Listen to the episode: Focusing on What’s Possible for People with Dementia \
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Gray: Before we get started, I want to mention that currently- the day this podcast is being released, I’m at the 2019 ASHA Convention. I’ll be recording conversations with presenters, and you’ll hear some of those interviews on future episodes of this podcast.On this episode of ASHA Voices, we’re going to discuss the technique of voluntary stuttering as a form of treatment, and we’ll talk about person centered care for people with dementia.
And, if you are at Convention, and you want to hear more from guests on today’s program. Natalie Douglas and Joe Donaher are presenters.
You can see Natalie present on topics, including treatment for patients with dementia. Joe is presenting on empowering people who stutter. Find details, including timing, at convention dot asha dot org.
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This is ASHA Voices. I’m J.D. Gray.
Speech-language pathologist Joe Donaher says there’s one technique he uses during treatment, and it often gets the same reaction…
They usually look at me like I’m crazy, ‘cause they’ve just met me, and now they’ve spent all their time trying not to stutter, and they’re coming to someone to talk about not stuttering, and within the first 10 minutes, I’m having ‘em stutter on purpose.
Voluntary stuttering with Joe Donaher….and why this counter-intuitive technique can help.
That’s coming up, but first, we’ll be joined by a pair of SLPs who are passionate about using a person-centered approach with people with dementia.
Khayum: “Our society is so always thinking about the future and what’s next, and sometimes for people with dementia, and family members, it’s just about being in that moment and finding joy and happiness in that particular moment and treasuring that, rather than thinking about what’s coming ahead.”
Tips, tech, and success with person-centered care. You’ll want to hear these stories.
That’s coming up on ASHA Voices. I’m J.D. Gray.
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Support for ASHA Voices comes from ASHA Professional Development. Check out our new micro course series on Person-Centered Care for People With Dementia featuring Becky Khayum. You can learn more at ASHA dot org by searching for micro course.
Dementia. The word alone can evoke anxiety, given the toll it can take on families. Because of that, it’s easy to focus on the symptoms, but some are advocating that we shift our thinking on how we treat people with dementia.
By now, we all know the term person-centered care, but for a deeper dive on what it looks like in practice, we’re going to revisit a conversation I had with Becky Khayum and Natalie Douglas in July at ASHA Connect, ASHA’s concurrent conferences on health care, private practice, and schools.
Becky is an adjunct faculty member at Northwestern University, and Natalie on the faculty at Central Michigan University. Both work with people with dementia and their families.
Natalie’s will be the first voice you hear.
NATALIE: We are often trained to look at weaknesses and impairments, and that is part of our job, but I think with the person-centered care approach, we can start to see well who is this person; what makes them tick, how can we… really build upon their strengths and allow them to be a meaningful contributor to the community as opposed to someone who is just receiving care.
Gray: Can you give me a little background on person centered care? Where did this idea come from?
NATALIE: Right. Well actually person-centered care is not a new concept at all. There’s been some history that says that actually Florence Nightingale back in the 1800s recommended that we should look at the person and not just the disease. But I think that it often gets lost in all of the other requirements of what we have to do as health care professionals, that I think sometimes our training without meaning to, an unintentional side effect is we move away from some of our instincts to connect to people as human beings, and that has made person-centered care kinda fall to the wayside and maybe not be seen as skilled as more of a medical model, when really I think the opposite is actually true.
Gray: Could you tell me a little bit more about that? Like what kinda results are people finding?
NATALIE: Well I think we have some evidence to show, for example, implementing the Montessori philosophy, which is a person-centered approach where people are given opportunities to provide meaningful contributions to the community. We’ve seen decreased hospitalization, decreased falls, decreased agitation, decreased use of antipsychotic medications, and other kind of positive health outcomes; increased engagement. So in addition to promoting engagement and positive affect, we actually are starting to see some other health benefits that are important to insurance companies, and to who, people who are doing the reimbursement for a lot of our services.
Gray Let’s talk about when you have a person that you’re wanting to use person centered care with. How do you find what goals to make with them?
Khayum: Sure. So I think a problem sometimes is there is a purpose product mismatch.
Gray: (edit in) Becky Khayum.
