4 -- Understanding Behavioural Changes in FTD -- World FTD Marathon Australia

um now i it's my pleasure to introduce uh dr wendy kelso um wendy's been instrumental in organizing today uh wendy's the senior clinical neuropsychologist at neuropsychiatry here at the royal melbourne and was a clinical lead on our medicare victorian neuropsychology tele health project called bright yod she was instrumental in establishing the our melbourne young onset dementia service which is a clinic specifically designed to assist patients and families with young onset dementia she's also a frontotemporal dementia support group facilitator with dementia australia and has worked with people with ftd for over 15 years thank you wendy just swap seats ah thanks everyone so what we're going to do now is uh i'm going to play a video um and this video is billy and billy's 29 years old and the primary carer for his father who was diagnosed with behavioural variant ftd in 2018 so billy's father deteriorated quite rapidly and is now in permanent care and in this video billy reflects on the road to diagnosis and what the experience was like for the child of a parent with ftd hi my name's billy i'm from sydney australia my father got diagnosed with ftd behavioral variant in the beginning of 2017 i was 26 at the time i was living in melbourne and i got a phone call from his um gp saying that the my dad has some mental health issues um and through an mri it showed that he had some changes in his brain and we quickly found out that he had ftd um [Music] as a 26 year old i then realized that my dad probably hadn't been functioning well for quite a while and it didn't it occurred to me what the problem was i just thought my dad's getting a bit older and a bit a bit more senile um the first sort of symptoms that i realized was that my dad became more introverted and excluded himself from social activities although my dad was presented very well he was very healthy um and he started i started going to social things without him um as a 16 year old 17 and it got to the point where my dad didn't really know what i was doing at school and i finished school and he didn't come to my graduation um and it wasn't like he didn't care he just uh he just seemed a bit sort of senile and couldn't really couldn't really think um or organize beyond his own little life so fast forwarding from that he he ended up um engaging in another relationship which didn't work out too well and as time went on my dad started hoarding things collecting without any explanation he couldn't explain why he was collecting things and he was very strong with routine and he did the same things every day the same walks um the same places and he kept up as his ftd became worse he actually became more active and went for really long walks to the point where he would walk all day and come back and forget where he'd been um and that's where i decided that it was probably time to um to basically institutionalize him because he wasn't safe on the roads he was um running across streets and not paying attention to the traffic and things like that um [Music] yeah it's been a fairly difficult journey particularly with my dad you know with dementia being loss of personality um a personality disruption in his personality i mean that's that's very difficult to deal with particularly when it's happening over time and gradually getting worse um so for a for a young person like myself um trying to find my own identity you know having a single parent who is also gradually is actually getting worse and they don't even know who they are as a person um it's it's difficult to to get your head around um i was in a dark spot for the last three years um trying to figure out how to deal with my dad and all the social issues that he social issues that he got himself into um particularly with his um with another relationship um and me being the soul carer with no family support yes it was really difficult i eventually put my dad into a nursing home and probably the worst experience i've ever had in my life so far and i eventually just had to accept that's what it is and i did the best thing that anyone could have done um and i did have to realize that i had to look after myself that's extremely important and i found some people that gave me some good advice that i had to look after myself and my dad wouldn't have wanted me to suffer trying to look after him for the next however many years he lives [Music] i work wasn't easy to do particularly when i was in a good headspace and i was fluffing around for about a year and i just just had to get things together i managed to find some things i was passionate about and i committed to that kept myself healthy and now i'm i've got a fairly promising trajectory and i'm pretty happy with um with where i am and where i'm going so i think it's important to not get too involved with your emotions particularly when you can't do anything about the situation and i think it's extremely important to look at your own future as a carer and you know realize that you have far more potential than the person you're caring for and that that person you're caring for wants you to succeed in life so i guess that's probably my last bit of advice is to do as much as you can for the person you're caring for but also that can't limit you as a person and your um and your relationship with other people your friends and your wider community i'm going to talk about managing uh behavioural changes in ftd and sarah fahrend who's one of the psychiatrists unfortunately is unwell today so i'll just be talking by myself okay the first thing that i just