How to Assess Pain in Nonverbal Dementia Patients
How do you know a resident with dementia is in pain if they can’t speak? Too often, pain goes untreated because staff miss the signs. Proper assessment tools can change that. In this week’s episode, nursing home abuse lawyer Rob Schenk welcomes guest Nicole Dawson to talk about pain assessment tools for nonverbal residents with dementia.
Dawson:
So often we call them behaviors related to dementia when it really is pain. And if we can manage that pain better we would see such a reduction in behaviors and where we might be able to do that better. But the assessing, like you said, I think is the first step.
Intro
Schenk:
Hey out there. Welcome back to the Nursing Home Abuse podcast. My name is Rob. I’ll be your host for this episode. Today we are talking about pain. Assessment tools that can be used for nonverbal or dementia. Lemme do that again. 3, 2, 1. Hey, out there folks. Welcome back to the Nursing Home Abuse podcast.
My name is Rob. I’ll be your host for this episode. Today we are talking about pain assessment tools for nonverbal nursing home residents. How we can parse out. Certain behaviors that are related to pain versus being related to the progress of the disease, but we’re certainly not having that conversation.
Alone. We had the fantastic Dr. Nicole Dawson on to walk us through this process.
Schenk:
Pain assessment tools for nonverbal residents, but we’re not having that conversation alone. We have the fantastic Dr. Nicole Dawson on Dr. Dawson. Pt PhD is an associate professor at the University of Central Florida and a director of the Alive Lab, a board certified geriatric physical therapist, amaretti, how do I say that?
Amaras. She’s really smart with 20 years of experience, she researches non-pharmacological interventions for adults with chronic disease and dementia. Dr. Dawson has received national recognition for her academic and clinical contributions and leads, golden age consultants providing education and training on aging and geriatric rehabilitation.
We’re so happy to have her on the show. Dr. Dawson, welcome to the show. Hi Rob. Thanks for having me. I appreciate it. So I think for me.
How can staff tell the difference between pain behaviors and dementia-related behaviors?
The first question that I would have for you is if we have a long-term care resident who is in care, whose care plan for pain control, pain management, but also is cognitively impaired, has dementia, how does that nursing staff know the difference between baseline cognitive behaviors versus behaviors that are caused by the pain?
Dawson:
I think that is a great question and it’s one that we’re actually trying to figure out. ’cause research with this patient population you can imagine is a little bit challenging just because of their ability to tell us exactly what is going on inside. I always, we always chuckled you, as a healthcare provider, you wanna have these superpowers.
And one of mine is I would love to be able to get into my patient’s bodies and feel what they’re feeling. It would just make me such. I think it would just make life so much easier, but we can’t, so we have to rely on what we know. And I think your question is a good one because, we get frustrated as healthcare providers, as families because we think that our loved one or our patient is in distress because of these behaviors.
I think. What we need to understand is the disease process itself. And what I’ve come to find is that I think most healthcare providers, even families and attorneys, don’t really have a great understanding of the disease and what we know. Alzheimer’s disease is probably the most common form of an irreversible dementia that we see in behaviors.
These neuropsych behaviors, they don’t come out. Because of the disease for a really long time. So when we’re seeing them early and in the moderate stage, it usually is because of something else. So I typically will tell folks it’s usually an unmet need, and that need could be pain, and so they’re not always able to tell us what’s going on, but it is something that we need to assess.
Long-term care research explores behavioral and cognitive decline on the impact of preventive health measures in elderly populations among older adults.
Are they having pain? And then there’s different ways that we can look at whether or not they’re having pain. And then if there, if we can rule out, if you will, that there is no pain, then we might look to see that this is some other type of neuropsych behavior, maybe related to depression or frustration.
Or something going on in the brain, but I think instead of assuming that it’s because of the disease, we need to assume it’s from something else. Rule that out and pain is one of those things. And then maybe say it’s a neuropsych behavior because of the disease.
Schenk:
That makes sense to have a default position to be, let’s rule pain out first because clearly that yes.
We want to make sure that somebody’s, as pain-free as possible. What are some of those more common, in your experience, what are some of the more common. Behaviors that represent pain in nonverbal, cognitively impaired individuals?
Dawson:
I, again, another great question. I vocalize I think is one, and sometimes it’s at, I think being able to determine is it at rest?
Are we seeing these behaviors at rest or are we seeing them with movement change of position, so if we’re moving someone and they’re moaning and. Grimacing and vocalizing, then it’s probably pain, but also I’m sure you’re aware and I’m sure everybody that’s listening is aware that we don’t always position.
