I Am Not Sick, I Don't Need Help! - Dr. Xavier Amador - Pt. 1

you although it is a serious brain disorder schizophrenia is treatable this is a time of hope for people with schizophrenia and their families dr. Xavier Amador is a world-renowned expert on schizophrenia and bipolar disorder he spoke recently at the 17th annual living with schizophrenia in Nova Scotia 2005 conference what I'm going to talk about today is a problem that affects a lot a lot of people and I'm going to talk about how common the problem of lack of insight is into serious mental illness and I'm going to talk about the research I'm going to talk about things that we've actually learned over the last 10 15 years about the nature of this problem why do so many people with schizophrenia with schizoaffective disorder with manic depression why do so many of them not understand they're ill and why do we and but when I say we I mean mental health professionals and family members get into these battles that seem to never end and get us nowhere but but estranged from the person we're trying to help so that's what we're going today we're altima lis going to talk about what you can do very very specifically things that you can do to engage somebody in treatment who doesn't believe they need treatment who doesn't believe they're ill so ultimately that's where we're headed and frankly that's the part I like best but I think we need to sort of share a common knowledge base before we get to talking about how do you engage somebody so I'm going to talk quite a bit about some research before I do I want to have a feel for who who I'm speaking to I don't want to make too many assumptions so I'm going to take a little poll of the room and I'll raise my hand and let you know who I am - how many of us have a family member with a serious mental illness like the ones I've just mentioned ok how many of us have had or have serious mental illness ok me too how many of us have ever worked and as a mental health provider or as a consumer peer specialist something along those lines wonderful so I have where we have all three major stakeholders in this room people with the illness the people who love them and the people who are trying to help them who are professionals and it's only when you have all three together I think that anyone can really recover or do as well as they they ultimately can do let's just start with very briefly how common the problem is who here by the way who here has heard me speak before would you raise your hand okay so you can't answer this question if you've seen this picture who has not heard me speak do you know who this is a picture of anyone hmm I thought I heard somebody you know anyone want to make a guess now there's the well of a family it is yeah and what I guess that's a bad question I meant the woman in the picture exactly I think you're right it was not a movie star it's David Letterman she was the one she was the woman that everyone knows it's David Letterman's stalker she's the woman that had a delusion she believes she was married to him so she would show up in his house again and again and again charged with trespassing criminal trespassing she once stole his car and drove through the Holland Tunnel in Manhattan and was pulled over by police and she was incredulous when the police officer told her that she was in a stolen car she's like what do you mean it's a stolen car it's my husband's car right you all know who David Letterman anyone here not know who David Letterman is No okay that was a Canadian or something anyway her daughter who's sitting on her lap and that this one right here that wears the Senate rear-projection anyway her looking for a shadow that's scary I couldn't see my own shadow spooky up here anyway annalisa helped me with the book that has the same title as this talk I'm not sick I don't need help and annalisa had never ever heard what her mother's illness was her mother had never gotten treatment she was again and again brought before judges for criminal trespassing she developed a delusion about an astronaut as well that she was married to him never got treatment and ultimately she died from the illness and in her case of a schizoaffective disorder what do I mean when I say that she died from the illness anybody right by suicide I don't like to say commit suicide because it sounds like a knowing and voluntary decision one makes and I think in the context of mental illness it is very rarely a knowing and voluntary decision so I prefer to think of it as like dying from cancer or heart disease at any rate Margaret Mary like many many people with these illnesses never understood she was ill no amount of pleading from family members and friends no amount of coercion from judges ever got her to say I'm sick and I need help about 6 million in the US people have the disorders I've been talking about I'm going to talk mostly about today although much of what I'm going to say you know really goes beyond these psychotic disorders so-called psychotic disorders but today I'm talking about schizophrenia schizoaffective bipolar disorder with psychotic symptoms and about 6 million in the u.s. people don't understand that they have I'm sorry have this problem one of these disorders and about half don't understand that they're ill so it's a big big problem I'm going to talk a little bit in detail about some of the research but before I do I just want to mention another story another family's story that that hit the headlines this is of course Theodore Kaczynski who you might remember as the Unabomber how many here never heard of the Unabomber a few of you okay he for about 20 he was the first person to ever long before Osama bin Laden he shut down the u.s. air system for a day because he was sending bombs for about 20 years to various people university professors and Airlines Ted's brother David and Ted's mother Wanda tried for many many years to get him to understand that he was actually very ill he has schizophrenia and very very smart man he was a professor at Stanford he had gotten a PhD in math brilliant mathematician Harvard trained but unlike John Nash you know the story from the