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Hoarding Disorder: A Comprehensive Overview
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Good morning, everyone. Welcome. Nice to see all you here at this early hour. We're lucky to have gotten through our equipment crisis just about in time. So I'll go ahead and get started. My name's Randy Frost from Smith College. With me today is Karen Rodriguez from Stanford. And we're going to talk about hoarding disorder and do a comprehensive overview. We have a lot of stuff to cover today. And we want to focus on three primary things. First of all, we want to talk about what is it. And we're going to talk a lot about symptoms and go through the diagnostic criteria. We're going to talk a little bit about what we know about why people hoard. We'll present a model that we've developed over the years. It's a heuristic model, but it's guided much of the research on hoarding since the beginning. And then we're going to talk a little bit about intervention and treatment. So let's start with the diagnostic criteria for hoarding. As you know, hoarding became a disorder in 2013 with the latest revision of the Diagnostic and Statistical Manual of Mental Disorders. And since then, it has also been included in the International Classification of Diseases, the latest revision of that diagnostic scheme. There are four inclusion criteria here. And I want to run through them quickly. The first is persistent difficulty discarding or parting with possessions, regardless of their actual value. Now, there are a couple of things that are important here. One is it's not just throwing things away. It's letting go of things in any fashion, giving them away, donating them, and so forth. And the second important thing with this criteria is that it indicates that the value of the object is not material in this criteria. And that's to separate it from the diagnostic criteria that exists for the obsessive compulsive personality disorder. One of the criteria for that disorder says the inability to discard worthless or worn out things. One of the things we know about hoarding is not limited to worthless and worn out things. People who hoard collect everything and not just things that have no value. The second criteria is that this is due to a perceived need to save the items and distress associated with discarding them. So it's not simply a problem of motivation. People's home fills up with things and they just don't have the motivation to get rid of them. They really do have an attachment to these things. We're going to get into attachments in a much more detailed way as we go along. The third criteria is the accumulation of possessions that clutter active living areas and substantially compromise their intended use. So this is really a consequence of the behaviors that we've just talked about. Sometimes the living areas are uncluttered only because of the interventions of third party, family members, authorities, and so forth. In that case, we can still make the diagnosis of hoarding disorder. The fourth inclusion criteria is that this causes significant distress or impairment in social, occupational, or other important areas of functioning, including maintaining a safe environment for oneself and others. So in severe cases, we see problems with care for elderly family members and for children. And so that's why this is included here. There are two exclusion criteria that this is not attributable to another medical condition, such as a brain injury, cerebrovascular disease, or it's not better accounted for by another DSM-5 disorder, such as OCD, major depression, psychotic disorders, and so forth. There are two diagnostic specifiers. First is with excessive acquisition. We're going to talk a little bit more detail about excessive acquisition in just a moment. The second is level of insight. Now, this is common to all of the disorders in this section of DSM-5, where insight is determined to be good or fair, poor or absent. And what we find here, it's a little bit difficult, and we'll talk about it in a second, to figure out the issue of insight in hoarding. When we do research where we are seeking volunteers to be in our research, we find relatively few of them have absent insight. But in community samples, that is, samples that were collected from community agencies that deal with hoarding. Based on the employees, the people working in these agencies, their estimate is that about half of the people who they encounter with hoarding problems have insight difficulties. And we'll talk a little bit more about that. The nature of insight in hoarding disorder is a little bit hard, as I mentioned, to determine, because the classic definition of insight has to do with anosagnosia, that is, the inability to recognize the effects of a behavior. That is, that this is an illness. But in hoarding, we see a couple of things that are sort of tied up with the symptoms. And one is what we call clutter blindness. So for instance, a woman who's home, I'm going to show you in a minute, part way through and I made a number of visits to her home, part way through, she said something to me quite telling. She said, you know, when you show up, if you're not here, I'm fine with this. But when you show up, I notice the clutter. And I feel terrible. I feel like an awful person. And then when you leave, I don't notice the clutter anymore and I feel better. We've seen this so often that we've started calling it clutter blindness. So when they're in the home, they have somehow habituated to the clutter so they're blind to it. And this can look like absent insight. It's not truly absent insight. It's really a more problem of the avoidance behaviors that we see in this problem. And the other thing about absent insight that's difficult to determine, whether it's absent insight or not, is the defensiveness that develops among these folks. If you can imagine, most of these people are older, above 40, 50 years old, and they've gone through decades of criticism from family, friends, authorities, and so forth. And they've built up a set of defenses against that kind of criticism. And some of those defenses have to do with simply denying the existence of this problem or redefining it as a non-problem. So for those reasons, it's really hard for us at this point to know how many of these folks really do have absent insight. So now let me take you through the home of someone with a moderate hoarding problem. And I want you to notice a few things here. If you look at the top of that table, you see a wide variety of things. See egg cartons, newspapers, ribbons, telephone books, light bulbs, a seemingly random assortment of things. So keep that in mind. These are little clues to what we see in hoarding behavior. In this next slide, what we see is a slightly different set of things, but also a mixture. So you see a vase, you see some plastic containers with the little plastic game pieces in them, books, papers, and so forth. And you see the tops of storage bins, okay? So it tells us a little bit about her situation. She's gathered the things necessary to do something about this problem, but those things simply end up on the pile instead of in use. This is another shot of the same room looking in the other direction. And the important thing to point out here, it's again, a seemingly random assortment of things. That's the door to get into her house. So if there was a fire here, she would not be able to get out. So you could see the dangers we see there. This is her den or TV room. And she sits in that little corner of the living room, she says, every day, and spends three hours trying to organize her things. And this is what it looks like. So you get a sense of how there's some ineffective behavior going on here in terms of trying to sort through this stuff. This is the upstairs hallway to her home. And you can see here, bags filled with gifts that she's purchased over the years. Same thing happens each time she's out. She sees something and she thinks to herself, that would make a great gift for someone. Sometimes she has someone who she knows and wants to give it to, sometimes not. So she collects it, brings it home here, and here it stays, so it never gets out of here. Keep that in mind. It comes in here and there's no processing of it after that because we're gonna come back to that issue. One of the things we see in about half hoarding cases is the exterior of the home also gets cluttered. So lawns, driveways, and so forth. You can see some deterioration in the house here, which is not uncommon in severe cases of hoarding. These are the cases that are likely to get reported to the health department, to elder service agencies. Other hoarding cases where it's all inside the house are a little more isolated, less likely to get reported. The other thing we see frequently is any container that's available to the person gets filled. So here's a car that is filled to the point where it's unsafe to drive, which is not unusual in severe cases. So let's take a step back now and think about what we've got. We've got three different manifestations here. We've got acquisition, we've got saving behavior or difficulty discarding. And we can think of it in one or both of those ways. And we have a disorganization of all this stuff. I'm gonna talk about each of these three things as we go along here for a second. The first is acquisition. And the question came up as we were putting together the diagnostic criteria for hoarding is whether excessive acquisition should be a diagnostic criteria for hoarding. And the issue is how frequently do we see excessive acquisition and hoarding? The acquisition that we see is really the same sorts of acquisitions that all of us have. We buy things, we sometimes pick up free things, we sometimes steal, or at least people sometimes steal, and we passively acquire. If you just saved all the credit card applications you get in the mail, how soon will your house fill up? So forth. So what we see in hoarding is, these are some data from one of our acquisition studies. When we're asking people about their excessive acquisition, 60% of them say, yeah, I do acquire excessively. And we'll talk about exactly what they're acquiring is in a minute. 