Episode #67: Considering Depression In People Who Have Aphasia and Their Care Partners: In Conversation with Rebecca Hunting Pompon

During this episode, Dr. Janet Patterson, Chief of the Audiology & Speech-Language Pathology Service at the VA Northern California Health Care System talks with Dr. Rebecca Hunting Pompon, assistant professor in the Department of Communication Sciences and Disorders at the University of Delaware in Newark, Delaware, about depression, the effect it can have on people with aphasia and their care partners, and how speech-language pathologists can recognize and address depression during aphasia rehabilitation.

 

Guest Bio

Rebecca Hunting Pompon, Ph.D., is an Assistant Professor in Communication Sciences and Disorders at the University of Delaware, and director of the UD Aphasia & Rehabilitation Outcomes Lab. Prior to completing a Ph.D. in Speech and Hearing Sciences at the University of Washington, she earned an M.A. in Counseling at Seattle University and worked clinically in adult mental health. Dr. Hunting Pompon’s research focuses on examining psychological and cognitive factors in people with aphasia, and how these and other factors may impact aphasia treatment response. She also trains and advises clinicians on interpersonal communication and counseling skills adaptable for a variety of clinical contexts. 

 

In today’s episode you will learn:

1. about the similarities and differences among sadness, grief, and depression, and sobering statistics of their prevalence in persons with aphasia and their care partners,
2. how the behavioral activation model can assist clinicians during planning an aphasia rehabilitation program for an individual with aphasia and his or her care partners,
3. 5 tips to use in starting conversations about depression with persons with aphasia and their care partners, and fostering their engagement in the therapeutic enterprise, 
4. the value of community support groups for persons with aphasia.

 

Janet: Rebecca, I would like to focus our conversation today on your work investigating depression, and other psychosocial factors that patients with aphasia and their care partners may experience. Let me begin our conversation by asking how we define and think about depression, because I think everyone has an idea about what depression is, and how it may manifest itself in an individual’s interaction with family and friends, and certainly in the past year, as we've moved through this worldwide pandemic, focus on depression has increased. You have studied depression in persons with aphasia, and how depression affects their care, so first, let me ask, how do you define depression? And then how often does it appear in persons with aphasia? 

 

Rebecca: Depression is a concept that so many of us are familiar with. In one way or another, so many people have experienced depression themselves, or alongside a family member, so I think it's such a common concept. Likewise, many people know that the definition of depression that we use most often is about a mood disorder. Usually, the two fundamental ways we think about depression, clinically, is that it is either low mood, or it can be a loss of interest, or pleasure. So of course, we all experience this from time to time, but depression is really a much more marked, persistent low mood or loss of pleasure, or interest, and it can span across days and daily life and make a tremendous impact. Those two features go with some other features like a change in appetite, fatigue and energy loss. Some people experience a slowing of thought or slowing of physical movement, or experience trouble with concentrating, or trouble with focus. It also could include feeling worthless or excessive amounts of guilt, and it also can be accompanied by recurring thoughts of death, which can be with a plan or more abstractly without a specific plan. Those are the constellation of symptoms that can go with that formal depression diagnosis.

 

Of course, aphasia, as we all know, comes with some significant changes in functioning after stroke or other types of brain injury. Loss and grief are commonly experienced by many people with aphasia and their families as well. Unfortunately, those losses that are experienced with aphasia can lead to depression in a significant number of people. Let me give you a little bit of context on that. In the general adult population, maybe like 9% of the population or so may experience a mild to major depressive disorder at some point; the number goes up for people that have experienced stroke to about 30% or so. In studies of stroke survivors with aphasia, the number is significantly higher. We recently completed a study with about 120 people with aphasia, and about half of them reported symptoms that were associated with a depressive disorder, mild to major. And I think it's really important to note that this is based on 120 people that were motivated to participate, to volunteer for research. We really believe that actually, depression may be experienced by a quite a greater number of people with aphasia, because we're not capturing those people that are at home, they're not engaged in speech therapy, and we really wonder if rates of depression in aphasia might be quite a bit higher. 

