The Dementia Podcast

Understanding Behaviour: A Clinician's Perspective

February 04, 2021 Professor Colm Cunningham
The Dementia Podcast
Understanding Behaviour: A Clinician's Perspective
Chapters
The Dementia Podcast
Understanding Behaviour: A Clinician's Perspective
Feb 04, 2021
Professor Colm Cunningham

Join Colm and Associate Professor Steve MacFarlane, Head of Clinical Services at The Dementia Centre as they discuss the clinical and pharmacological considerations in the treatment of those who are experiencing behaviours and psychological symptoms of dementia (BPSD). Through a balanced discussion they explore the benefits of non-pharmacological approaches to care compared to anti-psychotic medication, appropriate medication use, the importance of person- centred Care, and the Dementia Support Australia program (DSA). 

This episode is sponsored by the HammondCare Foundation.

 

Find out more about the limiting of drugs in the treatment of changed behaviour in dementia in this article , the  Australian Prescriber, and this report.   

 

For information on language and changed behaviour for those with dementia there is the editorial titled ‘Language paradigms when behaviour changes with dementia: BanBPSD’  from the International Journal of Geriatric Psychiatry. 

Show Notes Transcript

Join Colm and Associate Professor Steve MacFarlane, Head of Clinical Services at The Dementia Centre as they discuss the clinical and pharmacological considerations in the treatment of those who are experiencing behaviours and psychological symptoms of dementia (BPSD). Through a balanced discussion they explore the benefits of non-pharmacological approaches to care compared to anti-psychotic medication, appropriate medication use, the importance of person- centred Care, and the Dementia Support Australia program (DSA). 

This episode is sponsored by the HammondCare Foundation.

 

Find out more about the limiting of drugs in the treatment of changed behaviour in dementia in this article , the  Australian Prescriber, and this report.   

 

For information on language and changed behaviour for those with dementia there is the editorial titled ‘Language paradigms when behaviour changes with dementia: BanBPSD’  from the International Journal of Geriatric Psychiatry. 

Colm

Hello to you, you're listening to The Dementia Podcast. And I'm your host, Colm Cunningham. It's great to have you with us. Today we're following on from our last podcast, the story of Gina and Gus, by continuing the conversation on understanding changes in behaviour. I'm joined today by Professor Steve McFarlane. Now Steve's our head of clinical services here at the Dementia Centre. One of the programs he has clinical oversight for is the Dementia Support Australia program that works nationally here in Australia to understand and support people with dementia when behaviour changes.

DSA, as it often shortened to, will be a future featured episode, when Steve will be joined round the mic by some of the team who work on that program.

In a moment, Steve will be joining me from his home in Melbourne. Here in Sydney, I reflect on 15 years ago, when I wrote in the UK Nursing Standard, about better understanding changes in behaviour in people with dementia. Now that was written in the acute hospital context. And while today, I would challenge some of the language I used, the principles still stand the test of time. But it's time that is the issue here. In 2009, Professor Sube Banerjee in the UK, raised the issue in a report about the use of psychotropic medication called time for change. So why has been so little change? Only this month in Australian prescribers, Steve McFarland and I talk about de-prescribing and the algorithms to do that. So why, despite the immense amount of literature and research, do we continue to miss the basics and have poor practice? in that article in the Nursing Standard, I used the term “challenging behaviour”, a term I would certainly only use an error these days. Why? Because it's one sided. And that puts the focus of the problem on what the person with dementia is doing. Taking little account of all the things that could be creating the problem, like the environment, approaches of staff, and underlying needs, like pain, or in the context of a hospital environment. The fact that it can be a frightening confronting and confusing environment for someone without a cognitive impairment. So think about how disorientating and challenging it can be for somebody who has dementia. So let's start by talking about language. There are new terms on the block like distressed behaviours, responsive behaviours, they're all part of trying to introduce and swing the focus to the overall picture and taking the blame game out of understanding what's going on for someone with dementia. Steve, welcome. In our recent article on language paradigms, we set out the argument to determine behaviours and psychological symptoms as a rule. Steve, the terms often shortened to be BPSD. How helpful do you find the term? 

