The Dementia Podcast

Talking Medication: looking at the person, not only the symptom

April 29, 2021 Professor Colm Cunningham
The Dementia Podcast
Talking Medication: looking at the person, not only the symptom
Show Notes Transcript

*May contain sensitive material. Content is not direct medical advice, for medical advice please contact your general practitioner regarding your particular situation. 

Join Colm and an expert panel in their discussion of the appropriate use of medication in the treatment of behaviours and psychological symptoms of dementia. This conversation is framed within the acknowledgment that medication is often used inappropriately in dementia care and notes how in the treatment of behaviours and psychological symptoms of dementia nonpharmacological interventions are the 'gold standard'. Within this, the panel shares their considerations on when the use of psychotropic medications are appropriate and the importance of tailoring medications to the individual, and treatment of specific symptoms. 

Members of this panel include; Associate Professor Steve MacFarlane, geriatric psychiatrist, and Head of Clinical Services at The Dementia Centre, Professor Susan Kurrle, geriatrician at Hornsby Ku-Ring-Gai Hospital and Curran Professor in Health Care of Older People at the University of Sydney, and John Nadjarian, Special Care Manager at Linden Cottage, HammondCare.

This episode is sponsored by Dementia Support Australia (DSA)

There are the Clinical practice guidelines and principles of care for people with dementia and the Dementia: assessment, management and support for people living with dementia and their carers guidelines to facilitate understanding of advice for the care of those living with dementia. 

Research that underpins the discussion includes: 

Colm Cunningham:

Hello to you, and welcome again to The Dementia Podcast where Today we're going to be talking about the role that medication can at times play in supporting people with dementia. In this episode, a clinical panel will talk about the appropriate use of medication for people with dementia. When changes in behavior can occur, it's very important to recognize that dementia is an incredibly complex and individual condition. In this podcast, we're really focusing on people with complex dementia, and at times where intractable behaviors occur and psychological symptoms that need our support and understanding, you will certainly hear from our panel, the many multi modal factors that can occur like pain, delirium due to infection, all of which must be treated first and foremost. While medication has a role the papers we attached also consider the multi modal approach that is significant to changing the behaviors that are caring and understanding better what is going on for the person. So what has medication got to do with it? In 2009, Professor Sube Banerjee and his team in the UK produced a report the use of anti psychotic medication for people with dementia, time for action, and they recommend clearly a reduction in the use of anti psychotic medication. Our clinical panel today will discuss this with you and share some significant reflections. We will in future be having a panel with people with dementia and carers. Please do consider your listening to this podcast because it will deal with some difficult issues and may be distressing. I'm pleased to welcome back Professor Steve Mcfarlane, our head of clinical services at the dementia center. One of his other hats is as the chair of the binational faculty, of old age Psychiatry at the Royal Australian and New Zealand College of psychiatrists, Professor Sue Kurrle, or Sue Kurrle as I'll be referring to is also a member of that group. She's also a geriatrician, and here in Australia is probably most recently known for her amazing work on "Older people's homes for four year olds". And our last panel member is John Nadjarian. He's a special care program manager at HammondCare's Linden unit. JOHN has worked with people with behaviors that are severe and impact on their care for many years. Often he worked with people who cannot be cared for in mainstream aged care environments. JOHN has been pivotal to the success of this program from its inception over 14 years ago. Welcome to you all. And, john, I'm gonna start with you because you raised the importance of having this podcast and to talk about when medication should be used appropriately. Why is that discussion important?

John Nadjarian:

Colm because everything I've read, everything I see is always that psychotropic medications are no good in old, the elderly, and certainly not in nursing homes. And it's all bad, we should to get rid of it. And that's not been my experience both the lived experience with my mum, and where I work in a special care program.

Colm Cunningham:

So Sue, Steve, was one of the people here in Australia who represented a royal commission into aged care, quality and safety. And to quote you, Steve, you did say, whilst there is certainly a place for psychotropic medication, it often does more harm than good. The importance of the right medication at the right time is obviously important. But Sue, you've obviously been somebody involved in trying to shape guidelines and form our best practice.

