Mood and behaviour changes
Transcript
[Beginning of recorded material]
[Title card: How dementia changes behaviour. Learn about dementia series]
Narrator: Learn about dementia, changes in behaviour - how dementia changes behaviour. In this video, you'll learn about some of the common behaviour changes that may occur when a person has dementia. Reasons for the changes and some general guidelines for coping with them are covered. There are many reasons why a person's behaviour may be changing. Dementia is a result of changes that take place in the brain and affects the person's memory, mood, and behaviour. Sometimes, the behaviour may be related to changes taking place in the brain. In other circumstances, there may be changes occurring in the person's environment, their health, or medication that trigger the behaviour. Perhaps an activity such as taking a bath or shower is too difficult, or the person may not be feeling physically well. Dementia affects people in different ways. Understanding why someone is behaving in a particular way may help.
Patient: Vincent, my husband's such a fantastic guy. He's so even tempered, but just lately, he's been really aggressive and I don't understand why.
GP: It's actually very common for people diagnosed with dementia.
Patient: He seems to be okay one minute, and then he becomes really aggressive, and I know it upsets him, but it sure upsets me as well.
GP: So, it seems to me that you are almost dealing with a different person now, and these changes caused by the dementia, they tend to affect that person's memory, that person's mood, their emotions, but also their behaviour. So the person's dementia doesn't allow them to work and cope with their environment as they used to in the past. It might be also important to remember that the person might have physical health conditions that might be affecting their behaviour. For example, an infection or a hearing problem. The person with dementia might not be able to verbalise that they are not hearing well, or they might not be able to verbalise that they are in pain because the dementia is affecting their ability to register this kind of information.
Patient: I hadn't even thought about that. I'm just thinking now, maybe I should get my husband to come along to the GP and we could have him checked out.
GP: Yes, yes. Fantastic idea. Definitely. And it might also be a good time to flag things like depression as well, because it's not uncommon that the person with dementia might look depressed, and might feel depressed, and might be depressed, actually.
Patient: It's pretty upsetting for me, but I can see my husband's really upset about it as well. He definitely knows that something's amiss, and I hadn't really thought about it from his perspective before.
GP: Well, I hear that you feel a lot for him. And one thing again, maybe that if you want to take home message is that he's not doing it on purpose.
[Title card: Key points]
Narrator: Changes in behaviour are common. Changes can be triggered by dementia, coping with the environment or medical conditions. The behaviour is not intentional. Contact Alzheimer's Australia, Vic, for support.
[Title card: National Dementia Helpline 1800 100 500. For language assistance call 131 450]
[Title card: With special thanks to Dementia Australia staff]
[Title card: Dementia Australia logo]
[Title card: Visit dementia.org.au]
[END of recorded material]
Dementia can change the way someone feels and behaves. These changes might be subtle or dramatic. They might come and go, or persist. They might lead to the person feeling, saying and doing things that are very out of character.
These changes aren’t deliberate, but they can be upsetting for the person with dementia, and for the people close to them.
There are many reasons why a person’s behaviour may change, including:
- physical changes in the brain caused by dementia
- inability to communicate as well as they used to
- changes in their environment, like temperature, noise, crowds, light, large rooms or open areas
- changes in abilities like vision, hearing or thinking, that can make ordinary tasks overwhelming and stressful
- changes in health, due to medication side-effects, not feeling well, or an underlying illness
- physical discomfort, like hunger, tiredness, dehydration, being too cold or warm, constipation or the need to go to the toilet
- emotional or physical needs that aren’t being met.
Kinds of mood and behaviour change
Every person experiences dementia differently, but common mood and behaviour changes include:
- Anxiety
Someone living with dementia might become increasingly anxious. Learn about the causes of anxiety, and what to do if the behaviour occurs.
- Disinhibition
Disinhibition is when someone behaves inappropriately. Learn more about disinhibited behaviour in people with dementia and what to do if it happens.
- Agitation and aggression
People living with dementia can sometimes become agitated or aggressive. These are some of the reasons why, as well as advice on what to do if it occurs.
- Sleep and dementia
People with dementia can often have problems with their sleep. Learn why this happens, and tips to help them to sleep better.
- Delirium
Delirium is a state of severe confusion. Learn why delirium happens, and what you can do to help to manage it.
- Hallucinations and delusions
Dementia can cause people to sense or believe things that aren’t real. Learn about hallucinations and delusions, and what to do if they happen.
- Shadowing
Sometimes, a person living with dementia might constantly follow you around or “shadow” you. Learn more about shadowing and get some tips on what to do when this occurs.
