What If Pain Could Speak: Recognizing and Alleviating Hidden Pain in Dementia

What if the “behavior problems” we see in people living with dementia are actually signs of pain?

Host Dana Rampolla speaks with Barbara Resnick, PhD, RN, CRNP, FAAN, FAANP, Distinguished University Professor and associate dean of research at the University of Maryland School of Nursing who is an expert in aging and long-term care, about how pain often goes unrecognized in people with dementia. Because they may struggle to communicate discomfort, pain can show up as agitation, withdrawal, resistance to care, or sudden changes in appetite and engagement. These behaviors are sometimes misunderstood and treated with sedating medications instead of addressing the root cause.

Resnick explains what caregivers and clinicians should watch for, from facial expressions and lashing out to subtle shifts in participation and mood. 

Health care professionals can learn more about pain management in long-term care settings in this Clinical Practice Guide co-authored by Resnick: https://www.jamda.com/article/S1525-8610(21)00911-7/fulltext

Chapters
00:00 Pain Without Words
00:28 Meet Dr. Resnick
02:36 Why Pain Gets Missed
06:15 The Vicious Cycle
07:28 Signs to Watch For
08:55 Find the Root Cause
10:40 Guidelines in Nursing Homes
11:37 Non-Drug Pain Relief
15:36 Questions for Care Teams
17:30 Key Takeaways
19:06 Why She Does This Work
20:55 NIH Study in Practice
22:56 Closing Credits

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Transcript

Dana Rampolla: 0:00

When someone is in pain, we usually expect them to say, so just tell me what's wrong. But sometimes they can't do that. And what happens when they can't? For people living with dementia, pain doesn't always show up the way we expect either. Instead of saying, this hurts. Someone might become agitated, they might become withdrawn or even resistant to care, and those behaviors can easily be mistaken for something else. And then when that happens, the pain can go untreated. Our guest today is working to change that. Dr. Barbara Resnick is a professor at the University of Maryland School of Nursing and an internationally recognized expert in aging and long-term care. Her research supported by the National Institutes of Health focuses on improving quality of life for older adults, and that includes helping nursing home staff better recognize and manage pain in residents with dementia. Her work is helping caregivers look beyond behavior, identify root causes of discomfort, and use safer approaches to relieve pain. Sometimes without relying on medications, that can also increase confusion and fall risk. Join me as I chat with Dr. Barbara Resnick about what pain really looks like in people with dementia and how recognizing it differently could dramatically improve care. I'm Dana Rampolla and this is the UMB Pulse.

Jena Frick: 1:26

You are listening to the heartbeat of the University of Maryland, Baltimore, the UMB Pulse.

Dana Rampolla: 1:44

Dr. Resnick. Thank you so much for joining us today on the UMB Pulse Podcast.

Barbara Resnick: 1:50

It's a pleasure to be here. Thank you.

Dana Rampolla: 1:53

We are excited to welcome you on the UMB Pulse today because you are also featured in our Breakthroughs Can't Wait campaign, which is a communications campaign we've been running for some time here at the University of Maryland Baltimore, featuring researchers and why research matters, why funding for research matters, and I personally find your topic of research so interesting. Just to jump right in, you were. Researching why, um, and how people react to pain, especially when there are people who are going, you know, experiencing dementia. So let's talk a little bit about how that's why that's important and why it's not always straightforward. Oftentimes people with dementia may not be able to communicate to us what's going on when we're used to hearing somebody just simply say, it hurts, or, I have pain in my knee, can you help me? So how does this affect. People who aren't able to explain things in such simple words.

Barbara Resnick: 2:54

So first of all, it's critically important because it's so often missed and you're absolutely correct. Um, many times it's missed because people can't communicate it. There's also an assumption that everybody older has pain, so no big deal. So I just ignore it. So there is that issue. Um, but the other really concerning thing. About pain and people living with dementia is they express it in ways that get interpreted as other problems. For example, if you are impaired, you can't express the pain, but it hurts, what would you do? You're going to hit somebody if they move a joint and then it hurts. The reaction is to go like that. And so it often gets interpreted as behavioral symptoms. It gets treated maybe as a behavioral symptom rather than looking for the underlying cause of the pain and treating that or treating the pain appropriately.