Susan Kurrle:

Yeah, I think people need guidelines to help help them think through the issues. And as john mentioned, often, psychotropics are just seen as the answer when we haven't actually looked at the symptoms and the cause, and then what the appropriate intervention is, and the the clinical practice guidelines for dementia, which are available on the web, if you just Google those guidelines, very simple in terms of outlining what should be done, talking about the very important non pharmacological measures, but also then talking about when you may need to use medications.

Colm Cunningham:

So when might you need to use medication So

Susan Kurrle:

usually, we'd say always try non pharmacological measures first and you look at whether the person's in pain are they hot? Are they cold? Are they bored? Are they lonely? What is are they constipated? What is this is this something we can do something about? That doesn't need something that's going to affect their brain quite significantly. But there certainly are some situations, I think where there are, there is a need for medications. And I think of someone who is having very distressing hallucinations. And they're not related to a delirium from an underlying bladder infection. They're related to ongoing changes in the brain. And for someone like that, I'd really look at a small dose of an anti psychotic, so but there'd be other situations. If someone's really agitated and you've tried everything. Our guidelines say very clearly that in a person with dementia, the use of a an SSRI, a specific serotonin reuptake inhibitor is indicated. And a drugs such as citalopram can work quite well, in this sort of situation.

Colm Cunningham:

John, I imagine when people are admitted to the specialist unit that you're involved in, they may be on some medication they shouldn't be on. But how do you manage that sort of situation, navigating between the right medications, and the ones that need to people need to come off

John Nadjarian:

Colm the sort of people that we accept, I guess, to put it simply is, they've been rejected by several other facilities. So they bounced around from one nursing home, gone to hospital, hospitals, tried to settling down, tried another nursing home, that's happened a couple of times, and there's a burden of medication where everybody's added medication to, to the regime. So when we get them, this may sound terrible, but the first thing we do is nothing. Just leave them alone, observe them for a couple of weeks, and see what they like, what they like, we try and do a lot of what they don't like we try not to do much of at all. And over a period of time, a short period of time we look at the extra medication and say, Well, if that person wanders, well, that's alright, it's their home, they're allowed to wander if they're up at night, well, that's no problem. We've got night staff we can accommodate that might give them a cup of tea and biscuits and involve them. And certainly we have had people who were nightshift workers, and they say, Oh, you know, I've got to go to work. And we say, Oh, yeah, that's alright, it's a public holiday don't have to work today. So if we accommodate them, rather than trying to get them to fit into our routine, then there is a, an opportunity to reduce medications. The other thing, which I have to mention is that as because we're tolerant, we tolerate a lot of behaviors. As the person gets older, as the disease progresses, often those the those behaviors start to diminish. As they diminish, we then adjust that medication appropriately, we reduce it or titrate it. So over a long period of time, and sometimes it could be 6 8, 12 months, the person has got reduced medications, because the behaviors have reduced.

Colm Cunningham:

Steve, how does this fit with your experience? Because you obviously work on a national program, where you're seeing various different issues where medication should or should not be used?

Steve MacFarlane:

Yeah, look, I understand that John sees the world from a very particular perspective, you know, that have a high dependency unit where people who who haven't been able to be effectively managed often in several other units by the time that John sees them. So I can understand why in particular on in John's units, and others like them, that with that select group of residents who have already demonstrated very severe and long standing behaviors that haven't been amenable entirely to non pharmacological approaches that John would see things that way. I'm not sure that John's experience necessarily represents the broader aged care landscape though that you know, the lower tiers of the dementia triangle or the behavior triangle, where there's a lot of lower level behaviors, which clearly are most appropriately treated with non pharma methods. So I still think that there's a significant over prescription of anti psychotics and psychotropics as a whole. But that's not to deny your point, John, in any way that medication can and does have an important role, particularly where those behaviors are more clearly organic. And I think Sue alluded to this in one of the earlier answers, you know, people who have hallucinations and psychotic delusions and severe melancholic depression, which aren't entirely caused by the environment, staff approach, boredom or other environmental factors, if you like that might make them amenable to psychosocial interventions. And I think this gets back to the debate about you know, terminology, behaviors reactive to the environment or are they a part of the disease itself. Certainly to me, delusions and hallucinations as true psychotic phenomena. They're not a product of the environment, they absolutely positively require a treatment with an anti psychotic if they actually distressing the person who's experiencing, so if you're prescribing on the basis of a hypothesis about what might be underlying the behavior, choose the least toxic drug first to test that hypothesis. And in a number of cases, what you will do is see a resolution of the behavior with an antidepressant rather than resorting to a stronger anti psychotic.

