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Introduction Speaker: Hello and a warm welcome to everyone who's joined us here today. It's very exciting to have you with us. Dementia Australia would like to acknowledge Aboriginal and Torres Strait Islander peoples as the traditional custodians of Country throughout Australia. Today, it is my pleasure to introduce you to our presenter, Scientia Professor Henry Brodaty AO. Professor Brodaty is a researcher, clinician policy advisory and a strong advocate for people living with dementia and their carers. Thank you, Professor Brodaty.
Prof. Brodaty: It's my pleasure to be talking to everyone about behaviours and dementia. So, this is what I'm going to cover. What are these behaviours? What should they be called? How common are they? Why are they important? How long do they last? And why did they occur? The message is 'don't blame the person.' Can they be prevented? Can people with these behaviours be helped? And in which ways? And if you are a person living with dementia, what can you do? So, let me start with terminology. This is an issue of controversy. Right now, they're called 'Behavioural and Psychological' symptoms of dementia or BPSD. But people with dementia have complained that it medicalises this. And they've, and various other terms have been proposed, like 'challenging behaviours,' 'behaviours of concern,' 'responsive behaviours.' But the one that is most gaining most popularity is 'changed behaviours’ which doesn't have any connotation. We tried changing BPST to just 'behaviours' and not worrying about a description of them as behavioural symptoms, and psychological symptoms because some symptoms are not behaviours. Which I'll explain in a minute.
There are some acronyms I'll use in this talk. PLWD is 'people living with dementia.' CG is 'caregivers' or 'carers' and Pt. is 'patient.' How common is BPSD? At least 90% of people with dementia will have some behaviour at some time. It depends how you define it. I mean, who hasn't been irritable? Who hasn't felt apathetic? Who hasn't had depression? In a community study from the US, two thirds of people living with dementia had some behaviours but so did a third of people without dementia. Rates are similar in developing countries, but they're much higher in residential care. Here are some behaviours listed alphabetically and, as you can see, many of these behaviours can be quite common in the non-dementia population. But they are more common in the population with dementia. Some are more distressing than others. We'll talk about those. They're not only distressing for families and for staff in nursing homes, they're distressing for the person themselves. Who wouldn't be distressed to have hallucinations? Or delusions that someone is trying to steal things from you, or trying to harm you? Or feeling trapped or feeling unable to walk around, because you've been caught wandering? So, they're important. They're important because they increase the cost of institutional care. They increase the likelihood of going into a nursing home. They increase the likelihood of receiving medication, particularly antipsychotics, which you know, can have side effects. They're common, they're costly and they cause distress.
So, why do they occur? So, this series of pictures describes some of the reasons. They may be because things are changing in the brain itself. It may be because the person's having pain. It may be because the person is just thirsty or hungry. We see that in hospitals where people are not well looked after if they have dementia. It may be because they have a urinary infection. It may be because they're just very ill. They may be even in the palliative stage. Or it may be an issue to do with communication and that's a big issue. Not knowing how to communicate with someone and talk to them in such a way that can inflame behaviours.
As a clinician, I like to think about things in this sort of framework. Is it things happening that are; starting from the left bottom corner. Is it biological? Things happening in the brain? Or things happening outside the brain? Is it psychological? Is it the interpersonal interaction? Or is it something happening in the environment? Let me give you some examples. So, it can be in, starting again at the left bottom corner. It can be brain damage, infection or pain. It could be triggers or feedbacks from others. So, for example, a person calling out constantly, "Help, help, help”, and when they're quiet, nobody gives them any attention, but when they're calling out, they get attention. It may be their needs are unread. And this we often see in institutional settings, particularly hospitals and nursing homes. Or it may be there's too much in the way of stimulation or too little.
