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Dementia Care: Current Challenges, Future Opportunities with Dr. Sudip Saha

Dementia Care: Current Challenges, Future Opportunities with Dr. Sudip Saha



and find your seats for those of you who have not met before I am Matthew part I the CEO wrong with polishing and this is our last practice than the changing for the holidays and we're really looking forward to it a couple quick housekeeping notes for the QA for those of you have not been here before you'll notice that you have a mic in front of you you can push the button and if the button is a solid red you have the floor if the button is flashing of the red light is flashing you are in the queue I do ask that you turn it off when you are done so that the next person gets to take over so for sponsoring today is the morning today friends with the Chiefs again is not possible with those of our sponsors so today is the supporting us as the Canadian Foundation for Healthcare Improvement Canadian Institute for Health Information Medtronic Canada and then of course our facility is provided by Sick Kids so big thank you to them so not too long ago Longwood's and some of our staff we ran across a video electronic star to get this right the red stone dementia unit in Kiel and after watching that video the group of us thought wow this would be fantastic and we're on dementia and that sort of idea as well and so we decided to invite dr. Saha and he graciously accepted our invitation and so we were pleased to welcome can everybody hear me okay so thank you Matt for that introduction I'm going to be talking to you today about dementia in general to start off with we'll start off with some statistics subsequent to which will progress into a slightly more kind of detailed discussion about dementia and subsequently we will discuss some cases and that will highlight to you the challenges that we face and the context of where we are and where I certainly think we should be going ok so due to advances in health care and public health efforts in general the segment of the elderly population is growing people are living longer and as the population of the world grows the segment of the elderly population is growing faster than any other age segment so at this point in time from a prevalence statistic if you were to look at the global health global population the percentage of people who would be above the age of 65 and that would be traditionally considered to be seniors is about 13% and if you were to make projections into the future that percentage is expected to rise to about 20% by the year 2030 however I was more alarmed to note that by current projections for the first time in the recorded history of the world by the Year 2045 the number of people who are older than the age of 65 will be larger than the number of children below the age of 15 this is where the world is going in the context of population demographics and I keep referencing the perspective of the age of 65 and the importance for that is that 65 is actually the year where the statistics in terms of the validated published literature suggests that for every five years that you live beyond at the age of 65 you double your risk of getting dementia and what this means is that if you were to do the arithmetic on there is that by the age of ninety two out of three poll will have issues related to cognitive impairment 66% of people the vast majority if they are lucky enough to live to the age of 90 will have issues related to underlying cognitive impairment so when you put the backdrop of the statistics that I've just quoted to you in terms of where the population demographic of the world is going and you marry that with the statistics related to the prevalence of dementia now you can begin to see why it is important that we need to get this paradigm correct deceivin come from people who have a formal diagnosis of dementia are four times more likely to die as compared to people who do not have a diagnosis of dementia in Canada and let's talk about some Canadian statistics nine seniors are diagnosed with dementia every hour now I'm not talking about a transient curable condition here you need to take that in perspective dementia is a progressive multi-systemic neurodegenerative illness for which there is no cure this will ultimately prove fatal for you the average lifespan from the context of initial diagnosis to terminal stage would be between 8 to 10 years for alzheimerís dementia and I quote Alzheimers dementia because it is the commonest form of dementia nine seniors are diagnosed with dementia every hour in Canada okay going forward from that in terms of some Canadian prevalent statistics as per statistics published by C IHI the prevalence arise in dementia is expected to be about 21 percent over the course of the next 10 years there was some recent data from Cancer Care Ontario that suggested from the perspective of Ontario there will be a 70 percent rise in the prevalence of dementia of people living in the I want to stress this as an important point at this stage of the discussion and I say this because Canada is a vibrant multicultural society and from that perspective in the context of my clinical practice what I have noticed that there are a variety of cultures that actually erroneously extrapolate memory changes as you get older to be within the boundaries of normal of normality so you say he's old and that's why he has these memory changes and I want to stipulate that dementia is not a part of normal aging that's important for you to know I wanted to talk about central with a central Westland statistics because that's where I work and that's where I come from and I was really alarmed to note that in the context of the statistics that were revealed from cancer care ontario between the years of 2015 to 2020 the central westland has the distinction of having the highest prevalence rise in dementia of a staggering 46 percent 46 percent the average provincial rise is about 22 percent this I found the statistics to remind boggling to tell you the truth and and you know you have to understand is that in the context of acute medicine we see that statistic come and find us on a daily basis and you'll see that there are some tragedies associated with that we will discuss as we go forward there was some interesting data published related to people with dementia and hospitalization of their experience with hospitals and I wanted to coat that to you as well today so people who have a formal diagnosis of dementia are known to wait two and a half hours longer in ER as compared to people who don't have dementia