr. Schaffer Mendez his experience as a clinician has inspired her research, which is focused on examining and addressing psychosocial factors in acquired neurogenic communication disorders through patient-centered and care partner-inclusive treatment paradigms, including counseling support groups, and the use of telerehabilitation platforms. In this episode, we'll be focusing on her research on counseling for people with primary progressive aphasia.   Dr. Kristin Shaffer Mendez, welcome to the Aphasia Access podcast. It's great to have you here.   Kristin Shaffer Mendez  Thank you so much for having me. It's wonderful to be here.   Lyssa Rome  So I wanted to get started by asking you a question that we often start with, which is whether you have any “aha” moments, so experiences that were pivotal for you in your work as a clinician or as a researcher?   Kristin Shaffer Mendez Yeah, you know, I think throughout my career, there have been a series of “aha” moments. If I think through my career, I've had several different stages. So initially working clinically, as a speech language pathologist, as I was partnering with patients with all different types of communication disorders and their families, I quickly realized that we weren't going to address the specific speech language goals if I didn't first acknowledge and check in with these individuals and get a sense of their general wellbeing, and a sense of if they were suffering, if they were grieving, if they were going through or processing something specific. I did have some didactic training as a student and counseling—not a lot—and I noticed when I would try to find evidence-based resources, I wasn't finding a lot of disorder-specific counseling information.   Fast forward a few years later, I was working as a research speech language pathologist at the Aphasia Research and Treatment Lab in Austin, Texas. And I was working primarily with individuals with PPA, and sometimes I would notice, and in the midst of a speech language treatment session, they would say something maybe under their breath, or maybe in frustration, like, “Oh, my dumb brain,” or “ I’m such an idiot.” And I was thinking, oh, goodness, if this is what's coming out of their mouth, I only wonder what what's happening behind the curtain. And if we were to look at the inner workings of their mind, what their self talk would look like, and how critical it might be. Then I was thinking, “Okay, now what what types of tools might I be able to provide for these individuals so that they can minimize that critical voice, and be more positive, be more adaptive.” And so that leads me to to my line of research.   Lyssa Rome And that also leads, I think, straight into the gap areas. So in this podcast, we've been highlighting those gap areas that were identified in the State of Aphasia Report by Nina Simmons Mackie, which was published in 2018. And I think, in this episode, what you've described so far, and what we're going to be talking about, really focuses in on gap area number six, which is insufficient attention to depression and low mood for people with aphasia across the continuum of care.   You described some of the kinds of self-talk that you were hearing people say. I'm wondering if you could tell us a little bit more about the kinds of psychosocial issues that people with primary progressive aphasia typically experience. And I guess I also wonder if this differs at all from what people with post-stroke aphasia experience?   Kristin Shaffer Mendez So individuals with primary progressive aphasia, the psychosocial factors that they're facing can range from feelings of low confidence, to social isolation, withdrawal, reduced participation in life activities to a diagnosis of mood and or anxiety disorder. So similar in many ways to what individuals with stroke-induced aphasia may be facing. But the difference here is that when we look at the prognosis and the trajectory of life for individuals with PPA, in contrast to individuals with stroke-induced aphasia, who can look at a future of improved communication functioning, or maybe an plateau in communication status, for individuals with primary progressive aphasia, their trajectory is that of decline. And so these individuals are at particular risk for facing these psychosocial threats and for these factors to change over time as well.   Lyssa Rome  So given some of these needs that you've just described and the risks that you've described, how can we as speech language pathologists provide counseling in our treatment for people with PPA?   Kristin Shaffer Mendez   Yeah, so there's there lots of different avenues that we can go down in terms of providing counseling, and really what I'll say is, this is going to be person-specific, and we'll tailor our counseling to the needs of an individual, session by session.   