Steve

I think it's helpful to a point, I think to some extent, regardless what you call something that has pejorative connotations, in terms of what you're describing, that whichever term you end up using, eventually ends up being tarred with the same brush. But BPSD is problematic, because it implies that the behaviours are due to the dementia. And I don't think in many cases they are. Everybody has behaviours, I view behaviours in the context of dementia as having two purposes. One is to communicate and when we prevented from communicating by virtue of cognitive impairment, what our true concerns are, all of us are likely to communicate in the only way that remains to us, which is through our behaviours in response to something. The other thing that our behaviour tends to convey is a reflection of our experience. And when you think about this range of behaviours that are subsumed under this term, BPSD some of the behaviours are clearly attempts at communication or occurring in response to a situation that a person finds themselves in and therefore not an integral part of the dementia experience per se, but of what goes on around people when they have a diagnosis of dementia and find themselves in situations that they're not equipped to respond to. So there's a communication element. Having said that, there's a range of behaviours that must be due to the things that are going on in the brain in the setting of dementia and regardless of the type of dementia and I'm specifically talking about delusions, and hallucinations. A hallucination to my mind cannot be something that occurs in response to the environment, or to the way somebody is approached or as a as a way of communication, a hallucination is an organic symptom that's determined by what's going on in the brain, either at a hardware or a software level. So thinking of behaviours in this binary way, firstly, as a communication. And secondly, as a reflection of our experience, if we're experiencing hallucinations, and that experience is real to us, a lot of the times these things are frightening. And that's going to be played out in our behavioural communication to those around us around what we're experiencing. So there's certainly behaviours and psychological symptoms associated with dementia, or that may be seen in dementia. But I think BPSD in the way that it's traditionally been used tends to imply too much that it's an integral part of the dementia process, and therefore, partially at least absolves those around the person living with dementia, for taking some responsibility for considering what their own actions might be doing to drive a behaviour.

Colm

I think what you're obviously telling us is that we need to understand what's going on. And sometimes that actually may be situations that the environment or the way we're supporting somebody or something they don't understand or some care need not being met. Maybe the issue. But clearly, you seem to be telling us that also. And I think you've used the term before that some things are intractable. So can you tell us a little bit more about I guess that other ends of the spectrum worth very clearly behaviours and psychological symptoms related to the dementia? What, what sort of behaviours do we see that you would class, you've touched on some.

Steve

Okay, I guess, the whole discussion around terminology and BPSD. it buys into or verges on this argument about whether behaviours are best managed with behavioural environmental psychological interventions, or with the use of psychotropic medications. And I'd hate to see the baby thrown out with the bathwater in this, certainly were behaviour as a communication and reflective of carer approach or an inability to express an unmet need. Behavioural and psychological interventions are where it's at, but for these biological symptoms that are a product of the brain's misfiring or mis wiring, whatever the case may be in dementia, I do think that there's a role for anti psychotics, and we can manage a psychotic experience with a behavioural or psychological intervention. Drugs do have their place, and where behavioural and psychological interventions have failed. And you did allude to the fact that despite the best of approaches, they still may fail. There's still a role for psychotropic medications as a class of managing a person's distress if that distress cannot be managed by any other means. Certainly, non drug approaches are ideal. But occasionally, when all else fails, we do need to bear the fact in mind that the person who's expressing these behaviours is experiencing discomfort and distress as a result of them. And sometimes it's in the best interests of the person, I think, to manage that distress pharmacologically where it can't be managed by the means. Having said all that, if I can expand, I'm very much concerned that the term psychosis is thrown around a bit loosely in the dementia field as well. We talk about delusions and hallucinations as being psychotic experiences, and they are but to use those terms in relation to dementia tends to overlook the possibility that certain experiences and I'm specifically thinking about delusions here may not be psychotic at all, I think Colm you and I've had this discussion before where certain types of delusions so called are very common in people with dementia, there's delusions that things are being stolen, for example. And to my eyes, there's absolutely nothing about the deterioration of the brain in dementia, that dictates that this belief in particular, should be such a common belief. And to my eyes, the common behaviours that are labelled delusional in the setting of the dementia, are often best explained as out effects of poor memory. You know, if you have a lady living at home, who is in the habit of hiding money around the house, and one day she can't find that money, but she's sure she put it somewhere. And if it's not where she sure she put it, it must have been stolen. If the only other person who visits the home is the district nurse, it's a very short hop, from the perspective of the person living with dementia to conclude, not unreasonably, that the district nurse must have stolen. And although that meets the technical definition of a delusion, a fixed false belief. There's no way that an anti psychotic is going to change the belief structure of that person in relation to that particular belief. So, not all delusions are psychotic. And I think we need to be very careful when communicating with doctors who might be tempted to prescribe an anti psychotic for a psychotic experience to be really clear about the context in which we're using that language. So the language that we communicate with other health professionals and with families around behaviours does need to be precise in how we use it, because the potential for inappropriate medication. If that's not the case, is is very much to the for.