movie A Beautiful Mind you know unlike John Nash who had schizophrenia was in a Britt was a brilliant mathematician he never ever understood he had an illness and to this day he still doesn't understand so when he was arrested and his attorney saw that he had he had confessed essentially to himself he hid in his diary described in great detail what he had done they saw especially when they saw his his state and he looked at him on the right when they arrested him he had pants on that had not been changed over a year there was mold in the pants and tears in the pants there was mold growing in his bed there were piles of feces his own feces in his small little cabin that's one of the reasons you may recall the defense actually took the cabin put it on a trailer bed in Montana and brought it to Sacramento for the court case they wanted the jury to walk in that house they wanted them to see this is not a brilliant diabolical evil mastermind this was a very very very sick disorganized sad person with some unfortunately murderous murderous delusions so you know I always hesitate to get into this story because I don't want to talk about people who have committed crime who are mentally ill but the fact is like anybody whether you have a mental illness or not you can commit a crime in this case it really was his psychosis that led him to it I mean people with mental illness are not more violent and certainly are not more criminal if you will than anybody else but do unfortunately end up in the criminal justice system at any rate these defense attorneys were really remarkable in their desire to help him one of the first things they did was they got him evaluated and they explained to him if we can tell the story of your mental illness if we can talk about the fact that for 30 years you've been delusional you have schizophrenia you've been terrified and that's why you you mailed out these bombs because you were so frightened if we can tell that story we believe we can save you not from prison you're going to prison but we can probably save you from the death chamber so he understood what they wanted to do and he absolutely adamantly refused and tried to fire them tried very very hard to fire them and came very close to actually getting his attorneys fired simply because they wanted to tell the truth they wanted to talk about his mental disorder his mental illness and the role it played and what had happened his lack of insight was so severe he was willing to die literally as he put it I would rather be executed than be portrayed as a sickie it's the way he put it unfortunately I'll come back and tell you what happened if you don't remember but I was very struck especially by the tall guy with the gray beard Gary Gary sowards I was very struck by his anxiety and his frustration with Ted he worked very very closely with Ted and he tried again and again and again to to convince Ted he had a problem I mean he would show him pictures of his cabin he would shoot Ted nobody lives like this come on I mean don't you see that something's wrong absolutely wrong strategy to take with him it's the kind of strategy I took with my older brother Henry when my brother Henry first became ill I thought I would very kindly and compassionately point out to him all the ways in which he was clearly psychotic and all it did was make him angry make him stop wanting to talk to me and make him feel very very alone because all I did was argue with him and you know ten years later or so I'm having conversations with Gary who's working with Ted Kaczynski and I'm hearing myself I'm hearing all the same struggles you know Ted understands that if we can present this you know this evidence we can probably save his life but he won't let us do it I don't understand why he's being so stubborn what can I say how can I convince him and I was just really really amazed and struck by by how my personal experience as well as my experience as a clinician working with people in clinical settings was being mirrored in this in this case well denial of illness impairs common sense judgment right would you all agree with that yes okay all right you're you're wrong I think you're wrong anyway think about it if you if you didn't think you were sick who here if you did not believe you had diabetes you're absolutely 100 cent certain you've been to the doctor you know you don't have diabetes would you take insulin raise your hand what why isn't anyone raising their hands because you're not sick what but what does that mean what exactly you don't have diabetes so why would you take medicine right you're not sick why would you take medicine if you took medicine what would that be admitting you're sick well actually you could interpret it that way if you took medicine for an illness you didn't have it would be bad judgment wouldn't it anybody here who would take insulin for example for an illness they know they don't have would be a bad idea could hurt you so the trick question wasn't it wasn't to be funny it was to get you to shift your thinking as we go forward in this in this conversation this morning I want you to shift your thinking and put yourself in the shoes of the person who says who believes they're not just saying this they know this I am not sick there is nothing wrong with me so when that person refuses treatment what they're doing is exercising what common sense good common sense I know that sounds backwards but if you're living in that person's skin if you're walking in that person's shoes that's exactly what it is from their perspective isn't it so my conversations with my brother Henry you know from his perspective I was crazy are you out of your mind I'm not gonna take these medicines they're gonna poison me who's heard that raise your hand who's heard that in discussions with somebody with a serious mental illness who doesn't believe they're all real hi it is poison look how common that is keep your hand up and look around the room folks and see what I see isn't it amazing so why is there such consistency because people are people and it's it's it's common sense for a human being to refuse medical treatment for an illness they