want to quickly talk about is olivier has mentioned already the changes in the brain that occur in um behavioral ftd but i just want to talk about um you can see here the frontal lobes so uh they're the main areas where there's it's responsible for controlling our personality and behavior and particularly things like planning problem solving and decision making and also the temporal lobe down here where is affected in somatic dementia where people have difficulties understanding the meaning of the word understanding language but it also controls your emotional systems i'm just going to briefly talk about this picture here so this is looking at the spectrum of frontotemporal dementia and i know on the chat there's been a couple of questions about psp so progressive supernuclear palsy and corticobasal degeneration now they're considered forms of frontotemporal dementia just like semantic dementia and progressive non-fluent aphasia are and even some variants about a neuron disease can have frontotemporal dementia that coexist with them so you can see here on this little continuum tree that depending on what type of frontotemporal dementia you have you may have different cognitive symptoms different behavioral symptoms different psychiatric symptoms and different language symptoms and i'm going to go through some of that today probably the most important thing to realize is that the behavioural changes that occur in frontier temporal dementia are due to brain changes and many people find that they may have a tendency to blame the person with dementia and really it's the disease that's causing all the symptoms and that can be incredibly difficult if you're caring for someone with ftd not to blame the person when it's extremely stressful or there's heated arguments but it's always good if you can try in moments of calm to try and remember that it's actually the disease that's causing these changes so as i was talking about before it's a little bit like just having a broken leg but the person's brain is broken it's not working the same and because of the loss of brain cells that occur particularly in the front and temporal lobes they cause the symptoms of ftd there's ways of managing the behaviours and we've often found as well that carers sometimes find that they're also blamed for the person with fdd symptoms because they can't actually manage some of the behavior in the community so it goes both way the person with ftd often gets blamed for the behavioral symptoms but sometimes family members can also get blamed if they start behaving in an inappropriate or anti-social way in the community and many family members don't know how to basically fix it so they can go out on social outings okay i'm going to talk a little bit about our caring and personality types in ftd now so some people are born carers and dane is going to cover this a little bit more in her talk with sam this afternoon and some others are not suited to the caring role so you need to think carefully and honestly about yourself and about your own strengths and limitations so uh why are you the carer so are you the carer because of love duty obligation as a guilt expectation financial or there's no one else available uh what contributes to behaviour so uh relationship with the person prior to the illness is one of the main things uh belief systems and values so some people for example maybe uh from a religious background or they have a cultural way where they think people should behave in a certain way and if the person with ftd breaks those rules it can be harder to manage also things such as physical and emotional burnout can affect behaviour and sometimes if the carer is finding that they are extremely stressed or extremely tired that they therefore can't manage their behavior as well in their interactions with the person with ftd um expectations levels of stress worry burnout and the amount of support the person has to look after person with ftd another thing is education so if you understand why the person is having the behavioral changes it can assist then in trying to manage some of those behaviors the most important thing is to remember the person yeah so remember what they were like before they started to develop the illness and i think that can be extremely easy to forget when there's lots and lots of difficult behavior changes and the person with ftd may not represent who you married or who you were looking after before and that could be really really difficult try not to take the behavior personally and if you can use humor and i know that that can be really difficult but sometimes it is so difficult that if you didn't laugh you'd cry uh remain as calm as you can and we often find that if someone's in a predictable routine that they can quote much better because it takes the demands off their brain so they don't have to the cognitive load is reduced so for example if someone has frontier temporal dementia it means that because of the loss of brain cells they find a lot of tasks more difficult than they did before so if you try and keep things predictable and stable every day then it takes off that cognitive load so they can actually act and act at a higher level and be a bit more effective in accomplishing some of the tasks that they'd like to do you essentially need to act as their frontal lobes because their frontal lobes isn't working as well as it did before and if possible keep them involved in activities and hobbies that they've really enjoyed in the past and maintain connections with family and friends now this is a little bit of a behaviour chart so what do you do when the behaviours