Expert Briefing: Communication Strategies for Optimal Success with PD

Dr. James Beck 00:00:07
Hello everyone. This is Dr. James Beck, the Chief Scientific Officer at the Parkinson's Foundation, and I want to welcome you to a new event of expert briefings, our 11th series of expert briefings. I think you've noticed things are a little bit different than they have been in the past. I'm really pleased to let you know that we have video. You will be able to see me. I won't be able to see you, unfortunately, but you'll also be able to see our speaker for the first time that we will be doing this. We also have some other cool things that we can do as well.

Why did we start with the video process to begin with? We listen to the community, as we always do, and look for an opportunity to deliver information in a more meaningful way, engage the community that much better, and allow us to really, as we always try to do, respond to the feedback that's provided for you.

What I also want to do is let you know, for those who are going to be joining us, the slides are going to be available for download. There's a chat window that will pop up, and right now you can see the chat icon is highlighted. As a result, you'll be able to see little things come in. Right here is the chat window. Now my icon's not showing up right there, but there's a little chat icon which will show up here, and I'm sorry, right here. Well, I clear that.

Dr. James Beck 00:01:46
The chat icon is here, and in your window, it shows up orange right now with a note from my colleague to indicate that she has a URL for you that you can click on to download the slides. If you're an allied health professional who's interested in using this expert briefing as a way to gain some CEUs, we have a different protocol for that as well. Again, we have one free CEU through the American Society on Aging, so you have had to register as part of that in order to get that CEU. Within the chat icon will be a link that'll take you to a webpage where you can participate with the quiz immediately after this expert briefing. Don't close that webpage. Keep that link handy so that you can take that quiz while the information is fresh. If you can't do it right now, you've got 30 days, until October 17, to complete the quiz and collect your free CEU.

Just a little bit more orientation about the setup. Again, we've got in the center a little diagram here. What we'll be able to do is under an option called Q&A, where those of you who are viewing this live will be able to ask questions of Dr. Roberts. We'll compile them, and those questions which are most relevant and on topic we'll be able to ask. Even those that may be very relevant, we may not be able to get to, just because we have a limited amount of time today to engage with Dr. Roberts. I just want to let you know about that.

I also want to let you know we've got a couple cool things we can do with our new interface. The first is to be able to ask questions of you. One of the things we know is that we have over 1,700 people who've registered. 758 of you are people with Parkinson's, another 400 are care partners, we have lots of families and friends, and over 250 health professionals involved. I wanted to make a shout-out to a couple viewing parties in Omaha, Nebraska. We've got a Lunch and Learn that's undergoing right now. At the Danbury Senior Living Center in Ohio, we have another viewing party, and also in Parkside Village in Westerville, Ohio, we have another viewing party. Hello to everyone. I can actually wave this time.

Dr. James Beck 00:04:13
We're going to push our first poll, asking who you are. The poll should appear up on your screen, so just click. For the viewing party, just select the best one. We can see people are coming in with the poll. You in the audience won't be able to see this, but I see that a number of one hundred and two hundred people have already responded so far. Put in your votes. We'll just leave that up there for a little bit longer and see where everyone is coming from.

We've got a couple scientists, just literally two scientists. Physicians, clinicians are on board. 62 health care professionals, hello to you guys, and a number of other folks. We can end the poll now. There we go, and let's share the results. You can see that we have a lot of people with PD who have joined us today. A lot of health care professionals too, which is really great. I'm glad that everyone finds these topics so useful.

We'll move on to another poll. We want to find out where you're viewing from. Where are you located right now? We're going to push another poll that should appear in just a moment and give you an opportunity to tell us where you're viewing this from, because typically we find that people from all over the world are watching this. But given the time zones that we're in, not everyone can do this live, and they will be able to watch it later on. A lot of people are here in the United States, and a handful of folks from Canada.

We'll give it another few minutes. One of the really nice things about our new webinar series is that you get to register just once for the entire year. That means you don't have to register all the time. Hopefully, you received an email with a number of reminders when these upcoming expert briefings are. My reminder at the end of our expert briefing was superfluous, but you'll have that there in a calendar, and you can keep track of that.

Dr. James Beck 00:05:52
Let's publish our poll right here. We can see that most of the people who are watching and joining us live today are from the United States, a handful from Canada, and just a couple from Europe. I'm going to be headed off to France this weekend for the Movement Disorder Society meeting and hopefully be able to interact with some people there as well. We'll share the results, and you can see that we've got, again, most people from the United States and Canada, as I said. We've got a lot of people who are here to see this.

Right now, I want to move to our guest, Dr. Angela Roberts. Dr. Roberts is an assistant professor at the Roxelyn and Richard Pepper Department of Communication Sciences and Disorders at Northwestern University. She is a principal investigator of the Language and Communication Aging and Neurodegeneration Research Group, which I think is a mouthful, so we'll rely on her to help us be able to speak that quickly.

Her research focuses on developing novel linguistic biomarkers of dementia progression, including spoken discourse and social interaction changes. She applies these findings to the development and evaluation of interventions for communication impairments that affect individuals with Parkinson's disease, Alzheimer's disease, as well as to help their family care partners. It's my pleasure, and now that Dr. Roberts has popped up on screen, to welcome her to our expert briefings and the new technology that we have at hand.

For those of you in the audience, if you see some glitches along the way, just bear with us. This is new for us as it is for you, and I hope we'll be able to have a very smooth expert briefing. Dr. Roberts, I turn it over to you.

Dr. Angela Roberts 00:07:59
Good afternoon, everyone, and thanks for allowing me to spend some time with you today and share a bit of the research that we do and, hopefully, helpful strategies for people living with Parkinson's disease and their families.

These are the disclosures that we let you guys know about, but more importantly, it's invaluable for us to acknowledge the funding that we receive for the research that we do.

There are a couple learning objectives that we set out for the talk today. The first is to really have a discussion around how communication changes in aging and in Parkinson's disease impact everyday conversations. The aim of this talk is to go beyond speech issues, to go beyond motor-based issues only, and to really think about how myriad changes in Parkinson's disease affect everyday interactions. We'll talk a little bit about how conversations break down and how to recognize some of the signals of those breakdowns, the relationship to those difficulties in the context of maintaining relationships and creating new relationships in Parkinson's disease, and then, really importantly, try to get you to some useful strategies that you can use, hopefully leaving this webinar and going into your everyday lives.