- Wandering
Some people with dementia wander away from home. Learn why this happens and what to do if someone you care for wanders.
- Depression and dementia
Depression is common among people living with dementia. Learn about the causes of depression, and what to do if the condition takes hold.
- Restlessness
People living with dementia sometimes become confused or restless in the afternoon. Learn why it happens and what to do when it does.
What you can do
If you notice changes in the mood or behaviour of someone close to you with dementia, it can help to start keeping a diary or log of what’s happening. It can help you better understand what’s triggering these changes and what works to help them. Make a note of:
- what specifically happened: how they changed, what they did or said
- when it happened
- who was involved
- what was happening around them just before it happened
- who was affected
- how you and other people responded and whether it helped.
Go over the events you’ve listed regularly to look for patterns, causes, and useful strategies to help. You can also show your diary to your doctor or specialist for advice.
Tips to minimise changes in behaviour
- Provide a calm, relaxing environment.
- Keep the person’s environment familiar and their routine regular.
- Stay neutral if they tell you something that seems wrong or untrue. Try to avoid correcting them.
- Allow plenty of time for communication and daily activities.
- Avoid punishment. The person may not remember the event and be unable to learn from it.
- Stay as calm as you can, especially when they can’t.
- Speak slowly, in a quiet and reassuring voice.
- Try to distract them with a conversation or activity they enjoy.
Responding to changed moods and behaviours is a process of trial and error. There’s no one solution that works for everyone, every time. But the more you notice, and the more things you try, the better equipped you’ll be to help them and yourself.
It’s okay to take care of your own health and happiness. If you're struggling as someone who cares for a person with dementia, contact the free, confidential National Dementia Helpline on 1800 100 500, any time of the day or night, for information, advice and support.
Transcript
[Beginning of recorded material]
[Title card: Responding to changes in behaviour. Learn about dementia series]
Voice-over: Learn about dementia, changes in behaviour, responding to changes in behaviour. In this video, you will learn about some of the common behaviour changes that may occur when a person has dementia. You will see a specific technique that can help you to understand changes in behaviour.
Dementia causes damage to the brain. Over time, the person will have changes in behaviour. These might include asking the same question over and over again, being argumentative or irritable, refusing to change clothes or shower. Some changes in behaviour may simply wear you down, while others may place the person with dementia and you at risk, and reduce the quality of life for all.
Alzheimer's Australia, Vic has developed the CAUSEd model to help you identify triggers and reduce these more concerning behaviours. CAUSEd is an acronym for communication, activity, unwell or unmet needs, story, environment, and dementia. All of these elements can contribute to a person's behaviour. Let's see the CAUSEd model in use.
Speaker 1: It's really getting to be unbearable in the evenings. I have my husband, Tom, who has dementia, and my two boys, teenage boys, or our boys. And at nighttime, we're all in the family room and the boys are doing homework, and practicing piano, and Tom is not wanting to help them at all with their homework, and he's getting quite agitated, and he wants to turn the TV on, and he wants it loud, really loud, and that's annoying the boys. So, there's a lot of shouting backwards and forwards with the boys, and he's shouting so much that they want to go to the bedrooms. They don't want to be in the family room.
[Text: Check how you are Communicating]
Speaker 2: So, probably due to the dementia affecting the brain, Tom is probably not able to understand language as he used to do before, so a good strategy would be to, first of all, talk to him face-to-face, in a low tone of voice, in a patient tone of voice as well. And probably, when we are talking to him, he's just breaking things down step-by-step, not giving all information in one go.
Speaker 1: So hopefully that might help.
Speaker 2: Hopefully, that might, it usually does. It works pretty well because then we are making the communication easy for the person, and simple for the person with dementia.
Speaker 1: Actually, that makes quite a lot of sense talking to him in a calm manner, so I will give that a go, but my issue is that he still doesn't want to help with the homework, and the homework is quite a big issue for the boys. So what am I going to do about that?
[Text: check that the Activity is suitable]
Speaker 2: It seems to me that doing homework right now might be a bit too complex for him, and a good way to work around that is to break the activity in smaller and easier steps. So, if you want him to be engaged with the boys, it might be a good idea to find an activity that will be meaningful for him and for the boys.
[Text: Check if the person is Unwell or has Unmet needs]
Speaker 2: The person with dementia might be having health conditions, and therefore, it is a good idea that the person is seen by a GP or his specialist, just to make sure that the health concerns are addressed.
Speaker 1: Good idea.