don't believe they have and to fear that it would be poisonous or hurtful to them well if we're not dealing I'm sorry are we dealing with denial what I'm going to talk about is actually a lot of research indicating that we're not dealing with simple denial or defensive Ness what we're dealing with actually as a syndrome a neuropsychological syndrome or even a neurological syndrome called anis Ignacio and this is a syndrome that was first described about a hundred and twenty years ago by Wow maybe 100 years ago by French neurologist and it describes what happens to people after various kinds of brain injury and the classic example is somebody who is paralyzed on one side of their body following a stroke so imagine you're paralyzed anyone here ever known anybody paralyzed on one side okay now imagine that person doesn't know they're paralyzed that's what the syndrome looks like this is somebody who is unaware of their neurological deficits and there's lots of ways you you can this can be manifest lots of different ways this can appear and I'm going to give you some examples in a few minutes for those who want to learn how to say it this is not the phonetic spelling it just helps me to remember remember how to say it and no sig no sia let's talk quickly about some research in 1989 when I first started doing research I was very very interested in this problem because of my experiences with my brother my brother was somebody who I really looked up to growing up he's seven years older than me Henry taught me a lot of things in life our Father had died when I was very young and Henry in many ways like a father to me he taught me how to ride a bicycle this young man in many respects took me under his wing and taught me among other things how to be how to be humble and how to be self-reflective very very insightful person and he still is so when he first became ill and went from being delusional terrified and terrifying he was very frightening because he was so scared he was getting angry hearing voices and then going to that first hospitalization and coming out of that hospitalization calm not hearing voices not believing any longer those things that terrified him the delusions he had about my mother in particular and that she had been taken over by the devil and I mean all sorts of bizarre variations on that so he comes back and he's doing great and within two days the pills are in the garbage and that started about seven years of me fighting with him and arguing with him and not understanding him and thinking that he was actually being really stubborn immature difficult you know I didn't understand that he was exercising common sense I thought that he was being really in many ways childish and that he needed to face up to the tragedy of he's sick now and this is back in the early 80s and back then and the prognosis you had and it was inappropriate then and it is today as well the prognosis back then was well this is a terrible declining illness and you're just going to get worse it's not a pretty picture how many how many heard that with a relative right the sad part is that in the early 80s there actually was research that indicated that that wasn't the case and still doctors myself included we're learning that we were learning the old descriptions from kraepelin and boiler which were not based on science not based on empirical data but anyway that's another story which is related and what we'll touch on it so when I started my research career I I was you know I was in vested in this this was so frustrating for me I wanted to help my brother there were many patients I'd worked with over the years by the time I started doing research and I looked and there really wasn't a lot of empirical research on insight on this problem so I had an opportunity to do a study really to attach an insight scale to a larger study that was going on when the DSM the Diagnostic Manual was being revised in the late 80s early 90s and I just want to give you some major findings from it the first is and we we looked at about 420 odd I think 420 or so people with various psychotic illnesses and this is just a slide of the of the people with schizophrenia 221 about 60% were moderately to severely unaware of having an illness they didn't think anything was wrong about 40 percent said yeah I've got a mental illness or I've got nervous condition they had insight right we found the same thing the schizoaffective disorder group we found the same thing and the people with bipolar disorder we didn't find it in people with psychotic depression which was really weird to me because if this was psychosis if this lack of insight was someone being defensive like I thought my brother was then why if you had psychotic depression wouldn't you be defended against that why wouldn't you also be in denial of that and that was one of the first things I got me thinking that maybe this wasn't simply denial we looked at awareness of signs and symptoms symptoms of mental illness there's just really two big take-home points I want to I want to give you from this slide and again schizophrenia bipolar schizo a fleet of disorder people in this sample had the same pattern that the people with schizophrenia had there were a number of problems with being aware of signs and symptoms so they just look at this first bar 40 percent of the people with schizophrenia were unaware that they heard voices in other words they knew they heard voices but they thought they were real they thought other people could hear them what I'm not showing you was interesting 60 percent the other side of that bar understood the voices weren't real they had different ideas about what caused them but they understood they weren't real but what's the take-home point there are problems with awareness of - across even the signs and symptoms of the illness so it's not simply people who are saying there's nothing wrong with me they're not even noticing or are not even aware of the specific symptoms many many of the people in these studies and there been many since this one that's one take-home point but the other one is that you have people who are aware that they have