 

Janet: That is a stunning set of statistics when you think about all the people who don't report, can't report, or don't come into the clinic, and their feelings; their ideas are pretty much lost in the world. I appreciate the comment that the people participating in your study are motivated, and they experienced depression. It's out there, and we need to pay attention to it. As a clinician, how might one recognize the presence of depression in a client?

 

Rebecca: Depression can be really hard to observe at times. A lot of people with depression can mask their depression and seem to be doing fine. I've had this experience working with a number of people who seem to be really thriving after their stroke, but then getting into the details and discussing their life and their reactions, we come to find that they're struggling far more than we perceive that they are. Other times we may get some sense of an experience of depression, maybe we observe a lack of initiative or motivation during treatment or get some sense that our client is just not enjoying his or her activities the way that they used to, or the way that we hear from their loved ones, how they used to participate in their life. What do we do if we're wondering, “Hmm, depression? Is this a factor for this particular person?” It can be helpful to ask about the specific symptoms of depression, sometimes more than asking, “Are you depressed?” I that's true for a couple of reasons. First, some of our clients may associate the label of depression as having a lot of stigma. Stigma around mental health has been with us for a very long time, unfortunately, and it's really a barrier to making sure that we can provide care and address issues like depression in many people, not just people with aphasia.  Of course, the other thing about the label of depression is that some people just feel very disconnected from that label. They might hear depression and say, “Well, that's not me, I don't really feel sad.” But again, as we talked a little bit ago about those features and symptoms of depression, it's not necessarily just a sadness, it's about mood and so many other things that go with depression. It can be helpful to talk about those specific symptoms instead of just the label itself. 

 

I wanted to throw this in there too, sometimes I've been asked this by a number of clinicians, “How do I tell the difference between depression and grief?” The short answer is that grief doesn't come with feelings of worthlessness or guilt or shame. It's not the turned-inward type of experience, whereas depression can be turned inward. Ultimately speech-language pathologists do not need to feel like they need to be mind-reader's; they do not need to feel like, “I am not a mental health expert, so therefore I cannot ask.” We can ask about depression and depressive symptoms. We can ask ourselves, “Does this person's mood appear to influence their everyday life or their recovery?” That might be the thing that will push us forward to ask a little bit more about what their experiences are like. Helpfully, there are a couple of screening tools that are really useful for clinicians, regardless of type of clinician. One is the Patient Health Questionnaire. It's a depression scale, vaguely named. It's also called the PHQ. The PHQ is a nine, or there's also an eight, item version. They're very simple scales. They've been developed for clinical populations, so the phrasing is quite short and straightforward. They use a Likert scale and they're very well validated screening tools that are also free. I believe we're going to have the pdf of the PHQ-9, which is nine items scale, in the Show Notes. 

 

Janet: Right

 

Rebecca:  Great. Another scale that's been developed specifically for aphasia, though, it's really addressing caregivers or other proxy reporters, is the Stroke Aphasic Depression Questionnaire, or the SADQ, and it's available also for free. There are a couple of different versions. Again, that's been created for people with aphasia in mind, specifically their caregivers. So that's really helpful tools. In Short, these are great tools to use, and just give us a little more information as we're having a conversation about depression. They then give us some ideas about what next steps to take, including referrals that we might be thinking about. 

 

Janet: Rebecca, those are excellent ideas. And indeed, those two resources you mentioned will be in our show notes. You speak about depression in patients with aphasia, but I believe that depression also affects the care partners of a person with aphasia. What do you see is the role of a clinician in recognizing depression in a care partner? 