I want to start with the definition of what is conversation, and this becomes a little bit different than just thinking about the classic speech behaviors in Parkinson's disease. A conversation really is an interaction between two or more people, at a minimum. It is the primary means by which we create and maintain social relationships. It is a uniquely human behavior, and it's also governed by a set of rules, a set of rules that we've understood for a long time now. The good thing about having conversation governed by a set of rules is that it means that we can understand how it breaks down and how to help to repair it.

When impaired, conversations affect quality of life. They're significantly associated with increased burden in terms of burden of everyday activities and also caregiver burden. It affects quality of life. It increases caregiver burden. It creates difficulties in completing everyday activities, and it can lead to a very important consideration that we think about in terms of dementia prevention, which is social isolation and loneliness. We now know that social isolation and loneliness are primary predictors of who will go on to develop dementia.

Dr. Angela Roberts 00:10:39
When I first started doing research in Parkinson's disease, and it's been a while now, as a clinician I've worked with Parkinson's disease for over 25 years, and as a researcher for over 10 years. One of the things that I was observing when I was in the clinic is that the problems people were describing were not just limited to their speech and voice issues. Caregivers were complaining of difficulty with the flow of conversation or difficulty maintaining conversation topic, and the people with Parkinson's disease were really frustrated by the fact that they were left out of conversations that were important to them.

This kind of phenomenon of, by the time I get ready to put together what I want to say, the conversation has moved on without me, and it leaves me feeling isolated. One of the phenomena that became apparent to us is that conversation problems, not just speech and voice issues, but conversation problems, are a big deal for people with Parkinson's disease and their family members.

The research that I do in my lab really is about taking a peek into these issues. We record people in their everyday environments in a variety of tasks, from telling stories to having conversations in their homes. We do this using traditional methods like video recorders and audio recorders. We also have developed some novel technologies that allow us to measure what people are saying and how they're saying it in their real-world environments in this minimally invasive way.

The sensor you see at the bottom is one that we've developed that basically is like a Band-Aid that people wear on their throat that allows us to record this information, so that we can really get an idea about how communication and, importantly, how conversations are breaking down in everyday lives.

Observations that we have made and observations that others have made, certainly over time in this literature, is that of course, low voice volume and difficulty with clear speech sounds can get in the way of conversations for people who have Parkinson's disease. But the other challenges that also come up that are a little less expected are increases in grammar errors. We find that early on in Parkinson's disease, people are making subtle grammar errors. Their language can tend to have fewer key ideas or less complete key ideas, and that can be frustrating sometimes to them as well as to the people they're communicating with.

Dr. Angela Roberts 00:13:04
We see more disruptions in speech. There's more word hesitations, pauses, the need to revise words and phrases, or the need to repeat sounds. Also, importantly with regard to conversations, we see that people have difficulty modulating this thing we call prosody, or voice modulation of the intensity, the loudness, and the pitch changes in your voice, and also facial expressions. Those are really important for conveying meaning. It's one thing for me to say, "I'm angry." It's another thing for my face to show that I'm angry and also my voice to show that I'm angry.

While we know that the difficulty expressing these is problematic in Parkinson's disease, we also know that within PD, it's harder for people with Parkinson's disease to read and interpret those facial expressions and prosody changes or voice pitch changes in their conversation partners. It's not only an issue of producing those changes, but also perceiving those changes. This can lead to what we call conversation breakdowns.

Here's a great example of one that actually happened in my house a few weeks ago. "Let's go to the art show on Saturday." "What did you mean? Are we going to the cat show?" When the message doesn't get through, when there's this dyssynchrony between the message that is sent and the message that's received, we call that a conversation breakdown.

Research that we've been doing in my lab has been looking at these behaviors, as I said, in everyday conversations of people with Parkinson's disease. We're one of the few labs that has looked this direction. I'm going to apologize. I don't have access necessarily to a pointer to be able to guide you through this slide, but I'm going to walk you through it.

When we look at these conversations, we break down what we call trouble sources. These are the reasons why those misunderstandings or conversation breakdowns occur. Here you see several categories of those breakdowns. We put them in a box and say that this conversation breakdown was caused largely by this issue.

Dr. Angela Roberts 00:15:00
Motoric breakdowns are those breakdowns that we think about as being around voice issues and also speech loudness and speech sound clarity. The language form and content errors in the next column really reflect on whether or not someone used the correct word or whether the grammar form of their utterance was off in some way. The third column are those things that we call discourse or turn-taking issues. This is when we see people not navigating whose turn it is to speak. Is it my turn? Is it your turn? Am I introducing a topic and holding on to that topic, or am I jumping across topics too quickly?

The last two categories are really environmental things, like are people talking with the sink on or the dishwasher running, and then this small class of variables, or behaviors, that we have trouble classifying into one group.

One of the things that you'll see in this slide is that, surprisingly, in Parkinson's disease conversations, you would expect that the majority of the conversation breakdowns that occur occur in this motor class, these kinds of issues with voice and speech sound clarity, but they don't. The majority of the trouble sources that we see, the majority of the reasons why conversations break down, and these were in conversations between people with Parkinson's disease fairly early in disease, without the presence of any dementia or significant cognitive impairment, occur because of those language or word choice issues, and also in this context of topic management or turn-taking.

Here's the same data, but this time what we've done is we've broken it down into the trouble sources that result from the person who is the care partner, the family care partner in this case, or from the person who has Parkinson's disease. Here in the slide that you're looking at, purple is the family care partner and the person with Parkinson's disease is in orange.

One of the things that you should observe here that we found rather interesting when we started looking at these data is that the sources of conversation breakdowns don't just reside with the person who has Parkinson's disease. Indeed, depending on the nature of the breakdown, the care partner can actually be more responsible than the person with Parkinson's disease. We certainly see that people with Parkinson's disease make more motor errors, they make more language form and content errors, but that third column, the discourse, the ones that involve navigating turns and really maintaining a topic and sharing a topic and introducing a topic correctly, the majority of those breakdowns are actually the result of the care partner.