Pain assessment inconsistencies are examined on the impact of preventive health measures in elderly populations in residents with communication impairments.
Folks in our nursing homes in the best, most comfortable way, they’ve been laying in bed for a few hours or they’re sitting in their chair and they’re really scooting down. And so also looking at sometimes it’s common sense. Rob, would I be comfortable, in the position that they’re in and.
So sometimes we think about an 85-year-old patient who, maybe has some arthritis or has some tightness or has some changes in their skin. And so the position that they’re in, they’re not comfortable. And so can we shift them, change position? Does that change some of those vocalizations? Those are some of the behaviors that we see Also withdrawing from not wanting to move.
If people are hurting, they might. Try to stay still because moving their leg or moving their neck or moving their back, it’s not comfortable.
Caregiver recognition of discomfort is evaluated on the impact of preventive health measures in elderly populations in dementia populations.
How do tools like PAINAD or PACSLAC work in a long-term care setting?
Schenk:
What are some of the more common assessment tools that a nursing home might put in place? I’m sure there’s many of them. What are some of the more common ones that you’ve seen in your experience?
Dawson:
So probably the most common one that I’ve seen, we call it the pain ad. Or the different people call it different things. That’s just what I call it. And it’s a checklist. And you score it, so typically when we do our visual analog scale, or. Verbal scale, it’s what’s your pain level from zero to 10?
So what I like about the pain ad is it actually scores it from zero to 10. And so you can give it that zero to 10 feeling just by looking at behaviors. So you’re gonna see are they moaning, are they vocalizing, are they trying to pull away, are they grimacing? These types of things. And you score that.
So I think that’s one of the more common ones that I see. And like I said, there’s. Tons of others.
Comparative evaluation tools for pain observation are discussed on the impact of preventive health measures in elderly populations in nonverbal patients.
How can nursing home staff decide which pain assessment tool to use?
Schenk:
Now how important I understand the concept of if a person is in an uncomfortable position, maybe they vocalize if you try to move them or they don’t wanna move. Yeah.
But talk about what are some of the others. Behaviors are some other characteristics of pain. So for example, I see the pain id maybe you look at how fast they’re breathing, for example.
Dawson:
Yeah. Yeah. So we have some physiological responses to pain, so we’ll see increases in heart rate. You’ll see an increase in blood pressure if the pain gets really.
Significant will actually have what’s called a diaphoretic response. So in this actually autonomic nervous system response they’ll start sweating. They might actually lose their urine. There’s different things that we can see that if they’re insignificant amounts of pain, that you’ll see some physiological responses.
So the other things we’ve been talking about, the moaning. The grimacing, yeah. That’s more them trying to tell you that it’s hurting, but the body will also tell us that they’re in pain.
Clinical documentation often relies on standardized tools like the Bates-Jensen Wound Assessment Scale to monitor deterioration.
Schenk:
That makes absolute sense. So in your experience, does the nursing home typically have one pain assessment tool? Or is it the pain assessment tool? Depends on the resident.
Dawson:
So I think when we’re talking about cognitively impaired folks, typically I have seen that a nursing home will adopt. A protocol for everyone to follow. Typically our visual analog or our, numeric pain rating scale is still the most common.
For a visual explanation, this video answers what the Bates-Jensen Wound Assessment Scale is and how it’s used.
And I do think that because of our lack of knowledge with folks that have cognitive impairment, we try to use it on. People that we shouldn’t be using it on. You can also use it sometimes if they can point or respond. The face scale is also validated in folks with dementia. But again, if they’re nonverbal and they’re more severe.
I don’t see the pain and use it often. I’ll be honest with you, Rob, but I do see people document the behaviors, but they won’t actually use the assessment tool. And so I, what I mean, to answer your question, I think people try to adopt a single one across nursing homes, but I don’t see the pain and used very much in my, in the practice that I did.
And now, my medical record review and different things.
Are these tools being used consistently across nursing homes?
Schenk:
I see. So I guess if, from what I understand you saying, nursing homes are basically developing their own protocols, not necessarily using a specific tool like the pain aid.
Dawson:
Yeah. And yeah, and I think again, it comes back to, when I go out and I teach to nurses and therapists and other people, it’s.
It’s a lack of knowledge. And so I would love to see people using this more. And they try, because again, you’ll see them saying, no pain behaviors noted. Or they’ll say, patient is grimacing, or, they’re withdrawing from movement because of pain, but they’re not actually assessing it.
I think it would behoove them to do so.
Families may have legal options when supervision fails, as explained in whether you can sue a nursing home for letting a loved one walk out unsupervised.
What improvements or innovations are needed in pain assessment tools for dementia care?
