Supervisions in Pain
Episode 4: "How do I educate?" - Pt 2
In this episode, Alex and James sit down with neuropsychologist Dr Clare Kempnich to navigate the subtleties of delivering pain education to clients with cognitive impairment. While tailoring pain education is challenging on its own, layering cognitive deficits into the picture requires a much deeper, more flexible clinical approach.
Through two distinct client case studies, Alex, James, and Clare unpack how varying forms of cognitive impairment impact the pain experience. Clare reflects on each treatment plan, offering expert insights on moving past standard approaches to meet clients where they are. Stick around to learn practical ways to adapt your clinical communication and make your pain education more accessible and effective.
The Evidence Base:
- Kiosses, D. N., Ravdin, L. D., Stern, A., Bolier, R., Kenien, C., & Reid, M. C. (2017). Problem Adaptation Therapy for Pain (PATH-Pain): A psychosocial intervention for older adults with chronic pain and negative emotions in primary care. Geriatrics, 2(1), 5.
- Neville, C. E., McCourt, H. J., McKinley, M. C., Lowis, C., Barrett, S. L., McGuinness, B., … & Woodside, J. V. (2013). Encouraging lifestyle behaviour change in mild cognitive impairment patients: development of appropriate educational material. Aging & mental health, 17(3), 276-286.
- Bayley, M. T., Janzen, S., Harnett, A., Teasell, R., Patsakos, E., Marshall, S., … & McIntyre, A. (2023). INCOG 2.0 guidelines for cognitive rehabilitation following traumatic brain injury: methods, overview, and principles. The Journal of Head Trauma Rehabilitation, 38(1), 7-23
Click below to view transcript
Alex: Welcome to Supervisions in Pain. This is the podcast where James and I reflect on our clinical practice as neuro clinicians working in the community. We talk about client cases in an effort to bridge the gap between what the evidence says in the clinic versus what happens in the real world.
And today we are very privileged to be joined by the wonderful Clare. She is a neuropsychologist, works part-time in private practice, and also is a clinical educator at Monash University. Warm welcome to Clare.
Clare: Thanks for having me.
Alex: So James and I work with Clare in our community private practice roles, and we are… where would we be without having a neuropsychologist working on the team? Particularly in this week’s theme, which is pain education for people who have cognitive impairment and where a traditional approach to pain education is not appropriate because of deficits around learning, memory, planning, organisation, and all the things that Clare’s going to support us with today.
So Clare, can you tell us a bit about what is a neuropsychologist? I’m sure a lot of our listeners would not have worked with neuropsychs before.
Clare: I think my definition of what neuropsychology is has probably simplified over and over over the years, but I think broadly, I consider neuropsychology to be really examining how we think, how we feel, and how we behave. And in the context that we work with clients who might have neurological conditions or acquired injuries, it’s really thinking about what’s the influence of the brain through acquired injury or neurological process in a condition on the function of how we think, feel, and behave. So that’s probably an oversimplification, but that’s how I understand neuropsychology.
Alex: Neuropsychs are very clever individuals, and I still feel like what you do and the assessments that you do are still quite a big mystery to me. But I know, having worked closely with you in terms of the strategies and skills that you impart on your clients, that it’s so impactful.
So I suppose we’re thinking today about our clients who have a disorder of the central nervous system impacting their thoughts, feelings, and behaviours. What’s a typical… I’m curious about what your involvement has been in working with clients who have a neurological disability, but also a persistent pain presentation?
Clare: I think it can be quite varied. So I think, typically, clients come to us generally for a neuropsych assessment. And I think probably most allied health clinicians see the function of a neuropsychologist probably around that: to assess cognition, behaviour. And we can do some formal assessment around that: what are the client’s strengths and weaknesses in terms of their cognitive capacity?
But I think the role that I see neuropsychology, particularly in community rehab and working with you both, is more around the application of that knowledge to the… for the client’s benefit. So I think I try to work with people and teams in probably a more holistic sense, where we now know that this person has difficulties with their attention, or their memory, or their executive function, so what does that actually mean?
I think sometimes neuropsychology can… there can be a little bit of a gap between what we understand as neuropsychs and how we actually give that knowledge to others. And so bridging the gap between the neuropsychology assessment and the real world is quite important. And in a pain context, it could range from how do we support a person to understand information that’s relevant to them, right through to how do we build their capacity to engage in treatment, or how do we build the capacity of people around them, depending on the profile.
Alex: So James and I have a couple of case studies to bring forward today, because I think we spoke about this a few weeks ago: rattling off a laundry list of cognitive impairments does not… it is meaningless unless it’s put into context of the way that that’s actually interfering in their life or their ability to achieve goals.