A lot of these happen in the context of over-talking or talking over or interrupting the person with Parkinson's disease.

Dr. Angela Roberts 00:18:06
What that's led us to believe is that the nature of the conversation problems that we see in Parkinson's disease are not just about Parkinson's disease. They're not just about the person who's carrying that diagnostic label, but they're about the breakdown of the collaborative communication between two people. This causes us to start to really think about therapies and interventions in Parkinson's disease differently. It was important that we not just address the speech issues and that we address the problems that are centered with the person with PD, but that we think about this as one unit, and that in the context of conversations and living with Parkinson's disease, both partners develop strategic ways to improve communication, but they also develop some bad habits that require addressing in the context of therapy.

Here's an example of one of those trouble sources. I'm not going to spend a lot of time going over this, but I just wanted you to see an example of what we see sometimes in the data that we extract from people's homes. PD is the person with Parkinson's disease, and CP is the family care partner.

What you can see here is that the person with Parkinson's disease first provides an explanation of something he's talking about on the television that isn't very clear, and the care partner has to send a signal that they didn't understand. The person with Parkinson's disease in the third line tries to correct that. The care partner comes back in the fourth line and says, "Gosh, I didn't get that quite yet." The person with Parkinson's disease goes back in to try to correct, and finally, after the back and forth of three turns, they actually get the information clarified. This is what we call a complex repair. Typically, we would see these repairs happen very quickly, but this is an example of exactly the types of behaviors that we see in these home recordings.

What we have concluded with this work now over a couple of studies is that almost two-thirds of the conversation breakdowns that occur in Parkinson's disease actually occur because of things that are unrelated, or at least somewhat unrelated, to the motor changes. These include longer pauses. They include not as clear signals for turn-taking, slowed processing of information, as well as this behavior that I talked about, this over-talk or this interrupting of the person with PD when they're trying to communicate. That over-talk then means that neither partner has fully understood the message.

Dr. Angela Roberts 00:20:47
There's this universal rule in the context of conversation. Remember I said conversation is rule-bound. We, as humans, are hardwired that when a conversation breaks down, we need to try to repair it. We don't leave these conversations unrepaired or these conversation breakdowns unrepaired.

I just wanted to show you this slide quickly to say that in the context of Parkinson's disease, and again, I don't have a full annotation here, so it's going to be a little bit hard to walk through this. In every conversation, when a breakdown occurs, there's the need for someone to signal that they did not understand, and either they will initiate the repair or their communication partner will initiate the repair.

These repairs are really important in Parkinson's disease conversations because the other interesting thing that we observed when we recorded people in their homes, because you have this option of these other-initiated repairs where the partner is the one who initiates, or self-initiated repairs where you make the error and you're also the one to try to correct it. But in Parkinson's disease conversations, almost 75% of the repairs are what we call these other-initiated repairs, meaning that the person with Parkinson's disease and the care partner both are dependent on their other partners for repairing their breakdowns.

While not uncommon in couples or family members who don't have Parkinson's disease, this inflated number of these other-initiated repairs seems to be a phenomenon in Parkinson's disease, such that people within these conversations, so the person with Parkinson's disease and their family care partners, are really dependent fully on each other for both preventing breakdowns and also for facilitating the repairs. Again, this kind of notion to us that this is fully dyadic.

When we first set about this research, we thought, gosh, it's going to be the family member who's always initiating the repairs. The person with Parkinson's disease may lose sensitivity to the fact that a breakdown has occurred and may not try to repair the conversation. That's actually not what we saw at all. We saw that they were equally invested. The person with Parkinson's disease was just as likely to repair their conversation partner's breakdown as the conversation partner who doesn't have PD was to try to repair the person with Parkinson's disease's error, so that this sensitivity seemed preserved in Parkinson's disease.

Dr. Angela Roberts 00:23:19
But we did see some issues. In a study that we just completed this summer, we actually compared these repair cycles in Parkinson's disease to people who have Alzheimer's dementia. We looked at dyads where the person had Alzheimer's disease and a healthy family communication partner, and then we looked at the same type of relationship in people with Parkinson's disease. What we saw in the context of Parkinson's disease is that these repairs, these signals of repairs, were much more likely to go undetected. They were actually much more likely to go undetected by the care partner than they were the person with Parkinson's disease.

In essence, what our research showed is not only are people with Parkinson's disease sensitive to when conversation breakdowns occur, they are much more likely to try to be the one to initiate the repair than their family care partner who does not have Parkinson's disease. People with PD, again, are not just sensitive. They're almost hypersensitive to trying to repair these breakdowns. We found that compared to people with Alzheimer's disease, PD care partners were more likely to abandon repair attempts.

The types of repairs that we saw, these sequences of conversation repairs, how we fix the message when it didn't get through clearly the first time, were actually much more complex and took much longer in the context of Parkinson's disease than they did in Alzheimer's dementia. In fact, one of the things we saw is that the attempt to repair or to try to fix the misunderstanding often led to another series of misunderstandings, similar to the example I showed you earlier.

Now let's talk about what we do to try to make this better. One of the things that we can do to make this better, and the first obvious low-hanging fruit that we have to go for, is trying to improve speech and voice. While I said it's not the primary issue that's causing these breakdowns, it certainly is a problematic issue in the context of Parkinson's disease. I'm going to spend just a couple of slides talking about that. I know some of you at your viewing parties have another speaker that follows me that's going to talk about these in more detail, and I'm happy to take questions also at the end about speech and voice exercises.

But to go over these briefly, one of the things that we know now that we didn't know even a decade ago is that early and targeted voice training actually may slow the decline in voice impairments. We have some lovely work that's been coming out of animal model research that shows that early targeted work, intensive voice training, may actually not just reduce the severity but slow the progression.

We have some preliminary evidence from studies that actually shows that intensive loudness training or speech training can also change how the brain processes and how the muscles process information about speech and voice production. We think this isn't just about changing the endpoint behavior, but actually changing some of the progression of the disease and how the brain is processing or using information for producing a loud enough voice and a clear enough voice.