28% say, I don't acquire excessively now, but I used to. And what they say is, I used to acquire a lot, but now I avoid all those places where I acquired, and so I don't acquire as much anymore. Another 4% say, I don't have a required problem now, I have never had an acquiring problem, but I avoid certain places so that I don't acquire things. So if you add all those up, it's about between 90 and 95% of the cases we see have an excessive acquisition problem. And it's somewhat hidden from us because people don't really know they have it. And so when they start in treatment for hoarding, they'll say, I don't have an acquiring problem. And we get partway through treatment, and all of a sudden, their acquiring is excessive. And so it's a little bit hard to judge when that acquiring problem is significant. And there's still really this question about whether this should or shouldn't be a core requirement for hoarding disorder. We look at the type of acquisition, about 80% of the sample acquires by buying, about 60% by picking up free things, and over half doing both. We see some stealing behavior, and it's a little bit elevated from what it is with normal populations, but it's still pretty low, less than 10, or fewer than 10% of the people with hoarding disorder steal things. All right, so turning to saving behavior, the types of things people save in hoarding disorder look to be exactly the same as the types of things the rest of us save. It's just that they save more of each of them. The main things saved, clothes, newspapers, books, containers, and so forth, that's the same things that most of us save. So there's no real difference there except in the volume. The second thing, and this is all I've already talked about, is that these items are not simply worthless and worn out items. We've got cases of people whose homes are filled with clothes with the tags still on them, with appliances still in the boxes, and so forth. So the types of items really don't distinguish different types of hoarding behavior with one exception, and that exception is people who hoard animals. Now that's a slightly different question, and there really still is a question about whether animal hoarding is the same as object hoarding or fits under this diagnosis. So we'll have to leave that for now. We don't have time to get into that. Second thing about saving behavior is that this behavior is determined in large part by the nature of the attachments people form to these possessions, and these attachments are the same kinds of attachments we all have for items. Some items we keep because they're sentimental. Some items we keep because we have need for them. They're instrumental. Some we save because they have intrinsic value. We just like them. And these are the same kinds of things, and we're gonna take a much deeper dive into attachments as we go along, and I'll show you some examples of how it gets excessive and rigid in people who hoard. The third of these manifestations is disorganization, and this manifests in two different ways. First, disorganization in the home, and you see that with the clutter. You see that with a mixture of important and unimportant things. See this shot from the woman I described earlier? Somewhere in all of that is a diamond ring she lost a couple of months ago, the title to the car, and so forth, and some of it is stuff, newspaper ads, and so forth. So it's a mixture, and it seems very disorganized. But one of the things that's clear is that if you asked her where her electricity bill was, she would look at that pile and say, I believe it's over to the left and maybe down a foot or so. That's where I would look. So keep this in mind. She's got a mental map in her head, a three-dimensional spatial representation of these objects, and if I were to go in and try to clean this up for her, it would feel to her like I had just taken her file cabinet and dumped it on the floor because this is the way she's organizing things. Second kind of disorganization we see is with behavior. So churning behavior is where she's sitting here for three hours a day, she's picking something up, looking at it, deciding what to do, can't decide, puts it back somewhere, goes to the next item, and she's churning the pile, turning it over, but not getting rid of anything. The other thing we see is an out-of-sight fear. I didn't show you her bedroom, but in her bedroom, clothes are piled on top of the dresser all the way to the ceiling, but her dresser doors are empty. And when I asked her about it, she said, if I put the clothes in the drawer, I won't know they're there, I'll forget about them, and they'll be lost to me. So she keeps them out so she can see them. And so that's part of the reason why all this stuff ends up in a pile in the middle of the room, because she's using this visual cueing strategy. All right, so at this point, I'm gonna turn it over to Carolyn. She's gonna talk a little bit about prevalence and some of the other research on hoarding disorder that's in the system. Thank you so much, Randy. As you notice, I had to lower down the microphone quite a bit. So my name is Carolyn Rodriguez. I'm a professor at Stanford, and I'm director of the Stanford Hoarding Disorders Research Clinic, very much inspired and mentored by Randy Frost. And so I'm gonna be talking a little bit about the prevalence of hoarding behaviors that have been captured. And just wanna give a shout out to our very international audience. We have folks from Mexico and from Brazil and Switzerland, and lots of people who are doing this work. So this slide really highlights this, that hoarding disorder touches everyone across the globe. And you'll see here some of the prevalence across US and Germany and UK and Sweden and Netherlands. And the bottom statistic from postal weight is a meta-analysis, pulling together all this data. And we think that the best estimate of the global prevalence of hoarding disorder is 2.5%. Next, this slide shows a study by Randy in 2011, in which individuals were asked for co-occurring diagnoses, and they met criteria for hoarding disorder. And as what you can see and may come as no surprise to you who work with this population, half of individuals meet criteria for major depression. And you'll see listed here a number of disorders, but one that I wanted to just kind of pull out and highlight is that lower percentages of individuals who meet criteria for PTSD. And what we see is that when you look at individuals who have hoarding disorder and compare them to OCD, they report higher lifetime episodes of traumatic events compared to OCD. And yet, interestingly, as from the previous slide, they're not meeting that criteria of PTSD. So there is much more to understand and hypothesize about the nature of trauma and hoarding disorder and OCD. Now, what does it look like if we look at a sample of individuals who are coming in for anxiety disorders treatment? And here you'll see a study in 2006, showing that the percentage of individuals with generalized anxiety disorder is much higher. We think that hoarding behavior onset is early. And on average, one study reports 17 years old onset. And these symptoms typically tend to be mild. And then with each decade of life, the severity of symptoms increases from moderate to severe. And so now pass it back to Dr. Frost to talk about the hazards of hoarding. So there are a variety of ways in which hoarding impacts people's lives. And the first is poor sanitation. And this is especially for severe cases. It's sometimes hard to distinguish cases of hoarding and with poor sanitation versus cases of poor sanitation without hoarding. So there is a disorder in the international literatures called Diogenes Syndrome, which reflects some of this behavior, but it's not clear exactly what that overlap is between Diogenes Syndrome and hoarding. We do see cases of squalor that do not involve hoarding behavior. Other cases of hoarding behavior that do include squalor or poor sanitation. It's a relatively small frequency of people with hoarding disorder. Probably somewhere between 10 and 20% of the hoarding cases have extremely poor sanitation. We see mobility hazards. If you can imagine, this is the home of a 50-something-year-old man going up and down those stairs. At some point, he may trip and fall. We do see a lot of trip and fall injuries with these kinds of stairways. Blocked exits are a frequent problem in hoarding disorder and can be a real difficult issue for fire departments. Most fire departments in big cities have a special sort of classification for residences that are cluttered like this. In New York City, they're referred to as Collier residents because of a famous case in 1940s of the Collier brothers, which made news with the death of the brothers in a very cluttered environment. The community costs sometimes, especially if they involve cleanouts, where the health department, elder service agency goes in and cleans out the residents. Those cleanouts can sometimes run $40,000, $50,000. And even after that, within months, the residence is frequently filled up again. Homelessness, there is an association here. Frequently in homeless populations, we see hoarding behavior. Sometimes people with