mental illness or unaware they have mental illness and are aware and unaware of particular signs and symptoms so the point being that it's not as if they're in denial of everything they can have pockets of insight some awareness and that becomes important in just a moment now that study was published in 94 but we finished it in 1991 just gives you you know sort of another example of the snail's pace of science getting down trickling down to the people who who need it and by the way once it hit the archives of General Psychiatry I'm sure no more than a hundred people read it that first year so it I mean it's been trickling still ten years later but right after we completed that study in the early 90s I also found this strange literature on unawareness of tardive dyskinesia and everyone knows what that is movement disorder that especially the older antipsychotics were prone to cause in a subgroup of people so you see things like this pill rolling movement that can't be controlled or the grimacing so in these studies people were asked do you see you have a movement disorder and the answer in this first study that about half of the people with schizophrenia who also had the movement disorder the answer they gave was nothing wrong you don't see that you can't stop your mouth from doing this no I never noticed that this study found the same rate about half of the people with schizophrenia with the movement disorder were unaware of the movement disorder now when I looked at this I really started to wonder if this was denial I can understand being in denial of a serious mental illness what with the stigma what with the fear we have about going crazy any any and all of us have that every day of our life whether you're aware of it or not I can understand that theory this is denial this is intense denial but why would you be in denial of this your hand doing this I mean I'd be scared if I saw that you know I'd want help with that or I'd be curious about it I can't imagine I'd be in denial of it I'm not saying this is proof of anything but I'm giving you a feel for how am I thinking on on this problem has evolved in this particular study and this was done later so I actually am out of order chronologically but in that study and this one and the last one all three studies found that the people with schizophrenia who were unaware of their movement disorder we're not always unaware of the schizophrenia so we had people in these studies that that study by trim oh who was a postdoc I'm actually one of the authors on that and I'll tell you about that study we had people in that study who knew they had schizophrenia but they were unaware of the movement disorder so again to me that's not sounding like denial right if denial is about pushing out of awareness something that is so painful to be aware of why would you be aware of the stigmatizing mental illness but unaware of a movement disorder it just didn't make sense I'm not saying denial isn't play a role in these situations but I am saying that we overestimated it and I'll give you the proof in a few minutes well the evidence anyway this last study I just want to say one more thing about their Karachi study they videotaped the the people in the study and they showed them their movement disorder and all of them developed awareness in one form or another to varying degrees they became aware that they had tardive dyskinesia which kind of makes sense right you're showing them a video it's kind of hard to still hold onto the idea that you're not having problems controlling your movements but what's really striking is two weeks later when they revile you a 'td these patients and ask them about their movement disorder nearly every one of them said oh no I don't have it anymore I headed back van when you showed me that video but I don't have it now now that to me is not sounding like denial and you break through denial you know some of it may come back but generally you learn something you learn something very important that sticks with you generally I just tell you a little story to illustrate that point when I'd mentioned earlier that I've also received psychiatric treatment and I had my first clinical depression in the early 90s and was completely utterly absurdly in denial about this I had lost a lot of weight people thought I was physically ill and I was if you consider depression as a physical illness but they thought it was something else I wanted to die I was so depressed I was waking up crying but I thought I'm okay that was wrong with me you know well you know I was kind of I could I could sort of point to some things that happen in my life that were making me sad but this had gone on for almost six months and I had other signs and symptoms glaringly obvious it should have been glaringly obvious to me but I was absolutely in denial my friend who worked next door who worked in a depression research study came over one day and essentially sort of you know held a mirror to my face or it was almost like showing a videotape to these patients she said you know would you answer a few questions from a questionnaire that we're working on developing I said sure she gets three questions into and I'm like this is the Hamilton Depression Inventory this is nothing new she's what just bear with me just answer them you know honestly and we get through it we get to the end she told was it up and I'm smiling at this funks I know what she was doing and she said well congratulations you you've met criteria for electroconvulsive therapy study and I got it I mean I got it because I was in denial I didn't have Ennis Ignazio this is not a neuro cognitive deficit in my case it was psychological defensive miss my denial was so severe I at that time I was writing a book called when someone you love is depressed and the chapter I was working on I'm not kidding this is not an exaggeration that week when she came by the chapter I was working on was the title is recognizing the many different phases of depression I mean I completely missed this and when she and she joked with me about it and I saw it now since that day I've had moments where I've underestimated my need for