There are two main camps in terms of counseling within our field more broadly, in communication sciences and disorders. And this I follow from Dr. David Luterman, of course, one of the long-standing advocates and pioneers for the integration of counseling in our field. He cites two main forms of counseling. One is informational counseling, otherwise known as psychoeducation, or educational counseling. This is where we're providing disease-related information. And then there's personal adjustment counseling. This is going to be more emotion-centered. This is where we are directly addressing those thoughts, feelings, and behaviors underlying the diagnosis. So I really do believe that we can toggle between the two, and that our patients can and may benefit from both forms of counseling.   As a field, research has shown that speech language pathologists tend to feel more comfortable in providing the educational or the informational counseling relative to personal adjustment counseling, and they're also more likely to have been provided with didactic education in that information-centered counseling. But this is this is where my work comes in. And this is where I'm really motivated and invested in in making changes.   I'll talk some more about personal adjustment counseling. So this can range from micro-counseling skills, that are more general, and that are those soft skills that will help to foster a strong therapeutic alliance with our patients. So actively listening, listening without having an agenda of what we're going to say next, or thinking about the time and redirecting back to the speech language treatment task. Having moments of therapeutic silence, where again, we're not jumping in to fill empty space, but pausing a beat, and letting the patient continue to talk, or sit for a moment and process. Paying attention to our body language, the nonverbal way that we're communicating, leaning in, nodding, validating, affirming through the way that we are presenting. And then listening to what our patients are saying, and then thoughtfully summarizing. So letting our patients know that they are seen and heard and validated.   So those are, those are microcounseling approaches, and we can provide that anytime with any of our patients or our care partners. But then there are also specialized counseling approaches, and that's where my research really delves into further that are going to require more training and a specialized set of skills.   But really, in terms of our opportunities to provide counseling that can really be organically woven into our interactions from the very initial assessment throughout treatment, checking in with our patients at the beginning of sessions, at the end of sessions, and just being being aware, being observant, and noticing if there are moments when our patients seem to be undergoing a moment where they want to talk and where we might need to pause. And use that moment as as a teachable counseling opportunity. And not feel as though we need to stringently adhere to our speech language treatment sessions, or that we have to have some formal time in our sessions that’s set aside for counseling.   Lyssa Rome    It almost sounds like you're describing approaching our treatment sessions with a counseling mindset that sort of is woven throughout. And you alluded to more specialized programs that we can also use. I know you've developed a cognitive behavioral therapy program for people with PPA, and I'm curious about that program, and about why you selected CBT. And maybe if you could define it a little bit?    Kristin Shaffer Mendez Absolutely. Yes. So cognitive behavioral therapy, or CBT, is one of the most widely researched and popular forms of psychotherapy. And it trains individuals to examine the connection amongst thoughts, feelings, and behaviors in order to identify, assess, and respond to maladaptive or unhelpful thoughts to optimize mood and behavior more broadly. And also CBT has been modified for individuals with a variety of diagnoses, including those with neurodegenerative disorders, such as Alzheimer's dementia. So when I was considering different psychotherapeutic approaches to adapt, it really seems like CBT could could be a great starting point. There's really limited research in general about adapting counseling approaches for this population.   So within this treatment program, there were both opportunities for dedicated counseling, and that counseling closely followed the traditional form of CBT. However, the sessions were oriented towards communication-centered challenges. And so within that, there's opportunities to check in on an individual's mood, and talk through a home practice exercises from the last week, check in on that, and talk through, “Okay, so what what types of communication difficulties came up this week? And then how we should we prioritize our time together? What do we need to work through?” Then working through specific challenges using aphasia-modified CBT approaches and, and then ending with a feedback component as well. So that's basically the gist of a traditional CBT approach, as a CBT session. So there was that component, but also, these sessions were aphasia-modified in that aphasia-friendly written and visual supports were provided as needed to ensure comprehension of these key CBT concepts that could be new new terminology for any individual who's entering a counseling dynamic. We just wanted to make sure that these individuals were provided with that support.   