hoarding problems will fill an apartment so that it's unlivable and become homeless and maintain a property with their possessions in it. So it's an additional problem that we see. Fire hazard, there's a case study of fires in the state of Victoria in Australia over a 10-year period. And even though hoarding fires occasionally accounted for less than 1% of the residential fires in the state of Victoria, they accounted for 24% of the fire-related deaths that occurred during residential fires in that state. So it's a particular problem. Work impairment and family conflict are also frequent here. And the family conflict is really pretty telling. Over the course of a lifetime, we frequently see family members who end up completely estranged from their loved one with hoarding problems. And that makes it especially difficult for those family members. And so there's just now some research coming out on the mental health consequences for family members who grew up in hoarded homes compared to people who didn't grow up in hoarded homes. OK, so let's turn our attention now to why this happens. So I want to put out this model that we have that looks at the various features of this problem that seem to add to it. Now, we can't say this model is true. In many ways, it's heuristic. What we mean by that is that this model allows us to frame questions, to frame hypotheses and test them. And much of the research in the hoarding literature has done that using this model. And the first are the vulnerabilities that we see. What are the background variables that people who hoard seem to have that might contribute to the development of the problem? And then looking further at what we've seen so far, what are the information processing deficits that we see? Because there are some. We'll talk about them. What are the nature of the attachments and saving beliefs that occur? And we're going to spend a lot of time on that. And then how do reinforcement principles contribute to the development of this behavior, the acquiring and saving behavior, which then leads to the clutter? So let's start with the vulnerabilities. There are a number of vulnerabilities. The primary ones we see are these four. And the first is a peculiar one, one we don't understand. People with hoarding disorder generally have a poor state of health and high levels of disability. We see chronic illnesses in this population. Arthritis, allergies, kidney disease, liver disease, cancer at much higher rates than we would expect for their age. And we have no idea why. They also have higher levels of body mass index. We have no idea why. High levels of diabetes, heart disease. And so this vulnerability suggests maybe there's some more systemic underlying feature going on here. And at this point, we don't know what that is. So there's one vulnerability. The second is a high level of perfectionism. And you wouldn't expect it looking at the homes of these folks. High level of perfectionism and closely associated with that is an intolerance of uncertainty. Keep those in mind as we go forward, because they are important, especially for treatment, because they do affect treatment outcome. There is a genetic vulnerability. A number of studies, both family studies, linkage studies, twin studies, all of which suggest some level of genetic vulnerability. Some studies suggest between 40% and 50% of the variability is associated with genetic factors. And emotional dysregulation. Now, the emotional dysregulation is important. I want to talk just a bit about that. These are the kinds of things that we have seen demonstrated, research has demonstrated, are difficulties for people with hoarding disorder. High levels of anxiety sensitivity, low levels of distress tolerance, high levels of negative urgency, or this tendency to make rash and regrettable acts when they're aroused, and high levels of experiential avoidance. That is, and these things all go together, the tendency to avoid the experience of negative arousal, of negative emotion. Keep that in mind, because it comes in later when we talk about the reinforcing properties of these possessions. The types of information processing deficits we see have to do with these six different features. One is attentional problems. We see high levels of ADHD, or attention deficit problems. We also see a companion to that, which is a highly focused state of attention, particularly when people are in acquiring episodes. So in an acquiring episode, the focus of attention is so narrow on this object that they are admiring and wanting to acquire that the context of their life is not accessible to them. So when they're thinking about whether to buy this, they're not thinking about the fact that they don't have the money to buy it, they don't have the room for it, that they're already trying to get rid of things, and they already have four of these at home somewhere. None of that information is available to them when they make the decision. And so that highly focused state of attention is something that leads to this behavior. And it's something to keep in mind, because we can use that in trying to create a treatment for them. Categorization. As I mentioned before, most of us live our lives categorically. We get an electricity bill, and we put it in a folder with all the electricity bills, or with the utility bills, or something. And then we want to find that one, we go to the category and find the individual member of the category. But people like the woman whose home we looked at before, she doesn't organize things that way. She puts them on a pile in the room so that she can see them, and she remembers where they are. So her way of organizing things is visual, and spatial, and not categorical. And so that's a particular problem, because once you do that for very long, it gets overwhelming. I do that on my desk. I pile things up and remember where I put them. But if I did that with everything I owned, it would be unmanageable. We see issues related to memory. And you'll see some of this in some of the video that I'll show you in just a few minutes. This idea that I need to have this in order to remember something about this object, or something about my life, or something about myself. You'll see that in just a minute. Levels of perception, this is where the clutter blindness comes in. It's kind of, when do I perceive the clutter, and when do I not perceive it? Associations, now here, this is an interesting one. It's sort of unexplored, but it appears as though people with hoarding disorder have a more complex set of associations when they see an object. That is, when they see an object, they have many more associations with it. The woman whose home I showed you, I went to her house 40, 50 times over the course of a long period of time. And I got there one day, and her eyes lit up, and she said, I've got to show you something. She went in the next room, and she came back with a large, clear plastic bag filled with bottle caps. And what she said was, look at these bottle caps. Aren't they beautiful? Look at the shape, and the color, and the texture. Now for me, when I have a bottle cap without a bottle, my only thought, my only association is a trash can. But for her, the association was florid. It was all kinds of things. What can I do with them? What can I make out of them, and so forth? So you see this kind of association. I think that that may reflect the fact that people with hoarding disorder may have a higher level of intelligence. That is, there is a more complex set of associations that they have. The brains may simply be wired in a more complex way, and that makes it hard to manage all these associations. One of the people I've worked with described his brain as a tree with too many branches. And he just follows a branch, and then he gets lost. So I think there's something there about the way in which this happens. Now probably, this is where this genetic component comes in, is the way in which the brain is organized. But that's research to be determined as we go along. Now the nature of the emotional attachments, we're gonna spend some time on this. There really are the same emotional attachments that we all have. And they have to do with identity and opportunity, with safety and comfort, with responsibility and waste, and with beauty and aesthetics. And the difference between most of us and people with hoarding disorder is that these beliefs are overvalued in people with hoarding disorder. That is, they're held more tightly and more rigidly, and they're motivated by different kinds of emotions. The identity and opportunity are motivated by the fear of loss. Safety and comfort is motivated by the experience of distress and wanting to avoid it. Responsibility and weight is motivated by feelings of guilt. And beauty and aesthetics is motivated by pleasure, the bottle cap example. So let's take a look here at the opportunity-identity-related beliefs. Acquiring, saving, motivated by a fear of loss. So this notion of opportunity, a fear of missing out is an important one. This woman whose home we toured just a few moments ago told me once, she said, my stuff is like a river running through my house, and I just wanna stop it long enough to take advantage of these things. Otherwise, I'll lose them, I'll lose those opportunities. The other two, there are kinds of opportunities we see is an opportunity for a fantasized future. That is, if I keep this, something good will happen to me, and something that will give me a new identity, I can become a new person. Or I wanna preserve some idealized past. Let me show you some examples here. Now, this is a woman named Marnie, who I've been working with for a couple of years now. And she approached me at International