The future of hoarding disorder
Psychiatrist Carolyn Rodriguez studies hoarding disorder and says that all of us have attachments to our possessions.
But for many, these attachments can disrupt daily life and even pose health risks. For those with loved ones who struggle with hoarding disorder, she says treatments exist, including cognitive behavioral therapy (CBT). Lately, she’s been studying how virtual reality can augment CBT through virtual discarding practice and also ways brain stimulation may improve symptoms. But, Rodriguez says, never underestimate the value of empathy for those in need of help, as she tells host Russ Altman on this episode of Stanford Engineering’s The Future of Everything podcast.
Transcript
[00:00:00] Russ Altman: This is Stanford Engineering's The Future of Everything, and I'm your host, Russ Altman. I thought it would be good to revisit the original intent of this show. In 2017, when we started, we wanted to create a forum to dive into and discuss the motivations and the research that my colleagues do across the campus in science, technology, engineering, medicine, and other topics. Stanford University and all universities, for the most part, have a long history of doing important work that impacts the world, and it's a joy to share with you how this work is motivated by humans who are working hard to create a better future for everybody. In that spirit, I hope you will walk away from every episode with a deeper understanding of the work that's in progress here, and that you'll share it with your friends, family, neighbors, coworkers as well.
[00:00:48] Carolyn Rodriguez: We're trying to understand as a field, both simultaneously how to help people with the disorder, with treatments like therapy, cognitive behavioral therapy, and at the same time trying to understand, you know, what do we, what do we know about the brain? Are there regions of the brain that are important for attachment, for letting go.
[00:01:11] Russ Altman: This is Stanford Engineering's The Future of Everything, and I'm your host, Russ Altman. If you're enjoying The Future of Everything, please remember to follow it in whatever app you're listening to right now. That'll guarantee that you never miss an episode, and you're always clued in to The Future of Everything. Today, Carolyn Rodriguez from Stanford University will tell us that normal attachment to our possessions is perfectly reasonable, but for some people it becomes a problem. Things clutter up. They are unable to clean up, they're unable to move things out, and they move to a situation which is impairing their function in both their personal life and in their professional life. It's the future of hoarding disorder. Before we get started, remember to please follow The Future of Everything podcast in whatever app you're listening to right now.
[00:02:05] So I think it's fair to say we all have some stuff that we love. There's stuff that we like. And the reasons for liking our stuff are many. They could be useful or it's a memory of a loved one or an experience, or it's part of our self-image. There's many reasons, but sometimes our love for possessions can get out of control. It can lead to clutter. It can lead to piles of stuff that make rooms literally unusable, and it can advance to the point where our personal and professional lives are put in jeopardy. That's called hoarding disorder. Well, Carolyn Rodriguez is a professor of psychiatry and behavioral science at Stanford University and an expert at the diagnosis and treatment of hoarding disorder.
[00:02:47] Carolyn, what led you to make the decision to work on hoarding disorder as a major focus of your clinical and research professional life?
[00:02:56] Carolyn Rodriguez: Russ, great question and I'm such a fan of you and, and the podcast, and thank you for having me on. So I got really interested in hoarding disorder, very curious about this question. We all have clutter. And what makes us hang on to items, what makes it difficult to let go? And I got really fascinated by the idea that some people can let go of items pretty easily, but then other people have a real struggle with it. Sometimes to the point where they are facing eviction. So within that spectrum, how do we understand more about the brain mechanisms for what draws us to our stuff.
[00:03:44] Russ Altman: So that is great. And I think many of us, when as soon as we hear about this disorder, and even having you describe it a little bit now, we start doing a personal inventory of like, do I have a healthy relationship with my stuff? So I guess the first thing is, as a psychiatrist and as a researcher, how do you recognize this and where you draw the line between somebody who's a collector, or somebody who is very busy and has a bunch of piles of stuff around their house, and, and when do you decide that this is something that needs treatment, attention, counseling, and all the treatments that we will get to in a little while.
[00:04:19] Carolyn Rodriguez: So collecting is normal, healthy, so many people do it. Um, in, in fact, in a study of British adults, 30% of individuals have some sort of collection. And we wanna be careful, um, to recognize when those things are, are wonderful and good for us, and when it can cross into a problem. And that's the line, um, that you're asking me about in terms of hoarding disorder. So in order to meet criteria for going over that line, you need to um, uh, be able to have a couple, couple key things. So one is difficulty letting go of items. Having a real, uh, strong need to save the items.