 

Rebecca: This is really, unfortunately, true. Depression is experienced by caregivers, including stroke caregivers and aphasia caregivers, and depression symptoms align, and maybe not surprisingly, with the degree of caregiving effort that's required by the family members. In other words, caregiver depression, can be higher when caregivers are working with a loved one who has more severe functional impairment. Here are even more sobering statistics. There was a study conducted, it's a few years back, about caregiving adults, ages 66 and up, so it's a lot of our clients, family members, and spouses, etc. Those caregivers who reported mental or emotional strain had a 63% increase in mortality risk compared to caregivers who did not report strain. That's a really shocking and sobering to think about. The takeaway here is caregiving burden, as it's often called, that s just a very, very real problem with us. Given that caregivers are such an important part of our client's recovery, their health and well-being are just incredibly important. So how can we support them? They're not our primary concern, because our client is, so what do we do? What do we do for caregivers to support them? Of course, we can ask how they're doing, certainly. Then we can also provide some support resources, support groups, counseling services, and the fact that we are doing much more online now has opened up opportunities for both caregivers and clients to participate in lots of different ways, to connect virtually, and so that's great. 

 

Another really great tool that can be used is called the Caregiver Questionnaire. It's a questionnaire that has 17 items and was developed by the American Medical Association. It just goes through a listing of common caregiver experiences that can really be illuminating for caregivers. I've given this questionnaire to caregivers in different contexts, including in caregiver support groups. What I hear from caregivers, once they go through those 17 questions, is often they're surprised. They're often not thinking a lot about how they're doing themselves, because they're very focused on supporting their loved one. It can be really illuminating for them to answer the questions and realize, “Wow, I am really fatigued I'm really tired. And maybe I need some extra support”. What I sometimes recommend to clinicians is having this questionnaire on hand and providing it to caregivers while you're working with the client, and then maybe checking in at the end of the session to say, “You know, how was that for you?” And it's an opportunity, again, to provide some support resources that they can explore on their own. I think it's a really handy way to just shine a light for caregivers, saying, ”Hey you're doing a lot, we recognize that and we know you need support, too.”

 

Janet:  I think that's very important. It reminds me of the message you see on the airlines, you know, put your own oxygen mask on first, so that you're better able to help the other people. If you're a caregiver, you must take care of yourself, and we must help the caregivers take care of themselves so that they can better care for our patients with aphasia. 

 

Rebecca: Oh, my gosh, so true.

 

Janet:  Depression typically does not appear by itself. You've alluded to that and mentioned that earlier. In your experience and investigation. How does depression interact with coping skills, resilience or motivation? Are there other interactions that we may see in persons with aphasia? 

 

Rebecca: Oh, my gosh, depression, part of the reason that I studied depression, among other things, is that it's a really interesting experience. It's part of a grouping of some biophysiological processes that are so intimately linked together. I hope you don't mind if I geek out a little bit here.

 

Janet: Geek away

 

Rebecca: Geek away - All right. We know that when we perceive something stressful, like, let's say we're near a potentially dangerous animal or something like that, it's classic example. It triggers systems in our body that helps us respond, right, we've heard of the fight or flight response, where our adrenaline system jacks up so that we can move quickly, right or get away from the danger, or if we have to, fight it off. Then once the danger is gone, our body goes back to its normal functioning state, the adrenal system stops pumping out adrenaline and our heart rate slows to a normal rate, all that good stuff, right? So of course, our body does pretty much the same thing when we're not in danger, per se, but we are experiencing or we perceive stress; that could be public speaking for some, or a big job interview. Then thinking about people with aphasia, maybe it's really stressful to make that phone call to somebody, even someone they know well. They don't feel confident about their communication ability, and that can be incredibly stressful. Even though it's not danger, it still can kick our body's stress systems into gear, activating that adrenal response, etc. Here's the thing, though, if our body is entering that stress state pretty regularly, it gets regularly flooded with these stress biochemicals that can impact multiple systems. We can handle those biochemicals, we were built to handle those biochemicals. But we weren't really built to handle them all the time, or often over a long period of time. If those biochemicals are circulating in our blood, they can really have a damaging effect on our body, and they have a damaging effect on parts of the brain, that are really important for us as speech language pathologists thinking about treatment, right? So those biochemicals, and cortisol is among them, can diminish functioning of regions of the brain that we need for things like attention and memory, things that are really important for learning, right? What do we do in treatment - we learn. At the same time, these biochemicals can increase parts of the brain, like the amygdala, that are really central for emotion. In other words, if we're experiencing persisting stress over a period of time, we may have impairments in memory and focus to a degree, and we may also experience depression, anxiety, and other mental health challenges. I got really, really interested in stress and depression a few years ago, and as you mentioned at the beginning, we created a scale for chronic stress for people with aphasia. Using that scale we found, just as we would in the general population, that there are very close associations between reports of perceived chronic stress and reports of depressive symptoms. The bottom line is that chronic stress is significantly connected to depression, and it's significantly experienced by our clients with aphasia.