treatment but for the most part I've never ever unlearned I have not since that day forgotten that I am somebody who is vulnerable to episodes of clinical depression I am I don't like it I used to never talk about it I don't feel that comfortable talking about it even now to all of you and I know this is a very supportive welcoming audience so it's not still not easy for me you know it still is embarrassing it still makes me feel weak I always get a little scared when there's a videotape who's going to what prosecutor is going to see this in some case I'm testifying on and do some bizarre thing with it you know so the stigma is still there the anxiety about the diagnosis is still there but you know what I'm aware that's the difference between denial at least for me it's a very real difference between denial and what I saw in my brother who could never ever seem to lower his what I thought were defenses were these guys in that last study they broke through the unawareness their lack of awareness of their movement disorder and yet it didn't stick two weeks later they'd forgotten so all these things are making me wonder I'm going to come back to to the data that indicates that this is really more often than not this lack of awareness that severe is really a function of frontal lobe pathology and and probably other aspects of brain function are involved as well but not surprisingly the frontal lobes are play a large role before I do I want to summarize though some other research not surprisingly non-compliance with treatment and services is much greater and someone who doesn't believe they're ill why would I go to a day program if I didn't think I was ill right and I'm summarizing well over 200 studies now over the last 10 years I mean there was an explosion of research in the 90s there was really only a handful about four empirical studies prior to 1990 now there are over 200 the last time I counted I mean it's really been a remarkable change you couldn't get a grant to study this back in 91 now you can I've had I've had several and I know lots of people who have had something more than several but not surprisingly if you don't think you're ill you're not going to participate in any of the treatments or services it's not entirely true but that's what most of the research finds involuntary commitment is greater poor course of illness and that's been a research in a lot of different ways a number of hospitalizations number of episodes quality of life measures quality of social relationships work you know you look at quality of life and and and also measures of the the illness itself and things go worse for people who do not understand they're ill who persist in that unawareness not it's not really surprising to any of us is it why this would really make things go poorly for the person you take just the example of my brother which I can't escape because it's the most important instance of unawareness in my life and just when we were fighting so much about it he was in and out of the hospital five or six times a year but then he also was disappearing and going hitchhiking and leaving because every interaction he had with me or anybody else in our family quickly turned into this this battle his fight where I was telling him he was sick and he was telling me I was crazy the psychiatrist all brainwashed you hobby you know that's when he was being kind usually he was really angry so it's not surprising criminalization of people with mental illness as well you do see and there are just far less research research in this area but there are some studies now that indicate that those people who end up in the criminal justice system like a Ted Kaczynski or a Margaret Mary ray who never hurt anybody but was trespassing are far more likely to be in that group who don't understand they're ill that makes sense doesn't it that the people who end up doing the Dinan - you call it that here now it's a terrible name that the prosecutors call it dine-in - but basically somebody sits down has a meal and they leave without paying well you can imagine somebody was disorganized with mental illness is prone to doing that and not because they're dishonest or trying to break the law so you see a lot of those kinds of arrests and convictions misdemeanor convictions well awareness of being ill of having one of these illnesses is among the top two predictors of who will take medicine big surprise but what's the other big predictor do you think of who will take medicine anyone I'm sorry support what kind of support I was very supportive of my brother what you talking about I was there for him I personally called the police on him at least a dozen times that was too supportive why do you think that you think I did X I didn't like him I did that because I loved him and the ne I was scared for him I I know you know what you want to say so say it but I'm making a point it's not any kind of support what kind of support can you characterize it not blaming that's an important piece you're right how do we get to the point we're not blaming somebody for their lack of insight I like that Carl Rogers unconditional positive regard I mean you're actually I think you're absolutely hundred percent right but how do we even get to that point because remember back when my brother brother first became ill I was hurt I was angry but underneath that I was hurt I was disappointed this is the man who taught me how to be a man in many ways and and a good and he's a good man and he's an insightful person he's a humble person and I was hurt and angry that he was not taking responsibility Henry take responsibility god damn it's you know pardon me I can go there in a second those arguments at 2:00 in the morning when he was terrifying our mother why aren't you doing what you've seen you take these pills and you're better so how do you stop doing that how do I stop how does any one of us stop being so angry or if it's not anger so accusatory absolutely it's understanding that this is not the person's fault which is where you started out okay so what does that look like what what it looks like is a relationship where you're respecting that person's