are difficult so if the behavior is not harmful is it possible that you can accept the behavior as part of the illness it may not be desirable but if it's not harmful is it possible that you can change your expectations and be a tiny bit more tolerant and accept the behaviour as part of the illness sometimes that's possible and sometimes it's not so if it is possible you can focus on the remaining abilities but if it's not possible can you alter your response possibly increase your tolerance reduce your expectations or modify your own behaviour and can you develop a list of strategies and make a plan or modify your environment to try and stop the behaviour from occurring and we often find distracting and reassuring the person and changing the routine can be very useful so what is cognition so when olivier was talking before he was going through all the different areas of the brain that are affected in ftd and many different cognitive skills are affected sometimes though in the early stages of ftd the person isn't diagnosed particularly the behavioral variant for quite later on in the journey because the behavior changes are very prominent but they actually do quite well on cognitive testing and we often talk about a white coat syndrome where they may go to the doctor for example and they can actually um behave quite well for that half an hour appointment but then when they leave the room then some of the behaviors come out as well and some neuropsychological tests aren't very sensitive at picking up behavioural and changes what we call social cognition and they're more useful at picking up things such as memory difficulties or planning and problem-solving difficulties so what are some of the changes that happen in bbftd so olivier and dennis and dahmer and claim have touched on this a little bit before the biggest particularly for behavioural variant ftd is personality change so the person isn't able to demonstrate as much emotion as they did in the past and their ability to empathize with the person that they're living with or with their children or with their parents and friends is reduced the warmth and understanding and ability to put themselves in the other person's shoes is really limited and there may also be a change in loss of intimate relations so in sexual relations for example but even in physical touch uh and a lot of people with ftd while we hear often about people being very disinhibited often they're also apathetic and the most common sexual changes are actually i'm no interest in sex no interested and no interest in tenderness or physical affection rather than too much interest often they become quite self-centered and inflexible and it may mean that they get stuck on a certain train of thought and a little bit like they're on one set of train tracks and they cannot divert their thinking to go on a different train track to get to a different line of thought or a different um problem or a goal for example and people with bv ftd usually one of the first symptoms is a lack of insight that they're not aware that they've got these changes but everyone around them is now that's a little bit different for the language variants and i'll come and talk to that in a sec some of the other behaviours are social avoidance so not wanting to go out and be in social situations anymore or if they are in social situations not being able to behave the same way that they did in the past what we call perseveration which means doing the same thing over and over again for example they may be wanting to listen to the same music over and over again or eat the same food i'll say the same couple of phrases under there you know in the under their tongue for example over and over so things that they do very regularly in a very fixed and repetitive type of way gluttony is often a feature as well where people overeat particularly sweet food but it can also be salty food and even non-food items such as soap for example where people just stuff food in their mouth often swallow before they've actually chewed it particularly well and this can be a real difficulty for families and it may be that you go out socially with someone and the person with bb ftd may steal food from another person's plate and that can be really hard for families to manage apathy is an extremely common symptom in baby ftd and i'll talk about that a little bit later um and this can all lead to relationship stress some of the less well-known features of frontotemporal dementia are changes in temperature and sensation and some of the frontier group and people across the world have been looking at particularly eating behaviors but also ability to feel pain and regulate pain feel if it's hot or cold for example and also understand their bodily sensations so you may find that some people with bbftd for example find that it's extremely cold outside they feel that it's cold outside even that might be a 35 degree day and they might put on 20 jumpers and a coat on top and the family are thinking oh my goodness what's going on and but they so inflexible that they refuse to actually take um the jumpers off so they aren't able to regulate the temperature the same way or feel and experience temperature the way that people that don't have ftd do people with bvftd and also semantic dementia can find it difficult to read emotions and this also occurs in progressive lung fluid aphasia and in psp and corticobase on some of the other um behavioural variants that we mentioned before so it means that they don't have the same ability to recognize particularly negative emotions as other people do and i'll come to a slide in