 

You asked about coping skills and resilience and that's another area that I've been really, really interested in. We know that there's an association between depression and resilience, or how people cope with stress. As resilience goes up, depression tends to go down. But we also have seen that this relationship is more complex than I anticipated. We are currently validating a scale of resilience for aphasia. We really want to understand better how resilience and depression and other mental health challenges fit together, and then how we address them.

 

Janet:  I think that's very important work because we're, when we engage on the therapeutic endeavor, when we begin treatment, it is a partnership. And both the clinician and the patient with aphasia, but also the caregiver, we have to be in there engaged in that process and moving forward to achieve whatever communication goals we have in mind for the patient. If a patient is not engaged because of low coping skills or low resilience, because of depression, that can certainly affect our treatment,

 

Rebecca: Agreed. It's things that we don't really understand. I mean, we understand to a degree, for sure, but I think with some time and some additional research, we'll be able to understand much more clearly how depression and resilience impact treatment, and also how we can capitalize on resilience and build it. I'm looking forward to uncovering some of these associations and understanding them better. 

 

Janet: Oh, I look forward to reading your work on that. I want to ask you now the next logical and perhaps obvious question, which is how may depression experienced by a person with aphasia adversely affect the treatment, as well as the quality of life in that person, and with the person's caregivers?

 

Rebecca: We've talked about people who have experienced depression in one way or another, and depression is really mean. It is really a mean, mean process, that can sap our interests in things that we like to do and screw up our sleep and our appetite. It impacts others around us, of course, but yes, absolutely, depression can dampen motivation. That's one of its features, it can dampen motivation to get out of the house, or for our clients with aphasia, it can diminish how much initiative they want to take with activities, especially social interactions that really help with language function and recovery. It may diminish their initiative to seek support or to reach out and start speech therapy. Then, even when a person has decided to actively engage in therapy, depression may also limit how much he or she can take away from that therapy experience to a degree, given that it's harder to attend to things, it's harder to concentrate, it's harder to remember, when you are also struggling with depression. Then it's also that all of those things that contribute to how well we can engage in treatment and adhere to treatment recommendations. We need a level of motivation and initiative and energy to tackle assignments that our therapists might have given us to work on in between our sessions. There are just multiple ways that depression could influence treatment, either through those diminished cognitive processes, or the impact on engagement, and adherence. There are just a lot of questions that we have, still about these impacts on treatment, and how they influence the outcomes of treatment. 

 

Janet: One of the things we've observed in some work we've done recently is that people talk a lot about motivation, or resilience or coping, but people haven't yet figured out what that means or how to identify it. I'm very glad that you're doing some of this work to help us understand how we can best approach the treatment effort and really assure maximum engagement of the patients to achieve the goals that we want to achieve.

 

Rebecca: It is really interesting. There is some really interesting work going on in some other allied health disciplines that is, I think, helping us to pave the way in thinking about how to ask these questions about engagement. It's for our clients as well. I am excited to move forward on that. 