they have a 65 percent higher chance of being hospitalized as compared to people who don't have dementia while in hospital their length of stay is generally two times longer than a similar individual who doesn't have dementia more importantly their chances of developing hospital-associated harm is one and a half times higher than it is for people who don't have dementia and I'm kind of building the case for the of the fact that hospital is a very unfavorable place for somebody who has underlying issues related to cognitive impairment and that and we need to make this very clear in terms of the health care system I'm going to go into what is referred to this is the formal definition of dementia and I'll explain it to you in more layman's terms in a minute but if for the sake of the record dementia is not a specific disease it is an overall term that describes a group of symptoms associated with the decline in memory or other cognitive skills severe enough to reduce a person's ability to perform everyday activities that's just a definition at the same time I'd say to you that sixty to eighty percent of patients who have underlying dementia have Alzheimers dementia we'll come back to the slide in a minute but as I was hinting to in the beginning of my talk there are a variety of people as well as cultures that extrapolate that memory changes that happen as someone gets older would be considered to be within the gambit of normal aging and that is an erroneous statement memory changes do happen as you get older and I'll explain that to you in a minute and then there are memory changes which would be considered to be pathological and would ultimately fulfill criteria for a diagnosis of dementia and we'll talk about that in a minute as you get older I would expect that you will get more forgetful and when I say you'd get more forgetful it will take you longer to remember things that previously you were able to remember a lot more quickly as you get older your attention span will decrease so you will say that I used to be able to kind of you know keep myself focused for much longer than I'm being able to do so now as you get older your ability to multitask we'll also decrease so you can't do so many things or juggle so many bowls together at the same time and these changes whether it's related to attention span multitasking or generally in terms of you know being able to remember things quickly would we consider to be within the boundary of what would be considered to be normal changes in memory with aging that's acceptable however if you during the course of you getting older and older you are now no longer able to perform things involving activities of daily living that you were previously able to perform then you have a problem let me give you an example if you were able to pay your household bills on time and accurately previously but now feel that you either missed the date or you under pay or you overpay because you have memory issues or procedural memory issues there's a problem if you were previously able to administer medication to yourself you know safely on time in the dosage prescribed but now find that you frequently forget to take medication on time or don't remember to take it that's a problem if previously you were able to navigate a vehicle and drive a vehicle accurately but now feel that you're struggling with the same then that's a problem similarly if you find that you are having gaps in the context of your calendar will you have made appointments to meet people but are now no longer able to do so because you forgot etcetera that is a problem and these are activities of daily living which all of us do at an inherent level but as you progressively get older and if you were to find that you were having deficiencies in being able to do these things that is not within the boundaries of what would be considered to be normal changes with aging as you get older that's pathology that would suggest that you are likely developing a neurocognitive disorder so let's go back and perhaps now you will be able to understand the diagnosis or the definition of dementia so it's not a specific disease but it is an overall term that describes a group of symptoms associated with the decline in memory or other cognitive skill severe enough to reduce a person's ability to perform everyday activities that is the definition of dementia now it's it's probably easier for me to explain the context of some of the stories that we will highlight later on in the talk if you understood what happens in dementia and why we see what we see and as I've highlighted to you already the communist form of dementia is Alzheimers and that's what we'll talk about when somebody gets Alzheimers dementia theoretically the pathology of what is happening is that there is abnormal deposition of two types of protein one is amyloid and there that is tau in different parts of your brain and these aggregates of these proteins take the form of what is referred to as neurofibrillary tangles and plaques in terms of an oversimplification when this protein deposition reaches a certain quantity it actually proves toxic for the neuron around the area where it is deposited and as it proves toxic for the neuron the neuron dies and when the neuron dies two things happen the function that that neuron was performing is now no longer able to be done as efficiently and subsequently we see the clinical symptoms that we see subsequently which forms what is referred to as the symptoms of dementia and as the neurons die there is a relative cerebral atrophy so the brain shrinks in size and you can see that on brain imaging okay that's the hallmark or in a very broad-based terms of the pathology of what is happening we also know that as you advance in the progression of your as I'm as dementia there is also changes in the context of some substances in your brain which is referred to as neurotransmitters and facilitate communication between your neurons and the three neurotransmitters that are predominantly involved when you develop Alzheimer's is acetylcholine norepinephrine and serotonin and I think that's getting a bit technical but this the point I'm trying to highlight is that the protein deposition leads to toxicity of neurons which kills the neurons and there is also a relative deficiency of some neurotransmitters which make transmission within the brain to be compromised so the brain is unable to act as efficiently as it does in a normal individual okay I'm going to I'm going to dwell on the technical bit for a bit longer because I do think that it will really help you in the context of understanding what