Schenk:
So I guess that leads to, for example, we have, like with pressure injury risk assessments, we have the Braden scale which is pretty much universal, right. And so we can Yes. Accrue, we can accrue data. We can see okay, maybe we need to fix this or whatever.
But I feel like from what you’ve described, because there’s no real one universal. Pain assessment tool for nonverbal residents it’s tough to figure out what’s working, what’s not working.
Dawson:
And that’s what the research shows. Like when you look at the systematic reviews and different things, it basically says exactly what you said is we need to find a common gold standard pain assessment for this patient population because we don’t have one.
So I think at the last look that there’s probably 16 different ones. Again, I think there’s one, the PAC Slack is common, but that, it’s good, but it’s just a check bot. It’s got a lot, it’s just a checklist and it’s got a lot. So it can feel overwhelming, which is also why I like the pain ad.
Practical caregiving strategies are discussed in Episode 72: Caring for Nursing Home Residents with Dementia.
’cause you get a nice score and it mimics this zero to 10 pain scale. But again, it’s not the universally accepted measure and, so I agree. I wish that we would be able to really adopt one and do more research on it, because then I think once we’ve adopted that, then we can move into how we are doing with pain management because.
I don’t think we’re doing very well with this patient population because it goes back to your first question. I think so often we call them behaviors related to dementia when it really is pain, and if we can manage that pain better I think that we would see such a reduction in behaviors and there’s lots of reasons and we can certainly talk about it.
If we have time about some of that pain management and where we might be able to do that better. But the assessing, like you said, I think is the first step.
Learn how specialized units function in What Is a Memory Care Unit in a Nursing Home?
Schenk:
Okay. So that’s a good point. So let’s say that we are in a facility that uses pain ad okay? And you get a number. What next? What are the interventions? What are the things that we’re gonna do?
Dawson:
What the research is showing is that typically, just like our healthcare field does right now, we rely on pharmacological management, right? We give them drugs, we give ’em a pain pill. We give ’em the, the problem with dementia is.
When you put a patient who has Alzheimer’s disease on a narcotic, it’s not a great idea all the time. And we overmedicate for pain so frequently instead of just trying some Tylenol or to seeing if that will help. The other thing we don’t do enough of is non-pharmacological interventions.
Simple things like positioning and turning and, can we get physical occupational therapy involved? To see if we can make some modifications to their wheelchair to help them be more comfortable. Can we actually get them on a stretching program? Can we get them walking a little bit more? Can we do things to help them move?
Legal protections are explored in Dementia Care and Residents’ Rights – Episode 127.
Because movement is probably one of the best things we can do for pain in this patient population. ‘Cause most of their pain is because they’re stiff, whether it’s in their joints or in their muscles. Think about it again, if you laid. On your couch or in your bed for eight or 10 hours, you’d probably be a little uncomfortable too.
Or if you sat in the same position and didn’t reposition yourself for two or three hours, so sometimes getting them up and moving is really all we need to do. So I always say geriatrics takes a village and dementia. Certainly takes a village to really be able to care for this patient population.
And I think, nursing has shouldered the burden, I think, on their own. And I would love to see them reach out to their colleagues a little more and, get pt, get OT involved, get activities involved, get other people involved to get these folks out of bed and moving. And I think we’d see some pretty big changes.
Behavioral care approaches beyond medication are covered in Non-Drug Interventions for Dementia.
Schenk:
That makes so much sense. Like rather than the default be the pill pain pill of or an opi, an opioid. Okay. Let’s see. Like, all right, if we just make them more comfortable, is that gonna do it like that, that just makes more sense that you run down a different checklist before ultimately deciding on a pharmacological.
Intervention, before I lose this train of thought, in your research, in your experience, what’s the, what is the percentage roughly of long-term care residents that ex, that are experiencing pain that needs to be managed
Dawson:
A lot. I would say, and it’s not even my, like it’s, they’re, again, they’re systematic reviews, meta-analyses. At least 60 to 70%.
Schenk:
Yeah. So this is a huge chunk of people.
Dawson:
It is, the problem that we see is giving them a pill fast. It’s quick. I can pop a pill, they can be good. Doing all the things that we just talked about takes time. It takes collaboration of care, and I’ve come to find that’s probably one of the biggest barriers.
However, what I try when I go out and I teach and I talk to folks is. The juice is definitely worth the squeeze. I’m gonna steal that from a colleague of mine, even though it takes a minute to do this collaboration in the long term, the patient is going to reduce behaviors, they’re gonna be more comfortable.