So we thought we might just jump in and start talking about a few case studies and get your thoughts on perhaps why something wasn’t effective or why it was effective. But I guess to bring it back to our theme, pain education can be simplified, but it can also be quite complex because of how it interacts with people’s core values and beliefs, their psychology, and their social status. I find it quite challenging to be able to appropriately tailor a message not only for someone with a neurotypical presentation, let alone a cognitive impairment.
What are some things that you kind of… I guess when you are providing health education more generally, what are some things that you look for in these basic building blocks of how you might adapt a message?
Clare: I think the cognitive side of it is almost the easier part: breaking information down in a way that can be understood by a person and remembered by a person. But you touched on probably the bigger difficulty in modifying or adapting, which is the person’s own… what they come into the setting with in terms of how they understand pain, what their values are around pain, because that can be quite influential as well. You have people who consider themselves very resilient at the outset, and you might have a completely different experience working with someone, engaging someone in pain rehabilitation, than you might someone who doesn’t necessarily have that identity of resilience, or who understands pain in a different way.
I think the difficulty I think is probably the most challenging from a neuropsych perspective in our cohort is that pain is quite abstract. So it isn’t necessarily that there’s a stimulus and I have a relative amount of pain from that stimulus. And asking a client to understand how it could be possible that you may have what might medically be a minor pain stimulus, but a major pain experience, I think that is quite challenging. And finding ways to communicate that is probably a real… can be a real challenge at least.
Alex: Particularly when the clients that we see, a lot of individuals who have sustained their brain injuries from trauma, like motor vehicle accidents or pedestrian accidents. So their vigilance around their body is already very heightened. I find that to be a really challenging space.
Clare: And their vigilance is also… it’s also been encouraged in a lot of ways. Moving away from symptom monitoring and self-monitoring as an adaptive strategy in terms of modifying how much someone does, you guys would know how quickly that can become maladaptive, in that someone is so vigilant that it becomes a barrier.
It is difficult. And I think, if someone is not on the same page as you are, the clinician, in understanding what pain is, you will have that gap from the start. Sometimes, and maybe more than often, it’s kind of: I need to meet this person where they are at in terms of how they understand pain, how they conceptualise it, how they can consider this abstract concept.
Alex: Indeed. Should we launch into your case study, James?
James: Yeah, sure. That sounds good.
I guess I’ll talk through a little bit of her presentation, the kind of treatments I’ve been putting in place for her, and then jump in at any point with suggestions and ways I could be adapting, because this is a good one that I can learn on the go.
So this first client, her initial hospital discharge neuropsych report read things like “severely impaired new learning and memory,” “severely amnesic profile with impaired new learning and rapid forgetting,” and “an impaired insight into her current level of functioning.”
What that looks like day-to-day for her is that she’s got roughly a four to five-second working short-term memory. She’s quite hypervigilant around the pain in her shoulders, which is why I got referred: this chronic, longstanding pain in shoulders from an older injury.
It means that she can get really caught in a loop of: if pain’s front of mind, it’ll be front of mind every five seconds on repeat, and it’s hard for her to break away from that. So she’ll self-initiate a complaint of “my shoulders hurt, both sides, it’s the worst it’s ever been,” and then get caught in that and really perseverate, which can be quite distressing for her, but also quite distressing for her next of kin and the carers who are working with her.
So that was quite a… yeah, I started working with her about eight months ago. It’s been a really interesting one to navigate, because obviously traditional chronic pain education just doesn’t apply in this instance, in terms of being able to sit someone down and discuss complex theories and give the client an opportunity to reflect and consider and get into the weeds of the complexity of it all and challenge their own beliefs.
So from the get-go, I stood way back on the pain education, and I guess made a decision that my role would be to instill what the messaging is behind some of the pain education, which is: movement is a positive thing that is protective, and let’s try and find a safe space where she can begin to develop a positive association with and move in a freer way. And hopefully over time, with lots of routine and consistency and positive, consistent messaging from the team, we try and… I guess with the repetition, the hope is that we can turn some of this into long-term memory for her: these body positivity ideas.
So we moved… she was going to the pool just socially once a week with some of her carers, so we really leant on that, got her into the warm water, we started doing some gentle movement in the water that wasn’t pain-provoking, and I guess most of our conversations were definitely not about the pain at all. It was more about things that we knew brought her a lot of joy: her dogs, her kids, her old home in New South Wales. And we kept the conversation around those themes in the warm water while we were moving.
We’ve done some work with the carers so that we can really get a consistent message around, “movement is good,” “movement will help,” “it’ll get you stronger.” And that’s the road we’re going down with her, hoping that, like I said, over time those positive messages sink deeper and she can start to approach that differently.