happens and why people behave or act the way they do and again I would also reference the fact that that if the statistics are what the statistics are and we are saying that there is a 66% chance that if you were to live to the age of 90 that you are developed you will develop issues related to cognitive impairment I would extrapolate that to say that each one of you in the audience today has either been directly involved with somebody who has had dementia or indirectly knows a relative who has dementia that is the prevalence of this disease and from that perspective what I would encourage you to do that as I explained to you as you got the development of the symptoms I would say go back to that person that you interacted with in Trent and you will see parts of the puzzle fit together for you now I've referenced to you that there is abnormal deposition of protein in certain parts of the brain subsequent to which there is an increased level of toxicity and the neurons die the pattern of the deposition of the protein happens in a slightly predictable sequence and that is why the progression of the disease is in some sense quite predictable now I'm going to start off with the hippocampus and the hippocampus if I may you know use the lab term liberally it is like the memory capital of your brain and the hippocampus I would refer to it as sort of a memory librarian so what the hippocampus does is that as I'm giving you this talk right now it is my hippocampus that is registering this memory and once it registers the memory it files it into your cerebral cortex which is your brain and thereby the memory lives so in the future if I need to access this memory the hippocampus will go to my cortex and basically take out that memory and I will be able to react sess it will relive it and remember okay that is the function of the hippocampus and that is the important place where you register your memories it is important to mention this fact because in alzheimerís the central construct of where protein deposition starts off with is in the hippocampus so as the protein deposition starts in the hippocampus and the neurons there die the hippocampus malfunctions and when the hippocampus malfunctions people are unable to register new memories so their short-term memory gets significantly compromised not only are they not able to register new memories they are unable to file those memories for access later on so the corollary to that is that people will start asking the same question again and again and again so it's like I just told you the answer to that question why are you asking me that again and it can be quite exasperate into people around but it's like you tell them something and they just can't seem to register that information and that's why this is happening as the disease spreads it also involves your temporal lobes and the temporal lobes are the two parts of your brain which are just in front of ears on the sides right and when there if you are a left-handed person and your right temporal lobes get affected this is the part of your brain that is related to issues related to language so what will happen is that the patient will or the patient's family will come to you with complaints related to the fact that my father used to be a very eloquent person but now I find that his vocabulary is very limited or he speaks in non specifics they will reference statements like he will say we will go there then where will you go and when will you go there it lacks specificity okay so these are the kind of these are in the initial stages and these will be the subtle signs that you will pick up you will also notice that there will be a tendency for people in a multicultural society like this to regress to their native language so that you know they probably come to Canada they subsequently learn how to speak English and as the you know the involvement of the temporal lobes progresses because the English came on later compared to their primary language they lose the English first before they lose their primary language if the temporal lobes on the right side of your brain is involved what happens is that you lose the ability to recognize familiar places and familiar faces and the captivating part of that is that usually again it happens in a chronological sequence so grandparents will first struggle to recognize grandchildren because they are the latest addition to the context of the family subsequent to which they will start to lose the ability to recognize children then perhaps their partner then perhaps their siblings in a retrograde manner in that sense you will also see that their loss of ability to recognize a familiar place a lot of these people will say I would like to go home and when their family tells them well you are at home they'll say no no no I want to go home and if you explore that comment you will say that you will see that their home has now become an unfamiliar place to them and when they are talking about home they wish to return to the home where they spent their childhood or where they lived with their parents because that is the part of the memory that they can now still access whereas their recent memory has gotten compromised and that is the sequence of events as it happens the frontal lobes are quite large parts of your brain and they're referred to and this is the front of your brain over here and they they are referred to as the executive or the management center of your brain and it is instrumental the top part in particular is instrumental in you multitasking so if if and again this starts to affect activities related to daily living and I'll explain to you how even the simple task of making a cup of tea involves a lot of prerequisites you need to put the water in the kettle you need to put the kettle on you need to take the cup out of the cupboard you need to put the tea bag in the cup you need to remember how many cut and you know teaspoons of sugar you take it all needs to happen in a certain sequence that your brain needs to be able to process when the top part of your frontal lobe starts getting affected your ability to sequence and multitask it gets compromised and he will become very clumsy and people will not be able to understand why somebody who was otherwise quite astute now has become so clumsy if the middle part of your frontal lobe is concerned and this is related to mood what will happen is that people will become very apathetic so somebody who was otherwise the life of the party or a very socializing person will now no longer want to go and socialize with friends they would rather stay at home not talk very much become a rather