So here are some of the biological causes outside the brain. I mentioned urinary infection and pain. Medication could be something as simple as constipation, or somebody losing their glasses or their hearing aids - not an uncommon event. They have basic needs, hunger or thirst, or they may be frightened. The point is, there is a reason. A person can have a behaviour because there's a reason. Don't blame the person. Work out, what is the person communicating? And these three pictures are stories. Not all are my patients. Stories I've heard or I've actually been involved with. So, the milkman, well, we don't have milkman these days. This is from a long time ago, and the milkman was in a nursing home and every night he would go to bed and the nurses would try and shower and put him to, no they wouldn't shower him. They'd try to put him to bed in his pyjamas and he would get aggressive and rejected. Finally, they talked to his wife, and they said, "No, no, no, don't shower him in the morning, shower him in the evening. Don't put him in his pyjamas, put him in his tracksuit because then when he wakes up at 4:00am he's ready to do his milk run." That was his routine. Presto. Then the aggression disappeared.
The second person was a patient of mine, who was being very aggressive to his wife and hitting her and cursing. I actually went to the home and saw him, and he had a very protruded belly and it turned out he was in urinary tension. He couldn't pass his urine. I don't know if you ever had this or know someone who's had it, it's intensely painful. He was taken to hospital, catheterized and everything settled. The third one is a story of a man who was admitted to a group-home, and he was a history of being aggressive and absconding from nursing homes. Several of the nursing homes. The nursing unit manager, very wise woman, knew that he was a painter and gave him a large can of paint, a very small brush, and asked him to paint the fence. Took him three weeks. Small brush was the key. And then of course he had to do another colour, and of course he didn't abscond, he settled in, he felt quite comfortable. So, understanding the person is really important.
So how can we prevent BPSD? 'Communication, communication, communication.' It's not just the behaviour, not just what you say to someone, it's how you say it. Talking to them as an adult, not talking down to people. Understanding the person. We know that a family carer training program can reduce behaviours and Meredith Greesham, who's pictured here, and I, ran such a training program in the late eighties, which proved successful in reducing carer stress and keeping people at home longer. And then Meredith had the right idea, let's do it again, but combine it with respite care. We call it ‘going to stay at home' program and it proved very successful. It kept people at home longer and it was found to be cost effective. Here are some other examples. The woman on the left, is a picture I've just gotten, but the story is of a woman who was very aggressive with her husband, agitated. Her life was the kitchen. She loved cooking, but she was forgetting ingredients. She was getting things in the wrong order. She was burning pots and the husband had taken over. So, we talked to him about this and decided that she really lacked executive function to organise herself. So, by her husband being her, as it were, 'proxy frontal lobes', he could be with her in the kitchen. She could be doing the cooking, and he could be organising it for her, and it worked brilliantly. Took a bit longer, but it saved a lot of time in dealing with her aggression and agitation. She felt useful again. The picture on the right, is Iris Murdoch. Iris Murdoch is a brilliant author, philosopher and her husband was also a professor of philosophy and or literature, I'm not sure. She refused to shower and what the husband did was instead of forcing her to shower, he entered into her world. He did things as she wanted to do them, and things were peaceful. And it was quite a challenge because the house was in squalor. And she, he didn't shower for some time either, so, but he was willing to do that.
So, if a behaviour occurs, what do we do? Well, as a clinician, we want to know: What does agitation mean? What does aggression mean? What's actually happening? I need a clear description. I need to identify the target behaviour. And does it require intervention? One lady was having hallucinations every afternoon of children coming into her bedroom. The family and the staff were worried about this. But she didn't need treatment, she actually liked seeing the children. She just minded they didn't eat the lemon; they didn't eat the biscuits or lemonade she prepared each day. So, she was having visual hallucinations, a part of a Lewy body dementia. It didn't require antipsychotics, it required counselling for the family and for the staff. I like to have a diary of the behaviours. We don't treat blood pressure without readings. We don't treat behaviours without knowing how often they occur, how severe they occur, what's happened before, what's happened during, what's happened after the behaviour. We exclude the non-dementia causes as I mentioned, like urinary infections or pain and correct sensory impairment. And then we look at those four quadrants I showed you before.