CD Foundation Conference. She was in a workshop I did where I had a student of mine being an actor in trying to describe what it's like, what the experience is like for someone with hoarding. And she came up to me afterwards and she said, you know what, that just doesn't cut it. I experienced this, why don't you film me trying to get rid of things? And that will give you a more accurate picture of what it's like, more realistic anyway. And so since then, she has filmed more than 200 of these brief one to two minute vignettes of her trying to get rid of something. And this is the first one that demonstrates this phenomena of a fantasized future. That OCD newsletter for me is stacked with information, a piece of paper that has something in it that will change my entire life. And that piece of paper is the best opportunity I've ever had. And that opportunity is lost now because I didn't carefully go through it. Maybe this article in it is gonna inspire me to write this screenplay and the screenplay is gonna be the best screenplay and it's gonna change my whole world. And I'll go from the smaller type house to a mansion in Bel Air. And it's all because I haven't read this one article. So you see the kind of exaggeration that goes on and that's really what's, that's her attachment to this thing. It means this is who I can be in the future. And without it, I'm losing that future identity. I'm losing that sense of who I can be. Now the other part of this has to do with preserving an idealized kind of past. And here's an example of her trying to get rid of something that involved her daughter. Okay, so I know that it would make sense to get rid of this little baby carriage that Kennedy kept with twin dolls and it's disgusting and it's got dirt all over it and it looks mighty good. I don't know, it's all a mess. To me, it's gorgeous and needs to be here so I remember always how she played with it. And if I give it up, I feel like, I don't know, I feel like, I feel so sad and I feel like I'm losing that time when she used to play with it. Like it gets erased from my memory. And I'm wearing gloves not because of OCD but because I have pink eyes so I might as well put that out there. So the deal is mainly I don't wanna let it go and I'm angry that I have to let it go and I'm sad and it feels like I'm saying F you to her childhood but I'm gonna throw it away. I thought it was good for goodwill but apparently it's pretty disgusting. So in my eyes, it's gold and everyone else's eyes, it's trash. So I'm gonna get rid of it and see how I feel. I'm definitely pissed off and disturbed and as Dr. Frost says, that means that that's a good thing. So if I work through it, it's good. If I succumb to it and keep it, I'm not gonna change. So here we go. Okay, so in essence, I feel like in getting rid of this, I am dumping my daughter's childhood. I am no longer going to be able to remember anything about my daughter's childhood. That is my feeling. I know it's not rational because that's what I'm supposed to ask. Is that rational? No, it's not rational but the feeling is so strong I could just, I feel like I could just die and this is all part of, but if I'm not feeling anxiety, I'm not changing. So I feel anxiety and I'm pissed but I'm gonna do it because I don't want everyone living in my shit anymore. So this points out a couple of things here that are different, that have to do with number one, memory. So in her mind, this is a cue for memories that are important to maintain her sense of self, her sense of past. Now this is an important thing. We haven't really researched this very much but if any of you are sort of French literature, aficionados, Proust has a piece called Remembrance of Things Past that sort of gets at this issue and the idea is that he describes this scene where he's eating a kind of cookie that he had when he was a child and all the memories come back to what it was like for him as a child and he'd come back in a vivid way and the best way I can explain it is, for most of us, we have this experience. What happens when you hear a song from your childhood, something you haven't heard since childhood? What happens is you have this experience of what it felt like back then, a visceral kind of experience and what may be happening here is that this Proust effect is exaggerated in people with hoarding disorder and this is unexplored at this point but there's something there about this cueing, this memory issue. The second thing to notice is the range of emotion she's experiencing here. So it's not just distress, it's anger. Anger she's experiencing. So we see this wide scope of emotion that's tied up with hoarding behavior that's different than it is for other disorders like OCD. Okay, the second of these attachments is comfort and safety related and here the acquiring, saving and saving is motivated by distress. Now, think back to what we saw with respect to the information processing problems, the emotional dysregulation. These things are accentuated by anxiety sensitivity because these folks are highly sensitive to anxiety, intolerance of uncertainty and experiential avoidance. This tendency to avoid negative emotions is something that's paramount here. So any time they begin to feel anxious or distressed, they tend to escape it. They tend to do something about it. So here is the experience Marnie has that demonstrates this. I've held on to this. I got the guy waiting outside for donations for the little children. I don't wanna let go of this. I'm so sad and so angry and I wanna hold on and talk to you about it. Called you twice, called Karen twice and I'm just gonna take the risk of letting it go. This I've been holding onto and I'm really upset. I feel like the smart thing to do is give it away but my stomach is in more than knots. I am at a 10 and I'm pissed off and I'm scared and I'm scared how I'm gonna feel after it's gone. Like I lost my kid and I lost everything and I feel awful and I kinda hate you. Okay, Randy, I'm watching the guy go out of our driveway and I'm really sad and I hope I didn't make a mistake. I know it's always best if it serves others and I just saw him go and my heart is broken. I'll survive it but that was definitely a 10 and I just feel like it was a death that just happened. A frequent theme, it feels like I'm gonna die, it feels like it was a death and so forth. We hear that common in folks with hoarding disorder as they let these things go and you can see again the range of emotion she had and some of the negative emotion directed at me even though the decision to let go of this was hers. So the next of these is responsibility related attachments and here the acquiring and saving is motivated by feelings of guilt and there are several ways in which this gets expressed. One is a fear of waste. Some research has suggested that this fear of waste is the single most powerful predictor of hoarding behavior, not wanting to waste something, something that still has a useful life. Now this in a sense is pro-social behavior, right? I mean we as a culture, we waste all kinds of things and so it'd be better if all of us wasted less but for folks with hoarding disorder, this gets to be rigid and extreme and I think this might help us to explain or understand a little bit some of the more bizarre behaviors we sometimes see in hoarding disorders. So some of you may have seen cases where the individual saves and consumes rotting food and most often when that happens, their explanation is that the food is perfectly good and they don't want to waste it and so this fear of waste I think is in large part responsible for this kind of phenomenon. The other thing we see is a fear of harm and the harm is coming to the object itself or to other people in letting go of it and the fear of things coming to the object itself seems to be associated with the extent to which people anthropomorphize objects and I'll show you something in just a moment with Marnie where that seems to be happening. Now the exaggerated sense of moral and ethical duty, this seems to be a feature here of hoarding behavior that's associated with this fear of waste and here it becomes kind of a moral imperative for them to save these things and not waste them, not let them go even though those things are eventually gonna end up in the landfill once they pass and their relatives get rid of these things. So let's listen to Marnie in this fear of harm. This is, my daughter wore this all the time. I don't want to let it go. I look at it, I don't even know what I'm looking for but I'm looking in it for something. I can't tell you what it is. All I know is my heart is in my, it's so heavy letting go of this. It's all stained. I'm so glad it's at least stained because it makes it easier to let go of. It's going to go in the trash right now. This is like, it feels like a sin and I feel like I'm just going to wither away like the Wicked Witch of the West and just go into the ground and that's how I feel and my thought is I'll never survive this intense pain but rationally I need to have a nice home and Dr. Frost, I'm going to do it because I believe that someday I can live in a nice environment if I just keep letting go of stuff even though my head says don't do it, don't do it. Okay, one other thing I feel like as insane as it is, I feel like this is a friend of mine and I'm putting my friend in the garbage and killing her. That's my feeling. I know it's not a fact. So you see this the sense in which she's hurting this object. We see this frequently. Now you also see here the mixture of these different emotions, fear of distress and fear of harm coming together. That frequently is the case for most people with hoarding problems and the final of these saving