But so in addition to the more structured counseling, there were also opportunities organically within the speech-language portion of the treatment sessions, where if an individual was demonstrating frustration or emotional distress, or they were saying statements that were maladaptive in nature, then these were teachable counseling moments where CBT techniques were used within the session.   Lyssa Rome So can you tell us a little bit more about the clients goals and also about what you found?   Kristin Shaffer Mendez Yes, absolutely. So, first, I want to contextualize this research and mention that it is considered pilot research. So this is early phase, early stage research, where we are looking at answering the question: Is this novel intervention feasible and is it acceptable to patients? So we're obtaining information to see if patients were satisfied by the treatment, if this was feasible for a speech language pathologist to implement. What we're finding with a small cohort of individuals, so we've published one paper in the American Journal of Speech Language Pathology with our very first pilot participants, that was just a single case experimental design. We have nine additional individuals, three per PPA variant, who have participated in our second phase of pilot research and we have a manuscript in preparation for that stage. But what we're finding today is that this intervention is acceptable. And it's it's feasible. We were also really intentional in selecting and recruiting and enrolling individuals who did endorse that, in light of their PPA, of their communication challenges, that they were facing threats to their emotional well-being and that they were interested in participating in an intervention that included counseling.   So I think that's one important point to make when looking at the individuals who have undergone this intervention. Then with regard to goals, that was really individual for each person. It ranged from participating more in prayer groups to calling family members or friends instead of emailing them or not picking up the phone out of a sense of a fear of what would happen during the conversation. And yes, so these goals were all created collaboratively with with me as the clinician and with the participant, to really determine what was going to be meaningful and valuable in these individuals lives and what to work towards, collectively and in our time together.   Lyssa Rome That makes so much sense and I can imagine how addressing some of the psychosocial challenges, as you have described them, would would allow people to participate in the ways that you were just detailing.   I'm curious about.. you mentioned earlier on, that we don't always get a lot of training as SLPs in specific counseling approaches, and often are more comfortable, I think, with the educational counseling piece of things. So what kind of training would clinicians need—both future clinicians and current clinicians—in order to use this type of approach with our clients?   Kristin Shaffer Mendez Yeah, that's, that's a great question. And that's what we're continuing to examine, as we continue to move through our phases of research and so we've now completed pilot research and in the future we're looking at efficacy research and and later on down the line, I can say more generally, what I envision is that these types of counseling approaches and the evidence base wherein, that we discover, will then be incorporated more universally in graduate school education. But not so that, necessarily, students are going to graduate being able to implement and provide these specialized counseling approaches, but so that they have a sense of the theoretical underpinnings and the basic constructs of these approaches, and even thinking about patient candidacy—who might be appropriate and who might benefit from these approaches. But then in the future, I can see there being continuing education opportunities similar to LSVT, the Lee Silverman approach, where maybe it's a two-day training, for example, and intensive training where individuals are provided with a lot of hands-on experiential learning, so that they are equipped with those tools that they can then implement with patients.   Lyssa Rome  It brings to mind another question that I have, which I think is often on my mind anyway, when I think about counseling approaches, which is: We know that a lot as you've been describing, a lot of anxiety or mood related challenges are directly related to communication-specific disorders, in this case, PPA. So as we think about the needs, the psychosocial needs of people with PPA, given that so many of those needs are directly related to this progressive communication disorder, how do we know what's within our scope, and when we might consider referring to a mental health professional, for example, if the needs are greater than what we are able to meet on our own?   