You’ll probably see reductions in pressure, sores, contractures, other things. So putting in a little bit of work upfront, you definitely get a pay. Down the road because the patient’s just happier, more comfortable, they’re going to decline less quickly. Now, what we don’t have, Rob, is the research to back up what I just said, because we’re not do, we’re not there yet, but I could just tell you from my 20 some years of experience.
It just makes sense that if people are up and they’re moving and they’re comfortable, they’re going to do better. They’re gonna be happier, they’re gonna have blood flow they’re not gonna contract. Their bedsores are gonna be less. So all of the benefits of reducing just sitting and laying and doing these things and getting this collaborative approach is not only gonna help pain, but it’s gonna help so many other things.
And let me make one other comment that I saw so much when I was practicing it. The default is also when we’re giving Tylenol or things, is we do what we call PRN, right? We give it as needed. So you’d see that Tylenol PRN, for pain. A patient with dementia is never gonna ask for PRN pain meds.
A comprehensive overview of standards and failures appears in Understanding Dementia Care in Nursing Homes.
They’re just not. And what we would talk about with the nursing staff is, can we get the Tylenol scheduled? And so that way we’re staying in front of pain if we think that we need some. Tylenol doesn’t need to necessarily be an opioid per se, but let’s see if we can schedule some Tylenol with that patient.
If we know that they have chronic arthritis, chronic back pain, if they have a diagnosis, that would require them, to have some pharmacological pain management. Let’s not PRN. This in our patients with dementia, especially when they’re nonverbal, it’s not like they’re gonna hit the button and say, I’m having pain.
And so now if they haven’t had pain meds for three days. We’re so far behind the curve, of course they’re in pain. So if we can get ahead of it, and schedule that, we also would see in my practice that those patients were much more comfortable.
What documentation practices support better pain detection and follow-up?
Schenk:
You mentioned it takes a village for this, and I agree that seems to be a through line on this podcast of staffing.
Dawson:
Yes.
Schenk:
In the last couple minutes, Dr. Dawson, can you talk to us about the importance, speaking of the village, the importance of continuity of care with respect to documentation? What role does documentation play in being able to make the determination? Let’s do the Tylenol for example.
Dawson:
I think it’s critical, Rob, and, coming, my discipline, I’m a physical therapist and in nursing homes, one of the biggest frustrations I would have is pt.
Even if they’re in-house, they don’t share the same documentation system. As the nursing staff, they can’t see each other’s documentation. And so if I’m writing something in my therapy notes about pain or that, we try a modality, a non-pharmacological intervention, or that we want to do, we try a special cushion or we did these things, we have to go and figure out a way to.
Report that out to the nursing staff and then get the nursing staff to get that into their documentation. Because they don’t talk, usually those systems don’t talk to each other. So it’s a whole level of training now that we have to do as the therapists and get to get that down to the nursing assistants and, nobody reads the documentation that’s in the electronic medical records. And so I, when you talk to nursing, they rely on what we still have: paper, pencil, flow sheets. And so the continuity of documentation is so important, but it doesn’t exist. Like when I’m doing medical record reviews. Typically all I get are the progress notes from nursing.
I’m like that’s not where the meat and potatoes of the day-to-day care is from the nursing assistants. That’s in a separate document, and when you’re talking about eating and drinking and the med pass, that’s in a different documentation system. And so we do need to figure out a way. To communicate this day-to-day, things between shifts and the idiosyncrasies of dementia that are challenging and trying to maintain continuity of staff.
‘Cause you’ll see nursing assistants. They change so frequently, and with a patient with dementia who’s nonverbal. When you, if you’ve, I’m sure you have talked to nursing staff, they’re like Mrs. Jones, here’s what she does when she’s in pain. How do you, it, how do you share those idiosyncrasies?
And talking about families, it’s so important to rely on family. Because, you can ask a daughter, how does your mom show us that she’s in pain? But again, where does a facility document that information, that crucial information? It’s nowhere in the chart. It’s in your head and you just know it.
So I agree with you, keeping some type of notebook for people to be able to flip through it. It’s a continual difficulty that we definitely have with this group.
Early clinical findings highlight challenges on the impact of preventive health measures in elderly populations related to pain recognition and care delivery.
Schenk:
Very well said. Dr. Dawson, we very much appreciate you coming on the show and sharing your knowledge with us today.
Dawson:
Thanks Rob. I appreciate it.
Schenk:
Folks, I hope you found this episode educational. If you have an idea for a topic that you would like for me to discuss, please let me know. If you have an idea for someone that you would like for me to talk to, please let me know that as well. Also, be sure to enter to win the Nursing Home Abuse podcast.
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We’ll see you next time.
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