motives is joy or aesthetic related attachments. Now here the acquiring and saving behavior is a little bit different. It's motivated by pleasure, it's motivated by joy, an attraction to beauty and a sense of creativity. If not creativity then at least the appreciation of the aesthetic qualities of the physical world in which we live. So let's take a look for Marnie. All right, Randy, this is interesting because I just think it's so pretty. It's the prettiest piece of like string that goes on gifts or anything. It's metallic, green metallic and it's just so pretty. I know that I need to let go of it because there's no place for it but these are the things that make me nuts. I can think of a million things to do with it. That's part of this disorder that we are creative but damn I want to keep it and it's not even that it's wasteful. It's just why would I want to toss something so beautiful away that gives me joy but it always comes back to what's my larger objective and that's to not live in chaos. So I'm going to get rid of it. Okay, so these are the these are the motives that we see. These are the nature of the attachments. Now let's talk a little bit about how these beliefs and attachments reinforce hoarding. So somehow seeing new items provokes positive feelings in acquiring episodes that reinforce that acquiring behavior. Resisting acquiring provokes negative emotions and that negative reinforcement leads them to acquire the behavior. Trying to discard things provokes negative emotions and that negatively reinforces the saving behavior. So the saving behavior goes up because saving this allows them to avoid this horrible feeling that they're going to die. Amari says I feel like I'm going to die. Why would you want to why would you want to put yourself in a situation to feel that way and so for her whenever that happens she saves something. The other thing that happens in that coincide with these reinforcing properties is the fact that once the possessions enter the home they're seldom or never used or reviewed. So the things go in the pile and they stay there for decades and they're never looked at and the only time they're looked at is the person starts thinking about throwing them away starts to feel bad and then puts them back on the pile. So these things stay there and they never get reviewed. There's no opportunity to determine the true value these possessions hold for them and that's an important feature of hoarding disorder. We have to understand and so what we can do is maybe turn that around and help people learn how to process stuff. Learning how to determine the true meaning of things is an important component here and if you if you watch Marnie through the last couple of years doing this that's what she's doing by these little videos. She's learning the true importance of these things and there are a couple things that are important in this process for her. One is the sharing of it. She wouldn't do this if she wasn't sharing it for someone else to see. She wasn't going to do this for anyone but me. She wasn't going to do it for herself. She wasn't going to do for anybody else but she just her her vision here when we first met was she was going to help me be able to describe these things so she's sharing them with me. The other thing is that in the telling of the story of the possession which she does in these videos and you'll see you'll see one more that shows this. She is identifying the nature of the attachment that she has to it and she's coming to a decision about where how that thing fits into her life and that's that's a part of this process and she from that she's learning lessons for herself about what all this is like for her because she knows she's got a problem. She's had it since childhood and she knows it and it's impacted her family and and her life as well. So here is here's a slightly longer video that shows a little bit of some of the other stuff we're doing with respect to keeping track of the way she feels. So now she's describing what it's like to try to throw something away. Now in in that process what we've added to that is for her to keep track of how she feels over time after she lets something go. So that's what we're going to see here. Now these are books for my daughter that she might like and she has a hard time picking books. Okay so it has one, two, three, four books that I feel I have to put on her desk because it's like my anxiety is up to about a seven in that it needs to go on her desk so she has the opportunity to see these four books that she might love and therefore change her world and maybe even inspire her to become a writer. So the deal is if I don't put this on her desk in essence I've um stunted her future. I feel like if I don't give this put this on my daughter's desk I am a bad mom and um I she had an opportunity to be a great writer and I've blown it. So I'm going to um rip it up and my anxiety's about an eight. It doesn't help that my dog is panting next to me. That just is making me more anxious. Okay so I ripped it up and part of me saying oh I still have the video. I can repeat it. I can watch it and find out what those books are so that I can give them to my daughter so that she can become a great writer. But I want to be different and I want to live my life so I'm not going to do that. Timer. I can't even talk. I'm so nervous. The timer just went off and that was in regards to what was I supposed to what was the timer Becky for what? I set a timer for checking in on how I feel about I think the recycling. What did I throw out first? See this is very interesting. I can't even remember what it was that I was so upset about that I needed to set a time. The book list. The book list. That's right. Thank you. So um where am I at with the book list? It's now 10 minutes later and it's probably down to already like a four maybe even a three. Um so the deal is if I can sit 10 minutes then I can let things go. I guess that's the deal. 10 minutes. I I don't know if I've rationalized it or not but the truth is if I were to give that book list to my daughter she's a teenager now. She would throw it out even if the books were brilliant because she doesn't want my advice. So um that whole drama was created in my brain and um it's feelings are not facts and and there was not one fact in that anxiety. There wasn't a fact. Okay reporting back about a couple things. One is you see it's so funny I can barely remember it. That's how much of a non-issue it is when I give it time to um settle down. Uh the book thing I I was at a one now. I don't really care. I mean I'm really over here and that's a miracle and that's wild and see it's really funny that the things that I felt so strongly about when I was in it now I mean I get it. I get it now Randy. If you wait it out and sit with the discomfort it'll start to diminish. Okay bye. So you see here this this habituation that happens for her a very short period of time. It's not uncommon in these cases. It just reflects the extent to which her avoidance behavior was so powerful that she never considered throwing these things away. But once she does and but it takes a long time. So she's had to go through many of these things before it really made a big impact on her life. So she's done well over 200 of these kinds of of videos doing this and she's thrown away 99 of the things she considered and does not regret more than one or two of them. But even the regret is important because she's learned that she can live with things that she regrets throwing out and that's an important lesson as well. So at this point let's let me turn it back to Carolyn. We're going to talk more about interventions for hoarding. Wonderful. So next we're going to move into describing the different types of intervention and really just wrapping our arms around all the things that are available in the community as well. And it really ranges from things like cognitive behavioral therapy that is specific for hoarding disorder which we'll get to, to service agencies, case management, there's professional organizer services, extreme of you know court-appointed guardian, there's cleaning and removal services, medication, things like harm reduction, and even bibliotherapy. So self-help support and groups. So I'm going to start in with cognitive behavioral therapy with hoarding disorder which has several key principles. So the first is the assessment of the individual and case formulation and includes a piece of motivational enhancement to really get buy-in and alliance with the individual to really tackle these hoarding behaviors. It includes a component of organizational skills training and practice and the principles involve changing the attachment to things as Randy beautifully described and changing these acquiring patterns. And so in 2010, Dr. Stekady and Dr. Frost embarked on a trial of testing a manual that they had developed for cognitive behavioral therapy again targeted for for hoarding behaviors. And this controlled trial involved 46 individuals that were randomized to the intervention or a waitlist control. And so you'll see the in the yellow line on the top that was the waitlist control and that the had sessions up to 12 weeks. And then as you can see there was a significant difference between the waitlist control and cognitive behavioral therapy at 12 weeks. And then those individuals who are in waitlist continued on and those who were at the in the 12 weeks in the treatment, the 12-week continued to 26 weeks and the waitlist control started to get the treatment as well. And you can see that the effects from 12 to 26 weeks continue to be robust and that was a very exciting and very pioneering finding. And we use a measure called the clinical global