Kristin Schaffer Mendez That's a great question. And I do believe as speech language pathologists we’re uniquely equipped to providing counseling. We are the communication experts. And we possess specialized skills in understanding individuals with communication impairments, and helping them express themselves. And this is something that a lot of licensed mental health professionals may not have the background training and experience in.   So with regards to determining when to potentially refer, so it's completely normal, we would argue, that individuals facing a neurogenic communication disorder, such as PPA will, will likely experience grief and loss and suffering as they're processing their diagnosis and navigating their days. But if we have a sense that they are presenting with a mood and or anxiety disorder that may be undiagnosed, then certainly the first step is to administer a mental health screening or an anxiety disorder screening, there are several available online that are free—the Personal Health Questionnaire, the Generalized Anxiety Disorder Scale, for instance. And then if the results do show that there is the potential presence of mood or anxiety disorder, then having having a conversation and coming from a place of care and concern and letting our patient know that we do have concerns that these individuals may be presenting with challenges that go beyond what we are able and equipped to provide. And then from there, looking into finding mental health professionals within the community, so that we can give that warm handoff and engage in interprofessional collaboration, if need be, if the mental health professionals maybe don't have experience in treating a client with PPA or aphasia, for example.   Lyssa Rome  And that's, I think, a perpetual challenge, right? It's finding those people who can support clients with mental health needs beyond what we're able to help them with—people who have those those kinds of communication skills and experience.   Kristin Schaffer Mendez And if I could just say one other thing as well. When I said a warm handoff, I don't necessarily mean that we stop treating our patient or that we don't continue to provide counseling. It's just we want to make sure that we're staying in our lane and providing counseling as it relates to the communication challenges. But not going beyond and stepping outside, especially if there's some type of mental health disorder that needs to be treated and managed more broadly.   Lyssa Rome That totally makes sense to me. It's working with the mental health counselor and not instead of.   So we know that people with PPA will continue to experience declines in their language functioning as their disease progresses. I'm wondering about how the counseling needs change over time and how we can meet their needs over time, as their disease progresses?   Kristin Shaffer Mendez   Yes, that's that's a great question. And that's really important too, is that we demonstrate flexibility, both in the counseling that we provide and in the speech language interventions we provide that's really yoked to and sensitive to a person's presentation.   So Dr. Ian Kneebone has published work pertaining to the provision of CBT for individuals who have survived a stroke. And I think that the principles that he discusses would be really applicable for individuals with PPA or other communication impairments as well, in that we must demonstrate flexibility, that is yoked to an individual's cognitive and communication presentation. And so if, for example, an individual, we'll say with PPA, is presenting with a more progressed clinical profile, then we would consider using language that's more concrete versus more abstract. We would also consider the provision of additional environmental supports, or multimodal communication, for example. And we would also want to include our care partners, if they are amenable to participating, as that can then help to ensure facilitation and implementation of the strategies outside of the therapy sessions.   Lyssa Rome    That brings me to another question, which is that you had mentioned earlier in a study that hasn't been published yet, you had people with each variant of PPA involved in your research. And I'm curious about sort of, in addition to thinking about disease progression, if there are also aspects of the variants that clinicians should be aware of in terms of their neuropsychological or behavioral features. And how would we want to think about sort of varying strategies based on those features? Or what to expect even based on those features?   Kristin Shaffer Mendez Absolutely, yes, that's a great question. And I think that being aware of the potential presence of these neuropsychiatric and behavioral features is important in general, because this can also influence the speech-language interventions we provide. There has been research that have has shown some general patterns that we might expect to see across the PPA variants. So for example, apathy has been found in some research studies, and then other other features that are more specific to a specific PPA variant. So, for example, with the semantic variant of PPA, we may see loss of empathy, mental rigidity, compulsive behaviors, disinhibition. With the logopenic variant, we may see agitation, anxiety, irritability, and with the nonfluent, agrammatic variant, we might also see irritability, and these individuals also often may present with depression. So you know, those are those are some some general trends that we've seen. But again, we have to look at each person as an individual.   