 

Janet: You're right about that! Speech-language pathologists are by nature, compassionate individuals, and would be responsive to a person with aphasia or a care partner who seems to show depression. What guidance can you offer for clinicians as they plan and implement a rehab program for a person with aphasia, who shows signs of depression? 

 

Rebecca: Oh, first of all, Janet, I agree. Speech-language pathologists are such a big-hearted bunch and that is just a real plus for our clients. There are a number of things that we can do to consider depression and treatment planning. In addition to being aware of the impact of depression, and those engagement and motivation issues, the cognitive issues, and the screening that we already talked about, we of course, can make appropriate referrals. This can be easier for some clinicians and more difficult for others. Some clinicians who work in an environment like an acute care or rehab environment, may have access to a psychologist or social worker, rehab counselor, someone like that who can help step in and provide support or other resources. For other clinicians who work in outpatient settings, the best referral might be to the client's primary care physician. Unfortunately, as we know, there are just not enough mental health professionals with aphasia expertise; we need so many more of those. That's a whole other discussion, isn't it? The primary care physician and support groups can be some of the first people that we refer to, if we are working in an outpatient setting. In addition to those things we can also provide some information and training to family members, and our colleagues and our clinical teams about supportive communication techniques. Interestingly, people with aphasia have talked about how interacting with people that know a little bit about aphasia and know how to support communication really can not only facilitate the conversation, but also help improve their mood, and give them a little boost. They also talk about how important it is to both acknowledge their experiences and perspectives and struggles, and to have at the same time, a positive outlook, to use humor, to celebrate goals. All of those things have been things that people with aphasia have talked about as elements that really help in working with clinicians and others for that matter. 

 

Another thing that has come up, and you and I have talked about this a little bit, is also about the tremendous impact of mental health challenges for people with aphasia. We talked a bit ago about the very high incidence of depression in aphasia. And so, people with aphasia have said in previous work that they really wanted more information about low mood and changes that can come with stroke, around mood and mental health, and wanted an open forum to talk about that, and continue those conversations with caregivers as well. That open discussion about depression, about other kinds of mental health struggles, can really help normalize it, help destigmatize it so that we can address it more readily. 

 

Janet: That makes sense. And you know, one of the key points I heard you just say is that, as a clinician, it's important for us to be aware of the community resources that are around us, whether they're specific individuals like neuropsychologists or mental health workers, or support groups or community groups. Bearing that in mind that we're not alone, as clinicians working with patients with aphasia, we have a whole group of people who can contribute to this rehabilitation effort. 

 

Rebecca: Absolutely. And I was going to add, in addition to the myriad of people that can be around and supporting people with aphasia who are struggling with mood issues and other mental health challenges, support groups are really amazing. I would say if I gave a couple of tips for clinicians, but I had three things that I was thinking of, that we can really encourage for our clients, and one is to really seek out those support groups and other opportunities for connection with each other. I mean, I think we all know that groups can be so amazingly effective at not only providing some opportunities for social connection, but also that emotional support, and kind of perspective-checking opportunities for our clients can realize, “Oh, I'm not alone, others are also struggling in a similar way.” I'm the biggest cheerleader for support groups, as I think we all are, 

 

This is one of those broken record things. Exercise is another incredibly, useful tool. We all know, of course, that exercise is good for our health and our cardiovascular functioning, all that good stuff. But it also so helpful in improving mood and cognitive functioning. Getting outside and moving around is just so important. There is just scads of research across many health disciplines that talks about this and reminds us about the importance of exercise. 