Dr. Angela Roberts 00:26:34
To this end, there are really two interventions I'm going to touch on very briefly today, because it's hard to do a talk on communication in Parkinson's disease and not address these. There are two interventions that have garnered probably the largest degree of evidence in the context of addressing speech and voice problems in Parkinson's disease. The first is one that many of you will be familiar with, the Lee Silverman Voice Treatment. It has more research aggregated in terms of its efficacy than really any other therapy program that's been published specifically in Parkinson's disease. It follows the rules of a high-intensity voice exercise program that should actually change or help people recalibrate the loudness of their voice such that it's sufficient for engaging with others both in and outside their homes.

It's high intensity in that it's four days a week over the course of 16 sessions. There are some modifications to this intervention now that allow it to also be delivered at lower intensity over longer durations. But the notion here is that it's not only strengthening the muscles, but it's also retraining people to think and to be loud. It has had great effectiveness over the years for many individuals with Parkinson's disease.

One of the newer treatments out, though, is called SpeechVive, and SpeechVive is a treatment that is partially facilitated by a device. SpeechVive, like LSVT, addresses speech loudness and speech clarity. It can also address some of the rate issues, so people can slow down a little bit more when they're wearing the device. But different from LSVT, SpeechVive is a treatment that's largely delivered with less one-on-one contact with the speech-language pathologist and more practice within the home environment.

It's a device that looks a little bit like a hearing aid, and it operates on this principle that we call the Lombard effect, which basically means that when you go into a loud environment, we as humans try to talk above the loudness of that environment. If you're in a subway station or a restaurant, you're always going to try to be louder than the background noise around you. That's called the Lombard effect. While people with Parkinson's disease maybe cannot make their voice as loud as they could before they developed Parkinson's disease, the Lombard effect itself, the need to try to be louder than the environment, is still preserved.

This device takes advantage of that. Every time the voice gets to too quiet of a level, it plays this cocktail party or what we call multi-talker babble background noise that actually forces the person to raise their voice louder. Not force because they're having to work to make their voice louder, but force in this automatic reflex that the brain tells them to be louder. They're able to get a louder voice without thinking as much about it or without focusing on being loud.

For some people who really have difficulty thinking about being loud or forcing their voice to a certain level, this device can be very helpful for them. For the first time in kind of a decade, we really have two interventions that have made it into this land of pragmatic clinical trials for people with Parkinson's disease.

Voice amplifiers are another option for people. These devices that people wear have basically a microphone and a speaker system that allow them to be louder, especially in smaller conversation environments.

Dr. Angela Roberts 00:30:20
But sometimes, and hopefully I've made this point sufficiently to you, turning up the volume is not enough. When turning up the volume isn't enough, then we have to actually focus on conversation strategies that change not only the voice, not only voice loudness, not only articulation, but the environment and the nature of the interaction between two people in a conversation. To that end, work in my lab has been really, over the last five or six years, looking at developing this treatment called Restructuring Conversations. Restructuring Conversations has two goals. The first is to reduce conversation breakdowns, and the second is to increase the effectiveness and efficiency of those repairs.

Again, what we do in this intervention is not so much about reinventing the wheel. There are a couple of things that we do. We do personalized strategies for people with Parkinson's disease and their family members, and we help select strategies that are really specific to the types of problems that they're having.

The strategies that I'm teaching here and the strategies we'll go over today are really those strategies that we know about and are common to improving communication in anyone who has communication problems, including those with hearing loss. What's different is how we teach these to people. We teach people how to do these strategies through this personalized, dyad-focused intervention, meaning the person with Parkinson's disease comes to the treatment with their family member. We don't separate the two. We work with both individuals together to really master the use of strategies and to learn how to be flexible with strategies in their home environment.

While we're not going to be able to walk all the way through the program today, I did want to walk you through some of the strategies that we do teach in the program.

One of the first things that we teach folks to do is simply to minimize environmental distractions. Now, if you go back to that data I showed you a little bit ago, we didn't see a lot of conversation breakdowns necessarily occurring just because people have the sink running in the background. But this certainly complicates when other communication problems are present. It's just that good reminder, and we have to teach people from the beginning: don't try to have conversations when one of you is in one room and the other one is in the other room. Make sure to turn off the sink, turn off the dishwasher, turn down radios and televisions. Most importantly, get face to face.

We know that conversation breakdowns reduce when people are looking at each other so that they can see each other and they can hear each other while they're talking.

Dr. Angela Roberts 00:33:03
This is probably the biggest one. It is the simplest of the strategies that we teach. It is the hardest one to get people to use in their everyday lives, which is this notion of just taking more time. Remember I said that the majority of these conversation breakdowns occur because of people talking over one another or because topic shifts are not as clear. We see all of this result from this desynchrony in time between it taking the person with Parkinson's disease longer to process information, longer to formulate what they want to say, and the care partner who doesn't have Parkinson's disease trying to still follow the same old rules that he or she has learned over their entire lifetime around how to have conversations, which is conversations move quickly.

In this case, they can't move quickly. Pausing even just a little bit, providing even just a little bit more time, gives the person with Parkinson's disease time to process and time to formulate. When we put this strategy in place, we can almost instantly reduce the number of conversation difficulties down by about 20 or 30% just by putting this time strategy in place. Getting people to use it every day takes us a little bit more work, but it is one of the most effective strategies that we have.

Along with that is this notion of topic management. When people change topics quickly, and I am one of the world's worst about this in terms of my conversation habits, people have to literally start and stop their thinking processes on different topics. It becomes really important to start a topic and finish a topic before moving off to another idea. What this allows is for both partners, whether you're the person with Parkinson's disease talking or you're the family member talking, to make sure that they have fully understood the message before they move forward.

Otherwise, you're left still thinking about what someone said a minute ago and then having to move yourself forward in the conversation. That creates competition and noise and is equivalent to trying to do two or three different mental tasks at the same time. One of the things that we know is affected in Parkinson's disease is this ability to multitask. It affects all of us as we get older, and it's more affected in Parkinson's. This notion of really thinking about staying on one topic, one idea at a time, and moving through them systematically is important. If you do need to change topics, simply giving your partner an alert that says, "I'm going to change topics here, but we'll come back and finish this one in a minute," can be really effective.