apathetic if the lower part of your frontal lobes are involved this is a part of your brain that and that keeps you socially appropriate and by that what I mean is that changes to the frontal lobes with protein deposition will result in what is largely referred to as socially inappropriate behavior but socially inappropriate behavior can take a lot of meanings and largely it is in the subtleties so patients will come to your families will come to you and say my mother used to be so prim and proper but now she uses profanities all the time or they'll come to you and say my father used to be the kind and sweetest man in the world and now he loses his temper at the drop of a hat I don't know what's going on it's like it's a different person it's because the frontal lobe at that part of your brain has started to get affected the parietal lobes are two big lobes at the back and over here of your brain and if the parietal lobe on the left side gets affected what happens is that your ability to process reading or process numbers gets compromised so you'll find that people who have rashes readers throughout their life no longer want to read and it's very unlike my father not to read anymore he would love to read the newspaper but he doesn't and it's because when he reads he can no longer process that information so there's no interest there anymore or he you will come up with the fact that you know he used to be so on the ball with numbers I mean you'd go shopping with him and you'd have all the sums done up in terms of how much we owed he can't do that anymore more importantly if this part of your brain is involved you lose the ability to discriminate the left from right and the problem with that is that when you cannot make out what is left and what is right your ability to dress yourself for example or eat properly it starts to get compromised and you develop something called apraxia if the right side of your parietal lobes is involved what happens is that your ability to judge and depth or three dimension changes so because of that you know they might not be able to go and pick up a glass of water soccer is delayed or they will fall more often because they misjudge the environment so these are kind of in broad brushes some of the these are the key sequence events of how protein deposition happens and why you start to see the symptoms in dementia that you see I've saved the amygdala Flast because the amygdala is a part of your brain that is part of the limbic system and that is your emotional brain and the remarkable thing is that your amygdala is actually in very close physical proximity to the hippocampus which was the first part that we're that is clearly involved with Alzheimer's but the surprise is that the amygdala which is the emotional capital of your brain does not get affected in Alzheimers until much later in the course of the disease and I make that point to segue into the definition that dementia individuals are not thinking individuals they are feeling individuals and what I'm trying to highlight there is that through the sequence of events of those lobes getting affected as I've described to you you then have the unique circumstances of the individual who no longer has confidence in his brain being able to do what it was used to do previously but can still feel that inadequacy which subsequently leads to significant amounts of anxiety tension irritability and and a lack of confidence and that's what drives some of the behavioral and psychological symptoms of dementia that we see so now that I have described to you the sequence of events of what happens to a person's brain with dementia I'm going to take you through two case histories in this context and you'll be able to put things in a bit more perspective the case histories have been slightly changed to maintain patient confidentiality which I'm sure you can understand the first case is that of an 82 year old Portuguese gentleman my inference was that this guy had changes related to memory or had had a former I mean had changes in keeping with dementia for a few years before he presented but the family had extrapolated his memory changes to be within the gambit of normal aging and had kind of refused technology and as his dementia had progressed looking after him had become more and more challenging and this was not easy for his wife who was of a similar chronological vintage things reached ahead when one day with the progression of his dementia he raised his hand to hit his wife and this was the straw that broke the camel's back and the patient with his family came to here saying enough is enough there is no way my mother is gonna continue to do this she has been toiling away after my father for years and this is the way he repays her we're not doing it so although he was 82 he's built like a tank like really physically very robust and from that side of things things were really really good but from a cognitive side of things his cognitive impairment had now progressed to a stage he was that he was even unable to recognize his own children so this would mean that he's in the advanced stages of the disease when he was brought to the ER initial medical assessment in the form of brain imaging and blood tests demonstrated there was nothing acute going on and that's entirely what I would expect so for this individual his diagnosis is advanced day neurocognitive disorder Alzheimers dementia there's nothing acute going on that requires him to be in a hospital environment there is no magic pill that you can give him that will suddenly magically make all of this go away memory Terrain once lost cannot be recovered but the circumstances of his presentation I mean I think that diagnosis clearly helps but there was nothing acute going on that hospitals or what they're kitted out for could do here but the presentation and the complaints of the family was there is no way we can continue to look after this individual anymore we're not taking him home and under those circumstances he was in emerge now let's put this through now the viewpoint of the person who has the dementia so for an individual who can now no longer recognize his own children finds himself in an emergency environment with lots of noises and beeps and all that going on nobody familiar he cannot grasp onto anything to orientate himself in the context of what is happening we've seen that he has he's quite an inflexible natured man which led to some of the altercation he had with his wife unsurprisingly he has an altercation with the nurse who was looking after him because it's a you know anxiety provoking an atmosphere and the next thing