that in a second they're also unable to recognize the signals to stop a behavior so for example they may hug a stranger or they may go up to someone for example in their street or ask that church minister about their sex life you know not knowing what's appropriate social behavior in a certain setting and not knowing when to stop so a lot of people with bbftd can be very intrusive into personal space they can be right next to you the whole time not realizing that you need a little bit of space and families find that really hard sometimes they lose their moral code or judgment and make very decisions that probably are not wise so for example we've seen lots of people over the years that they may have a huge increase in spending they may start buying a lot of alcohol they may start having affairs with other people which they would never have done in the past before the brain changes occurred um an ability to understand sarcasm is also reduced so we find with people with baby ftd that you have to talk to them directly in clear language for them to be able to understand because they don't pick up the subtleties of sarcasm so um this is a slide here looking at ability to read emotions so you can see here this sadness anger happiness disgust surprise and fear uh and there's been some studies done particularly in sydney if you're in a conference group has done a look a lot of work in social cognition saying olivier and john just looking about which emotions can people with um frontier temperature dementia pick up and which can't they they're able to recognize um happy emotions and positive emotions much more easily than negative emotions so for example sadness anger disgust and fear they find much harder to read that facial expression so if you're feeling sad yourself or you're feeling very angry the person with baby ftd in the room with you may not recognize that facial emotion so they may actually have to tell them in words or express in another way the way you're feeling so they understand uh this is a study that fiona comfort did in 2011 just looking at um recognition of emotion in ftd and it looked at a variety of variants so behavioural variant semantic dementia and progressive non-fluent aphasia and this is anger disgust fear sadness surprise and happiness down the bottom blue is the control green is behavioral variant ftd the yellow is semantic dementia and the purple is progressive monthly and aphasia so you can see in terms of people's ability to be able to identify the facial emotions in both uh you know for example in anger uh virtually all three types of ftd it's reduced um disgust particularly baby fda and semantic dementia and fear you can say all of them have difficulty recognizing fear uh sadness surprise but they can recognize happiness so it's really the negative emotions they have more difficulty with one of the questions before was about semantic dementia and what are the changes in behavior but also psychiatric changes that people notice traditionally people did a lot of research in semantic dementia and progressive nonfluent aphasia and focused very much on the language features of the condition but didn't focus as much among the behavioral changes or the psychiatric changes emotional changes but the more research has been coming out now shows particularly in semantic dementia and as the disease progresses more into the frontal lobes as well uh that they have quite similar level of behavioral change as behavioral variant ftd but slightly different characteristics so particularly in the right side it's semantic dementia people lose the ability to recognize faces often there's a preoccupation with jigsaws and puzzles and different picking up for example cutting up newspapers to pick out a certain thing each day or unusual kind of repetitive interests there's often a narrowing of interests and it can be a little bit like in autism where they get fixated on a certain thing like picking up fluff off the ground or emptying rubbish bins or i'm doing a range of different things and that can be really difficult for families to manage clock watching um happens a lot so people find that they're extremely regimented with time and they may have to have their meals exactly at five o'clock or exactly at 12 o'clock or they have to leave exactly to get the 3 15 train and they cannot be distracted by that um and there's lots of compulsions and rigidity in somatic dementia particularly regarding food particular types of food that they will and eat an activity and somatic dementia as well because they lose the understanding of the meaning of language it can be hard for them to express their feeling or body change so some people also have somatic symptoms that they can't explain as well such as headaches or changes sensation in their body which they find it much more difficult to explain and with the food in both somatic dementia and behavioral variant ftd a lot of the um it's the quality of the food that they love the intensity of the taste that goes to the reward system so they tend to crave sweeter foods because it's much higher more pleasurable in terms of rewards and it gives you a bit of a hit like a drug i suppose in your brain and the same with really salty foods or something they need the the actual flavor of the food to be stronger but they also need to be extremely pleasurable so foods for example like cauliflower or turnip which can have quite a bitter taste they're very turned off by with progressive non-fluent aphasia that's where there's a decline ability to be able to express their speech clearly and offered speech is quite uh difficult to listen