Dr. Angela Roberts 00:35:44
Repairing conversations, in terms of what to do: you want to monitor for signals of conversation breakdowns. This is probably the greatest gain that we did when we first started this treatment program, Restructuring Conversations. We actually didn't teach this, and we found that all the strategies in the world did our clients no good whatsoever until we actually started teaching them how to repair conversations. Once we did that, once we taught them how to monitor for signals of breakdowns, how to look at their partner to know that that message didn't get through as cleanly as it should have, this was just groundbreaking for us in terms of being able to make gains with this program.

It's also important that you verify that you understood the message correctly. Did I understand you? Did you say we're going to the cat show, or did you say we're going to the art show? Checking in to make sure that you understood correctly. Lastly, if you didn't understand, don't ever be afraid to just say, "I don't think I got that. I don't think I understood you correctly. Could you repeat that again?" This is a place where people will often say to us, "But won't my partner be offended if I ask them to repeat themselves?" It takes patience.

It takes people knowing why you're doing it, but no, for the most part, people won't get offended. It's much better to make sure that you've understood everything correctly the first time than to try to move forward in the conversation leaving information unresolved. One trick to doing this is not to say, "You didn't say that loud enough. Can you repeat that?" It's to say, "I don't think I understood you. Could you try that again?" The framing of this as the person who didn't understand being the one who assumes responsibility is really important toward ensuring that these repairs go smoothly.

When repairing conversations, here's our rule: repeat, rephrase, show, and stay calm. Repeat information if you need to. If you think that someone didn't understand you, go ahead and try to repeat it or rephrase it differently. Give them the chance to say, "Oh yeah, I got that the first time," or, "I didn't get that. Could you try it again?" Show or gesture if the message really isn't getting across, but above all things stay calm and avoid being critical with one another. It is really tough when conversations are breaking down, everyone's busy and you're in a rush to get out the door to try to stay calm. But it's an incredibly important part of making this work.

What not to do? Don't raise your voice. Be really careful with providing these non-specific, what we call non-specific clarifying prompts. Things like "what," "huh," and "eh" are really, really bad repair strategies. Why? Because if you say something to me and I say, "Huh?" I don't actually know what you didn't understand. If you say to me, "I didn't understand. Did you say cat show?" then I know, "Oh gosh, no, not cat show. I said let's go to the art show." But if you just say "huh" to me, if you just say "what" to me, if you just say "eh" to me for my dear Canadian colleagues, it doesn't work nearly as well.

Really trying to break this habit, because this is a habit that we as conversation partners do all the time. The other thing that happens is when people say "what," "huh," or "eh," someone's immediate reaction is simply to repeat exactly what they said but to do so in a loud voice. The problem with that loud voice is it can actually distort the signal, making it harder to understand, even for people who have hearing loss. It actually distorts your facial expressions as well. People think you're angry with them because it tenses up your face. Avoid saying "what," "huh," and "eh," and instead really think about, "What did I not understand about that sentence?" and let me ask specifically for that information or that clarification.

Dr. Angela Roberts 00:39:49
Try to be careful about excessively reducing speech rate. It doesn't help with getting information in. It can actually, if it's too slow, reduce someone's ability to process effectively. Then always be careful to try to follow through with repairs. Try to avoid just giving up or abandoning. We have this great image that comes from one of our data sets where the wife is frustrated because the conversation isn't going well and she's having trouble repairing it. She puts her hands up in the air, she looks at the camera, and she walks away.

Sometimes that's going to happen. Our general rule about this is three strikes. Try a strategy. If that doesn't work, try to rephrase. If that doesn't work, try again to express your idea in a different way or to get the information that you felt like you missed in your partner's turn. If that still doesn't work, it's okay to walk away, as long as you come back to it and as long as you say, "Let's try this again later." Messages and communication are too important. Connecting through conversation is too important for us to walk away from the attempts to try to make sure our partners feel fully understood and that our ideas feel fully conveyed.

A few of the things that we teach in our program, and then I'll be wrapping up here quickly. One of the other things that we try to really help dyads be able to do, or people with Parkinson's disease and their family members do, and this builds upon research that was done years ago in stroke-based aphasia by Aura Kagan and others at the Toronto Aphasia Institute, is really teaching people how to work together as a team. We apply it uniquely here in Parkinson's disease, but helping partners to see that they're working with one another to both acknowledge difficulties and successes, to validate the challenges of communicating when you have Parkinson's disease, but also to respect their expertise. To say, "What you have to say is so important to me that I'm willing to work to try to make it easier for both of us." This notion of being a partner and revealing someone's competence, the knowledge that they have, and also validating their feelings.

The other thing that we work on is helping people to negotiate preferences and facilitate participation. What do we mean by that? We mean that sometimes you're going to need to talk for your partner or sometimes you're going to need to fill in information for them, and this happens often at doctor's offices, but it should always be done after you've negotiated that preference. Do you want me to speak for you? Do you want me to help you when you're struggling? How can I help you when you're struggling? Communication is a sense of what gives us our very nature and personhood.

Dr. Angela Roberts 00:42:45
When it is taken away from us without us being able to negotiate that we yielded it to someone, it can cause depression and it can cause people to lose the sense of who they are. This happens all the time in disorders where people have communication impairments, and we have some early evidence to show that this happens in Parkinson's disease also. This need for the person with Parkinson's disease and their family members to work together to say, "How can we help each other? What can I do? When do you want me to help?" This notion of facilitating participation means actually opening up the conversation for the person with Parkinson's disease, finding out fillers and tricks that you can use if you sense your partner's getting left out to say, "Hold on. Yesterday we were talking about this, and Joe had some great thoughts on the candidates running for president this year. I'd love for you guys to hear that. Joe, would you share with Bill and Susan your thoughts?"

That little bit of time buys your partner time to be able to formulate his or her thoughts and to be able to come into the conversation. Think about setting up smaller socialization groups. Don't put each other underneath the pressure of having to try to navigate these more challenging communication moments in really busy or large crowds.