Colm Cunningham:

Sue can I ask? I, in my introduction mentioned the Banerjee, report of 2009. So that's very UK specific, you've obviously had involvement in lots of different countries. Are we just having unique problems in Australia, or how does a situation look internationally?

Susan Kurrle:

I know with my colleagues in the Netherlands, when I visit, facilities there, the the the language might be different, but the problems are the same. And clearly, we try the the appropriate psychosocial interventions, which are somewhat different in the Netherlands, perhaps to what we might use in Australia. But when it comes to those really severe symptoms, and a very distressed older resident, or often younger resident, then we do need to look at medication. And I would have to say there is a real similarity in our approach. And in our prescribing.

Colm Cunningham:

I'm interested in for all of you is there any medication you see people on the gets your goat for want of a technical term, because it's just inappropriate and should never be prescribed?

Steve MacFarlane:

Oh, where do we start on that? I think my my favorite, or my least favorite changes from time to time, because of having an overview of what's happening nationally, on a prescribing basis, I see different medications come in and out of fashion. I see a lot of Quetiapine, used as an anti psychotic, for example. And I think it tends to get used because it has a reputation amongst prescribers, quite rightly, for being significantly sedating. So to me, that's the reason it's being prescribed for the sedative effect rather than because of the anti psychotic effect. And it gets back to the point I made earlier about, you know what, if sedation is the goal, there's better drugs than anti psychotics to do it. And the reason Quetiapine particularly gets my goat is the prescribers seem not to realize that after a few days to a couple of weeks, people develop tolerance to the sedative effects of this drug, which then leads to a further dose increase and a further increase a couple of weeks down the track after that, until we get to the point where not only is the symptom still uncontrolled, but people are starting to get quite toxic effects from the side effects of this particular anti psychotic. So that would be my current pet peeve.

Colm Cunningham:

Any other pet hates John or Sue.

John Nadjarian:

No I don't have a particular medication I like or don't like, Well, I suppose I do in one way. Any of the sleeping tablets all they, what we do if we're going to try if someone is distressed by their lack of sleep, sometimes they'll try the the sleeping tablets. I'm quite happy for that to happen, but only for a maximum of seven to 10 days. If we can't get them in into a sleeping reasonable sleeping pattern by then stop it from from the last information I received, which is some many years ago, there's a 40% increased chance of falls in anyone that gets a sleeping tablet. So that's even younger people that learn the elderly. So if after seven to 10 days for sleeping tablet, if they're not in a good sleeping routine, stop the tablet. A bit like if you believe the person's in pain, sure, try them on various analgesia analgesics, but don't keep them on forever. And again, I suppose that leads obviously into psychotropic and anti psychotic medication as well.

Steve MacFarlane:

That's a great point as well, john, you know, another least favorite of mine is a situation where a person's prescribed a particular drug which is then ineffective. So rather than that drug being stopped, another drug's simply added until sooner or later people are on four or five different ineffective drugs. Whereas you know, basic principles of geriatric prescribing and Sue can correct me if I'm wrong here, would suggest that you start low, whatever drug you're using, you increase the dose slowly. And if a drug is not having an effect, you stop it. There's just no point persisting with something that hasn't done the job that it was intended to do was layering other drugs on top of it.

Susan Kurrle:

Totally agree, Steve. And it's very interesting when people are put on something and I'm my pet hate is haloperidol it is still used, they get parkinsonian. So they put them on something like benztropine, which is strongly anti cholinergic. So their confusion gets worse. So they then hit them with something else often a benzodiazepine and you get that that collection of medications that John sees in those people as they come into, into his unit. The other one I would mention though, and he mentioned John mentioned pain is that we do know that analgesics can can actually manage agitation when pain is the cause. And I think the certainly the the experience of DSA is very much that However, what we're seeing is that the GPS are going straight to opiate patches. And the problem is these people, they might be on a five microgram per hour patch. And the next time he goes, see it's 10. And then horror of horrors, it's 15, because it actually wasn't pain that was causing the problem. And so I think we do have to be very careful about how we, how we phrase addressing the pain. So yeah, it would opiates and haloperidol at the moment are my bugbear and the treatment of side effects with another drug, which gives side effects. So you might even use another drug.