Colm

Steve, I could not agree more with your statement to be really clear and precise, because of the many consequences of inappropriate use of antipsychotics. So while antipsychotics clearly have a role, are there other common examples of people being considered for their use, when they may not be the right approach?

Steve

I guess there's certain behaviours, which get classified under the casual heading of agitation, for example. And if you look at the sort of behaviours that are captured under the heading of agitation in the various tools that exist to assess behaviours, you'll see things like wandering, shadowing staff, exit, seeking, sorry, calling out as agitated behaviours. And then you look at the indications for the use of psychotropic drugs on the Australian Pharmaceutical Benefits schedule. And in other jurisdictions, you'll see that a particular medication a particular anti psychotic might be indicated for the treatment of agitation. And see that as a doctor and to equate wandering and shadowing and calling out with agitation that requires treatment as a symptom with an anti psychotic, I think, is quite misleading. Because there's no way intuitively that an anti psychotic or any psychotropic medication, is going to alter the behaviour of wandering or calling out to take a couple of examples. Beyond mediating the action through sedating the person, to the point where they can't do it anymore. So I think there's a mistake in using anti psychotics for symptoms, without first asking the question, what is the symptom trying to express and the analogy I'll give you is, if you went along to your local doctor with a cough, you would expect your doctor to take your history about why your cough is occurring in you at this time, you'd expect them to do a physical examination to listen to your chest to maybe order in few a few investigations, including a chest X ray, I think it'd be rightfully outraged if you were sent away with a script for a cough suppressant. Because you had a cough, as though the cough was the be all and end all of treatment, I think seeing agitation and then prescribing an anti psychotic simply because an anti psychotic has been approved by the FDA or the TGA, for the treatment of agitation and dementia misses was a very real opportunity to understand the cause and the meaning of the symptom, and to tailor a treatment to a person's specific needs without exposing them to the very real risk of anti psychotic side effects. And that's one of the things I'd like to see change in the mindset of medical practitioners to the management of BPSD. 

Colm

Speaking of changing mindset of you Steve, you have worked on the Dementia Centre as a clinical lead. And then dementia support is truly a program in its early iterations to its current form. over four years, you've talked to me and in public forums about a degree of scepticism initially, about the program's multi modal approach, has your thinking changed. 