measure of improvement and when therapists and individuals are self-rated in blue is you know in comparing pre and and at post and also at follow-up time points you see the very very high levels of improvement on both of these metrics which was very heartening. And I want to transition because you know this work was very pioneering and of course people in the community really wanted to translate these findings and you know Randy tells a story probably much better than I can of a group that approached him and really wanted to to get hoarding skills-based treatment for a book that he and Gail Steckety and Randy David Tolan developed called Buried in Treasures. And you know again one of the things in science is you have these kind of you know ideals and metrics and models but Randy was really open to challenging that and really seeing if this like a peer-led support group could really be helpful in the community. And hopefully does that capture the essence Randy of you have the mic in front of you so if you want to add to it. Well actually I was asked to put together a support group for hoarding and I said I didn't think that would work but I would put together something that was more action-oriented and that's what that's what came about here. And it was undergraduate students who ran the first couple of studies on there so they were the facilitators. No training in facilitating, no training in mental health, but simply they followed a protocol that was sort of outlined around this book. And lo and behold you know this treatment and for short is Buried in Treasures workshop went for 15 to 20 weeks and 13 to 16 sessions. It was a group-based treatment with six to nine facilitators and in partnership with Lee Scher, Randy and Lee Scher developed this facilitators guide that basically translated the cognitive behavioral therapy principles in the manual and in the Buried in Treasures workbook into a how-to guide. It includes like number of pencils, number of you know how to set up the room. It's really really detailed and available at mutualsupport.com. And when they when they looked at it they used a skill called the saving inventory revised and what they found is that pre and post there was incredible reduction in symptoms. It was really really exciting to see that compared to a weightless control group. And as well you look with a hoarding rating scale a very similar effect as well. And so the question is that this is a you know very cost-effective you know peer-led intervention. It's not the psychologist-led intervention that the original study of cognitive behavioral therapy had. And next Carol Matthews was funded to lead a study looking at the peer-led Buried in Treasures group treatment versus the psychology-led cognitive behavioral therapy. And for those of you her clinical trial is a non-inferiority design to see if there's any differences between these two. And it involved a randomization of 323 individuals one of the largest trials with individuals with hoarding disorder. And it compared 15 weeks of the of the peer-led cognitive workshop style group versus 16 weeks of cognitive behavioral therapy. And what they found was that that there weren't any differences between the two. So again very heartening that Randy was open to you know helping and supporting and developing a more skills-based and more disseminable approach to hoarding treatment. And both there are several important factors for successful CBT treatment including things like homework completion, having home visits by clinicians and others is has been very helpful. And the other important factor is changing emotional attachments, being mindful of perfectionism, and adapting the treatment for older adults and children as well. And you see the citations here. Now we're at the American Psychiatric Association doesn't escape my mind. What about psychopharmacology? Well actually there's no FDA approved medications for hoarding disorder. And in fact there's only a few small and open label trials and no control trials. So these small and open label trials include medications paroxetine, venlafaxine extended release, amphetamine salts, methylphenidate extended release, and adamoxetine. So combination of SRIs and stimulants. However caution in these are small and open label trials as well. And so you know we and the order of the effects is around the same as the 30 percent reduction in the saving inventory revised. The same as the therapy okay on the order of magnitude. And so we wanted to ask a question in terms of what do clients want? Are they wanting more development in psychopharmacology and therapy? What are the types of interventions and treatments that are out there in the community? Because we know that it's helpful to have that partnership in order for treatment. And so we did a survey of 203 individuals and asked them of the available services and treatments that are out there which I listed earlier, how acceptable do you find them? And our a priori cutoff was five or greater would be considered acceptable. And as what you can see here is that none of them were very acceptable. But there were some principles that we were able to extract from the data. And the top three most acceptable were cognitive behavioral therapy individual, a professional organizer, and a self-help book. And what were the aspects that made these more most acceptable? So they really liked having personalized care. They really liked a principle of being held accountable. And they had a belief that these treatments would work for them. The least acceptable were medications, cleaning and removal services, and court-appointed guardians. Not surprisingly, the aspects that they found least acceptable were not having control over the process, anticipating distress or harm, which ties into what Randy was saying earlier, and not believing the treatment works. So a lot of folks when we would, you know, got their responses back, they would say, you know, why would a medication help me with hoarding disorder? My issue is with clutter. So there wasn't that kind of link in education that this could actually be helpful for them. So that is an important gap in the field. So the challenges that still remain is that, you know, we have some tools in our toolkit and they do knock down hoarding symptoms. But impairing symptoms remain after treatment, and we need more effective treatments. There's also underutilization and acceptability in treatments. So we need, we just need better engagement of clients. Personalization and accountability could be the way in. And really attaching what Randy underscored is the key piece, right? The strength of the attachment, really trying to understand the basic mechanisms and how we can really tackle this as a treatment target. So we, in order to really think about could personalization, could accountability really be helpful? We, you know, joined forces with Randy and Lee Scherr, who had run the initial Buried in Treasures groups, and thought about maybe adding in to this group-based format 20 hours of in-home uncluttering. And lo and behold, what we found was improved hoarding symptoms, clutter, and functioning. It was feasible and well-tolerated, and on the same order of magnitude as the treatments previously. And so this small feasibility study emboldened us to then do a larger weightless controlled study of 41 individuals with hoarding disorder. And we added the 20 hours of in-home uncluttering. Again, we replicated those findings, but as I was talking to Randy just this morning, it's a challenge in the sense that we're still, even with a lot of manpower, right? 20 hours of in-home uncluttering, still getting about the 30% reduction in the saving inventory revised, as without having people go into in-home. And so community organizations, and recently one near Stanford, San Mateo and Santa Clara, approached us to say, what's a cost-effective entry point into this and to the community? And we've been talking and thinking about how that could be, but at least in our minds we're thinking that potentially we'll offer like a train-the-trainer for those services to be able to deliver at point of care, those services in the home or in the clinics, training on how to deliver the buried and treasures that wouldn't involve the in-home uncluttering. So stay tuned, more to come. And then just a hint for the future is with NIDA support, we ran a small pilot virtual reality for older adults with hoarding disorder. Why do we do this? So a lot of older adults have physical limitations from coming into the clinic. And on the other side, it's hard for people to go into homes with individuals with cluttering to unclutter because of sometimes there's fall risk and dangerous things. And so we're thinking and kind of playing around with the idea is, could we have individuals in their home, take pictures of their items, and then we would create a virtual environment for uncluttering with two purposes. One would be, part of it is for them to see what their home would look like in a relatively less cluttered way, but it would give the ability to manipulate objects and practice discarding objects again and again and in different formats. Within the program, we have, if they decide to put it in recycling or they decide to throw it away, we do have the sound of the garbage truck coming and the item like physically leaving. And so it is not as, potentially not as intense as doing it for real, but maybe just like a pre-practice or a way to sort of in a more controlled setting practice these skills. And Hannah Rayla is a postdoc that led this project. We just submitted it and it also results in mean symptom changes over time across the decrease in hoarding symptoms. So as we wrap up and get ready