 

Here's the other thing that I think is really cool to suggest to clients. And that is, in simple terms, do more of what you like to do. There's been some work around behavioral treatment approaches for stroke survivors, including those with aphasia, using a framework called behavioral activation. Thomas and colleagues in the UK have done a little bit of work around this. The basic notion is that by doing more of what you like to do, provided it's healthy and not detrimental, of course, can really help improve mood. When we do things we enjoy, it releases endorphins, and it gives us some sense of satisfaction and well-being. That's exercise for some people, not for everybody. Other people may find doing creative things, or learning something new, or engaging in something that feels like it's contributing in some way. Those can all be things that can over time, help improve mood and outlook. This can be a little challenging for folks with aphasia; the things that they think about or reach for, or things they enjoy, are maybe no longer available to them because of their language and communication impairment, or other impairments that have come with stroke. So again, the support groups are so helpful. They can be places where people have an opportunity to learn about new activities or connect with opportunities that may fill that hole of things that they like to do, new things that they hadn't discovered before. I always have more plugs for support groups.

 

Janet: The things that you mentioned, they're simple, they're easy, but they're so powerful. Sometimes we forget that the simple things can often have the biggest change or make the biggest change, or the biggest difference for us. It's a good thing that you have been reminding us of those things today. 

 

Rebecca: Simple things, and sometimes combinations like a couple of simple things together can make a huge impact.

 

Janet: As important as the treatment techniques are to address specific linguistic and communication goals, an individual's mental health state and their feelings of engagement with the clinician and the process are just as important, as we've mentioned several times today, What advice or suggestions or lessons learned, can you describe for our listeners that will help them become better clinicians, and address the whole person in aphasia therapy, including our role as clinicians in counseling, and I don't mean the professional counseling that is reserved for degreed mental health professionals. I mean the communication counseling and quality of life communication counseling. 

 

Rebecca: Yeah, even though speech-language pathologists are not mental health experts, there really are a number of very simple counseling skills that can help connect with our client s and more fully understand how they're doing, where are their struggles are, how are they doing in terms of mental health. When we understand them more fully, what's important to them, what they're struggling with, then it's easier to build treatment plans that fit them as individuals. So, if I'm putting on my counseling hat, I have a couple of things that I would prioritize, I think I have five, five things that I would prioritize as a speech-language pathologist using some counseling skills. 

 

Janet: I will count them.

 

Rebecca: The first one is really to consider their stage post event or post stroke. If the stroke or the event is new, we may be working more with the family; they may be in shock, they may be overwhelmed and struggling to take in the information that we and our clinical team are providing to them. Those conversations differ tremendously from the conversations we might have with clients and families that are in the chronic stage, because they have a better sense of aphasia and of what it means for them, what their everyday needs are, etc. I think considering first of all, the stage post stroke or post event is really important. 

 

The second thing I would say is to find empathy and unconditional positive regard. It is good to know that depression is complicated, and it can come with emotions, a lot of different emotions and experiences from anger and frustration and shame, and so sometimes our conversations around depression can be uncomfortable. I would say, approach these conversations in an open and honest way about the client's challenges and maintain that unconditional positive regard even when we're feeling that discomfort ourselves. If they are angry and frustrated, we also may feel angry and frustrated or defensive or something else that doesn't feel very good as clinicians, or for anybody for that matter. Just remembering that unconditional positive regard, that we really all want the same thing. We want improvement. We want improvements in life and to face things like depression and find some answers that will really help push clients forward. 

 

The third thing that I would say is giving clients and family members our full attention and listen really

actively and carefully. Sometimes this can be just an extra 30 seconds, an extra 60 seconds of listening using some reflective techniques that can really provide some critical information about our client, their needs and priorities that we can use in treatment planning. At the same time, this act of listening very deeply, and reflectively can help build our connection with their client and that's going to help promote engagement, adherence, and trust, which is just so essential for the therapeutic alliance. 