Khayum: We’re trained by insurance companies that you have to just administer a standardized test which is very much impairment focused typically. And, then somehow we’re supposed to get goals out of that, right. And so it’s really one of the leaders in our field, Dr. Michelle Bushwau, talks about flipping the rehab model around for this population. So, she has proposed a model where instead of testing them and then try to fix those deficits, instead, we’re flipping it around and interviewing the client and the family and making it client directed. So, if he’s asking the same question day in and day out, or he’s frequently leaving the home and wandering, and we’re getting very worried, we would take their concerns and then write measurable goals using evidence-based approaches to support those goals. And so every goal that we’re formulating is based upon concerns that the individual and their family members have described, not something that we’re deciding they should work on based upon impairments that were identified in a standardized test.
Gray: Sorta changing the focus from what is going wrong to maybe what can be going better.
Douglas: And that’s hard for clinicians, that’s hard for us to do. It’s a whole different orientation of how to really work with people.
Gray: I imagine that there might be some fear in trying to change your approach. Have you noticed that?
BECKY: It’s definitely a culture change. I mean just for example if you think about long term care, right? Typically, when someone moves in, everything’s done for them, right? So, they no longer do their own laundry, or help prepare the meal, help clean up after the meal. And then we wonder why people are having more difficulty with their mobility and having falls. Or maybe they’re becoming agitated just simply out of boredom, because they’re no longer doing the household activities you know that they used to do, and hobbies that they used to do. But I think it’s challenging because that is the culture right now in long term care. This is how it’s done, this is what families expect when they move someone perhaps into long term care, that they’re going to be served their meals, they’re not going to help prepare the meals. They’re not going to help clean, that’s why we’re paying for them to be there, you know. So, it’s really… trying to change this culture of keeping people involved at every level of participation. Whether that may involve housework, right. (Laugh)
Douglas: I think that if we can adopt more of a social model where we modify the environment, and we support people to be more… independent, and have purposeful roles, that we would see a lot better outcomes. And I think that we’re starting to see that more in less medicalized communities, so like assisted living facilities, I think kinda have more of that homey, social model, as opposed to a pure… medical model that we see quite a bit in long term care.
Gray: Natalie, I understand you share advice on person centered health care plans with other teams, other healthcare teams. So could you tell me a little bit about that? How do you approach that?
Douglas: Right. So… what we are trying to work on is really… more from a quality improvement angle, and really kind of honoring the experiences of every certified nursing assistant, every nurse that’s on the floor, all of the people that are working day in and day out to care for people with complex needs from dementia.
Gray: And let’s talk a little bit about that. What are, what are the strategies?
Douglas: Right. So I think some of the biggest strategies is communication. And really opening up honest, authentic communication channels. So, for example, there was more than one, but I’m thinking of one instance in particular where we set up person-centered visual communication aids for a person with dementia, about when nursing was gonna come in to help them get ready to go to their meals. And, we… made these beautiful personalized communication supports, and we hung them in very accessible places. And we were really excited. Well, come to find out, that… having those memory aids in place actually made her agitation worse. (Laugh) But to have that open communication channel for me to come back in and for the nursing assistant to be like “Hey, this is totally not working. What happened? Like let’s revisit this, and brainstorm and try again.” And so I think that anytime we’re implementing a complex, what, what can be a complex approach, in working with someone with dementia who’s really, it’s a moving target, right, ’cause we know it’s a degenerative condition. We have to be constantly planning, doing, studying, and acting. Like, put a plan in place, study it, see if it works. If it doesn’t, try something else.
Khayum: Absolutely, yeah. And I think a lot of speech-language pathologists have indicated that they do have a lot of frustration because they feel like their strategies that they’re working on with someone, especially in long term care, that there is no carryover. They’re not… seeing that, that they’re effective. And the barriers that are there in terms of actually finding consistent caregivers and staff members to train. And then, oh they come the next day, and someone else is there. And so I think as a field we’re, we’re trying to get creative, and there’s a lot of research out there in terms of, how do we train the caregivers? In addition to of course what Natalie was saying, in terms of making sure that we are recognizing that they are the experts, they’re the ones who are with the person every day and making sure that we’re emphasizing that during our interactions, absolutely.
Douglas: It has to be part of the organizational culture, so that it’s not reliant just on one certified nursing assistant, or one speech-language pathologist. This is a philosophy of care that has to have buy-in from the top all the way down.
Gray: Coming up, we’ll continue the conversation with Becky and Natalie from Connect. We’ll talk about how tech can be used in person-centered care, and both guests share successes stories.
Plus, still coming up, we’ll hear from Joe Donaher about voluntary stuttering.
This is ASHA Voices.