The last thing that we teach is this notion of being in tune with yourself, your partner, and the environment. Choose carefully the times of day that you're having conversations. Don't try to have a really important conversation about finances if someone's in the off stage of their medication and it's going to be harder for them. Keep track of your own emotions and the emotions of your partner in the context of the conversation. Lastly, always remember that conversation is for communicating and connecting. It's not for testing.

Conversations with your partner are not about seeing how he or she could raise their voice louder, or whether or not their cognition is intact for the day. Do they remember the names of your kids or what day of the week it is? Conversations are about connecting. As you go into a conversation, make sure that motivation is not about testing yourself or testing your partner, but actually trying to connect with them. Setting that intent can go a long way toward improving conversations.

Last slide here is a reminder that conversations are the responsibility of both partners. Good conversation skills can be developed with practice, but you can't do that just by taking even this list of strategies I've given you that we found really helpful with our clients and that really address those problems that we see in our in-home data that we collect on conversation difficulties. That's not enough.

Dr. Angela Roberts 00:45:27
This takes practice. You can't just take the list and go home tomorrow and say, "Gosh, this is going to work right away." Hopefully, you'll take some nuggets of wisdom back today that you can begin to use, but this takes practice. Be patient with yourselves. Be patient with one another. Conversations are meaningful, but they require flexibility, empathy and the ability to adjust over time. The investment is worth it. The investment in preserving emotional connections, relationships, reducing burden, maintaining personhood, both of each of you individually and your relationship, is very, very important.

Lastly, this kind of gratuitous push: we always need your help in research. My lab does, as does every researcher out there. If you're ever interested, we'd love to hear from you and connect with you about how we can help you and how you might be able to support some of the projects we have going on in our lab, both here and in some of the work that we do in Canada as well. Thank you very much for your time today, and I really, really appreciate the opportunity to share some of our work with you and hope that you have found it helpful. I'll be happy to take your questions.

Dr. James Beck 00:46:37
Angela, that was fantastic. Thanks very much for a really wonderful talk. You covered a tremendous range of things, which I think are really very helpful for people. My takeaway from this, and I'm sure our audience's, was that this is helpful for everyone. I mean, whether you have Parkinson's or not, these are ways to really improve communication, especially in a couple. I know one of the questions that came through is: what is a dyad? Is a dyad just simply saying a couple or two? Is that a good definition?

Dr. Angela Roberts 00:47:07
Yeah, let me clarify that. That's shop talk, and I'm really sorry. I think we were speeding up the

Dr. James Beck 00:47:14
A communication professor.

Dr. Angela Roberts 00:47:15
Exactly. I am full on, and will own the fact that I sometimes am a bit better teaching it than I am at doing it. A dyad is simply a term that we use for, and not just us, but others use for when we're studying conversation or studying communication. It's the notion that it's not just centered on one person. The most classic form of speech therapy, especially in Parkinson's disease, would see the person with Parkinson's disease going to be treated. We like to frame this in this kind of dyad space where it's not just the person with Parkinson's disease, it's they and someone else. That could be a spouse, that could be a child, that could be a friend.

A dyad simply means that there are two people involved in the conversation. Therefore, there are two people that are the result of the successes and the failures, and thus two people who need to be part of the therapy process.

Dr. James Beck 00:48:07
Absolutely.

That brings up a really good question. When you think about, for people who want to move beyond the tips that you've provided on how to improve communication, they would seek out a speech therapist, a communication specialist. Would both partners go? Typically, I've often thought about just one. Maybe the individual with Parkinson's who is living with that would go. But here you're suggesting, based upon your research, which I found really interesting, that it's both partners who need to go and really benefit from it.

Dr. Angela Roberts 00:48:42
Yeah, thanks for that question. I didn't mean to interrupt. I didn't mean to overtalk. See? Again, my own bad habits.

We do think that way. Sometimes people with Parkinson's disease will say to me as well, "I'm not married," or, "I live on my own. Does that mean these therapies aren't for me?" And we'll also say no to that. You are interacting with someone meaningful in your life almost all the time. It doesn't have to be the spouse who's coming in, and certainly we can teach strategies that you can then teach others, so it doesn't have to be always as a dyad. But the growing evidence that we have in communication disorders and other areas, not just Parkinson's disease, says that these dyad approaches may actually be effective ways to go, because of the nature that you're not just changing the person who has the condition and changing what they know, but you're changing also the environment in which they communicate, and doing so may give us greater gains overall.

Yeah, we actually are suggesting that for some interventions with a speech-language pathologist, it would be helpful to have both partners engaged and active within the therapy session for sure. We've tried this both ways. We've tried doing it just with the conversation partner, so just the unaffected person who doesn't have Parkinson's disease. We've tried just with the person who has Parkinson's disease. Our gains every time are greater when we have them together.

Dr. James Beck 00:50:06
I guess a follow-up to that question then is when you see this communication breakdown that you have with these dyads, do they persist? If the care partner is overtalking and doing this, is it only with the person with Parkinson's disease, or is it also when they engage with other people in conversation as well, separate from when the dyad is, for whatever reason, temporarily separated?

Dr. Angela Roberts 00:50:35
Ah, that's a stellar question, and I thank you for asking it. That's the next research study that needs to be done, right? There are two things we currently don't know that I think are really interesting. We have some soft observations that kind of inform why we think this is so interesting. There are two questions there, so I'm going to break down. You asked one, but I'm going to say there are two. The first one is: do these problems, if you think about these as maladaptive responses in conversation, they are behaviors that everyone does in conversation, but they certainly increase in frequency and severity in Parkinson's, and also in Alzheimer's disease and other conditions.

For Parkinson's disease specifically, do we see these maladaptive behaviors develop over time as the disease progresses, or as people are learning to communicate within Parkinson's disease, do we see them get better over time? Do they worsen over time? The other factor is one that you just raised, which is: do these behaviors begin to extend to other people who don't have Parkinson's, or are these nuclear to their home? I don't think we know either one. There's a little bit of research in the autism literature that would say they might extend to other conversation partners when these conversation difficulties begin. We have some science that should say, and might say, that it does extend beyond this kind of nuclear dyad, but we don't actually know that. I think those are great research questions to begin to pursue in Parkinson's disease. I hope I get the chance to ask and answer them.