point of view so that sounds easy doesn't it it's 2:00 in the morning my brother just jumped into the swimming pool he's come in the house he's woken up my mom accused her of being the devil and killing him with laser beams and she's terrified calls me I come to the house I'm supposed to respect his point of view about what he needs to go to the hospital right now that was my point of view it's not so easy it actually is far easier than it would see him and that's what by the way I am going to take a break in about a half an hour and then we're going to talk about how I would do that and how you could do that and how there is some evidence base or research that shows us methods for engaging somebody in such a way that we can respect their point of view while keeping them safe but respecting the point of view of the person with the illness is key especially their point of view that there's nothing wrong with them that person feels that they can trust you because you listen to them without telling them they're wrong without telling them they're mentally ill and in this relationship you're somebody who believes they benefit from treatment those are the three characteristics if you look at the research on what works that's what I that's what I partial out from the research that there are these three characteristics or the relationships that or the social support as you put it earlier that are key to getting somebody in treatment even when they don't think there will even when they don't think they're ill okay you all with me so far any questions before I this is a weird one and I was surprised by this research that we've done in other people have done where you really have large numbers of people so that you have good statistical power where you have reliable and valid assessments of symptoms and insight we find that insight is not associated with symptoms getting better kind of weird when you think about it because I can tell you I've written in many medical charts and many hospitals I know upon discharge insight improved how many of you have written that in a chart we we often see that the person is saying I acknowledge I have an illness and yes I'm going to take the medicine my brother did this many many times many times early on back when in the days when you actually used to have family meetings in hospitals we don't in the u.s. very often anymore because people are only there for like three days but I can remember going to these family meetings and my brother saw the light you know sort of like he had come to Jesus I get it I'm mentally ill I understand I will take that medicine I want to go to that day program can I go today I mean I'm overstating it a little bit but not by much he'd come home and he would do nothing but you of course would start that little denial dance again where I would confront him and he would get mad and you know they got him nowhere I got me nowhere so what was I sing why was he telling me this and why do many people when their symptoms get better often make statements like my brother did that's what the research suggests that's certainly what my political experience has shown me over and over and over again you have people with long history of not believing they're ill suddenly seeing the light when they when they've been locked up in a hospital so what are we seeing a bunch of dishonest immoral people willing to lie is that what we're seeing no then what and they're happy with where they're at okay right but if you ever been in that situation where let's say you you ended up in a hospital and you didn't think anything was wrong with you and you found yourself saying yes there's something wrong probably not I mean it sounds like you because you're saying my mental illness so you already have insight so we're really not talking about somebody who has that gift frankly of understanding that you have difficulties we're talking about somebody who doesn't so my question was are we dealing with somebody who bunch of people who are who are just dishonest and immoral are we my brother lied to me I mean do you know how upset I got with him about this I'm a pretty nice guy actually I'm not as terrible as I sound but I do remember feeling so angry and hurt because it's frustrating day after a week after a month after year this battle it's draining well I don't think did you want to say something why would somebody say something that's not true like that sure that's possible that has something to do with changes in neuro chemistry and so on but I think the answer is actually a lot simpler and let's erase that division between you know those of us with mental illness and those without or with this kind of mental illness or that he was being a smart human being he was exercising a lot of common sense any one of you in this room were you locked up in a hospital right either against your will or you were coerced you were pushed into it by your family and friends any one of you would lie I'm sure or at least it wouldn't be so far-fetched to imagine you might lie and why might you do that to get out to get your freedom right I mean I don't I don't mean to belabor the point but again we lose sight of this person's perspective so easily right you're locked up in the hospital against your will you don't really want to be there and what are you going to say to get out everything and anything that they want to hear yes I lost the last part of what you said who was going off medication you were okay and he or she accused you of something I lost you I'm sorry so the accusation was true then your question you lost it I can if you remember it come back to it all right how many the women in this room think women have better insight this has been studied thoroughly thoroughly credibly and authoritative Lee and I can tell you I will stake my professional reputation on it there is no credible evidence that you have better insight than men when it comes to awareness of mental illness sorry there's a cup a couple of couple of very very good studies with large numbers of subjects with trust me on this but I'm going to make you mate you may be more apt and there is social psych