you know he has five security guards pinning him down to the bed and he is given anti-psychotic medication as a chemical restraint if you have dementia and you are giving it psychoactive medication like antipsychotics it will not be good for your cognition I mean I suspected the validity of the prescription under the circumstances can be argued to be illogical I mean he was being violent in a hospital emergency environment it happens all the time subsequent to this he was put in four-point restraints because he was both being agitated and aggressive and there was a tendency for exit seeking because all he could say is I want to go home he probably would struggle to recognize his own home but it's a latent reflex all of us have in terms of I want to go home because that's where you would find comfort subsequent to this he was transferred to the ward because the family were disinclined to take him home I had assessed him at that point in time and had made a formal diagnosis related to dementia he was clearly demonstrating what is referred to as behavioral and psychological symptoms of dementia and this is to some extent amenable to some pharmacological intervention that is not going to be curative but will kind of polish off the edges to make it slightly more manageable so that you know providing the care for him can be a bit more salvageable from the family perspective but the family by this time I decided there is no way we are going to continue to look after this individual at home he has to go to long-term care from hospital the average wait time to go to long-term care from hospital where I live is about 18 to 24 months so I don't know how feasible that is but I mean that was the desire of the family so we're now reaching about day three or day four and in this period of time what has happened is that as I told you before he's built like a tank all that we can get is he had regressed speaking in his native Portuguese so communicating with the staff on the ward was again very difficult but we know for a fact from what the family told us that the thing he kept verbalizing again and again and again was that he just wanted to go home but that was not possible and this also nuanced on to some concerns due to the fact that he was exit seeking there was some restlessness queries there were some options related to agitation which is why I was kept in restraints as he was physically quite robust on one instance within the first few days of his admission he had managed to try and partly disentangle himself from the restraints of his chair and wasn't entirely able to you know kind of rationalize what had happened and tried to get up to leave and in that process fell spectacularly forward and hit his head with the chair landing on top of him fortunately for him he didn't get a subdural hematoma but he did suffer from a concussion injury and subsequent to the concussion injury he developed what is referred to as delirium delirium is an acute confusional state it is a reflection of diminished cognitive reserve and it is very common in people who have dementia and people who are in hospital with dementia have a very low threshold for jumping into delirium by day 3 he is now quite delirious and the delirium were the agitated delirium is making his restlessness worse which progresses onto the perspective of putting him in further restraints when you put him in further restraints you decondition him at the same time I think because of the language communication issue I think he was unable to communicate when he needed to go to the washroom likely became constipated and a bladder scanner so when you get constipated your fecal or rectal loading will cause bladder spasm and will cause you to go into urinary retention a bladder scan was done he was found to have a large urine residual volume and the next thing you have it is that a Foley's catheter has been inserted for an individual who has cognitive impairment to his stature that he's now no longer able to recognize his daughter for him to have the cognitive ability to understand why there is suddenly a rubber tube that is extremely uncomfortable that is going up his penis is going to be difficult to rationalize and if anything will lead to further agitated behaviors and unhappiness under these circumstances most patients will pull their catheter and cause significant urethral trauma so you get the gist of how things are progressing at this point in time I had kind of actually rotated out of the consultation service but this progresses in a situation of you know being kept under both physical as well as chemical restraints him deconditioning although continuously expressing a desire to want to go home at the end of six weeks he was found to be unresponsive a code blue was called he was resuscitated he was transferred to intensive care where resuscitation efforts failed he passed away this is an individual who told six weeks ago was living with his wife al-bait with dementia but with no acute medical illness he was brought to hospital because of some behaviors where the diagnosis was there's nothing acutely wrong with him but the paradigm of care was such that in my opinion contributed in a significant manner to this individuals demise this happens in acute care every day it's happening now as we speak every hospital whether you talk about downtown Toronto or provincially community or otherwise sees this on a nearly everyday basis this is the problem if I'm you and as I've told you at the beginning of the talk if the prevalent statistics are what the prevalent statistics are and if this is the mandate or the paradigm of care in the acute sector which is the case we have a problem we have a big problem and that is what we need to concentrate on in the context of changing in that path in in that process let me go on to another case for you so I'm now going to reference the context of the butterfly model and the butterfly models central theme and I would say accurately as was exemplified in the first case that I spoke to you about it is that dementia individuals are not thinking beings they are feeling beings and as you can see in the particular case he wasn't really thinking straight but as he there was a lot of evidence to suggest he was feeling the anxiety he was feeling you know the sense of restlessness that you were seeing being in an unfamiliar or uncontrolled environment now let me take you through another case this was an 84 year old man of in in dissent he had come to Canada approximately 20 years ago because his son who had come here he and his wife the son and his wife were struggling to look after his their two