And we have seen some really positive results. When we started working together, she was self-initiating this conversation around “my shoulders hurt, 10 out of 10, I can’t do anything about it” every three to five seconds. We got to the point where, last time we measured, it was every 5 to 10 minutes she was bringing that conversation up.
So we’re getting somewhere, which is really big for her. The pain from her perspective is still 10 out of 10, still both shoulders, but it doesn’t seem to be impacting her quality of life as much.
So I’m curious with this one now, because I’m still actively working with this client: what are the things that… firstly, why is this working, but also, are there other things that I could lean on from a neuropsych perspective that could help level up the approach?
Clare: I think the approach that you’ve taken… you could be the neuropsychologist, James! Sounds like you’re doing me out of a job!
But I think the approach that you’ve used works because with that amnesic profile, the information… a person might understand the information that you give them, but if you’ve got three to five seconds for that information to be consolidated and used later, that’s not feasible for the person, and as a clinician, it’s not resources well spent either.
So I think what you’ve done is you’ve circumvented that. You’re trying a preventative approach, or almost a procedural approach, where by engaging in the thing that you know or that you are theorising is going to improve pain long-term, you’re supporting her to engage in that in a consistent way, where it does become more implicit routine rather than explicit: “I’m doing X for this reason,” “We’re going to the gym to reduce pain.” You’re achieving what you want to achieve, but in a manner that the barrier isn’t her cognitive deficit.
If you are stuck on that maybe more traditional, “Well, I have to do the pain education first to move to the next step,” for this client, you won’t move to the next step. There really is no next step. And so, yeah, I think you’ve adapted that in a way that the person can experience the benefit of an evidence-based pain program, but is not held back by their own barriers, which in this case is their cognitive function.
The other thing… I mean, in cases where someone has an amnesic profile, it is incredibly challenging, and I think it becomes challenging also because it can be really tricky for supports. If a person is not aware that they are repetitive, and, you know, maybe that they are talking about pain every three to five seconds, it sounds like to begin with, or several minutes, they’re not experiencing that kind of burnout of that response, but the burden on others is significant.
I’m just thinking the other things that I might have tried are really almost trying to avoid the pain conversation, taking pain out of any conversation, so it’s not about pain, but more about, “This is our routine.” We do a massage in the morning, or whatever kind of pain application you might think is helpful for this person, but making it not specific to pain. Talking about pain is probably going to be a trigger.
And as you said, her self-rating of pain is also maybe not the most helpful. At that point, rating her pain as 10 out of 10 is probably something that’s almost like an automatic response, and may not really reflect how she feels.
So I think it would be simply about that: using routines, consistent routines, consistent responses from her supports, and taking pain out of the conversation and more making it about positive routines that are supportive of reducing her pain without being so explicit in doing so. Does that make sense?
James: Yeah.
Clare: That’s what you’ve done.
James: Yeah, and I guess the tricky part for me at the moment is that I’ve got one hour a month funding for her.
Clare: Yeah.
James: Which means that I guess every third time I see her, three to six times, I do need to complete some form of formal assessment of pain and do need to have a discussion of pain. So it’s hard to develop that relationship where I’m not even… I’ve got nothing to do with pain, we’re just moving in the water, because at some stage we do need to talk about it, and for her, it’s relatively frequently, given the amount of funding, which is hard, too. But so, yeah, most of it’s been empowering the carers and supporting them, because the burnout exists for them, too, definitely.
Clare: I mean, you kind of have just described: this is such an impossible position I think that clinicians are put in. To expect that you can achieve, you know, sort of really significant positive outcomes with an hour a month of funding, it’s quite remarkable that you’ve made the progress you have already, to be honest.
James: Yeah, I mean, I think it’s got to… it’s really down to the carers in instances like this, isn’t it? The attending care workers, if they’re on board and ready for something that will help, and they’re really proactive… I don’t know where we’d be for a lot of our clients without them in the teams.
Clare: I agree. I think the other thing to consider is sort of reframing what the goal is. Is the goal really about pain, self-reported pain reduction, or is the goal actually about increased activity, positive engagement? I think if you’re measuring pain in that way, where pain might restrict participation, if you sort of reframe the goal in that respect, probably you also have a good outcome. Obviously, pain reports are helpful, but in your case, I would say if this person is reporting a 10 out of 10 pain at time point one and time point two, but they are doing… you know, they’re going to the pool three times a week and they’re going for a walk every second day, self-report is not really capturing the kind of progress that you’re making either.
So I think, yeah, thinking about the function… what is the goal really for? Like, if she improves her pain, but doesn’t actually increase her participation, is that success?
James: Yeah, absolutely. And that applies to a lot of our clients, doesn’t it, Alex? When we usually get a pain referral, the underlying aim behind that is like pain severity, but, you know, with our pain background, often our role is to get them doing more with what they’ve got. And then if the pain severity reduces as a result of that over a longer period of time, that’s sort of the cherry on top. And that’s a conversation we often have with our clients that don’t have these type of cognitive impairments at the start of our work together, to see if they’re still on board with that.