Dana Rampolla: 4:06

Well, and you've spent a lot of time studying this. Was there a moment in your work when you realized just how often people who have dementia ex their, their pain experiences being missed the way you just described?

Barbara Resnick: 4:18

Yeah. Well, it, it's hard to. Tell that for sure because we would have to do some additional testing to really know, but I would say it's at least 50% and it's really interesting. If you look at studies about pain and people living with dementia, the percentage of pain runs anywhere from 9%. To 88% of people being in pain. Now, these are different samples, but still you see that big range really raises concerns, and I have found in my own work that pain is not recognized. Not documented. Not assessed, and not managed.

Dana Rampolla: 5:05

And you just mentioned how behaviors like being irritable or hitting someone can be signs of pain, and that's something that people may not think of immediately. Why do you think those signals get misunderstood so often?

Barbara Resnick: 5:19

Well, because they're often considered as signs of dementia. They're called behavioral symptoms associated with dementia. Sometimes other terms are used. And so it's not unusual to see that behavior just happen. Uh, maybe, I mean, think about it yourself. Even if you're not having pain, somebody came and started taking your clothes off, you might resist them. You might hit them. It could be pain 'cause it hurts when you got moved, but it also could just be, uh, confused with a behavioral symptom. So it is hard to differentiate versus when somebody just out and out says, I have pain in my arm or my shoulder. When you move it

Dana Rampolla: 6:07

right,

Barbara Resnick: 6:07

stop. We're so lucky, right? We're not so lucky when working with people who are living with dementia.

Dana Rampolla: 6:15

And when that pain isn't recognized in a person with dementia, what can that mean for their day-to-day health and their quality of life?

Barbara Resnick: 6:23

Well, it certainly decreases anybody's quality of life when you're hurt, but it also becomes a vicious cycle where somebody's in pain, they move less, there's less function, a current, a continual decline in function. More pain. And the other thing we can see is more behavioral symptoms, which is really a concern because then you go down this other path of people trying to treat behavioral symptoms, which may be with drugs that are sedating and uh, other problems.

Dana Rampolla: 7:00

And

Barbara Resnick: 7:00

then it

Dana Rampolla: 7:01

cause other problems.

Barbara Resnick: 7:02

Right? Exactly. Exactly.

Dana Rampolla: 7:05

Hmm. I think back when I was in college, my grandmother lived with us for a, a long period of time. She had Alzheimer's and then she wound up, you know, for the end of her life, being in a nursing home. And it makes me a little nervous because I wonder if we understood some of the signs that maybe she was exhibiting that she could have been in pain when we just took it for the way you just described. So what, what are signs that you would tell people to look for if they have a loved one?

Barbara Resnick: 7:34

So some things that we commonly see. First of all, it's facial expressions and everybody's really a little different, but when you have pain, your face does something usually. So facial expressions and not ignoring them are really important. Um, iveness to care is a very common response to pain. What would anyone do? It hurts. I'm gonna lash out at you, or I'm gonna pull back. Oh. Um, some things might be, uh, hitting, kicking, biting, screaming, those types of things, particularly when they're associated with maybe a movement versus the person just lying there. Some people withdraw into themselves when they have pain to cope, so it might be just curled up in a ball. If you touch the person, you'll see some of those other, they might again hit lash out. You can see a decrease in appetite, decrease willingness to engage in any activities. All of those could be signs and symptoms of pain.

Dana Rampolla: 8:49

Wow. There are lots of different things to look for and it's hard when someone can't really explain. And one thing that stood out to me in your research is that sometimes the cause of the pain could be something very simple, like their nails being too long is an irritant to them, or maybe they have a small physical discomfort that isn't necessarily a pain reaction. So why is identifying the root cause such an important part of the process?

Barbara Resnick: 9:15

Well, first of all, this is probably one of the biggest mixed missed activities around pain. It is not assessed comprehensively and diagnosed and the underlying treatment. Doesn't happen. If you treat the underlying problem, you're gonna help the pain without giving the person drugs or, I mean, non-pharmacological interventions are terrific, but they also take time. It might not be necessary if you cut the nails that are hurting. Um, if you identify, sometimes it's a pressure sore. The person might be able to even point to the area, but nobody noted it. Nobody found it. Sometimes it may be a really important acute problem. Um, so looking for that cause is critical, but it requires a comprehensive, really, history is sometimes hard to get in these people, but you could do a comprehensive exam. And identify the pain. The majority of the pain is often positioning. If you lay with your head like this or like this and just repositioning, people can make a difference. So it's critical to look for that cause at least.