 

The fourth thing I would say is communicate multi-modally. I would say this not just for clients, but for family members as well. I myself have been the caregiver in situations where a clinician, never an SLP I will say, has come in and talked to a loved one and it was wasted words and time because nobody could take in that information. It was feeling overwhelmed and that that information might have come in as just some noise; maybe we remember one or two words from it and couldn't take the rest of it away, just given everything else that we were processing in that moment. I always say, never just say something, say it and write it or diagram it. This is just again, so important with clients and families who are stressed, who are depressed or anxious in some way. It is just so hard to remember when we're feeling overwhelmed. We can really support our clients and families by communicating in a multi-modal way. Even almost as important as summarizing what we've said and providing information again, I had a caregiver once say never tell us more than three things at once, because the fourth thing is going to be lost. I took that to heart; I understand that that makes perfect sense. And of course, providing a lot of opportunities for questions is helpful. That number four had a lot of pieces to it. 

 

Here's number five, and this is really obvious, developing mutual goals with our client and revisiting them. Sometimes when our client is struggling with depression, we might find their treatment plan seemed like a great idea, seemed like a great fit for our client, and just falls flat. If our client is really struggling to concentrate or engage in an activity because of depression, it just makes sense to stop and revisit those goals and make sure they really line up with the client's interests and priorities, but also how they're doing and how they're able to engage given everything else that's going on - mental health-wise and otherwise. 

 

Janet: Those are five excellent tips, Rebecca, excellent. And again, they're not difficult things to do, but they're so important, especially if you do all five of them together. I think our listeners are going to be quite pleased to learn about these five ideas that you have. 

 

Depression experienced by persons with aphasia is not new, we've talked about this earlier, certainly as long as there has been aphasia, there have been people with aphasia and depression. But although it's not new, it has not been well recognized or really well studied, as you mentioned earlier on. During the past year, as a result of changes due to the pandemic, such as the stay-at-home orders, limitations on in-person activities, and the increase in virtual care, I believe depression and associated mental health and self-care concerns have increased and have come to the forefront of our thinking. Have you found this to be the case?

 

Rebecca: It's interesting. We are in the midst of a study right now, that's looking at how our research participants are doing during the pandemic as compared to pre-COVID, pre-pandemic. We're not done, we're midway through, but so far, we're seeing some really interesting challenges that people are reporting with everyday functioning during the pandemic, which it doesn't surprise us, of course, we're all struggling with functioning, I think, during the pandemic. We're not necessarily seeing greater levels of stress for the group we've done so far. Some people are reporting more stress, and some people are reporting less, which is fascinating. I'm going to give you some examples. Some people have said that they're not really that bothered by not being able to leave the house. Then other people are talking about how they're not able to do the things that they've always done, and that's been really difficult and stressful for them. So clearly, there's a lot of variety of experiences that we've heard so far. I'm really looking forward to finishing up that study and just looking at all the data together. Maybe the next time we talk we'll have some better news or a clearer picture about what people's experiences are like. 

 

Janet: I'll look forward to hearing about that. 

 

Rebeca: Separately, a couple of months ago, we chatted with our friends with aphasia and just asked, “Hey, what's been helping you during these lock downs, during this time of isolation?” And here's what they said: they said things like games and puzzles and dominoes were helping; listening to music every day. One person found brain teaser books were helpful and fun right now; several people were cheering for support groups that they were attending online; playing with pets; connecting with family over FaceTime. One person talked about chair yoga. Those are the things that our friends with aphasia are doing that they say are really helping. 

 

I think we're all thinking about self-care right now. It's just so important, of course exercise and getting outside and learning something new. I think we've all heard of countless people that have learned to bake bread this year, me among them. Taking care of things like a new plant, and then just finding ways to connect with each other, though a little bit different than we were doing it before. 

 

Janet: That is so true. I think we've all been finding those new ways and new things and new ways of connecting with people. Rebecca, you've given us much to think about today. Depression may not always be easy to recognize in an individual, and certainly its management is multifaceted. As we draw our conversation to a close, what are some words of wisdom that you have to offer to our listeners who interact with persons with aphasia every day? And who may be wondering, “How do I start a conversation about depression with my clients, or my clients’ caregivers?”