Alex: Yeah, doing… doing more despite pain, or being in the world despite. And, yeah, once they start engaging in those, like, healthy brain behaviours like exercise and social activities, then their pain almost always will start to reduce, because they’re taking better care of themselves and they’re just, you know, have more purpose and meaning in their life. Yeah, absolutely.
I’ve never… I’ve never experienced a person with that kind of memory impairment. Was it a TBI? What was the genesis of that?
James: An hypoxic brain injury.
Alex: Right, okay.
James: Yeah, really, really tough. Every time I come out of that session, I just am full of admiration for the carers, because they do eight-hour shifts, and it is full-on work. They do beyond just sort of placating her, they really, you know… I’ve been there sort of six or seven hours into their shift, and they’re redirecting, and talking about, you know, positive parts of life. It’s just great.
Alex: Because the distress levels are so high, or what?
James: Because it’s just so persistent. It’s literally, if… you know, it’s that 3 to 5 seconds. It was pain, now it’s other things, but it will be that topic on repeat.
Alex: Whatever it is that’s loudest and has caught her attention.
Clare: Yeah, that extreme perseverative thinking, it’s really challenging. And I think the other… the other side of this, and I know you’ve done this already, because having the buy-in that you’ve had from the supports, but really also engaging the supports in what you’re doing, making it very clear that real team approach, you know… that despite the fact that she might talk about pain regularly, this is how I’m going to tackle pain, and having people understand what your goal is as well, because that really helps with the buy-in and the implementation of what you’re trying to achieve.
James: Great. Thank you, that’s good.
Clare: I don’t think I really gave you very much good advice, it sounds like you’ve already done all the work.
James: No, I think… I think what I’ll… I’ll really try and take pain completely out of the picture when I’m there and encourage the carers to do the same. That’s an easy thing that I can start with straight away. Thank you.
And you, Alex? Who have you got for us?
Alex: Yeah. So, slightly different profile. My person experienced a traumatic brain injury about 25 years ago, severe frontal lobe injury, and their pain started about 10 years post living with a TBI, when they broke a bone from a fall. It was a complicated fracture and it went through a sort of… there was an avascular necrosis and surgery, so it was a big fracture. But it impacted their… it happened to be on the side of their hemiparesis, so there was more complications around tone and joint mobility, which was impacting their walking.
From a neuropsych perspective, this person’s quite interesting because not so much because of cognition, but the mood and social dysfunctions that were occurring in their life. So, from a cognitive perspective, there was severe reduced initiation, reduced memory, very big challenges in problem solving, in organising themselves and their thoughts, slowed information processing, reduced attention and concentration.
And from a mood perspective: highly anxious, hypervigilant around body. Also, there was an attention deficit disorder in there. And this person, also very vulnerable to problematic people coming up in their life, vulnerable to abuse within romantic relationships.
But the reason that I became involved was around the broader plan related to opioid dependency. So, polypharmacy from managing the mood disorder and the attention issues, as well as lots and lots of opioids and a whole host of other analgesics from the orthopaedic injuries, and which then sort of tipped into opioid dependency and addictive behaviours.
So the plan, and this person self-initiated that they wanted to reduce their dose of opioids because it was impacting on their cognition and also they were ineffective and they were doing more… the dose was so high that they were doing, you know, the side effects were no longer acceptable to them.
So they wanted to wean off the analgesics and in place of that needed more strategies to manage the pain.
And this person had and had a massive care team. Massive care team of medical professionals, but also allied health, and did have support workers, but the support workers around them were… there was a lot of turnover, very difficult to get consistency of staff, so that was one of the biggest challenges, actually.
So, from my involvement, and this person as well was very open to education, in fact, was seeking answers and seeking meaning in what was happening inside them, and so was doing a lot of Googling! And really did demonstrate an eagerness to understand the mechanism of pain. However, I quickly learned that to present too much information and to pitch it at the level that they were asking was too… it wasn’t actually helpful, it was in fact probably… it just was another thing to become vigilant about and fixated on.
So finding, I guess, the right amount of detail to provide was one of the biggest learnings I had with this person.
And as well as the… this person had a million different programs and bits of equipment and reports and advice just was coming at them from every which way. And I could feel the overwhelm and just the feeling very lost in this sea of effectively being like a full-time outpatient, despite being 10 years post-accident.
So, any questions before I carry on?
Clare: No, no, I’m building a picture in my mind.
Alex: The amazing thing about this person was they had such a very clear interests and it was actually quite easy to direct strategies in the direction of what they were already into. So, piggybacking off things that they were kind of used to, really enjoy, or wanted to do was one of the lowest hanging fruit.