Steve

Absolutely Colm. I mean, I trained in age psychiatry, in public hospital inpatient units, where, you know, maybe a third to a half of all of the patients there at any one time would have been admitted with altered behaviour. And my experience of treating us in an inpatient setting was was very bleak. I mean first of all, although I was aware that you only use medications when behavioural and psychological interventions have failed, because the only people I ever saw who were admitted to my unit with those in whom those interventions had failed, I thought, then all it was open to me was the use of psychotropic medications, particularly when I had to maintain hospital guidelines about achieving a certain length of stay and create a bed for the next patient to come in. So much of what I did in the hospital inpatient setting was with medications. I wasn't very impressed by the results of the medications, certainly. But I thought that, you know, if this is what medication can achieve, and it's not match, I can't imagine what the behavioural and psychological interventions can achieve. So I was given the opportunity in 2016, to spend my sabbatical time, which was initially a six month period with the Severe Behavioural Response Team, which was just being set up at that point and just set up some clinical governance and medical review processes around that and you're right. I was highly sceptical that the approach would work and I think I said as much to you when you brought me on board. But given it was only a six month period, and it was a bit of a try before you buy, there was no harm in doing it. It was an interesting project. But my views had been altered by the end of that six month period to the extent that I subsequently resigned from my substantive position at the time and was was a convert to the cause. I think he referred to it as my “Road to Damascus” experience. And that's probably quite correct. 

Colm

What are the things that four years on the program has taught you? Are there the common issues that we need to be looking out for when we're trying to support people? You talked earlier on the bit sometimes, it's not about the dementia, it's about the situation, what are the top things that we need to be thinking about.

Steve

The top issues in terms of contributors to behaviour and you could talk about the top five behaviours, but there seems to be a number of common threads underlying a wide variety of behaviours, whether they be agitation, aggression, wandering, calling out or whatever. Far a way the top one which we've come across in the dementia support Australia experience would be pain. Whether undertreated pain or completely unrecognized pain. That underlies What about 60% of the underlying causes that we come across in dementia support Australia cases, there's usually multiple causes, though. And just because you found one cause doesn't mean that there's not another in fact, several. And in many of our more complex cases, we might identify five or six, or seven underlying causes of which pain is the leading one. Unfortunately, carer approach and the environmental impact on behaviours are a close second and third carer approach, I think is possibly a function of the education that our dementia carers receive, I do think we need to be educating our care staff across the aged care sector, a lot more deeply about not only dementia, but the behaviours that arise as a result of it and how to assess those. And as far as environment is concerned, when the changes that occur in a person's brain that alters the way they perceive or you and I might be considered, might consider to be a perfectly reasonable environment are such that we really need to give good thought to dementia design, and focus on environments that enable rather than building cruise ship like or hotel like concrete boxes, around a central nurse's station, I think if Environmental Design were adopted as a gold standard across the industry, that in itself would help the industry manage a lot of behaviours that might not otherwise occur. 

Colm

Steve, we're about to publish on measures and quantifiable impacts of this multi modal approach against data solely using medication. Now, we did talk earlier, but you're changing thinking to this type of approach. I was already a strong believer in the multi modal approach. But I have to say, the use of the word flabbergasted is a fair description of my initial response to the data. And what it's telling us. So much so that I had to check it again. Can you share this with us? 

Steve

Sure, I originally had cause to review the literature on the impact of anti psychotics, in particular, overall on behaviours and dementia. And the average effect size across all of the studies that have been done on the new generation of anti psychotics that have been with us for 20 years, is the effect sizes expressed in statistical terms, it's 0.2. That's a small effect size, statistically, blood correlates to about an 8% reduction in behaviours. If you were to give these drugs to everybody who was agitated, for example, the number of people that you need to treat with an anti psychotic to get any response, any meaningful response is about five. So in 80% of cases where they're prescribed, they don't have any effect at all, they have a significant effect in some. To contrast the answer your question the effect sizes that we're seeing in the outcome studies from DSA. We recently analyzed over 2000 cases, both the rating of their behaviours at the point of intake to the service and the point of discharge. And we found decreases in the number of behaviours, the severity of those behaviours in terms of the impact that they had on staff, and the frequency of behaviours, you know, across the board, in the region of between 50 and 70%. So it actually dwarfs the effect of anti psychotics, and we're very much looking forward to publish this data in a peer reviewed journal and get the knowledge out there because potentially it may well be a game changer. 