to because it's so effortful and at times robotic and the grammar is affected and they've found that people with progressive non-fluent aphasia their ability to recognize emotions has also declined and as the illness progresses that there is apathy or a lack of drive and motivation and they can become more inflexible and not have the same level of empathy generally in the early stages to moderate stages of the illness often it's just language changes and the behavioral changes come later and they tend not to be as severe as in somatic dementia or behavioral brain ftd and progressive non-fluent aphasia some people can start having a language presentation of progressive muscle and aphasia and then develop something like such as corticobase along the track so sometimes the lack of fluency in language can be the first symptom and then that the diagnosis can change slightly over time all the symptoms can change so what happens if people have difficulty paying attention so what type of difficulties does that cause so you can imagine if you're finding it difficult to pay attention you can't follow through with a task and you find it very difficult to multi-task and sustain concentration for any length of time and most people with bb ftd their concentration span is reduced so if you're expecting them to be able to pay attention to the same degrees that didn't before it's going to be much more difficult executive functioning is moderated by the frontal lobes and the connections the frontal lobes to the other parts of the brain and this is having difficulties with planning an organization being much more impulsive disinhibited having rigid thinking and being unable to start or stop an activity so the starter mode is broken and they can't work the brakes as well we often say that the gates around the emotions are not working as well so they can't filter what um they say it comes in or out as easily and they can't check their own behavior so disinhibition occurs with some people with um ftd not all people but certainly with a vast majority of um behavioral variant have some level of disability behavior at some stage of the illness and often it could be a lack of social tact and they can act in a way that might be embarrassing for families and we often talk about it with an inside thought versus an outside thought so for someone that doesn't have ftd they may have a thought that someone may be for example overweight but they wouldn't say that it's an inside thought but for people with behavioural brain fda particularly those thoughts become outside thoughts so they may talk about make negative comments about people's physical appearance about their race about their sex life about a whole range of things or the religion or politics that they may not say in normal um social situations and they often find it really difficult to understand the other person's point of view that the other person may not want to engage in sexual relations or the other person might not want to go out with them or may not want to have a conversation with them they can't understand the body language and the changes that that causes and they can't understand personal space and they can't delay gratification for a long-term goal yeah so in terms of managing disinhibition i think um firm and consistent reminders that behavior is not appropriate is often really useful and we find destruction redirection and humor is often really good but it's important to think about some of the potential causes so sometimes behavior is an expression of an unmet need not always in vvftd but occasionally so you need to think of for example is the person lonely are they being stimulated enough have they got enough activity other things that may be causing the behavior and try and avoid triggers as much as possible and make sure the person's getting enough exercise and physical physical activity to manage things such as agitation with aggression so aggression can occur when there's a lack of impulse control and also someone's very frustrated or humiliated for example that they may be more likely to be aggressive so if you're asking someone to do something that they can't do anymore because they don't have the cognitive ability to do it often they can get more frustrated and it's more likely that they'll become aggressive they can't meet their own needs anymore and they may also be getting very anxious but their way of expressing anxiety or worry about being in a certain situation is to be physically aggressive because they might feel unsafe uh so how do you manage aggression so don't argue or rationalize that's the first thing there's no point trying to rationalize with someone that has behavior variant um dementia because they cannot they don't have the capacity anymore to be able to think in a rational logical way distract where possible and make sure that your body language reflects the state that you would like them to be in so for example if they're very heightened and they're quite feeling aggressive and out of control you need to be as calm as you possibly can lower your tone of voice make sure your body language is not with your hands crossed but for example your hands by your side open maybe go to the side of them so you're not front on not confronting them and these things can often reduce the tension in the room uh don't crowd or touch the person if they're being aggressive and try and empathize with them as much as you can and again avoid triggers and if it's safe to leave the person if they're finding if they're very aggressive then just simply leave the room and then you can try and identify the triggers after