 

Rebecca: I would say first, be yourself, be genuine. When we are able to genuinely connect with our clients and their families, it really does strengthen the trust, and build our relationship for some good clinical work together. Then ask about depressive symptoms, as we've talked about before, and communicating openly about depression; not something that we should, you know, hide away, but actually discuss and regularly check in on, as well as providing some resources and support for what to do when someone's feeling depressed or struggling with mental health. Then listening fully and acknowledging the experiences of our client, the good stuff, the difficult stuff, all of it. They're really the experts on life with aphasia and they are such a critical part of our clinical decision making. Then keeping our eye on the literature as there is more clinical research on depression, and other psychological challenges in aphasia right now than I think ever before, which is incredibly exciting. So just keep an eye on that. And then I think this is a really important one - take care of yourself. Clinicians working with people with communication disorders are also experiencing depression. It can be a lot over time, and no one can be a great clinician if their own health, their own well-being is compromised, so do what you can to take care of yourself. Again, simple things, several simple things we can do to just make sure we're our most healthy and going to be the best supporters for our clients and their families. 

 

Janet: Those are some very, very good suggestions. If I'm right, you have a paper coming out in Perspectives soon, about counseling skills, is that correct? 

 

Rebecca: Yeah, there should be a paper coming out soon about counseling skills, and also about stages using those skills, depending on the stages post event or post stroke, hopefully, that'll be coming out really soon. 

 

Janet: This is Perspectives for the Special Interest Groups within the American Speech-Language-Hearing Association. I have to say, I remember, oh gosh, many, many years ago, I wrote a paper for Perspectives on depression and aphasia, and at that time, there was not very much written about it; people were thinking a little bit more about quality of life. As I reread that paper before talking to you today, I found myself thinking how much more information is available now, how much more in the forefront is the topic of depression, and mental health and psychosocial skills, and how pleased I am that there are so many people who are really recognizing the importance of having these conversations with our clients and caregivers.

 

Rebecca:  I'm so glad that there's more available now, but I have to say thank you, Janet, for blazing that trail those years ago, you have been an inspiration clearly and I'm glad that we are picking up the pace on these important topics.

 

Janet:  And you indeed are. This is Janet Patterson and I'm speaking from the VA in Northern California, and along with Aphasia Access, I would like to thank my guest, Rebecca Hunting Pompon, for sharing her knowledge, wisdom, experience and guidance about this most important topic, the effect depression can have on persons with aphasia, and their care partners. 

 

You can find references and links and the Show Notes from today's podcast interview with Rebecca, at Aphasia Access under the Resources tab on the homepage.

 

On behalf of Aphasia Access, we 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, please go to www.aphasiaaccess.org. If you have an idea for a future podcast topic, please email us at info@aphasiaaccess.org. Thank you again for your ongoing support of Aphasia Access.

 

Links and social media

Lab website: UDAROLab.com

Facebook: “UD Aphasia & Rehabilitation Outcomes Lab”

AMA Caregiver Self Assessment Questionnaire (free pdfs; 5 languages): https://www.healthinaging.org/tools-and-tips/caregiver-self-assessment-questionnaire

 

Citations

Modified Perceived Stress Scale: Hunting Pompon, R., Amtmann, D., Bombardier, C., and Kendall, D. (2018). Modification and validation of a measure of chronic stress for people with aphasia. Journal of Speech, Language, and Hearing Research, 61, 2934-2949. doi.org/10.1044/2018_JSLHR-L-18-0173

 

Patient Health Questionnaire depression scale (PHQ) 

PHQ9 Copyright © Pfizer Inc. All rights reserved. Reproduced with permission. PRIME-MD ® is a

trademark of Pfizer Inc. (open access)

 

Stroke Aphasic Depression Questionnaire (SAD-Q) https://www.nottingham.ac.uk/medicine/about/rehabilitationageing/publishedassessments.aspx