Colm Cunningham:

Can I raise one or the other conditions where I do see that whole blend is happening as well, when the person is also depressed? And antidepressants have entered into it Sue? Do you see any of those issues occurring?

Susan Kurrle:

Yeah, and you see people who are put on mirtazapine, then they're put on venlafaxine, then they're put on a sleeping tablet. And then as John so rightly points out, they fall over and fracture their hip, they come in and they have a delirium. They're left on all those other medications. And then they put on Risperidone or haloperidol for their delirium, and then their their analgesia, and it is just an absolute horror situation. So I do think we need to be really, really careful about what we start because often what we start is never stopped.

Colm Cunningham:

So the What do you think is some of the ways we need to go forward? Steve, do you want to jump in?

Steve MacFarlane:

Look, I guess I'll have a look at the prescribing guidelines that we have when psychotropics should be used. And remember that the term psychotropic and anti psychotic are often used as though they're the same thing and then not, there's many different classes of psychotropics, each with their own uses. And I'll take the case of depression. In the setting of dementia. In medicine, we're all obsessed with evidence based medicine. We don't do something unless it's supported by evidence. The problem is, in this particular area is if you look at the evidence surrounding the effectiveness of antidepressants in treating depression in the context of dementia, it's not at all convincing, yet we still do it. The problem with the evidence base around prescribing or most prescribing the setting of dementia is the evidence base itself is very sparse, it's often incomplete and often misleading. conclusions are drawn from very small studies. But in my experience in relation to depression, somebody who's got very severe clinical depression, regardless of whether or not they have a comorbid dementia, they need an antidepressant. No psychosocial intervention or psychological intervention on its own is going to do the trick here. The other point I'd make in relation to depression in the context of dementia is that it's actually very hard to diagnose. in residential care. We use tools such as the Cornell scale for depression and dementia, which hasn't actually been validated in people who were very severely affected by dementia. Most diagnostic tools are reliant on symptom reports. And when you're very severely affected, you're not in a position to report what's going on, you're only in a position to express that through your behavior. And my own pet theory is that one of the reasons why SSRI antidepressants as a drug class are recommended by most prescribing guidelines as being one of the first line psychotropics to use for bpsd is that a lot of so called bpsd that we're seeing is simply the expression of the stress consequent upon an untreated but unrecognized depression. So when you treat a large group of people with so called bpsd, and their behaviors settle in a proportion of cases, because of citalopram, or whatever antidepressant, I suspect that what we're actually seeing in a lot of cases is that we're treating an underlying depression that hasn't been recognized. And of course, once that depression resolves, the distress that accompanies that resolves as well. So, you know, horses for courses, choose your drug tailored towards the symptom. And if you're not really sure what you're treating first, do no harm. So if you have a range of psychotropic drugs that you could try for a particular behavior. start first with the one that's least likely to cause the person significant problems. And you know Sue's comments about antidepressants and falls. Notwithstanding, but, you know, acknowledge that an antidepressant is often the least toxic of a range of different psychotropics that you could try first, if you're not sure which drug might be appropriate,

Colm Cunningham:

John, the importance of trial treating, obviously requires a partnership between you and the doctor who's visiting, and the staff and the staff

John Nadjarian:

and the family. So you need to build trust and say, to the staff, and to the family and say, Look, I think they're probably a little bit over sedated. Because as the as the disease is progressing, sometimes the most of the time the behaviors start to settle. So why don't we try withholding a morning dose of a particular medication, and for a week, and let's see how it goes. Now, I'll do that Monday to Friday, because I work Monday to Friday, so I can take responsibility for that. And that gives the staff support and gives the family support as well, saying, okay, someone is there overseeing it. And if in the first week, we don't have too many aberrant behaviors, and the second week and the third week, then after the third or fourth week, then I would approach the GP and say, How about if we cease that morning dose? Why do I do the morning dose or not the night dose, because if it did have an effect, and they fast asleep, we wouldn't see it. So it does take trust.