Colm

Steve, that figure is startling. There's no way I expected that when we started this work. We'll be discovering the incredible impact of multimodal interventions and how that changes how we use our psychotropic medications. I can't wait ‘til you publish this because it's clearly is going to be critical to how we support people. Tell me what in other countries is catching your attention? What are we learning outside Australia about what is changing the way we support people with dementia? 

Steve

Okay, see a couple of things in that regard Colm in the learnings that informed the development of the Severe Behavioural Response Team in 2015, for example, those recommendations came out of some very small pilot studies that were done on the use of what were called dementia flying squads. multidisciplinary team, non medical led teams are provided assertive outreach into care homes. There was a study called the Castle Bridge Study, I think in the US, which had half a dozen nursing homes in it. And they followed people up for three months and showed good outcomes. So international learnings from those small scale projects have informed practice in Australia, there was a big leap of faith to to translate a small scale pilot into a national service model. But it's been done and it seems to be working. The other trend that we've seen, has been the development of these small scale cottage models of residential care, and the effect that they have on providing an enabling environment, not only for people living with dementia who have significant behaviours, but for those who just have the illness, to maximize their quality of life. And I suppose those learnings about the power of small, well designed cottage like facilities have informed the development of the recent initiative of the Commonwealth specialised Dementia Care Program, for example, which emphasizes small unit models with a high multidisciplinary input and the the emphasis is on very much psychosocial interventions rather than the use of psychotropic medications. But with adequate medical oversight to provide backup and support for the care of a group of people who invariably have complex medical problems as well as their dementia. 

Colm

Steve, clearly, there's a lot still to be done. We all know the importance of looking after ourselves. So how do you sustain yourself? 

Steve

Look, I sustain myself by knowing that we're doing something good, that's really important. And that potentially has the way to shape in the future how dementia care is provided. I think this model of care has never been implemented to my knowledge on a large scale basis. I think those pilot studies are referred to in the states were within one county and follow up was for three months, you know, we've got data now from a national service that shows not only is it possible to do, or to roll out such a service on a national scale and the resources that it adequately, but we also have the the outcome data that demonstrate that this approach is really beneficial. And what keeps me going each morning is there's the knowledge that I'm a part of this, on what I hope is to be at the forefront of dementia care for the next century, and particularly in Australia, coming out on the heels of what will be the the findings of the Aged Care Royal Commission, due to be released in early 2021, we're going to have to do things differently. One of the key interim recommendations from the Royal Commission was to reduce the rates of psychotropic prescribing, and to decrease reliance on this. And I think it's only through producing data such as that which DSA can produce that we can change the mindset.

Colm

As we come to the end of this podcast, is there any things that for those people who for the first time are hearing about the program, or about your thinking that you want to leave them with some thoughts about what they need to do or need to change? 

Steve

I suppose the closing thought I'd like people to leave with is to try and imagine what their own lives might be like, in a few years time if they're living with dementia and to ask the question of themselves, how would I like to be cared for? And it's probably a good time before you have a diagnosis to devote. thought to that particular question, because it's only through the actions of people who have the power to implement change that we can change the way aged care is provided, in particular, the way in which care is provided to people with the BPSD for want of another word. I certainly wouldn't want my distress to be medicated away by a medication that is minimally effective, at best and harmful at worst. I really think we're on the verge of rethinking our whole approach to the management of altered behaviour in dementia. And I look forward to that future, appearing before me calm and I'd like to thank you for having me on the podcast today. 

Colm

Steve, I hope these podcasts are better supporting that change in mindset. Like you. I've certainly changed a lot in my thinking. Now we will link some of the useful articles we've referred to and resources in the text for the podcast. Steve, you're going to be joining us for a number of future podcasts, but for now, thank you. 

Steve

Thank you.

Colm

This podcast was a production of the Dementia Centre. I'm your host, Colm Cunningham and thank you to our dementia podcast team. This podcast is sponsored by the Hammondcare Foundation and you can find out more about them at hammond.com.au

Bye for now.