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Support for ASHA Voices comes from ASHA Professional Development. Check out our new micro course series on Person-Centered Care for People With Dementia, featuring our guest, Becky Khayum. This series of four courses will help you promote meaningful participation in conversations and life activities for people with dementia. If you want to learn more about this micro course series, go to ASHA dot org and search for micro course.
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Gray: Becky, can you tell me a bit about how technology can be involved in treating a person with Alzheimer’s or other forms of dementia?
Khayum: Sure, absolutely. So, the idea is that we can use technology to help people with dementia. But it needs to be applied to the same person-centered goals, and using evidence- based intervention. So I can just give a, a couple of examples, of, of how this might be used. So, one might be an indirect way of using technology. So that would be using an app such as Pic Collage, or a collage-making app, to find out what terms are important for that person to remember. So actually making a visual aid that has pictures of their grandchildren and family members, their names, the needs that, and printing those out. And the next time they come to visit, perhaps next to each grandchild’s name on that visual aid we’ve written down questions for them and, and things that they might want to ask them about.
Another intervention we might try is called Simulated Presence Treatment, and it’s the idea that we’re taking a video of a loved one, or in some cases we’ve tried with physicians, and we are showing someone a video. We might be able to help to redirect or evoke a certain response or behavior that would help that person be more comfortable, or participate in an activity. So for example, we are trialing in long term care, having a tablet at maybe the nurse’s station, or the front desk, and we have family members create videos where it’s them saying you know, “Bob, I’m so sorry that I’m not here right now. You’re staying in a really nice place called Spring Meadows. All of your room and board is already covered. You’re gonna be helping out with the art lessons here. And, and so if you go now, you could go and work on some art, or look at some old photo albums.” And so it’s redirecting them, but it’s a family member instead of just a staff member trying to redirect them.
Gray: When you think of technology you use in this way, is there anyone that you’ve worked with that jumps out, as a memory?
Khayum: Sure. I can think of… a gentleman who didn’t want to bathe. And so… I think at a, maybe it’s like once every 3 weeks, he would want to bathe. He had more of a frontal temporal dementia. So, just didn’t really like the feel of water, and… an in, and so we had the physician, his neurologist, actually record a video (Laugh) that said, “Hi, I’m your neurologist Dr. So and So. You really do need to take a shower today, otherwise you will develop a rash.” And he was developing a rash, so it was very important. And so we were able to text that video very quickly to his wife, who was able to show him that, and it wasn’t perfect, right, but at least instead of once every 3 weeks, maybe once a week, he would take a shower.
Gray: So I was just wondering if there’s any other memories that you’d wanna share, of people that you’ve encountered, that person-centered care has especially worked for, and that you’ve been able to reach something that they otherwise might not of been able to.
Douglas: Yeah So, one in particular, we had a woman in long term care, who, they were actually looking at different medication options, because they couldn’t figure out what was going on, because she kept wheeling out of her room, and like digging through trashcans. So, like she would wheel out of her room, and then they would find her like in the dining room digging through the trash, which obviously is something people should not be doing. So… we were trying to see like okay, what is goin’ on here? She’s obviously bored, she’s obviously restless. And she was somebody who actually didn’t have a lot of family around, but she had a really close friend, who said, ‘You know she really loves… to write. She was a secretary, and she was constantly writing cards, and, you know, taking notes, and doing all this, all these types of activities.” And this is somebody with pretty severe dementia. but she still kinda maintained an ability to read large print visual cues. So, we kind of incorporated some principles of Montessori-based programing where we made a visual aid that said, “Please help us write these notes for the day,” Or something of that nature. And we framed it and we put it kinda by her bed, with a clipboard and like a steno pad, and I just was like you know, we kinda need some help, writing notes for what’s going on. And it was kinda very vague and open ended. And I said, “Would you be willing to help us with that?” And she, you know kinda nodded and looked at the sign, and looked at the clipboard, and, just kinda took the pen and started writing. And it was not intelligible writing, and it was some drawing, but… her affect totally changed, and we were able to redirect her to that activity instead of the trash. And so, again, it wasn’t like let’s look at the product, right. Like we’re not looking at her notes as a product, but it was just the idea of engaging in a task that was familiar to her, that brought her comfort in something to do. And I think that really made a big difference.