Colm Cunningham:

It's interesting, too, because one would assume as a person with a prescription pad that you've got the power here, but you were nodding your head at John's conversation there.

Susan Kurrle:

I think involving the family like that is just so so important. But we are the ones with the prescription pad. And it's interesting because the Royal Commission into Aged Care Quality and Safety has recommended that for anti psychotics and pointing out it's just anti psychotics, only psychiatrists and geriatricians should be allowed to initiate prescribing. That's quite an interesting situation. But I think it does bring up the issues of perhaps an expert or so called expert review of the of the, the resident with the behavior that's so distressing. And I have to say, talking to colleagues in general practice, they actually say, that is fantastic. It will get the staff off our backs. But we do need to have access. And that's when I say Don't forget DBMAS and SBRT's if it's really so it's the Pape, the teams that respond within the residential aged care facility, we need them to help as well,

Colm Cunningham:

Steve, so the idea that, if the Royal Commission's recommendation is followed through on is, what challenges does that perhaps create for you and other practitioners?

Steve MacFarlane:

The big The biggest challenge on the face of it is the practical one of workforce. There's there's only about 500 old age psychiatrists in Australia. And many of those are working purely in the public hospital system. So they're sort of out of the equation. Private practitioners, there's not many of those who will actually visit nursing homes, largely because of time and cost constraints surround running a practice that involves so my fear is that in the absence of a psychiatrist, or indeed a geriatrician, to authorize the prescription of an anti psychotic under the Pharmaceutical Benefits Scheme, which is the Australian Government's drug subsidy scheme for our international listeners, that prescribers might instead turn to prescribing old fashioned anti psychotics like haloperidol, outside of the PBS, which they can do quite easily on a private script. And these old drugs, they're, they're dirt cheap, because they've been around for many years, and they're out of patents, but they're also dirty drugs, they have a lot of side effects. And the perverse outcome of that particular recommendation might be to have GP saying, well, we can't access a geriatrician or a psychiatrist to prescribe this on the PBS. So we'll, we'll have to prescribe something outside of the PBS on a private script. And the result would be changing to a more toxic drug that will probably do more harm than good. If that's the route that's taken

Colm Cunningham:

Picking up on your point. Sue you obviously do know that the Dutch do value the importance of specialism because you've connected me with people like Wilco Achteberg. So why have they recognized that need to focus and specialize?

Susan Kurrle:

Yeah, well, the Dutch are always ahead of us. After all, I discovered Australia before the British about 200 years before the British and we were called New Holland for a while. But the Dutch have this wonderful specialty called elderly care physicians and these are physicians who are trained in geriatric medicine, in aged care psychiatry, in rehab medicine and in palliative care and it is such a wonderful combination. And these guys and girls are incredibly useful. They were originally just in residential care, but they now see people in the community and it would be wonderful to have that combination in Australia and I can see general practitioners actually being able to do extra training and be involved in this area. Because let's face it, the problems we've talked about already today, cover geriatric medicine, psychiatry, and a lot of these people are near the end of their life. So you've got the palliative care. And for those that we do get a bit better, we need that rehabilitation medicine focus. So to have that wonderful combination in Australia would be fantastic.

Colm Cunningham:

Steve, we know of various different projects. And, you know, Professor Henry Brody's whole project, which was all about de-prescribing are one of many interventions to ensure that people are receiving the right medication and that they're not staying on medication. Actually, my question is, what is the behavior that cannot be treated by medication? Can you call out some of the things you see, where you go, there's no medication for this?