Dana Rampolla: 10:39

That's a great point. And you're helping nursing homes put updated national pain management guidelines into place, correct?

Barbara Resnick: 10:46

Correct.

Dana Rampolla: 10:48

And in in simple terms, what are those guidelines encouraging caregivers to maybe do differently? You said to give a comprehensive report, but what specifically would that mean?

Barbara Resnick: 10:57

So it, it really takes the approach of assessing people for pain, looking for the underlying problem, treating the underlying problem, and treating the pain first with non-pharmacological interventions. And then if those do not alleviate the pain, then adding pharmacological appropriate pharmacological interventions. And so we use a lot of. Innovative non-pharmacological approaches, particularly in people wi living with dementia because the pharmacologic agents can cause significant side effects.

Dana Rampolla: 11:37

So is that an example that you just gave where maybe you would try to turn someone over or sit them up, something like that? Or are there other types of things?

Barbara Resnick: 11:46

Absolutely. Positioning and physical activity. Are probably our most common and most effective non-pharmacological approaches. And think about it yourself. If you have flu and you lay in bed for a day, you ache like heck when you get up? How do you think it feels day after day for these people lying in bed Positioning is critical. So we do do a lot of that to help relieve really vague kind of chronic pain, but it can be bothersome. Um, and then there's many other non-pharmacological approaches. We use everything from heat, ice, um, distraction is a really big one as well. And other, other techniques.

Dana Rampolla: 12:38

Barbara, I feel that way sitting in my chair all day. Exactly. I think I need to change position or get an ice pack.

Barbara Resnick: 12:46

Get up. No. Get up and take a walk.

Dana Rampolla: 12:48

Right, right.

Barbara Resnick: 12:49

Get up and take a walk.

Dana Rampolla: 12:51

if we can get people to widely adopt these, these guidelines and these um, actions, do you think that it will change the care experience for someone living with dementia?

Barbara Resnick: 13:02

I think it can make a major difference and as we, um, implement the guidelines, we're not asking staff to do anything that they shouldn't be doing already or anything that can't, uh, be incorporated into routine care. So it's not hard to do these. And these are all really things that are required in nursing home care. Based on, um, state and federal requirements.

Dana Rampolla: 13:35

Another thing that I remember reading you mentioning, just going back to the non-invasive type, um, care you had talked about, like having conversations with, with people maybe bringing up happy memories. If they ha if they have the ability to recall, say from the past, do you think that can actually be a simple way to help someone? You know, kind of focus on something different, like kind of like moving their body, moving their brain a little bit too.

Barbara Resnick: 14:04

Well, it's distraction is great. And what do we all do when we have pain? You try and distract yourself. You'll read a book, you listen to a book you watch, tell you do something to distract. So those conversations. Can be distracting. They take your mind off the pain. The other thing that's very interesting from a physiological perspective is even just being kind, which is part of that conversation. It's a more positive care interaction and being kind causes a change in our brains and the neuro neurological circuitry. So that it actually decreases pain. So that's another but more, it gets into some of the physiological reasons why this works, but it works and it doesn't take a staff member any more time to be kind when you're working with somebody. Just talking with them and distracting them can help you get through that bath. Without causing pain versus just approaching somebody and moving joints. That hurt.

Dana Rampolla: 15:24

Yeah, I completely agree. Um, just letting them feel like they matter and that you care about what they're saying, even if they're telling you that story for the 10th time.

Barbara Resnick: 15:35

Mm-hmm.

Dana Rampolla: 15:36

For someone listening who has a parent or maybe a grandparent in long-term care, is there a question that they should be asking caregivers when it comes to pain management?

Barbara Resnick: 15:46

I, I think it's asking a, number one, have they seen any indication of pain? It just raises the issue, you know? Have you seen, my mom tends to, uh, do this. If she has pain, she'll bring up her legs and curl up into a ball. They, they can ask about that. Um, and then I think it's always important to ask about, have you been getting mom outta bed? Um, moving, depending on what, hi mom or dad's or whoever's underlying capability is, if they can walk, have they been walking? You know, just finding out. If they've been doing those things or if there's any change in behavior because change in behavior might indicate pain. Also, things like, you know, are they eating as they used to? Are they going to activities, those types of things.