The environment. The one on the left here, is an institutional setting. Highly polished floors, harsh lights. The one on the right is the same corridor, softer lights. They've got carpet on the floor; they've got some soft furnishings there and plants. And it changes the whole tenor of where they are. Here's a room, and I go into nursing homes still where there are four beds in one room versus the one on the right. We all know how we'd like to live. It's often a financial decision. The room on the left is a typical nursing home where people are sitting around the edge of the room, hypothetically. Something's on TV, they're not watching. It could be something as inane as Humphrey B Bear. The one on the right is where they're actively engaged in activities. So, the environment is important. Many of you will have seen the TV series, the 'Old People's Home for 4 Year Olds' and you saw old people in a home come to life as they interacted with four-year-olds over four weeks. It was a therapeutic intervention. So how do we intervene? We have to modify the environment, so we don't lock, we don't tie people down because they're wandering. We provide them secure grounds for them to wander in, if they're in a nursing home. Getting that right level of stimulation is important.
Having space, having privacy. Personalising their space as well. Having secure grounds, making it home-like, non-institutionalised. And that's attending to colour furnishing, architecture, lighting. Small seems better and the right resident mix. Evidence, for intervention is that getting the right level of stimulation, having good visual access to toilets. Outdoor access with staff and small unit size. So having outdoors. I saw a patient who was in a very nice nursing home, and she couldn't go out. This is a woman who was a Commonwealth runner, she was a champion runner, and she couldn't go outside. Pets, robotic pets, dolls. They've all got some evidence. The evidence is pretty small. Small samples, small studies but it's worth a try.
The families can be the therapist. And in a systematic review we did, we found there was a modest effect size for decreasing behaviours. And it's a bonus, a small effect for decreasing carer stress. So, the family carer, this is for people living in the community, the family carer can be the therapist. They know the person better than anybody else in the world. What they need, is some help in knowing how to 'be the therapist'. Here's an example: this was a study from Seattle. And what the researchers did here is they taught the families to do behaviour therapy, and they did something like pleasurable events. This is for people living in the community. What did this person used to enjoy? And they did this in people with Alzheimer's disease and depression. And so, they used to enjoy going for a walk or having a coffee or listening to certain music. And so working out a hierarchy of different activities, going from the simplest one to the highest one and showing that that would improve their depression. In fact, it did. Well, they also taught them problem solving techniques. Against controls, both behavioural techniques reduce patient depression and reduce the numbers of diagnosis of depression and as a bonus, again, carer's own depression scores improved.
Lynn Chenoweth, led a study which I was part of, looking at training nurses in person-centered care. So, on the vertical axis, is agitation. And on the horizontal axis, is time. So, the first set of bars, here, is before the intervention. Intervention went for four months. Then there was, no intervention. Sorry, no intervention. And this was follow-up. The blue line is usual care. The green line is what they call 'Dementia Care Mapping.' I won't go into that. And the red line is 'Person-Centered Care.' And we see agitation levels falling. Both intervention groups were significant. And the person-centered care was quite, was very cost effective. Every point reduction in agitation, it costs $6.00. Which is very little. And you see that even after the intervention stopped at four months, at eight months, it was even better; the agitation levels. Well, what is this person-centered care? It's pretty simple really. It's respecting the person, putting their needs before the needs of the organisation. Just because everyone else gets a shower at 7:00am in the morning doesn't mean the milkman needs to get his shower at 7:00am. Because he prefers to get a bath at 6:00pm. It's talking in an adult way. It's finding the key to that person's needs and wishes.