Khayum: Absolutely. Sure, and I, I’ll give a couple of examples of people I’ve worked with who have primary progressive aphasia, which is a type of dementia, where they actually don’t have any memory loss in the early stages. It starts with aphasia, a loss of language, and, and reading and writing. And so, one individual I was working with, her role had always been sending birthday cards to people, or little notecards, and, and just letting them know that, that she’s thinking about them, that she cares. And her writing was so impaired that she could no longer do this anymore. She was actually getting ready to throw away a list of each month, and all of the people that she needed to send cards to that month, and had just kinda given up on being able to do that activity anymore. And we tried making written templates. So her husband would write out exactly what she wanted to say in the card, and so she was able to look directly off of that template and write the message in the card, because she could still do that. She could copy it. It certainly took time and effort, but she was able to write those cards and start sending them again. And so I think for someone who has a neurodegenerative disease where we know it’s getting worse, I think being able to take an activity that helps define them as a person as, in, in a role in life, and saying okay, I can actually go back to doing this activity again, that’s huge. And, and, it, it really (Um-hm) I think is empowering for, instead of just kind of sitting back and letting the disease take its course. Another example would be a, a gentleman who loved, had always been the one to order the food at the drive through in a Steak and Shake, and we did script practice. So over and over again would practice saying the Steak and Shake order, and he ordered for himself and his wife.
Gray: What was the order? (Natalie laughs)
Khayum: Um, I’m tryin’ to remember now. (Laughs) I, I know definitely he had cheeseburger and fries, and I think an iced tea, and, and hopefully some kind of milk shake. That’s probably me though. But, uh…
Douglas: Ha . . .
Khayum: But they would laugh because his wife, um… (Laugh) would sometimes change her order (Laugh) at the last minute after he’d been practicing. But he was so happy because he could go back to making that, that order again, something that he’d given up. Actually another client that I worked with, they were practicing a script I think for Chick-fil-A, and practiced and practiced. Got up to the drive through, and, were… tryin’ to say the order over and over again, and, finally drove up to the next window and it said, oh it’s been closed due to a water main break today. (Laughs)
Douglas: Oh my gosh.
Khayum: Um, so we were saying well, the people inside repairing the water main heard a very nice, uh, script. But anyways, just sharing how I think also finding humor in this in a very tough situation . . .
Douglas: Yes . .
Khayum: I think that’s the part that I love is, um… we’ll, we can, there are moments of laughter and happiness. And, and… our society is so always thinking about the future and what’s what’s next. And sometimes for people with dementia, and family members, it’s just about just being in that moment, and finding joy and happiness in that particular moment, (Mm) and treasuring that, rather than… thinking about what’s coming ahead.
Gray: SLPs Becky Khayum and Natalie Douglas on person-centered healthcare.
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In this conversation, we talked about person-centered care practices. And we talked about how to use those techniques with people with dementia. I want to mention that one of our guests, Becky Khayum, is the speaker for ASHA’s new micro course series on Person-Centered Care for People With Dementia. If you want to learn more about this micro course series, visit asha dot org and search for micro course. You can get practical strategies and tools in as little as 5 minutes.
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It may seem counter-intuitive at first, but our next guest says voluntary stuttering is a tool that can relieve some of the anxiety that can come with a fluency issue.
Joe Donaher wears many hats. He’s a speech-language pathologist, faculty member at the University of Pennsylvania, and program director at the Children’s Hospital of Philadelphia. We met at ASHA Connect to discuss a topic that Joe was presenting on: voluntary stuttering.
Joe says this tool serves a variety of purposes in treatment.
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Donaher: Well, the most common is as a desensitization tool. ’Cause, for so long, people who stutter have fought their stuttering. Okay. So in order for them to feel comfortable to work on it, to talk about it, to even let it out, we often have to reduce that fear and anxiety. So one way to do that is to do? what you fear. So we get them to kind of use the same type of stuttering that was uncontrollable before, and all of a sudden, doing it on purpose, so that they feel more comfortable with it.
Gray : Is this similar to the type of therapy that we see where someone’s afraid of a cave, so they go in a cave?
Donaher: Right. Sharks is the one I always think of, ’cause I like the beach. So, if you’re scared of sharks what do they do? They might give you a book about sharks, and then maybe a stuffed shark that you have to get friendly with, and then you might take a trip to the aquarium, and, and you look through the glass and you see the shark. And then, the next step perhaps is they put you in a pool where there’s some fake sharks, or there’s a shark across the pool from you, and I guess the last step is they, they throw you in the, in the ocean, and you swim out of it. But . . .
Gray: The deep end.
Donaher: Yeah, the deep end. But what it is, is it’s slowly deconditioning that fear, and slowly kind of changing that person’s perspective, and letting them tolerate that moment.