if it's extremely unsafe and you're worried about your own personal safety then you need to leave the room immediately and try and call the police or call an ambulance or get other family members in to support you as much as you can until they've got a chance to calm down in terms of managing finances look i won't spend too much on this but many people with bb ftd and also other variants of ftd find managing finance is very difficult and they're much more likely to be exploited by other people in the community so putting them on a do not call list and giving them only a certain amount of small money on a credit card for example so they can't lose too much money is often useful because that still gives them some sense that they've got control of their money but they're not going to um you know fritter away the family fortune shoplifting can be an issue so we'd recommend people to shop local be able to talk to the shopkeepers about the situation dementia australia have companion cards where you can explain to the person that the person has dementia and they may shoplift and then return the items afterwards so what's apathy so it's a lack of concern and motivation and a loss of interest and a loss of engagement and it's probably one of the most common symptoms and the most debilitating symptoms in in all forms of ftd and it means if in the severe form that the person doesn't have the interest in doing their self-care anymore that even things like showering and dressing they are totally motivated to get along and do that um so this is where motivation occurs in normal people so you can see here um in the um the frontal areas of the brain and the striatum and the connections yeah and apathy's divided into a couple of different types so there's effective symptoms of apathy behavioral symptoms of apathy and cognitive so effective maybe a blunting a loss of empathy behavior will be withdrawn or inability to start or initiate behavior and cognitive is a lack of interest in routine for example and difficulty planning to achieve a goal so um there's been quite a lot of work in positive behaviour support [Music] and that's been run out of sydney and also flinders university i'm just going to show you the positive behavioral support manual which is fantastic if you want to download it it's on the web so really it's talking about what can you do to make the behavior a more positive experience for the person and engage them in things that they've always loved to do and support them to be able to do the things that they once did so rather than doing it for them setting them up and mirroring so they can mirror your behavior so if you're starting to do for example cooking a meal you start alongside them you set it up for example so the carrots are out there they're nice beside it you start chopping carrots and show them what to do and then get them to support you as you go along and that's the positive behavioural support manual by linker fisher clara connor under the vip gay okay in terms of insight and indecision so that is very common that people don't have much insight anymore um and when you're asking them for example do they want to do activity often they'll say no and that's because it's an overload response it stems back right to childhood sometimes people with behavioral variant fdd and other forms can act more like a child in their behaviors and so it's much more i'm useful not to give them the option to say no or if they do say no don't assume that it actually means no and minimize the number of choices um that they've got we often find that if you'd like someone to do a certain activity to increase motivation offer them a reward or for example if you want them to go out on a social outing and you've been having trouble getting them to shower link it so for example if they always get to go out to the cafe with a friend make sure that they have to have a shower beforehand if there's a shower that you want them to have so it's linked to a positive experience more likely for the behaviour to occur again in terms of circuit breakers so sometimes things go wrong every day and it's just incredibly difficult to manage some of the behaviors so we find that people can often use music or singing um often people even if they don't have much language left is still able to sing if you play a favorite tune or if you turn on some music that you both like or one of you likes it can just lift the mood and just break the circuit if things are getting difficult laughing or crying or screaming in a cupboard or just making sure you've got some time out and often things like aromatherapy and exercise and being in nature or going out for a walk or either you or the person with fdd or both can just break the circuit for that particular time and make sure that you use if they've got particular types of behaviors or activities that they do repetitively use them to your advantage so if they like for example watching a certain show over and over again use that if you need to to have a break so in summary um fdds are brain disease and every individual with ftd is different so all the behavior changes i've talked about today not every person will have those changes some will have some some will have others and everyone's an individual and who they were as a person before they developed ftd will impact how their behaviors are exhibited when they have ftd it affects the whole family and taking care of yourself is incredibly important you

Channel: World FTD United

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Id: EY9zHKNSDsY

Length: 37min 30sec (2250 seconds)

Published: Fri Nov 06 2020