literature on this to seek help than men and it it has more to do with the nature of this problem these disorders in the brain dysfunction I think but I'm going to make you feel better there was a nurse I met who works in ob/gyn who told me that apparently at birth there was an immediate test of intelligence did you know this at Birth the babies when the smart ones when they're born the smart ones not the rest the smart ones when you spank their bottoms hold them upside down and spank the bottoms on all the smart ones the penis falls off you don't get it do you it's a guy is a guy back there going wait what I don't penis that's bizarre what's with that now one is anecdotal and one is you know what never mind I'll let that issue live for now so what causes poor insight well you know when we started our research in this area we considered a few possibilities one of course is this a psychological defense there's been a lot of studies of this we've done studies of this we've looked at experience of stigma we've looked at trait related personality measures ways of looking at whether somebody is sort of inherently a defensive person or not and those things do not predict very much of what we're seeing when somebody says who has mental illness when that person says I'm not sick there's nothing wrong with me and they say it for weeks months and years despite all this evidence this is not a big part of the picture people with serious mental illness are people people get defensive so being defensive is a part of the picture it's just not explaining much of what we're seeing when we see this very severe lack of awareness cultural differences also play a small role understandably so what my brother used to call his philosophical nature the doctors called thought disorder that's a cultural difference right now with education and so on and sort of parsing that out what you would hope that he would come to see that the that he also had thought disorder in addition to being a philosophical thinker but but he never did but cultural differences do make and I'm talking about the larger cultural differences as well obviously between ethnic and religious cultural differences but we also considered neuropsychological deficits and the reason for that is that I had worked in a neurological unit doing assessments for a year at a hospital and met a lot of people with anis Ignasi a-- and found that people with neurological deficits following brain injury who had the severe lack of insight looked very very similar to the many people with schizophrenia and bipolar bipolar disorder etc that I had met they looked very similar to my brother and how were they similar well first of all it's a very very severe lack of awareness and I'll give you an example there's a guy that I evaluated who following a stroke that affected the frontal lobes of his brain was in addition to other areas was paralyzed in the left side of his body I knew he was paralyzed but I asked them as part of the evaluation can you move your left arm and he said sure no problem yes so I asked him to move it and of course it doesn't move because the motor areas in his brain have been injured and I asked him what happened he said well I moved it well no you didn't actually I said well yes I did rather than argue I said tell you what maybe once you'd look at it this time so he turns his head looks at his arm I asked him to move it he doesn't move it I asked him what happened and he hemmed and hawed and hesitated and then he said I don't really feel like it because now he saw with his own two eyes he had not moved it I pleaded with him I was a student at the time I said look I've got to finish this just you know do me a favor and just try one more time for me he said all right all right he doesn't move it I asked him what happened he doesn't want to tell me and then finally after some convincing and reassurance he says to me I don't want to tell you this cuz it sounds crazy but I think you tied it down he did something to it so a very severe lack of awareness wouldn't you say and it's a lack of awareness that he's paralyzed that persisted despite evidence I showed him I proved to him didn't I that he's paralyzed that happened to you wouldn't you wonder if maybe you were paralyzed in fact or at least in that moment unable to move your arm but we also saw what are called confabulations these sort of unreasonable very illogical rather explanations what were his confabulations that the most strange one was that I had tied his arm down he actually gave us two others the first one was I moved it that's a confabulation he didn't move it and yet for a moment he believed he had he's not lying to me when I asked him to look the first time he said what was his what was his confabulation then I don't really feel like it we'd sounded a lot like my brother it sounded a lot like many people I've worked with over the years you know why did you come to the hospital oh because my mother called the police well would the police take you to the hospital just because your mother called well yeah she has more seniority than me this I'm quoting a guy in the book called Matt he's 27 years old seven year history of schizophrenia and that's literally exactly what he said I said well why would the police take you to a psychiatric hospital they took me to an emergency room I said well what would happened there he said why they relieve me of my clothes and they said you're going to be here for a while we a while we want you to get your thoughts together well where'd you go then Matt well they took me upstairs to a psychiatric ward real nice guy was there I said well Matt I'm confused you're saying the police brought you to the hospital because you had an argument with your mother by the way he was handcuffed originally they take it in emergency room that put you in a hospital gown and they transfer you to a psychiatric ward why would a psychiatric ward admit you why would they admit you and he said literally yeah I think that's all they have available now because of all the heavy drug and alcohol abuse they're not receiving aid for a general checkup clinic and his belief at that