There have been studies with music therapy. Particularly looking at the effect on anxiety and agitation. And it was interesting for me, that you know, you can involve people in music just listening to it, or you can get them playing triangles or drums or tapping away at things. But actually, listening was more effective. Another technique is to give people their own musical playlist. We all have our preferences. If you're looking after me, don't give me Country & Western when I go into a nursing home. So, I like different sorts of music. Some of you'll have seen this video of Henry. If you put in 'Henry, music therapy dementia' into Google, you'll find it. It's an amazing thing. And Henry is sitting there, in apathetic state and they put on these headphones, and they play Cab Calloway, which is his favourite jazz music. And his eyes become like saucers. They're huge. He becomes animated and he just jumps with joy. That was the key to him. Other people have tried humour therapy, volunteers, music, singing, dance therapy. Integrating kindergarten or mothers of their baby's nursing in the nursing home as well. All have shown some benefit, but the studies have not been particularly high quality. Except for ours, of course. And that was sort of humour therapy led by myself, and Lee-Fay Low. And we showed a 20% reduction in agitation, which is the same effect size, which is a statistical term for how well an intervention works as antipsychotic medications. And after certain adjustments we showed decreased depression, improved quality of life. Laura Gitlin in the US, has worked with occupational therapists looking at a home-based OT intervention. And at four months, showed a decrease in the problem behaviours and increased activity engagement. The carers found less arguments. They found that they were spending less time doing things or being on duty. And felt more in control and more efficacious.
Let me turn to drugs. Well, how effective are medications for BPSD? Well, the answer's not very. And the problem is there are side effects. So, there have been two large trials on antidepressants for depression, in people with dementia, in the community. And there was no difference to placebo. Does that mean we don't use them? No. These are studying big groups of people and showing on a group basis, there's no difference. But I still find that individuals who may benefit from it, and sometimes the antidepressants benefit is more in the realm of reducing anxiety or agitation. In a review done by Gill Livingston in the Lancet, she showed that psychosocial treatments are more effective for depression, than antidepressants. Antipsychotics. Well, they're the 'bogey man.' We know that they have serious side effects but sometimes we do use them. I use them, I'll try not to, and certainly not as a first line. They have modest effects for aggression, agitation. They're more useful for psychosis, particularly delusions and hallucinations. They don't work for 'calling-out'. They don't work for stopping people going into other people's rooms. There are restrictions on PBS prescribing. And these have increased recently. Why? Because of the side effects. It's not just the Parkinson-like side effects and the slowing of movement, but there's an increased risk of stroke and of death. Over 20% of people in nursing homes are on antipsychotics. One nursing home I went to, 50% were on antipsychotics. Another one 5%. It's not like the residents were different, it was the management strategies. There are many other side effects of antipsychotics and time will stop me going through them. But you can look through those and I'll just stop talking for a moment.
The ones we worry most about, of course, are stroke and death. The increase in risk of these is small. But of course, it's such a serious side effect that we don't want to do that. We did a study called the 'HALT' study and you'll see why from the title there. Our aim was to deprescribe antipsychotics. And we did this by training the nurses in person-centered care. By having one session with the GPs, with our academic GP, Dr. Allan Shell and by talking with the community pharmacist, and we were able to get 85% of people off their antipsychotics within three months. And at 12 months, 75% was still off their antipsychotics. Did the behaviours re-emerge? No. Were regular medic, like Valium or other benzodiazepine used as substitutes? No. There was some PRN benzodiazepine use, that's as needed. Equivalent to one milligram of diazepam per month, so very little. Some people will re-prescribe or refuse to de-prescribe and this was usually driven by the staff, by the families. We concede that there may be a subgroup who benefit from medication. We don't, we can't really identify who they are. We are not even sure if that's as high as that. Benzodiazepines can reduce agitated behaviours in the short term. If we're going to use a benzo, then we prefer Oxazepam or Serepax or Lorazepam or Ativan because they're short-acting. Diazepam or Valium is a long-acting one. It accumulates. It has a half-life of 72 hours rather than just a few hours. We're going to use one of these drugs, which we only use them for short periods at low doses. They're not recommended because of the side effects of sedation, falls, confusion and amnesia.