daughters because they were both working and finding it difficult in that sense and it was under these grounds that they requested his father to come to Canada and that was the grounds of which he immigrated he had lived in Canada for 20 years and had been instrumental in raising his two granddaughters and you could see that even in the time I met him and that significant fondness that he had for his two granddaughters as he had gotten older he had developed dementia in the context of the care assessment for dementia it was required that he would require 24-hour supervision which the family were unable to provide because they were working and this facilitated his movement to long-term care and he was at Moulton village when I first saw this gentleman the clinical noise that was brought forward to me was that he is an extremely affectionate man otherwise very kind-hearted and would hug people all the time because that was in the context of the cultural congroo a which he came from but the staff were facing significant issues related to the fact that he was described to be very violent when anybody who try to do kind of toileting care or intimate care with him and I was consulted in the context the fact that can we give this gentleman something that's gonna make this go away but hold on a minute let's analyze this from what's really going on so first of all we have we acknowledge the fact that dementia individuals are not thinking individuals they are feeling individuals if you were to to to assess the gentleman from cultural congroo a perspective having a situation of a youngish woman and let's be politically this way it's a different woman every day that comes in to provide intimate toileting care for him this would for up gentlemen of his background be a very uncomfortable situation so the fact that he responds in that man is not entirely surprising so when they analyzed this from the butterfly paradigm what they discovered was that he was a question of setting up a trust situation so they allocated a male carer for him who would spend a significant amount of time to establish a trust relationship the me I mean and you know as these people grew in the context of the the butterfly model and now going to that and a bit more in a second is that what he found was that in the morning before he was going to go and do any toilet in care because a sense of personal hygiene had deteriorated with him developing dementia that he would go and give the gentleman a hug in keeping with what was it a behavior paradigm for him and that by kind of just reinforced that trust relationship and then he would go and toll at the individual and there was never a problem so effectively asking for pharmacological intervention to get rid of what is I would refer to as a volitional reflex of discomfort when a young woman who he does not know suddenly goes in and tries to D toileting on him he's acting because that's the way he wants to act there's nothing pathological there it's volitional and that is the part that people start to forget in the context of dementia I've highlighted to you that people who have dementia I think the commonest problem from an emotional or a feeling perspective that they suffer from is higher levels of anxiety and that higher level of anxiety comes from a variety of different places one is the fact that I don't think they can trust their own brains I mean I've heard comments to suggest that I don't know why I said that why that came out of my mouth but it did right and and you know when you feel you have no confidence in your own brain I mean what you're going to feel quite anxious and and you know and that's some of the kind of theory behind what's driving the behaviors but what I would reference to you and I think this is I would agree with a butterfly model on this that if people are going to live in long-term care and a substantial number of these people are it makes sense to take away the institutionalized feel of a long-term care facility because that will if anything increase levels of anxiety for these individuals which which is completely understandable who would want to live in an institutionalized setting these people haven't done anything wrong that they need to live in anything this is what their new home is so that new home needs to be as much home-like as it can be and it facilitates an environment which is non institutionalized and more home-like so the carers don't wear uniforms they dress in normal clothes and it actually I found that this was actually very very intelligent of them mm-hmm so they will incorporate things like having you know everyday things of life being around so that it feels like a much more homely atmosphere what they've also kind of stumbled upon is the fact that you know it doesn't matter what your level of education is or what your educational background is or what your cultural background is everybody no matter where you come from will be very familiar in the context of you know eating a meal and what they do is that they make the meals to be the central theme of the day on which they form the construct so it doesn't matter where you come from but all of you will be familiar with the with the duties of laying a table laying the plates putting out the cutlery maybe a nice tablecloth etc sitting down to have a meal serving the food and subsequently clearing the table which is task orientated but it makes the person feel useful and also these skills have been done for such a long time that it's kind of an innate you meet deeply ingrained in your cerebral cortex so you really need to be in a fairly advanced stages of dementia for you to be that functionally compromised that you cannot collaborate with these aspects so what they do is that they make the meals to be the central theme of the day so they're concentrating on a home-like setting nice tablecloth comfortable chairs colored plates nice cutlery etc and you know get the individual involved in that context to make lunch or dinner a very social or central theme of the day and this results in people coming out of their shell feeling useful interacting more resulting in much better outcomes from what I can see and eating better at the same time you compare that to other circumstances that I have seen in long-term care that would involve unfortunate examples in which an individual who has dementia but because there's a label of the fact that he has displayed behaviors he sat down to dinner but is not given a knife because he cannot be trusted with the knife because he has behaviors he could be violent my question to you is this if you have cognitive impairment