But in terms of the counseling that we provide, yes, I think that if we have an individual that, for example, has the semantic variant of PPA, and they're presenting with mental rigidity, then thinking about what types of counseling may resonate with them, or what types of counseling may need to be provided to family members and care partners will be important to consider. So for example, with with cognitive behavioral therapy, which is really hinged upon cognitive restructuring, and taking thoughts that are unhelpful or maladaptive and monitoring and adjusting them so that they become more helpful and adaptive. If somebody presents with mental rigidity, then this type of intervention may be met with resistance.   That said, for the very small sample size of individuals I've worked with, that hasn't always necessarily been the case that that these individuals were not open to engaging in a counseling approach like this. Really small sample sizes—we really can't make any sweeping statements at this point in time. But I think that the key is that we are aware of these features, and that we are providing counseling and educational support and that we are flexible. And sometimes, an approach may not work in general, sometimes it may not work a specific day, and so this really requires trialing and error and experimentation and openness on the part of both the clinician and the client.   Lyssa Rome That leads me actually directly into a question that I wanted to ask as we wrap up. I think it is so important to meet people where they are on a specific day, and to be really aware of who they are and what they're experiencing as an individual—I think that's pretty core to many of our, all of our practices as speech language pathologists. I wanted to wrap up by taking a step back and asking you a little bit more about why this is so important. You touched on it in the beginning, but how does counseling support a life participation approach for our care for people with PPA?   Kristin Shaffer Mendez Yes, so the orientation with counseling is within the context of a whole person who lives a rich, dynamic life. And these individuals are unique, and they have different values and goals. And they do have a communication impairment, but that's just one part of their life, and doesn't define them as a person. And so within the work that we do, in providing counseling, we are honoring these individuals and and that full landscape of their life. And we're equipping them with skills so that they can cope with the challenges that they are facing with their communication challenges. So that they can continue to live a meaningful life that aligns with their values and their goals for their time on this earth.   Lyssa Rome What I'm moving and beautiful way to wrap this up. Dr. Kristin Shaffer Mendez, thank you so much for talking with us. I really appreciate it. It's been a pleasure.   Kristin Shaffer Mendez Oh, it's been a pleasure as well. Thank you so much for the opportunity.   Lyssa Rome Thanks also to our listeners. For the references and resources mentioned in today's show, please see our show notes. They're available on our website, www,aphasiaaccess.org. There, you can also become a member of our organization, browse our growing library of materials and find out at the Aphasia Access Academy. If you have an idea for a future podcast episode, email us at [email protected]. Thanks again for your ongoing support of Aphasia Access. For Aphasia Access Conversations, I'm Lyssa Rome.       Twitter: @Schaffer_SLP References and Resources Twitter: @Schaffer_SLP   Luterman, D. (2020). On teaching counseling: Getting beyond informational counseling. American Journal of Speech-Language Pathology, 29(2), 903–908. https://doi.org/10.1044/2019_AJSLP-19-00013 Schaffer, K. M., Evans, W. S., Dutcher, C. D., Philburn, C., & Henry, M. L. (2021). Embedding aphasia-modified cognitive behavioral therapy in script training for primary progressive aphasia: A single-case pilot study. American Journal of Speech- Language Pathology, 30(5), 2053–2068. https://doi.org/10.1044/2021_AJSLP-20-00361 Kneebone, I. I. (2016a). A framework to support cognitive behavior therapy for emotional disorder after stroke. Cognitive and Behavioral Practice, 23(1), 99–109. http://doi.org/10.1016/j.cbpra.2015.02.001   Screening tools and citations: PHQ-9: K. Kroenke, R.L. Splitzer, J.B. Williams. “The PHQ-9: validity of a brief depression severity measure.” Journal of General Internal Medicine. 16(9): 606-13. September 2001. Retrieved July 9 2018. https://www.ncbi.nlm.nih.gov/pubmed/11556941.   GAD-7: Spitzer, R. L., Kroenke, K., Williams, J. B. W., & Löwe, B. (2006). A brief measure for assessing generalized anxiety disorder: The GAD-7. Archives of International Medicine, 166(10), 1092–1097. https://doi.org/10.1001/archinte.166.10.1092