for your wonderful questions, keep those in mind. We just wanted to say a couple things for friends and family. Please get information. Please get professional help. This is a challenging disorder, challenging for the individual, for their family and for their friends. As much as possible, express empathy and praise progress, even if slow, trying to avoid arguments and negative comments and really rolling with the resistance and taking care of your own wellbeing. As Randy highlighted, there's a lot of anger that is evoked and it's important to get your own resources and help. We are very active in the International OCD Foundation, which is a group that provides information and conferences. And so this is a great resource for you. So in summary, hoarding disorder is an accepted psychiatric diagnosis, thanks to the hard work of Randy and other pioneers in the field. Hoarding develops from various vulnerabilities, information processing problems and beliefs and attachment to possessions. And CBT methods for hoarding disorder are effective for adults. We see it and individuals are really grateful to have an opportunity to work on these skills. And so far as a society and a group, just to champion us, we have limited evidence for psychopharmacological agents and we really need to improve treatments. If you're interested in resources, actually it was really a highlight for me. I remember going as a resident, going to the APA bookstore and seeing a lot of authors and I feel so fortunate to be able to have written a book with Randy Frost that is really the first comprehensive clinical guide published by the APA Publishing. And there's wonderful, wonderful books out there, including Frost and Stecchetti's Stuff, which is talks about hoarding and the meaning of things. And of course, the landmark manual for help for compulsive acquiring, saving and hoarding. So if you're interested or have somebody that you think would benefit from it, feel free to take a look at it. And finally, if you are interested in participating in research studies, I'm at Stanford again. People are interested in help, resources or just want connections or if they're interested in participating in research studies, you can email us anytime. All right. Thank you. I find the buried and the treasure part very compelling, both in terms of death and acquisition. I hope this question is not too bizarre, but on the other end of the spectrum, we have a stereotype of a lot of hoarding people very poor and causing public health problems and the like. We also live in a world where there's a lot of greed, and I think of aristocrats acquiring Versailles and that type of thing as well. But I know people now, and I've had patients, they buy a house every place they go. They are very competitive in this. They never even need to visit the house, or maybe once a year, once every three or four years. They also collect art. There are stacks of art in their homes, and of course collect money. And then there's the dictators of the world that, in spite of the fact of coming from a, quote, progressive background, once they get into power, they steal everything and collect everything. They're going to die anyhow, but it doesn't seem to bother them. So my question is, is there much research on the other end of the economic spectrum? That is, people that are very successful, even academics that have 7,000 books in their house. But I'm thinking more of people of wealth, and it seems to be a little new in the sense that, at least in American culture, I mean, 50 years ago, how many people in the United States had 14 houses? And now it's common. You go visit places in nature, Wyoming, Yosemite, and you look at the mansions on the rivers. I've asked, how many, do you know these people? Do they ever come? No, they have people to take care of the place, but they come every few years, maybe, Christmas for their family or whatever. So I'm just wondering if, on the other end of the economic spectrum, if there's any look in terms of this highly competitive acquisitional nature, is that a solution to death? What's it about, and is there any way to help these folks? Yeah, I'm happy to start, and maybe, or, Brandon, do you want to? Yeah, I'm not sure this is working. You want to come up here? Yeah, me, ma'am. Come up here. Let me just close this. So in the studies we've done, it's clear that the folks who participate in the study tend to have lower socioeconomic status, but not all of them. And we do see, in all of our studies, we see an assortment of income levels. And I've seen lots of people with quite a bit of money who have hoarding problems. And the central feature of the disorder is a cluttered living space. Because in a sense, it doesn't matter. From the standpoint of a disorder, it doesn't matter how much stuff anybody has. What really matters is their ability to control that stuff and be able to function around the stuff in their life. If they can function around the stuff in their life, is it a disorder? There are lots of questions about, you know, greed and so forth that are, you know, important philosophically, I think. But from the standpoint of the disorder, it really comes down to the extent to which this is disabling. And for people, and if you look in the book Stuff, there are several folks in there who had lots of money, who were pretty dysfunctional because of the inability to manage their living spaces with all that stuff. Okay, next question. Thank you so much. I've read about voles, those little creatures, and B6 deficiency being the item that makes the difference between them hoarding and them living fuller lives. And I've also observed in a food program called Gray Sheeters Anonymous, a 12-step program for food, that as soon as people put down grains and sugar, that they immediately start to declutter, immediately. The first thing that is done is, I need to clean house, I need to get rid of all this stuff that I have acquired. So has anyone looked at this? I have another friend who has gout, and as soon as he lowered his intake of things that were related to his gout, food-wise, he started to declutter. So have you looked at this? Yeah, there's nothing I know of in the literature that speaks to that. I don't know, Carolyn, have you seen anything? No, but Randy and I are always looking for new research ideas. And again, I think that's one of the things I admire about Randy, which is like, why assume, right? So why not study it and see if there's something helpful, and if there's enough anecdotal evidence, it's good to think about it and see if there's the evidence behind it, right? I have a case study person, I'll give you the name, went from being over 400 pounds down to 187, and is now decluttering an apartment that was filled to seven feet tall with clutter. So I'll share that. Thank you. I have a question. It's sort of related to the previous question. Do you ever see a spontaneous remission of hoarding disorder, either for no explicable reason or because somebody, say, falls down those stairs that you showed the picture of and they end up in a subacute rehab for four months and then the house gets cleaned out and then they sort of see the light and the disorder goes away? Yeah, good question. Do we ever see spontaneous remission? I've seen a couple of cases where focusing on understanding this, so what we do in the conceptualization of a case with our clients, we walk through this model with them and detail, we have them detail how they fit into this model. I've seen a couple of occasions where people said, aha, that's me, and all of a sudden some sort of light clicks and they begin to let things go. And it seems to be sometimes a decision point, and sometimes that decision point is when we ask them a question like, how long do you think you're going to live? And what's going to happen to this stuff? And that gets them thinking. So I think that we sometimes see that phenomena, but it happens because of some kind of realization, some kind of spark that goes off where they realize that this stuff is not so important to me. Yeah. Next question. Hi, thank you. It was a really wonderful presentation and I really thank you. I have a few questions and comments that have to do with the pathophysiology also, and a little bit related to what we heard before. One thing that I didn't see here, and I wonder how much you see that, is people with severe hoarding behavior and poor sanitation, especially in the poor insight stuff, on the schizophrenia spectrum, autism spectrum, is this something you see? In our mind, most of people that live like that are on that spectrum, not so much the anxiety spectrum. And I have a follow-up on that, so I want to answer that. Yeah. So the question had to do with, do we see this on the autism spectrum? And certainly on the autism spectrum, we see this kind of attachment to, sort of excessive attachment to objects, but the difference seems to be in the specificity of it. So in autism spectrum disorder, usually it's more specific to a certain type of item or a certain individual item. And in hoarding, it seems broadcast, it's everything. And there seems to be no discrimination for the type of item, it's everything that gets collected. So the nature of the collection seems to be a little bit different. And the nature of the saving behavior is a little bit different. And schizophrenia, these people, you didn't see them schizophrenics? I'm sorry, I couldn't hear you. Schizophrenia? On schizophrenia, yeah. When we see hoarding and schizophrenia, often it's associated with a disorganization. And the difficulty in letting go, it's not so clear if it's because of an attachment to the object or because it's part of this disorganization and this feeling of losing