point in time during that interview was that he was in the hospital for a checkup now he was in a psychiatric he was in a research hospital at Columbia University in New York where he was getting brain scans and neuropsychological testing and interviews and blood tests and so on so I can see why his mind sort of went in that direction because he was in fact getting very checked out you know inside now but that's not why he was in the hospital so you see the same kinds of confabulations that inability to really understand and at times what from our perspective is this unreasonable desire to prove that there's nothing wrong with me that's self concept that I'm not sick well after seeing this clinically these patients with unawareness of neurological deficit and doing some research in that area and finding that among the brain regions and we've actually done some research on this - that injury to them will result in anis Ignazio among them is the frontal lobes of the brain we knew that people with schizophrenia have lots of difficulty with frontal lobe functioning and so we had we had hypothesized my colleagues and I back in the early 90s let's look at those two problems together in the same person and see if there's a correlation between frontal lobe dysfunction and that really really bad insight that persists you know despite opportunities to learn that the person has an illness this list is obviously not even nearly updated and I keep promising to do and I keep not doing it but maybe I will after this talk but there are as many studies that are as that are listed up here which find generally moderate and about a quarter of them have found even some strong correlations between measures a frontal lobe function and level of insight and the pattern pattern is exactly what we expected in those people with very severe and pervasive problems with insight they tend to have frontal lobe dysfunction they also have problems on these neuropsychological measures now there's also been brain imaging studies of structural differences as well as functional brain imaging studies and the data really have have been quite reliable and robust that that what we're seeing here when we see that very severe unawareness that conflicts despite the fact the person has been shown evidence that they're mentally ill and you see confabulations and it persists again over months or years you're seeing something that's really a cognitive deficit it's a symptom of the illness and and that led to a change in the language in the DSM although I was the co-chair of this last revision I want to point out that every text change was peer reviewed this single paragraph went to I think four different experts with an appendices of research studies and we asked them do you feel there's science to support this statement and ultimately they did at first before reading the articles one of them said I don't think there's data for this and I asked well did you read this read the studies we sent you yet he said no so I'll read them then tell us so there's still that big gap between what we know scientifically and what the field knows but I just want to point out a couple of sentences a majority of individuals with schizophrenia have poor insight regarding the fact they have a psychotic illness evidence suggests and this is really the important point that poor insight is a manifestation of the illness itself rather than a coping strategy so in other words it's a symptom of the illness it's not like I thought my brother was being not a consequence of him being defensive or just coping it's a symptom of the illness like delusions or hallucinations or flat affect and it may be comparable to the lack of awareness of neurological deficits seen in stroke termed and a cig no seeum you will still find many clinicians who will make the assumption that if it's a loved one or a client you're working with or a friend this person's in denial and it's simply because they have not yet been exposed to the research and you've just been exposed to a summary of the research but there is quite a bit of good data out there so how do we understand this problem the way I understand that is it's essentially somebody's self-concept is stranded in the time before they became ill ted kaczynski today more or less he doesn't look like this anymore but that is a pretty good depiction of how disordered he was still thinks he's the man he was at Harvard somebody who people took very very seriously someone he said he thinks he's never had poor grooming and hygiene that's just a great example of unawareness of a symptom he has this negative symptom where he does not you know involved himself in grooming and hygiene he doesn't get how mal odorous he is or how diseased his surroundings were and how dirty he was he still thinks he's this person he still thinks the world takes him as seriously as they did then that his ideas were as as marketable if you will as they were back when he was at Harvard and that makes sense to me my brother every time we would have conversations about what does he want to do he would say the same things he'd say to me before he became ill it's the same thing that any human being would say all I need is a job place to live and a girlfriend you know or friends and I unfortunately used to say things like well I think you're putting the cart before the horse you know you got to take your medicine first then maybe in a year or two we can talk about a job thinking I was being kind and helpful and what I was doing was in many respects denying his humanity and not understanding that this is simply a symptom of the illness that he had no control over we take a break in just a minute but I want to just summarize a few points and when we come back from the from the break I'm going to talk about how we can actually engage somebody who doesn't believe they're ill how do we get that person in treatment well it turns out there's a lot lots of things we can do I mean the news is actually very good news I think

Channel: SSNSC

Views: 47,469

Rating: 4.77561 out of 5

Keywords:

Id: Lstn6WNnCRc

Length: 57min 36sec (3456 seconds)

Published: Thu Nov 19 2015