that is of such a progressive nature that you may actually struggle to recognize close family or struggle to recognize food on the table how do you expect that individual to eat his meal without a knife how do you expect him to have the cognitive ability I mean I would struggle with a piece of meat without and I forget him and then if he gets frustrated that he can't eat his meal and he bangs the table because he cannot communicate he is labeled to have more behaviors this is the paradigm that we are currently in 60% of people in the region of Peel long-term care facilities have a formal diagnosis of dementia if you were to evaluate all of them the projection is that actually more than 80% of them would fulfill criteria for a diagnosis of underlying major neurocognitive disorder 80% and this is the paradigm of care that is the default paradigm in long-term care in general when you look at the prevalence statistics that I've quoted to you you can now begin to understand in terms of how unprepared we are in the context of what is the requirement at the table and what is the paradigm of care that we are currently providing at the table and this results in adverse outcomes for everybody and I'll tell you I would encourage you to take the seriously and take this personally because if the prevalence statistics are what they are this will come and find you all either directly or indirectly so if you choose to make a change it's for all of us and for yourself as well again one of the things that I'd noticed in the contest and it is really quite remarkable to see this is that the staff who now work on the butterfly ward don't really want to work anywhere else so when they go to another ward and they see that the paradigm of care is what it used to be or what it currently is for that ward they find it to be horrific you see where I'm coming from and they don't really want to work there at all I'm at eight foot first I'm going to stop there and just open open up to any questions that you may have a hope you found that useful [Applause] questions so again push the button in front of in front of you and then we'll go from there so do we have any questions feel free to raise your hand and let us know that you are there so you gave the example of some of the paradigm of care at the hospital setting and in long-term care and some ways that that could be changed what about in the community care are people still living in the community what are some models there that maybe are not helpful well I mean you know I think I think the whole system needs to change because if the prevalent artistics are worth the president e percent of people in an acute hospital are actually elderly people over 65 any I mean I say this from Brampton civics perspective or Etobicoke general seventy percent of the people that are admitted in that building are over 65 right and I've quoted the statistics to you already so whether you're talking about the acute care sector whether you're talking about the long-term care sector and will and I quoted to you that there's a 70 percent prevalence increase in community dwelling individuals who fulfill criteria for a diagnosis of dementia so this is you know it every segment will need to change in the context of how we deliver care to facilitate the understanding that normal conventional care as it is currently being delivered is unfit for purpose it will have to incorporate the fact that a different approach needs to be had with these people you gain trust or you are able to enter their cognitive currency through an emotional pathway rather than an institutionalized regimen orientated pathway that's the point okay so in the Netherlands they have this place called hog awake I'm not the dementia village what are your thoughts on that do you think Canada whatever I think that you know I mean I haven't relative visited the dimension village yet but the context of there of what I my understanding is that they they facilitate an environment where people with dementia continue to live with other people who are much younger who are facilitated to live there with the understanding that they will support that society and thereby keep seniors more engaged and more cognitively functional and give them a better life but I mean I think the relevance of that is to a certain stage of the dementia trajectory when you reach the advanced stages I think that would become more and more difficult but in the context of your question is is there a place for it in the Canada care paradigm absolutely thank you hi thanks for your talk I think that there needs to be a significant awareness campaign related to primary care about the you know dementia prevalence statistics that we have coming forward and that you know primary care physicians should be able to immediately be able to recognize what constitutes pathological memory changes as compared to normal memory changes and be in a position to make a referal sooner rather than later because if if the referal is made to a specialized memory care center then perhaps we can tweak out the dementia journey in such a manner that he has a few more years of being functionally intact and having a good quality of life and also prepare both him and the family for what lies ahead what to expect and what not to expect and be more realistic in their expectation so I think primary care has a huge role to play so how do we go about educating caregivers both medical professionals and families around these issues and how do we do it I would suggest it goes beyond the people directly involved in long-term care but also these individuals are also prone to get other illnesses as well and how do you deal with all that how do we get into the fundamental stages of making that shift that needs to happen at the ground level well I mean I think that that's the part of the journey we're on at the moment and certainly in the context of our work with the region of Peel and I'm grateful to the Toronto Star for highlighting that from the media perspective but we need to now create a circumstance where we make an acknowledgement of the fact that this is the prevalence or this is the problem related to dementia the current care paradigm as I've highlighted to you all is unfit for purpose and there needs to be a concerted move to reorient eight this to what it needs to be but I would say that it involves a complete reeling of the system conflict of interest dr. Saha and I are actually know each other very well from the audience learn how system I know that in the four years that I've been a manager of the medicine units that I work in it's been very much teaching the