So, we worked a lot on I guess just like enhancing the amount of normal, human, community shit that we do that’s fun and joyous and has nothing to do with rehab! Because I think I had this gut feeling that we just needed to move away from a clinical rehab approach and just be more in the world and enhance her feeling of connection with others, especially because social relationships were a big point of stress for them.
So we started to try to find things in local community, build relationships with baristas or, you know, even going down to chat to the concierge, that sort of stuff. But that wasn’t really touching the sides of the pain, it was sort of like getting them into the community.
And started to find most success, actually, when I introduced… Clare, are you familiar with the DIM-SIM model?
Clare: I don’t think so.
Alex: So it’s a… I guess a pain education framework that was pioneered by the Explain Pain crew, the Neuro Orthopaedic Institute, where they use a binary framework for identifying safety and danger cues in someone’s internal and external world.
So it was a nice… because concrete thinking was also something that was present for this person, and understanding those lofty, abstract concepts was absolutely not going to work. So picking out parts of their life that fitted nicely into one each of these categories was really helpful, and doing that repeatedly every single session so that there was a… they could sort of self-identify whether “Is this behaviour or this person or this feeling serving me and my system, or is it causing… is it contributing to my sense of danger, or is it ramping up protective outputs like anxiety and pain and fatigue and muscle tension?”
So that was really, really helpful, and we used it a lot. I also used it as an outcome measure, James, so I think you can get creative with your pain outcome measures! It doesn’t have to be the five that we are told to do by the pain clinics, because they’re just not appropriate for everybody.
What else? We also tried… whilst I learned also that doing any kind of focused hands-on work or exercises or strengthening in the specific area of pain was also resulted in hypervigilance, so the approach was much more like a behaviour coach just to get you integrated into society a little bit more, and then eventually they were able to just head along to these groups and routines without my help at all.
So that, yeah, that’s kind of what worked, what didn’t work. It’s still an ongoing challenge, but…
Clare: Can I ask, what was the client… what is their sort of experience of pain at the outset, and how did that restrict them? Were they someone that, “Yeah, if I feel pain I…” was that the barrier for participation?
Alex: Honestly, no. The barrier was like… regardless of whether they had pain, they would have needed support to participate in the community and organising themselves enough to be able to get out the front door. And pain was another attention-sucking phenomena…
Clare: That just made it even more difficult.
Alex: Yes, and I think also cognitive fatigue was a huge issue for this person. The pain and the fatigue and anxiety were just like, just holding hands the whole time. So whenever… I think that’s why that concept of DIM-SIM was helpful, because it could also be applied to fatigue, when your system is overwhelmed, pain and fatigue will crank up.
And I think pain also contributed to their cognitive fatigue. Do you know, is there much research on that?
Clare: Well, I mean, pain is inherently sort of attention-grabbing, so you spend a lot of attentional resource allocate to pain, and ruminating on pain, thinking about pain. And so, yeah, certainly, like, clients who have persistent pain will report fatigue. But the fatigue is often compounded on top of organic sort of cognitive fatigue, where it’s hard for a person to differentiate between “What am I feeling because of my brain injury, what am I feeling because of my rumination on pain, and the energy I spend on that?” It’s really hard to disentangle that for a client. So if a person is experiencing pain for whatever reason, and they’re experiencing fatigue for whatever reason, and pain, I mean, the kind of internal resilience it takes to overcome that can be such a challenge.
I think for your client as well, like, you know, sounds like there was some anxiety that is actually pretty grounded in reality. Like, if you’ve had an experience of, it sounds like a quite significant injury, complex medical situation… how can you expect someone to to move away from that easily, particularly when they have that frontal lobe dysfunction, which makes it really difficult to… psychology often asks clients to be abstract in their thinking to overcome some emotional challenges, which is that’s something that many clients with brain injury can’t actually do.
So, you know, I would often talk to clients in that situation about more how, “Your brain is actually working really well in this instance, because it’s alerting you to circumstances that you might feel pain. It’s got every right to do that based on your history, but we need to teach it when it needs to bother and when it doesn’t need to bother.”
And so some of that work, and probably this is where a good multidisciplinary work comes together, is, you know, maybe it’s physio and neuropsych working together on: how do I recalibrate some of that anxiety and reduce the lower the threshold, whilst also doing some physio in the background? Because for that client, it sounds like it was about genuine, sort of worry that just needed to be tempered back a little bit in order for some more to happen.
Or for someone who is quite… who has difficulty with problem solving and is quite concrete in their thinking, another approach could be make it very clear what you’re going to expect. So when we do this, what I’m actually expecting is that you might or you may or you will experience an increase in your pain for this amount of time, and if it resolved after X amount of time, then that’s actually what we’re… that’s what we’re expecting. If it hasn’t resolved by this time, you know, that’s more problematic.