Speaker 2: Another good way would be to look at what the person used to do in the past, and use these as resources to inform you now around his unmet needs.
Speaker 1: Like different activities that he used to do, sport or friends?
[Text: Understand the person’s life Story]
Speaker 2: Perfectly right. It's extremely important to understand the whole story behind them, to understand what they used to do, what they like doing. Their family background, again, what was meaningful for them in the past.
[Text: Look at the Environment in which the behaviour occurs]
Speaker 2: It's also very important to bear in mind that the environment around him might then be quite challenging.
Speaker 1: Too busy.
Speaker 2:
Exactly. It could be too busy – modify the environment to suit the person with dementia.
Voice-over: Using the CAUSEd model can help you understand what might be triggering changes in behaviour. Check the way you are communicating, make sure the activity is suitable, check the person is not unwell or experiencing pain, or other physical problems. A person's life story or experience can give you clues about their behaviour. Check the environment is not too busy or overwhelming. Sometimes, the only explanation for a person's behaviour is dementia.
[Title card: Key points}
Voice-over: It is important to acknowledge how the person with dementia is feeling. Look for causes of changes in behaviour. Get help to develop strategies to cope with the changes in behaviour. Contact Alzheimer's Australia, Vic for support.
[Title card: National Dementia Helpline 1800 100 500. For language assistance call 131 450.]
[END of recorded material]
Help with changed mood and behaviour
If changes in the mood or behaviour of someone close to you with dementia are causing them or you distress, there is help available:
- Call the free, confidential National Dementia Helpline any time on 1800 100 500 information, advice and support.
- Call the Dementia Behaviour Management Advisory Service on 1800 699 799. They support people living with dementia who experience changes in behaviour that impact their care or the carer.
Transcript
[Beginning of recorded material]
Maree: Hello, and a warm welcome to everyone who's joined us here today. It is very exciting to have you with us. Firstly, I begin by acknowledging the traditional owners of the lands on which we're all joining from today, and pay my respects to Elders, past and present. Today, it is my pleasure to introduce to you our presenter, Scientia Professor Henry Brodaty AO. Professor Brodaty is a researcher, clinician, policy advisor, and a strong advocate for people living with dementia and their carers. At the University of New South Wales in Sydney, he is Scientia Professor of Ageing and Mental Health, co-director of the Centre for Healthy Brain Ageing. He holds the Montefiore Chair of Healthy Brain Ageing, and is the director of the Dementia Centre for Research Collaboration. As well as being a prolific researcher, he's a senior psychogeriatrician within aged care psychiatry. Professor Brodaty is the past president of the International Psychogeriatrician Association. He has served as a member of the expert advisory panel for NH and MRC, National Institute for Dementia Care, and has served on several other New South Wales and Commonwealth committees related to ageing and dementia.
Henry is also the past chairman of Alzheimer's Disease International, which represents over 75 countries. Professor Brodaty was president of Alzheimer's Australia, now Dementia Australia, and Alzheimer's Australia New South Wales. He's currently a Dementia Australia honourary medical advisor. Having published over 500 papers and book chapters, Henry is on the editorial board of several journals, and has been the recipient of a number of awards. Henry's achievements were deservingly recognised when he was appointed an Officer of the Order of Australia in 2000.
In 2016, he was the recipient of the International Ryman Prize for the world's best development, advance, or achievement that enhances the quality of life for older people. We are extremely fortunate to have Professor Brodaty join us today to discuss how we can best support people living with dementia, experiencing change behaviours, and what there is to understand about the varying experiences and changes as dementia progresses. Henry will also be sharing strategies, options, and support services available for anyone who may need these. This webinar is sure to be a valuable one. So without hesitation, I would like to welcome Professor Brodaty.
Professor Brodaty: Well, thank you, Maree, for that kind introduction. 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 do 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?
Let me start with terminology. This is a issue of controversy. Right now, they're called “behavioural and psychological symptoms of dementia”, or BPSD. But people with dementia have complained about that, that it medicalises this. And various other terms have been proposed, like challenging behaviours, behaviours of concern, responsive behaviours, but the one that is gaining the most popularity is change behaviours, which doesn't have any connotation.
We tried changing BPSD 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 are BPSD? At least 90% of people with dementia will have some behaviour at some time. It depends how you defined 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-dementing 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'll be called 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.
Why do they occur? 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 is having pain. It may be because the person is just thirsty or hungry. We see that in the 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. 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. Starting again from 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. When they're calling out, they get attention. It may be their needs are unmet, 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.