things sort of complicates their disorientation and makes them feel less in control somehow. So no one's really explored this very much. So it's certainly an area that's ripe for more research to understand how hoarding and schizophrenia might differ from hoarding disorder. Especially in people with poor insight, poor judgment, homelessness, or very severe consequences of their condition. Yes, absolutely. This poor insight issue, yeah, it certainly comes back to that. And again, this complication with insight, understanding when it's poor insight, when it's defensiveness, is difficult. Because I've seen cases where the person seems to have absolutely no insight. But once I start talking to them, it's different the way I ask the question. If I'm a health department official and I'm asking questions, they're likely to be defensive. If I come in and say, I'm just interested in what you're experiencing, they're less defensive. And so you get a little more insight from them, even though in a different context it looks like they have no insight. So from the part of physiology part, I was wondering if you guys looked into an inflammation actually model. Because you described that there are a lot of medical conditions and comorbidities that are related to that. And we know that, for example, the glutamergic system is associated with a lot of impulse control disorders. And I wonder if there is something to look at there in terms of the part of physiology of the condition. Right. Yeah. Yeah. The question was, how does this overlap with impulse control disorders? It might be a better fit for that part of the diagnostic manual than the OCD section, the impulse control section. Certainly the acquiring behavior is very impulsive. And so there's this question about whether it is compulsive buying or excessive buying disorder. I know the folks in ICD are looking into whether there should be a compulsive buying disorder. And the question is, how much they overlap. I mean, I don't see much difference between people with a compulsive buying disorder and people with hoarding who buy excessively. They seem to show the same kind of phenomena. So the overlap in those things, I think, is important to explore. And that's, I think, related to the other person who asked the same about related to nutrition and possibly sensitivity to foods or other things that can cause inflammation. Yes. Yes. OK. It's 9.30. So let's take one more question. I think the gentleman's been waiting back there. A couple of questions together. I started my career doing OCD research at UCLA many years ago, but subsequently have been doing mineralization-based treatment for borderlines and that kind of stuff. But the question comes from one of the things that I'm thinking about in mineralization-based work recently is the concept from Panksepp, his notion of seeking being an emotion. And the notion that seeking is basically a form of foraging. So most of his work originally came from animal models, but there's lots of animal research that one can modulate foraging behaviors in animals for a whole variety of different reasons. So I'm curious about your thoughts about that some. But one of the ways we think about that concept in mineralization is that seeking is a discrete emotion that often switches off another emotion. And back to my research in OCD many years ago, these people, there are a lot of hoarders in that group. We saw really sick folks. They're all hypervigilant and have a very difficult time being with a sustained emotional state. So they're always bouncing around. So I'm just curious about your thoughts about that. The other was about the autism overlap because Simon Baron Cohen's work that describes these folks, they're preoccupied with patterns and categorizing, and they hoard in their mind and are excessively perseverant about certain things. So Isaac Newton's often considered a model. So he'd wake up and think about an idea and be so captured by it, he'd stay awake for 30 hours. But it wasn't just physics. He got into notions of the Bible, communicating religious ideas, and stuck with it for 30 years kind of thing. So I'm just curious about your thoughts about how it relates to foraging and those neurobiologic circuits, I guess. Yeah. Yeah. Interesting. The foraging question is quite interesting because it does... The thing about the acquiring behavior that would be the foraging is in hoarding, it's not like... It's not planful. It's not something they obsess about. It's not something they think about. It's just that when they see something, the trigger occurs. So the seeking behavior, it's not seeking out something, it's the experience of once I see it, then I have to have it. So it's not like someone who is planful about this and spends a lot of time thinking about this. And even after it's acquired, there's very little time spent thinking about this. So it doesn't become a repetitive kind of intrusive belief that they have to... Until they look at the thing and think about getting rid of it, that's when the phenomena sort of comes back. But it sounds like the first part of it is analogous. So the seeking is a dopamine mediated positive experience pathway kind of notion. It's pleasurable. So it could be seeking on Amazon or whatever. It sounds like the first part of it from your description is pleasurable. Yeah. Exactly. Exactly. And many times... Some are exploratory. Yeah. And this is one of the hardest parts of treatment is because people with this problem will say, this is my only joy, is acquiring things. And I feel such a high in it. I have a lot of these segments from Marnie where she's out shopping and she's filming herself shopping and you can see it. You can see that sort of manicky behavior and the positive sort of over the top kinds of expression she has at seeing things she wants. And the times when she's thinking about it, she's saying, I just don't want to do this anymore because I'm getting depressed and I want to go out and shop and experience joy. And so it comes back, speaks to this issue of motivation among these folks and how difficult it is to keep them motivated to do this hard work because it is really hard and it's very emotional. You can see Marnie's emotions as she went through these things. It just kept going and going. It took a long, long time for this to become easy for her. Could I ask another question that relates it? She seemed relatable to whoever the treater was. Yes. How many of the folks that you see are able to connect keenly interpersonally? Yeah, how many of these folks are able to attach interpersonally? I think quite a few, even though they're often guarded at the beginning. One of the things that we've been really fascinated about with response to the Buried and Treasures workshops is how attached these people get to each other. They form bonds that go well beyond the end of the group. Many times they continue meeting even when this study was over. So this interpersonal stuff, I think it's not the case that they don't want it. It's that they feel a little bit threatened by everyone because if people knew the way they live, they'd be rejected. They'd be ostracized somehow. I think having someone who understands the nature of this for them is an important piece that leads them to feel closer to and more relatable for other people. Thank you. Well, thank you all very much.
Video Summary
In this session led by Randy Frost from Smith College and Karen Rodriguez from Stanford, the focus is on diagnosing, understanding, and treating hoarding disorder. Hoarding disorder was officially recognized as a mental disorder in 2013 and involves persistent difficulty discarding possessions due to perceived need and distress when discarding. Symptoms lead to clutter that compromises living spaces and can cause distress or impairment socially and occupationally. The disorder's criteria include whether the behavior is due to another medical condition or another DSM-5 disorder, insight level, and excessive acquisition.<br /><br />The presentation discusses the prevalence of hoarding disorder, estimated globally at 2.5%, and its comorbidity with disorders like major depression. The disorder often appears in early adulthood and worsens over time. Environmental hazards associated with hoarding include sanitation issues, mobility hazards, and fire risks, contributing to social and community costs.<br /><br />The presenters described the cognitive model of hoarding focusing on vulnerabilities like health problems and perfectionism, information processing deficits such as attention problems, and attachment to possessions motivated by emotions ranging from fear of loss to aesthetic pleasure. The attachment beliefs reinforce hoarding behavior by associating items with safety and comfort or opportunities for future identities.<br /><br />Therapeutic interventions discussed include cognitive behavioral therapy (CBT) specifically for hoarding and community strategies like the Buried in Treasures workshop. Current medications have shown some effectiveness, though no medication is FDA-approved for hoarding disorder yet. Challenges include finding more effective treatments and improving client engagement.<br /><br />Overall, this session outlines the complexity of hoarding disorder, covering its diagnostic criteria, contributing factors, research, and therapeutic interventions, emphasizing the need for personalized and varied strategies in managing the disorder.
Keywords
Hoarding Disorder
Randy Frost
Karen Rodriguez
DSM-5
Cognitive Behavioral Therapy
Comorbidity
Environmental Hazards
Cognitive Model
Attachment Beliefs
Therapeutic Interventions
Buried in Treasures
Client Engagement
Mental Disorder
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