So sort of not… being really transparent about what am I going to expect, what should I expect, and when do I worry. So real clear guidance on: pull back if this happens, but if you’re experiencing an increase of pain that eventually goes away, you know, that’s actually the goal, that’s what we’re meant to experience. Does that make sense?
Alex: Yes, because it was very difficult for them to… the self-monitoring of the emotional impacts of pain, of which were happening a lot, like there was a huge emotional driver to going on in the background given just like complex social situations. But they were unable to identify an emotional experience without, like, they had to… had to dial in more to like the somatic experience of that. So, like, elevated heart rate or increased muscle tension or shallow breathing, those sorts of cues about when they’re in that state of hypervigilance was a skill that they were working on as well.
So I actually feel like there was so many… there was so much sensory information hitting their system at any given point, it was very hard for them to discern, like, they would just tip into this state of overwhelm a lot, where and you could see it, like the unable… really slow processing, unable to attend to something for more than a couple of minutes, so you could really see the impact of that overwhelm on their just like general coping.
Yes. Also really tricky that one of, like, the main side effects of reducing opioids or weaning off opioids is anxiety and agitation. So there was a lot of setting of expectations about what the actual, like, experience would be in the weeks after they would have a reduction in their dose. Which I felt like the… the medical system was not… in my opinion, there wasn’t enough support from the physicians about how to support someone with a disability in that space.
Clare: And, you know, it sounds like this person has… there’s a, you know, access to supports, but maybe not… like, utilising those supports in an integrated way doesn’t sound like it has been optimised. And that’s such a challenge, too, because the person is genuinely getting probably different bits of information from, you know, different people, and as we know, having worked in teams before, like, when it is a united team who have a share a goal with the client, that is such a different experience to, you know, lots of people kind of working on the same thing, but independently.
I think if the client experiences… they they feel those that’s more somatic sort of experience rather than a thoughts, or, you know, they can really kind of capture what they’re thinking, something that I I find helpful is almost doing kind of that biofeedback in the moment. So if the person is saying, “Well, my breathing’s increased and my heart rate’s really high,” or, or, you know, you suspect that that might be going on, you know, I would probably work with them to find ways to actually control that. So even, you know, some controlled breathing. Most people have a smartwatch or something similar these days where you can show that you’re actually reducing your heart rate by doing that, and when you reduce your heart rate, it kind of opens the door for these next things to happen.
So that that really concrete data for people can also help that you can show them that it’s not just this kind of airy-fairy deep breathing is is good, but look what it can do to your, you know, for your nervous system, you can actually… you have control over that aspect.
It sounds very very complex, though, because there’s a lot of moving parts, by the sounds of it.
Alex: Yeah, incredibly complex, and, like, very… they were… they are a joy to work with, actually. And, and this… my involvement with them was many years ago, and they did in fact reduce their opioids from an incredibly high dose that should never have been prescribed, to, you know, very safe and sustainable levels.
And the strategies were really still about… well, really like social in nature.
Clare: And just that, I mean, think… like, if you think about pain as being high-resource kind of dependence, so I like to think of it like: you have only so much attention, your brain is not infinitely resourced to pay attention to multiple things, and things like, you know, pain might take up 50% of that attention, and you’ve only got 50% left. You don’t have as much as you want left over. Things like anxiety take up attention, etc.
So, purely by the benefit of spending that attention elsewhere, being social, it just inherently leaves less room for pain. And I think that’s the hard thing to kind of explain sometimes, is that nothing has changed except how much attention you’re paying to pain. But you can often get quite good outcomes, I think, because people experience the reduction of pain, and they don’t even really need to know what the mechanism of that is. Their experience is reduction, but thinking about, yeah, pain as a resource kind of sucking experience, sometimes it’s just: how do I, how do I gather back some of that attention that pain is taking away, and let the person experience time without attending to pain?
Alex: I love that so much. Such a, like, helpful way of conceptualising that.
James: I like the idea, too, of actually going through that process with them in time they’ve experienced the pain or the increased anxiety, “Let’s work on together some breathing strategies and work down.” It made me think of sort of the pain management strategy sheets that we set up sometimes for our clients, Alex, to give them some concrete examples of, you know, physical ways to modulate some of their pain when they’re experiencing a flare-up. So that when they’re in that, that, you know, everything’s ramping up, they’re not thinking clearly, they’ve just got something that they can read and something that they can do. But I don’t think I’ve ever actually sat down while they’re experiencing a flare-up and sat next to them and gone through the list with them in real time. I think that would be really powerful.