staff to change their approach very much not rush people that are with dementia the challenge we have is very much education across the board families you don't want to admit that their loved one is in a bad way they don't want them to be sedated but on the other hand they don't want them to be tied down but the safety involved for other patients and for the staff what's interesting and that for the audience to know that there's hope love goes a long way and love of the work love of the patients love of what can be taking place but we absolutely agree the hospital is not the right place for these individuals the number of patients I have probably about 6 to 8 out of 38 senses who are there not because of a medical problem but because of a social issue a failure to cope and I commend the families that are able to manage in the community to the point of their breaking point but the placement of these folks is not the hospital in turn care but to get the families to accept and to see that hope and yes it may cost $7,000 a month to get into a retirement home but that's again it's so multifaceted so the question for you is how are we gonna keep the Mojo going and in terms of the seamlessness ya know I think you know III to be perfectly honest with you and I don't contend to have all the answers but I can tend to you know be here to make the case for the fact that we are not where we need to be and we need to move forward into into realizing that as a first-world developed country that you know practices validated evidence-based medic practice one of the things from what I have I wanted to say this to you then I forgot to say and I wanted to mention it right now is that one of the aspects that the butterfly model also incorporates is that providing care to dementia patient is not everybody's cup of tea this is not for everybody you need to have a certain emotional IQ to be able to do this and a lot of people who are currently in the care sector do not have that emotional IQ they are unable to connect at an individual level and for them I think it would be you know sad for those people to be part of this pattern because they will not be able to get it so you need to have a certain emotional IQ to be able to do what is required of you to do disabled come from in the context of the stance of this going forward I mean I think this is part of it just to raise awareness in terms of you know where we are and where we need to be thank you very much for your talk it was very informative and when I hear you speak I'm almost embarrassed because of the way that you laid it out I didn't know that and it seems so intuitive and so you know some of the questions have been about looking forward but looking back what is it that has gotten us here and is it important to know by the way that we've been giving care the kinds of things we can change going forward if it were any other disease we know just what to do and our loved one comes home after chemo or doing a leg so what's different here well I think what's different here is that you know I've read you know literature that suggests that the vast majority of what we know about the human brain is that what we've discovered in the past 10 to 15 years and what we also know for a given fact is that we do not understand why people get dementia in general and thereby we don't have an effective treatment modalities so two things I mean I I think the overarching umbrella is that we don't understand why people are getting this you know abnormal protein deposition to get this disease and again the statistical evidence coming forward that this is happening in epidemic proportions so and that is the conundrum we're in so we know that we have the problem what we don't understand that is and the more we understand that is I'm quite heartened by the fact that I understand I was reading some glitches that suggest that there is a global movement from government globally to suggest that having looked at the statistics that there has been a lot of push and a lot of support to come up with some disease-modifying molecule with the target for 2025 because you know there is an acknowledgement that if we don't do something about this this is just going to bankrupt the Health Service so I think that's the direction that we're moving in from a therapeutic perspective no pressure thank you very much for your talk I'm interested in your thoughts around what we should be doing and thinking about as a system of healthcare providers about how we can better support and provide supports for caregivers care partners people that are looking after and living with individuals with dementia in the community I was going to say what I've seemed too clearly forgotten to tell you so in the context of our interesting journey with this over a year what we found was a variety of things now as I've highlighted two dementia care is not for everybody point number one and point number two the even for the people that it's for it is extremely taxing from an emotional perspective to provide the level of care on a daily basis to these people and you know you end up with not only physical fatigue but also emotional / compassion fatigue and the levels of sickness in long-term care is actually quite high but one of the and I'll admit to you very frankly that this is not an outcome that I was expecting to see but with the incorporation of the butterfly motor because it facilitated really connecting with the dementia individuals there was a real sense of purpose with the carers and you know they really actually looked forward to coming into work and sick times went down considerably in in overall terms so what we what we understand is that because of the you know rolling forward of this paradigm anti-psychotic usage declined because of that the number of Falls declined sick times declined overall levels of what I would refer to as you know because of the meal status that are highlighted to you people eating better so nutritional scores rose so overall everything seemed to be headed in the right direction but I mean in answer to your question I certainly feel that this paradigm some of those questions get answered I mean better and you know the carers enjoy what they do a lot more walking out the door everybody to have a wonderful holiday that is until January in January we'll be joined by dr. Kevin Smith I know I have to take on the new CEO of Newington but he has the CEO of you again and shortly after that we will be joined by nominates the Deputy Minister of Health other than that have a great day

Author Since: Mar 11, 2019

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