This study is not a controlled study, it was an open label study, but it's been very influential. And what these researchers did, is they took large number of residents in 60 nursing homes, who were not known to be in pain, and they put them on analgesics. These are people with quite severe dementia who were highly agitated. And there was a stepped program for analgesia. But over two thirds of the residents were just put on paracetamol. That's Panadol, one gram, three times a day. Two tablets, three times a day. The agitation score dropped significantly. They did this for eight weeks. At the end of the eight weeks, they stopped the analgesics, and the agitation scores went back up again. So, the neuropsychiatric inventory is a way of measuring behaviours. It fell, and even though they didn't have pain as an indication for the analgesics, you can measure pain using facial expressions. They found that that also significantly reduced. So, it's always worth trying a trial of just Panadol, two tablets three times a day. It's safe. There are many new drugs being developed. Dextromethorphan, which is a cough mixture. And Quinidine to slow its metabolism has been trialled in the US, just a couple of trials. Cannabinoids, there's been a good study of that. There's are some newer antipsychotics, and for apathy people, have used stimulants.
So, I'm coming to the end now. Legal consent. We did a study looking at "Do people with dementia give informed consent?" Well, if they're in a nursing home and have quite severe dementia, they really can't. And the law, at least in New South Wales, is the person responsible must give consent in writing. So, we did a survey of three nursing homes and found 77 residents who didn't have capacity, who'd been stabbed on a psychotropic, in the nursing home, and found only 6.5% had given written consent. And 6.5% there was an attempt. So, 13% or one in seven. Now my message to you if you're a family carer. If it was your child in a nursing home or in a hospital, you will take your responsibility. It's just as much your responsibility as the doctors and the nurses to make sure that you give consent. You should be asking about the medication. Really, they shouldn't be giving medication without your consent.
So, can we prevent BPSD? To some extent, yes. By having a good environment, person-centered care, the right level of stimulation, and treating physical disorders quickly. There are a number of resources out there. We did a review for the Dementia Behaviour Management Advisory Services, or DBMAS, A Good Guide to Practice. And that's available on that website and it's available as a guide for family carers as well. We had apps, which were available on iPhones and on Android. iPhone, the iOS, they changed the operating system so we're trying to get some money to update it for there but everything's available online. And the app for carers, family carers, was 'Care4Dementia' using the number four. And for clinicians, it was called BPSD Guide. We also develop posters for Aboriginal communities with the Aboriginal communities. And we develop programs for the L-G-B-T-I community. So, if you are experiencing behaviours, you're a family carer, a GP or a nursing home, you can call the Dementia Behaviour Management Advisory Service or you can call Severe Behaviour Response Team for very severe ones. Usually, it goes through an escalation process from DBMAS. In many areas there are flying squads of geriatricians or in reach. And there are now specialist dementia care units being rolled out across the Commonwealth. For people with very severe behaviours. If you are a person with dementia, this is quite frightening. You don't want to be drugged up for behaviours that because someone doesn't understand you. Maybe you should let your family know your wishes, if this happens. Set up an enduring guardianship. Enable the people that you trust to help with decisions for treatment and let them know what your wishes are.
If you're a clinician or a family. The message is, "Why is this person behaving this way now?" Don't just label it. Use different approaches, often together. We need to be creative. We need to document what we're doing and what the outcome is and work in conjunction with the families. And if you're a prescriber, we need to review at least every three months. And within three months, it should start trialling reduction of the medication and seeing if it's still required. So, conclusion. Change behaviours, BPSD, whatever you want to call them, they're common. We can prevent them, by the measures I've mentioned. If they are occurring, check for the cause, is it biological, psychological, interpersonal or environmental? Drugs have effects, but they do have adverse effects, AEs. Psychosocial treatments have increasing evidence for their benefit. The problem we're finding, is implementation. Getting people to do it or finding the staff to do it. This needs policy recognition, accreditation standards, government policy and research support. Thank you very much. Copies of the talk will no doubt be available through Dementia Australia and copies of this talk and other talks will be available on our two websites for the Dementia Centre for Research Collaboration, and our Centre for Healthy Brain Ageing.
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