Steve MacFarlane:

Sure, look, and I guess I'll use as an example the word agitation Colm because if you look at the approved indications for anti psychotic use, agitation is one of the approved indications. problem is that nobody can adequately define what agitation is or isn't. agitation can cover a range of behaviors from walking aimlessly, wringing your hands, calling out inappropriately for several hours during the day. None of those behaviors in my view, even though they fall under this definition of agitation are going to be modified by an anti psychotic, or by a benzodiazepine, or by a mood stabilizer. Or by any other psychotropic unless that psychotropic is acting by sedating the person to the point where they're no longer able to indulge in these behaviors. You know, we don't have specific anti wandering or anti handwringing medications. That's the nonsense. So agitation being an approved indication for the use of psychotropics is problematic because it's so poorly defined and where it is defined, the definition is so broad, that you could really justify the prescription of a psychotropic for anything that meets this technical definition, despite that, clearly being inappropriate. So we need to exercise a lot of individual judgment. When considering this concept of agitation and looking at the specific symptoms, and just reflecting and asking yourself a common sense question, you know, is there a reasonable chance that this particular symptom is going to be eased by the prescription of a psychotropic drug? And if people are disrobing or wandering or pacing? The answer is clearly no.

Susan Kurrle:

And I think we have to remember the physical causes of agitation. And I think of the number of people I see coming in from residential care with really severe constipation, and they're so agitated, and they're constantly trying to take their clothes off, because actually, they're telling us they need to go to the toilet. bladder infections can also do that. And it's really interesting that when you do check that out, you find that there really are some major underlying physical problems that you can do something about. And you don't have to use an anti psychotic, it's an enema or an antibiotic.

Colm Cunningham:

And with some another reason for taking our clothes off is there's some of the parkinsonian drugs that can make you overheat or that right.

Susan Kurrle:

And certainly, yes, I think all people with dementia will have an altered sensation or an altered temperature. I guess they don't experience the temperature in the same way and so they feel hot or cold. But yes, they try to take their clothes off for one reason or another.

Colm Cunningham:

Steve, one of the papers we're attaching to this podcast. It talks about, obviously, the dementia support Australia program and the fact that the neuropsychiatric inventory is indicating a multimodal approach is a very important one. What's your final reflections on the things we need to be thinking about going forward?

Steve MacFarlane:

Look, in terms of psychotropic use, I think it's not a question of all good or all bad. No drug in itself is inherently good or inherently bad. It just is. But it's the purposes for which the drugs are used that needs to be considered in terms of deciding whether something is good or bad. And the key point is to recognize that the choice of drug needs to be tailored to the symptom. On the basis of asking yourself that question, is there a reasonable chance that this behavior will respond to an anti psychotic or an antidepressant and secondly, and probably more importantly in the context of the aged care system, the drugs need to be reserved for those situations either where the symptom is clearly organic hallucinations, delusions, or where all other reasonable avenues to manage the behavior have been trialed and of have been demonstrated to fail. And you know, I guess that relates back to John's cohorts in the home that he runs. So where psychotropics are commonly used, because the cohort that John managers are treatment resistant, resistant and have failed in the system at a number of levels. So they do have a place and it's an important place. But it's important to realize that the place that they have, has a place as well, if that makes sense.

Colm Cunningham:

Sue?

Susan Kurrle:

yeah, and you know, to reiterate what you said, Steve, it's very individual. And I think we have to be so careful that we look at each person, not at the symptom, generally. And when we look at agitation, as you said, it's not defined, look at what it means to that person, and then treat accordingly. And I think raising awareness, awareness, like this podcast is doing is just so important.

Colm Cunningham:

John, you started quite personally, you talked about your mum, and all care is personal, I guess what are your final reflections for the families who are sitting listening elsewhere in the world,

John Nadjarian:

we need more special care programs, we need a place where the person is not rejected, we need a place where the person's behavior is accepted and tolerated.

Colm Cunningham:

Thank you so much to Sue, John and Steve for joining the dementia podcast. I really appreciate your openness and giving us your perspective on the appropriate use of medication and clearly that emphasis on first thing is to understand what's going on for the person. To our listeners. Please note that the general discussion about medication was just that it is not meant to inform specific prescribing, but more a general consideration of when to use medication and the consideration of the right medication in the right context. Thank you to the dementia center podcast team for their great research in developing this content for us today. As always, we like many important papers to you including Sue's report on guidelines, that she notes are important. And the nice guidelines from the UK which I think are also really useful, as well as some papers that Steve and I have worked on with colleagues, including when responsive and reactive meets organic, a paper that looks at some of the language around behaviors and psychological symptoms. Thank you so much for joining us as always, and I look forward to joining the next dementia podcast very soon. Bye for now.