So some people refuse to do it and can’t do it. It’s very difficult. Others do it right from the beginning. Some folks have a really good understanding of what they do when they stutter. Other folks have no idea what their stuttering looks like or sounds like.
Gray: Tell me a little bit about the results. Is there a patient in particular that stands out where the voluntary stuttering really took hold?
Donaher: Yeah. Well, I’ll give you a great example of a guy I’m working with right now. So he’s just about to go to college, and, he had speech therapy all through grade school, and most of the speech therapy was teaching him how to use a technique to stop stuttering. And, if he stuttered, he felt bad about it. So imagine the cognitive effort of dealing with that. The cognitive effort of thinking about what word you wanna avoid, what word you don’t wanna say. And then think about the physical effort, always being uncomfortable, always doing this stuff. So all of a sudden, let the cat out a the bag, and it’s easier. And it might not be emotionally easier at first, because he’s still scared about it.
So what I, what I started talking about, well what happens if he didn’t hide it, you know. And we talk a great deal about that. That you’ve done so much work trying not to stutter. And unfortunately a lot a the things you do trying not to stutter, really messes up your communication. So you might not stutter, but you don’t feel comfortable talking in the way you have to talk, and you don’t feel comfortable socializing in certain ways. So all of a sudden, when you just stutter, it’s a relief to many people.
Gray: What led you to looking at and using voluntary stuttering?
Donaher: Yeah, well, I’m a big fan of Charles Van Riper, okay. And Charles Van Riper, he’s talked about this in the ’50s. And he’s been writing about this, and so have other guys too. But one of the quotes that I love of Charles van Riper, I’m gonna read it here, ’cause I can’t memorize it and do justice to it. “We had long been impressed by the stutterer’s terror of touching the hot stove of stuttering. His need to flee, to avoid, to escape frantically from its unpleasant scorch.” And that’s Charles Van Riper in 1958. If you read that, you cannot help but be impressed with that and wanna learn more.
Gray: How often do we see this technique used?
Donaher: Okay, it’s up to each individual, okay. But obviously the more you do it, the, the more beneficial it is. So, really what’s important is, doing it outside the therapy room, incorporating it into your real life. And what we often do is, it, it’s not necessarily a time; I don’t want you to do it 5 times a day; but we want you to do it when certain things happen. So when you start thinking negatively about your speech, throw out some voluntary stuttering. And if you don’t see any negative reactions, that’s gonna reinforce your confidence. Start doing it when you start doubting yourself. Or when you think everything has to be perfect. And in those times, instead of letting that fear take over, you can start to do something that’s gonna increase your self-confidence.
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Gray:At the end of our conversation, Joe and I discussed SLPs and students using a voluntary stutter to develop a sense of empathy for those who stutter…
Donaher: Well as a form of empathy, I think it’s interesting. So if you pick and choose when you stutter, that’s not the same thing, ‘’cause for someone who stutters, they don’t know when they’re gonna stutter. So the analogy I love about this is like walking on a frozen pond. You never quite know when it’s gonna crack. So if I was just walking down the street, I’d walk one way, but if I was asked to walk across a frozen pond, I’d be walking differently. Because the first time on the street, my goal is to walk down the street. But on the frozen pond, my goal is not to fall in the pond. So when that’s my goal, I walk less efficiently. So if my goal is to not stutter, I may not be communicating efficiently. If my goal is to communicate efficiently, then it doesn’t matter whether or not I stutter to do that.1906Revision
Gray: Joe Donaher is a speech-language pathologist, faculty member at the university of Pennsylvania, program director at the Children’s Hospital of Philadelphia, and a voluntary stuttering expert.
If you’re listening to this from the 2019 ASHA Convention in Orlando, you can see presentations from Joe Donaher and Natalie Douglas. Look up details about those presentations at convention-dot-asha-dot-org.
ASHA Voices is produced by the American Speech-Language-Hearing Association and comes from the team behind the ASHA Leader magazine.
Support for ASHA Voices comes from ASHA Professional Development. You can check out Becky Khayum’s micro course series on Person-Centered Care for People With Dementia. Learn more at ASHA dot org by searching for micro course.
Production assistance comes from Pamela Lorence. I’m J.D. Gray, and this is ASHA Voices.
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Next time on ASHA Voices …
We take a look at the future of work. From telepractice to soft skills to self-fitted hearing devices, we talk about how your job may change.
Next time on ASHA Voices.