Dr. James Beck 00:52:03
Excellent. Thank you for addressing that.

What I want to do is just take a quick moment. On your screen is about, for our allied health professionals, we have Team Training. Alumni are added to our national Helpline referral list. That means people who are speech pathologists who have come through our Allied Team Training are on this list, because I know that's a question that has come through about how do I find a speech pathologist. We have our own 800 number, which we provide to people to answer questions and encourage people to do so. Angela, how would someone generally, who doesn't know our number for whatever reason because they've forgotten our thing — and I'm hearing huffing and puffing from my colleagues in the background — how would one normally find a speech pathologist?

Dr. Angela Roberts 00:52:51
I think there are a couple of ways to do this. I'm a big fan of always trying to go with people who have been trained within the Parkinson's Foundation programs. It's interesting, not necessarily data I covered in this talk, but we've just finished some research looking at the frequency of referrals to speech-language pathology, and it's abysmally low. One of the reasons why we think it's abysmally low — and not just us, but some of the other Parkinson's Foundation Centers have looked at this over the years — is sometimes just lack of knowledge. The lack of knowledge that some of these conversation strategies, not just speech and voice strategies, can be addressed, that things beyond swallowing can be targeted in speech-language pathology programs for people with Parkinson's disease.

I think going through some of the providers that the Parkinson's Foundation has trained is a great way of getting someone who's knowledgeable about the disease. Other ways to find speech-language pathologists are to go through national accrediting bodies, so things like ASHA if you're in the United States. There's a similar organization on the Canadian side that actually has lists of speech-language pathologists. Depending on the database, some of them will say populations that they commonly see, so you can get some information that way.

Then also just connecting with your local Parkinson's Foundation expert care center, even if you're not one of their patients. If you reach out and ask them who they know and who they've networked with, that's another great way to find speech-language pathologists who are more familiar with Parkinson's disease. I do think it takes some expertise here, and we know that in Parkinson's disease, in an allied health sense, having people who are familiar with and experts in Parkinson's disease does result in better care. I think trying to get through some of those avenues is more effective.

Dr. James Beck 00:54:42
Absolutely, we totally agree. Experts really make a difference. Again, if you're listening in, 1-800-4PD-INFO is our 800 number, and you can call and speak to our colleagues there to do that. I just want to take a moment and give a shout-out to my colleagues here with me in New York. Brace yourselves, ladies. Just say hi. They're helping us run our Expert Briefings program, so thanks to them for doing so and getting this up and going.

Angela, some questions from our audience have come in here. As we talked about, this really involves a couple here in improving strategies. I think it was really important you mentioned about staying calm and really trying to take your time and interact. You can imagine it's a sensitive topic. This is a question that's come in from someone whose wife has Parkinson's. He says that she'll talk to him with her back turned to him, and she's speaking in a low voice, and she's sensitive about this. How do you broach it so that your loved one will be willing to go in? Because this is like therapy. I mean, imagine, when you're bringing people in, it's not only trying to repair communication, but you're almost trying to repair a relationship in some respects because communication is such a key aspect of that.

Dr. Angela Roberts 00:56:05
Oh, it absolutely is.

You are so right. There are times when we do bring people in that we actually will involve a social worker or someone else to help support us, especially if the communication problems have led to some relationship dysfunction. We do see that. We see that in PD, we see that in Alzheimer's dementia, we see that across the board in these conditions. I appreciate the question, and there are a couple pieces of advice I would have.

The first is actually to think about engaging a clinician. Putting a third person in place can actually help tremendously. When we get some of these individuals within our programs, one partner sometimes is much more reticent or resistant than the other. Having a third person there to help broker those conversations or help negotiate, as we said, thinking about negotiating preferences and strategies that work, having a third person can be really useful in that. There's a reason why counseling and other approaches are done with a clinician playing that role, whether it's a speech-language pathologist, a social worker, a psychologist. It's because that third person could be really helpful in brokering the conversation.

That's one thing that I think, if you're having some difficulty and there's some increased sensitivity there, bringing someone else in might be helpful. Then it kind of neutralizes. It's not you telling her she's not doing well. It's someone else who has an outside perspective. The second thing I would say is, even sometimes when we put these programs in place, it can take time to chip away those old defenses and those old senses that this person's just accusing me, or that I'm not trying, or that I'm doing the best I can and I can't do any more, so why do they want more from me? All of those feelings can come up.

This is where it takes patience, and unfortunately, this is the place where the care partner is going to bear a tremendous amount of the burden because they have to be willing to go back to that well over and over again and try to take off little bits of this. Maybe the first issue is if she's always sitting with her back to you, don't tell her to turn around, but actually move yourself to sit in front of her and slowly start to introduce that as the new position that you want to have conversations from, not expecting her to meet you all the way or even half the way until she can actually see that this might be effective and helpful. Once someone can see that it's helpful, it makes it a little bit easier to get them to change their behavior. But these are not easy processes.

Dr. Angela Roberts 00:58:35
It's why, for us, when we first started this, we were really frustrated because people were just handing out communication lists and conversation strategy lists to family members and saying, "You should be able to go home and do this tomorrow." We were looking at this process going, "No, that can't work." Even the lists that appear on websites, family members develop this perception that I've got to be able to go home and do this right now. We actually have an eight-week treatment program to get people there, and we find it takes every bit of those eight weeks. In my mind, just handing over strategies or just spending two sessions on this isn't enough. I think that's the place we have to get past as a profession.

It's a place we need to advance the research so that we're really proving without a doubt that this longer process is better to support people just like the gentleman who wrote in there with that question, because we can't expect them to bear the burden of it and to do it in an unsupported way or not to put sufficient time and resources to it.

Dr. James Beck 00:59:31
Absolutely. I think that's a really good point, that these are things that have occurred over a period of years, if not decades, so it's not going to just be able to be erased with a swipe of a hand, as much as we'd like.