Dana Rampolla: 16:43

And what about for the person who may be a caregiver still in the home for a loved one? Can they do anything that would make a big difference in the comfort or the same types of things?

Barbara Resnick: 16:52

I, I would say it's the same types of things. Of course, they have the opportunity of knowing that person. Even better. And so they should, because they're only taking care of one person, hopefully. Um, and even you see the same thing in small assisted livings because you, you really get to know that small group of patients. So you're looking for changes, facial expressions, but changes in behavior. Someone who always participated in a bath now is resisting you. That might indicate there's pain there. So you're looking for change.

Dana Rampolla: 17:29

Okay. Okay. And before we go, what's a takeaway that you hope listeners remember about pain and dementia care?

Barbara Resnick: 17:37

Well, I, I think the important thing is to think about it always, that it's possible that it's there and to look for it, to assess for the cause. Why might you be resisting me today? What's hurting? Is your shoulder warm? Is there something going on there to, to be a detective when it comes to looking for pain and then not just ignoring it and assuming it's normal, treating the cost if you can, and then implementing the many non-pharmacological interventions positioning. Um. Distraction movement, hot, cold, anything you can do to relieve that pain. There's some of course alternative treatments like acupuncture that work for people. Again, those have a cost associated and, um, are more difficult to access, particularly for people in nursing homes. But to assess, treat, and manage.

Dana Rampolla: 18:48

That's great advice and lots of tips I might not have even thought of, especially when I was younger and it was my grandmother. So I hope that helps one of our listeners or many of our listeners, um, figure out just how to care for their loved ones, whether they are in an at home situation or in a nursing home, or. Other care facility. Barbara, I'm curious, before we sign off, what, what prompted you to go into this type of research and had you done other research prior to this that led to it?

Barbara Resnick: 19:18

Yeah, so my entire career has been working in, well with older adults, but mostly in long-term care communities. Ever since I was 16, I started as a nursing assistant. Oh, wow. Even at 16, I was taking people out of their, then what were referred to as Houdini Vest. Um, they were restraints and walking people to optimize function, relieve pain, and improve quality of life. And I've spent my entire career focused on that, um, particularly on optimizing function and physical activity. Well. Function and physical activity don't happen if somebody's in pain. And so it's really the combination of those two things that drives me to help people with pain at this, you know, at this time. And it's also, I've done a lot of work to help communities implement, um, different types of care approaches, so they become routine care.

Dana Rampolla: 20:33

Thank you for all that you do, and thank you for sharing that with us. And thank you, you know, just for talking in a way that our listeners will be able to absorb and understand and hopefully put into action all of the tips and tricks and advice that you've given. Thank you Barbara again, and have a great day.

Barbara Resnick: 20:51

Thank you.

Charles Schelle: 20:55

After the interview, Dr. Resnick shared more about how the research works in practice through an NIH funded study. Her team works directly with nursing home staff. A nurse interventionist does rounds with caregivers, helps them evaluate residents for pain and develops personalized care plans. The team then reviews electronic health records to see whether pain is being properly assessed, documented and treated, helping ensure residents receive care tailored to their needs.

Barbara Resnick: 21:27

This is an NIH study and you have a team. It's a theoretically based approach and, um, we have a nurse interventionist that works with the staff using a four step project. We have a staff, we have a stakeholder team, but, uh, the research n Nurse interventionist works with the staff to evaluate, literally does rounds evaluates um, residents for pain and works with them to comprehensively assess it, develop a personalized, uh, care plan, and then implement that care plan around pain. Then what we do is we look at the patient's electronic health record to see if there's been improvements in the way pain is assessed. And, well documented to begin with, assess documented for the underlying cause, and then whether appropriate treatments that are personalized for that person. So we, you know, it's a, it's a comprehensive intervention that way, but it's really for the staff within the community. The staff within the community to, um, implement rather than, you know, it's not us doing the intervention, it's working with them. It's more of an implementation study. The UMB Pulse with Charles Schelle and Dana Rampolla is a UMB Office of Communications and Public Affairs production edited by Charles Schelle, marketing by Dana Rampolla.