Here are some of the biological causes outside the brain. I mentioned urinary infection and pain. Medication, or 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 my patients, are stories I've heard or I've actually been involved with. So the milkman. Well, we don't have milkmen 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 to put him to bed in his pyjamas, and he would get aggressive and reject it. Finally, they talked to his wife and she 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 4:00 AM, he's ready to do his milk run. That was his routine." Presto, the aggression disappeared.
The second person was a patient of mine who was being very aggressive to his wife, and hitting her and cursing. And I actually went to the home and saw him, and he had a very protuberant 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 the hospital, catheterized, and everything settled.
The third one is a story of a man who was admitted to a group home, and he has a history of being aggressive and absconding from nursing homes, several of the nursing homes. The nursing unit manager, a 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. It 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.
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 Gresham, who's pictured here, and I, ran such a training program in the late '80s, which proved successful in reducing carer stress and in keeping people at home longer. And then Meredith had the right idea, "Let's do it again, but combining it with respite care." We called it the Going to Stay at Home Program, and have 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 the 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. It 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 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 shower, because the house was in squalor, and he didn't shower for some time either but he was willing to do that.
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 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 I mentioned like urinary infections or pain, and correct sensory impairment.
And then we look at the 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 a nursing home 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 apathetically, 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 all 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.
How do we intervene? We have to modify the environment so 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 the 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 pertaining to colour, furnishing, architecture, lighting, smaller seems better, and the right resident mix.
Evidence for intervention is 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 their therapist. And in a systematic review we did, we found there was a modest effect size for decreasing behaviours, and as 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 families to do behaviour therapy, and they did something like pleasurable events, this is for people living in the community, what did this person use to enjoy? And they did this in people with Alzheimer's disease and depression – 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. Again, it controls both behavioural techniques, reduced patient depression, and reduced the numbers of diagnoses of depression. And as a bonus, again, the carer's own depression scores improved.
Lynn Chenoweth led a study, which I was part of, looking at training nurses in person-centred care. So on the vertical axis is agitation, and on the horizontal axis is time. The first set of bars here is before the intervention. The intervention went for four months. Then there was no intervention and this was a 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-centred care. And we see agitation levels falling, both intervention groups were significant. And the person-centred care was very cost-effective. Every point reduction in agitation, it costs $6, 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-centred 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 7:00 AM in the morning doesn't mean the milkman needs to get his shower at 7:00 AM because he prefers to get a bath at 6:00 PM. 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 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 and western when I go into a nursing home – so I like different sorts of music.
Some of you 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 an 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 and their babies 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 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 the statistical term for how well an intervention works, as antipsychotic medications. And after certain adjustments, we showed decreased depression and improved quality of life.
Laura Gitlin in the US has worked with occupational therapists looking at a home-based OT intervention. And in four months, she showed a decrease in the problem behaviours and increase 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. How effective are medications for BPSD? Well, yes, 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 there are 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 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 in 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-centred care, by having one session with the GPs, with our academic GP, Dr. Ellen Shell, and by talking with the community pharmacists. And we were able to get 85% of people off their antipsychotics within three months. And at 12 months, 75% were still off the antipsychotics. Did the behaviours re-emerge? No. Were regular medic like Valium or other benzodiazepines used as substitutes? No. There was some PRN benzodiazepine used as needed, equivalent to one milligram of diazepam per month, so very little. Some people will re-prescribed 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 can't really identify who they are. We're not even sure 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. If we're going to use one of these drugs, we should only use them for short periods of 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 a 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.
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, a couple of trials. Cannabinoids, there's been a good study of that. There's some newer antipsychotics. And for apathy, people have used stimulants.
We're 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. 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.
Can we prevent BPSD? To some extent, yes. By having a good environment, person-centred 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 Service, or DBMAS, A Good Guide to Practise, 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 family carers was Care4Dementia, using the number four. And for clinicians, it was called BPSD Guide. We also developed posters for Aboriginal communities with the Aboriginal communities, and we developed programs for the LGBTI community.
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 the 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 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 are 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, we should start trialling reduction of the medication, and see if it's still required.
The conclusion: change behaviours, BPSD, whatever you want to call them, they're common. We can't 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 are 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. Thank you very much.
Speaker 3: Thank you so much, Professor Henry Brodaty, for your presentation today on supporting people living with dementia experiencing changed behaviours. For those watching, if you would like further information, please visit our Dementia Australia website. And of course, you can always ring the National Dementia Helpline on 1800 100 500, and speak to one of our helpline advisors who can assist you. Thank you for watching our webinar today.
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