Clare: And modelling that, I think, helps people, too. Like, you know, often we… I think we can expect a lot of our clients who have cognitive impairment that, “Okay, I’m going to give you these strategies.” I think spending a lot of time on not just “what is the strategy,” but “how are you going to implement it?” And that might be setting a reminder in your phone, I’m telling your support worker to do it with you. So making it, making it as feasible as possible for that person to access the strategy, also. Yeah, because the strategy is only as good as your ability to kind of use it.
Alex: Yes, anyone can… can rattle off a home exercise program, but if they’re not going to do it, it’s, you know, it’s useless.
Okay, I’m just conscious of time. I could chat to you about this all day, Clare. And I wish that you were on all of my MDTs for my entire caseload!
But thank you so much for sharing your expertise and your insights. We really appreciate it. And any final parting words of wisdom for our audience?
Clare: I think the… one of the most helpful things I’ve ever been told is to think about people in terms of what they can’t do, what they won’t do, and what they don’t do. And so if someone can’t do something because they have learning and memory problems, for instance, it’s then, okay, how… can I turn that “can’t do” into a “can do”? Can they build their capacity, or can I build the capacity of someone around them? But it’s really, really difficult to ask someone to do something that they can’t do. And so that… that’s where the clinician has to be flexible.
So, yeah, I always use that very, very simple sort of framework when I think about people. Am I asking them to do something that’s impossible? Am I asking them to do something that they just don’t want to do, can I work on whyOr am I asking them to do something that they don’t do because they haven’t had the opportunity, don’t have the resources, etc. So I think if anything, that kind of very simple framework is… has always been helpful for me, and I think could be helpful for many clinicians.
Alex: “Can’t do,” “won’t do,” “don’t do.” Cool, that’s great.
James: Thank you, Clare.
So we’ll say bye, and Alex and I will come back to have a talk through some of the evidence and research about applying pain education specifically to our population with cognitive impairment. Thanks so much for your time, Clare.
Clare: Thank you.
Alex: Thanks, Clare.
James: So in terms of the evidence on this topic, we sort of have to pick and choose a little bit, because there’s not a huge amount of clear evidence in terms of specifically giving pain education to clients with cognitive impairment. So we’ve got to take a little bit of evidence in terms of providing pain education to people with some form of memory impairment or geriatric population, some resources from like health, providing health education to the ABI population, and kind of build best practice based on those. So a lot more research needs to be done in this space, obviously.
In terms of what we do know, so there’s research around pain education to older adults with chronic pain, emotional distress, and mild to moderate cognitive impairment. And they introduce ideas to tailor your education in ways such as reducing the cognitive load, which is like breaking down those complex concepts into more highly structured, more straightforward steps and really sort of spacing them out.
They talk about using environmental and memory aids, like visual checklists and logbooks and things to support any education that we’re providing.
And it involves a lot of caretaker integration, is the phrase that they use. So bringing in the informal supports and the formal supports that they’ve got available to them to help support the messaging, and the tracking, and the logging, and things that we’re wanting to do with them.
So in terms of what that might look like, for example, if we were to pull out, if we were trying to provide some education around the concept of or the impact of sleep on pain, on the pain experience: the cognitive load reduction might be, you know, instead of this like complex, reciprocal discourse about the complex interplay of those systems and descending control and, like, axon potentials and things, cognitive load reduction might look more like drawing out quite a linear flowchart that’s quite visual for them, linking, you know, reduced sleep to increased in stress hormones to increased nociceptive firing and pain signalling. And just keeping it sort of two or three steps, quite visual, and try and draw the link there.
The environmental and memory aids section might look like setting up a logbook for them where they can be supported to complete that at the time, and then in a few months after, you know, extracting some of that data, we can sit down with them and say, “Look, I know it’s difficult for you to remember how you’ve been sleeping and how much pain you’ve been experiencing, but the way you’ve logged this, we can see that, like, on those days where you’ve been sleeping really poorly, you’ve also been talking about being in a lot of pain.”
And caregiver integration might be, you know, getting the next of kin’s help in noticing those patterns. So if the client’s talking about being in more pain one day, it might just be a prompt from their partner to say, to ask them about how they slept last night and help them draw those those lines and patterns.
So that’s one example that we can look towards.
Alex: And was this… was this a study, or what what was the nature of this research?
James: Yes, yeah. This was… it was looking at a specific structured approach to… it’s called the PATH-Pain, PATH stands for Problem Adaptation Therapy for Pain, and it was set up specifically to look at providing better pain education to to the geriatric population who are in pain plus emotional distress.
Alex: Right. So the population group was just the, like, older adults, plus or minus cognitive impairment?
James: Plus cognitive impairment, they to to be included into that research, they needed a mild to moderate cognitive impairment and be emotionally distressed by their pain.