On screen, our colleagues who are watching, are resources for the Parkinson's Foundation. Just keep in mind that we have, in addition to fact sheets and great publications on communications that individuals like Angela have worked on, other things available too for people who have questions about Parkinson's disease.

If you've enjoyed this Expert Briefing, one of the nice things about our new technology is that we can do a very quick turnaround. Tomorrow, look for an archived version of the webinar for you to be able to replay. The slides are there as well, so if you want to download them individually and review them on your own, you can do that as well. Some more questions are coming in from Zoom, and I know we're getting close to the top of the hour, so if I can just have a few more minutes of your time, Dr. Roberts, I would really appreciate it. Of course.

Our Omaha watch party has a question, and it's just a specific thing about how to repair conversation. You may have addressed this a little bit, but if you wouldn't mind, again, providing some more detail. Would enunciating help with helping repair conversations? Is that usually one of the key breakdowns? Is it the person with Parkinson's needing to enunciate more clearly, or is it the care partner or the other person of the dyad? What are your thoughts on that?

Dr. Angela Roberts 01:01:02
Yeah, it can be both. A slide that's hidden in all of this is that roughly 60% of all people over the age of 55 have some form of hearing loss. That's not lost upon us because people with Parkinson's disease also fall in this age group, as do their care partners. One tiny interesting story: we used to screen hearing when we went out for some of the workshops that we did, largely because my husband's an audiologist. One of the things that we found is that overwhelmingly it was the care partners who had more hearing issues than the people with Parkinson's disease. The people with Parkinson's were saying, "It's not just my voice. See, hearing also."

There is something to be said about that. While enunciating can make things more clear, you have to be careful. It's not a primary that we go to. Certainly from the speech perspective, if this is speech clarity or someone is speaking too quickly, absolutely enunciating can be helpful. But the message we want to send is that enunciating or trying to over-exaggerate articulation, which can be helpful from a speech perspective alone, may not take care of the issue, especially if there are more things going on, like additional hearing issues or other types of conversation problems, like topic management or not giving enough time, that are also problematic. I think it's one strategy among many that can be helpful. The notion here is there's not one strategy that works, but people learning how to use a combination of strategies in a flexible way in different circumstances as the nature of the issue requires.

Dr. James Beck 01:02:43
Got it.

Just to take a quick pause to remind our viewers that our next Expert Briefing is going to be November 5, again at 1:00 p.m., presented by Dr. Joseph Quinn at OHSU, Oregon Health & Science University. He's going to be talking about coping with dementia for care partners. That will be a very engaging topic for everyone.

Two quick questions and then we'll finish up, Dr. Roberts. One that I think is just interesting has come in, and I wondered about why is it when people sing, they are able to really project their voice better? What is it about singing to help people with PD be able to be heard, to be loud?

Dr. Angela Roberts 01:03:25
Yeah.

Again, I'm going to chalk this up to one that needs to be researched more, right? Because the phenomenon we see absolutely, and we don't see it just in Parkinson's disease. People who are familiar with stuttering know that sometimes people can sing when they have more difficulty with their speech. Even in the context of aphasia, which is a language problem that can occur as a consequence of a stroke, we can find a similar phenomenon.

The component here is that we think the rhythm of speech might be important. Without getting overly scientific, putting speech to music may embed that rhythm a little bit more, making it easier for people to amplify their voice and to use speech in a different way, to engage other regions of the brain that aren't used when we're just talking but that are required when we're talking or talking and singing. The notion is that it might be engaging other brain areas. It might be activating different aspects of timing in speech that are important. But we observe this in enough groups, not just Parkinson's disease, that the scientific explanation for it we’re not perfectly clear on. 

It's a great question. It's a solid observation, but the science of it we don't fully understand yet.

Dr. James Beck 01:04:41
Okay, that's interesting. Final question, and maybe a long one, but I'll give it to you. Maybe it's short, we'll see. We've talked about this engagement of people, the care partner of a person with Parkinson's, engaging a speech therapist, trying to improve these repair conversations.

What if you're the loved one who lives far away, the son or daughter, and you learn about this and you hear the conversations your parents are having or your friends are having? How do you, as a third party, help them do this, whether you're doing it from long distance or even close? How does someone who's outside and observing this problem be able to make an impact?

Dr. Angela Roberts 01:05:24
Yeah, great audience and great question. I think we're getting closer and closer to being able to deal with these issues through using telehealth and other models of intervention. In another study in another area, we actually have a telemodel or telehealth model intervention. As a family member, if you're in a state that allows for that, or we get an active protocol going more so in Parkinson's disease with those types of approaches, that way you could actually call into the conversation or, using a computer-based intervention, your mom and dad and you could actually work not just as a dyad but as a three-way component of this.

The other thing that we have done in the past when we've had people in our interventions is actually enrolled their family members who live far away. We do that through teaching them how to almost be a train-the-trainer model. We do this a couple of ways. For us, it's no good if only the dyad or the couple we're working with has the strategies. We try to make sure that they can train others in how to use them. Sometimes that's them taking on the role of training other people in their lives, and sometimes it's them bringing their family members into the sessions, and we work with them as well.

I think in our world, it takes more than just a dyad. It takes more than just a village. It takes this giant family of people helping to support and live with Parkinson's disease. I think the way to get involved is to find a speech-language pathologist that your mom and dad might be willing to work with, but who's also willing to connect with you and draw you into the process. The science behind that is we call it a family systems-based theory of doing intervention. We actually know it works. It's a completely viable way to think about getting involved, but finding the right clinician is a first step in that.

Dr. James Beck 01:07:16
Exactly. All right, well, Dr. Angela Roberts, thank you very much for speaking with us today. It's been a very engaging Expert Briefing and helping us to kick off our new presentation software.

Dr. Angela Roberts 01:07:28
Thanks for everyone's time. This is spectacular. Thanks to Parkinson's Foundation and thanks to Dr. Beck for hosting. This has been really great. I've enjoyed it very much.

Dr. James Beck 01:07:37
All right.

For our audience, when you leave, there will be a survey. Please complete the survey. We depend upon your feedback to make improvements. Until then, I wish you all a good week, and we'll speak again in November. Until then, take care. Bye-bye.