Alex: Oh, got it. Okay. And what was the setting?
James: Aged care, residential aged care.
So we can take some some resources from that and apply it to some of our population, but obviously a little bit limited in terms of our total population.
There’s some really nice research looking at pain education for people with intellectual and developmental disabilities. And there’s similar themes that start to emerge. So one of them is using multimodal and interactive tools, so replacing that really discourse-heavy or text-heavy content for, you know, content with more simplified icons, really visual, adding like interactive roleplay into it, using visual scales, and even using technology and games to to assist with the learning.
And also tailoring your communication and assessment, as we sort of discussed in the examples. Getting to know your your client, aligning your language to the way that you feel like they’re going to receive that best, and pairing education with, like, behavioural observation tools.
The third, which was passed on to us from Clare, thank you Clare, was the a resource more I guess directed towards the neuropsych community, which was the the INCOG 2.0 guidelines, which came out in 2023.
And it just helped break down in a little bit more detail for our population, the ABI population in the community setting, some some specific strategies you might be able to link in for a specific impairment. So, for example, if our clients have got poor information retention, rather than delivering really long reading packets or a sort of a full one-hour sit-down session, you do sort of microlearning, short five-minute snippets. You space them out and repeat the same message over multiple sessions, and you try, like, adapted teach-back, so maybe after the third or fourth session, once you feel like they’re starting to grasp the core of what you’re discussing, you see if they can educate you on it.
If they’ve got impairments with their executive dysfunction or impairments with their executive function, rather than giving them, like, a home plan that they would guide themselves, like a pain management plan that they could work through or a structured list of strategies, things like smartphone reminders, giving them, like, a calendar, or giving them a logbook with an alarm on their phone to remind them to complete that, getting their next of kin or carers to help prompt those things for them, so they’re not having to sort of organise and initiate themselves.
If clients have got severe cognitive fatigue that’s impacting on our sessions, then rather than these big, dense, lengthy conversations that we might have with some of our clients, short, frequent sessions, lots of rest breaks in between, and again, some of that adapted teach-back to make sure they’re really grasping the concepts.
And for, as a fourth example, if our clients are struggling conceptualising abstract concepts and thinking, really try and make it sort of concrete to their life experience. So rather than trying to explain a broad concept, use an example that you’ve received from them to sort of reinforce one of the theories that you might be talking about, to ground it in reality for them. So, if we were to bring back that sleep example, you could draw on something that they’ve already brought brought up in, say, an initial assessment. Say, “You know, you talked about feeling more distressed, or you experiencing way more pain on those weeks that you’re sleeping really poorly… and there’s a reason behind that,” and then sort of try and use that, and keep keep that physical example as like the anchor around all of your your education.
So that’s a really nice resource for us to look into deeper.
Alex: Yeah, I really liked that share from Clare: INCOG 2.0 guidelines for cognitive rehab following TBI, which we can link in the show notes.
Very good. Thank you.
James: Welcome.
Alex: So, thank you again to Clare so much for your time and expertise.
It’s very difficult to summarise all of the wise things that Clare has spoken about, but I’ll do my best. So, the first take-home message is around cognitive impairments. If your client has a cognitive impairment, it does not disqualify them from learning and applying new pain concepts. However, as health professionals, it is really important that we understand… we understand these impairments, and what they mean for your client and their participation and daily function. So, not all impairments will have the same severity or impact or interference in someone’s daily life.
And if you can, if you’re lucky enough to have a neuropsych on your MDT, absolutely consult them about how to effectively and appropriately tailor pain education to your client. OTs also have really good skills in cognitive rehab, so they’re another resource to tap into. If you don’t have any of those at your disposal, then checking out the INCOG guidelines that James and I will link to the show notes, and you can also… there’s a nice table that sort of has various impairments and the strategies that you can use to tailor your message.
The second take-home message is engage the client’s supports in whatever you’re doing. Bring them along the journey, explain the why, and the mechanism, so that you can have the consistent approach over time. They are such an important resource that in my opinion is underutilised in our space.
And the last one is to really focus on participation goals as your primary outcome measures and focus. It may not be appropriate to have pain severity scales or standardised outcome measures may not be appropriate for your client, but really we’re wanting to increase a person’s capacity to engage in their life despite pain.
And yeah, I think that’s… is that it?
James: That’s it, yeah. Thank you. Thanks, Clare.
We’ll see you all in another two months. We’re going to be looking at sort of the grey spaces around scope of practice in the community space. And we’ve got an OT joining us as well, so that’ll be very exciting.
Thanks, Alex.
Alex: See ya, James.
Connect with us
Have a complex case or a specific challenge you’re facing in the community? Get in touch via your direct line to Alex and James – learning@independent-rehab.com.au