[00:05:05] You need to then, as a result, have a large volume of clutter in your home, such that you can't use the rooms for their intended purposes. For example, you can't cook in the kitchen, can't sleep in the bed. And all of those symptoms together then make it difficult to, um, do social things, do work, cause distress that impairs your functioning and life. And it can't be due to, um, medical, uh, reason or, or a neurological reason. For example, somebody has a stroke, and they can't, um, move around or part with their possessions, and so they accumulate in the home.
[00:05:47] Russ Altman: So it's a real, uh, and this, and I've seen this for other diagnoses in psychiatry, is it, it has to get to the point where there's functional, uh, either disability or, or real kind of hindrance of your ability to function in either your professional or your personal life. Uh, and that's when it gets to the level where you as a, as a professional say, okay, this is somebody who I, I need to work with, I need to help. Um, uh, what is the, uh, is this, uh, relatively common or relatively rare? Unfortunately, we see news stories sometimes and, but very tragic, sad stories about people in these kinds of situations. Uh, and, and I, I've, I have, I'm afraid that people don't have a sense for, is this a unicorn or is this is more, um, more common than people might realize?
[00:06:30] Carolyn Rodriguez: Hoarding disorder is common. Um, it's around 2.5% of, uh, the population with the best estimates being a meta-analysis. So taking 11 different studies and, and averaging across, uh, those, um, uh, um, studies and spanning from multiple countries as well.
[00:06:51] Russ Altman: Ah, that's, so, that's very interesting. So this is not a peculiar American thing or even Western, um, disorder?
[00:06:58] Carolyn Rodriguez: Exactly. Yeah. Those papers span across multiple countries. And so it is, it does tend to, it, it does suggest that this is a, a universal, um, uh, disorder.
[00:07:11] Russ Altman: So you have a PhD in neuroscience and putting on that hat for a moment, do we understand the brain pathways, the parts of the brain, that are involved in this and um, and how is the research going in terms of understanding the kind of molecular, cellular, neuroscience basis of this disorder?
[00:07:29] Carolyn Rodriguez: Yeah, well, we're, we're just at the tip of the iceberg. I think, um, you know, it, it wasn't until the 1990s when it first became, um, an actual diagnostic entity in the manual that we use, the DSM in 2013. Um, so, uh, but I, but I think that, that is the future. So we're trying to understand as a field, both simultaneously how to help people with the disorder, with treatments like therapy, cognitive behavioral therapy, and at the same time trying to understand, um, you know, what do we, what do we know about the brain? Are there regions of the brain, um, that are important for attachment, for letting go?
[00:08:08] Um, there, uh, is a study that, uh, showed that, um, individuals who are in a scanner when they have, um, uh, functional, uh, neuroimaging, when they, uh, discard, um, items that belong to an investigator, um, uh, region of the brain, um, uh, um, has activity that's basically the opposite when they, um, when they discard items that belong to themselves. So this is biphasic response where when they're discarding something that owns to them, this area of the brain lights up and the activity goes down when it's, um, not theirs.
[00:08:47] Russ Altman: So, so they are, the brain is acutely aware of the, of the idea of possession, uh, and kind of ownership. And also the idea of something being kind of tossed. And, and there's a big difference in the response. Is, so forgive me, um, uh, as you know, I'm not a psychiatrist, are there dopamine related reward pathways? We hear a lot about this. We've had guests talk about addiction and other things. Is this, is, is an element of this, uh, disorder addiction or is that really a different thing?
[00:09:15] Carolyn Rodriguez: Yeah. Again, it's the tip of the iceberg, but I, I think you, um, highlight something that is very unique about the disorders or how does, how does volume accumulate, right? So it can be difficulty discarding, but also there's a, some, some individuals, majority of individuals that have excessive acquisition. So this is when individuals are either buying a lot of things or getting free things. Um, and that is, those kind of excessive acquisition is part of the sort of dopamine hit part of it. And so it can be conceptualized or thought about in that manner, although again, we're, we're just trying to understand, um, those behaviors.
[00:09:55] Russ Altman: Um, so we're definitely gonna get to therapies 'cause I know you've, you've written a lot and you've had some really exciting, but before we go to that, I wanted to, uh, try to think about the risk factors and the natural history of this disease. So maybe we'll do risk factors first. Is, have we studied enough, and I, I know that you've written about some really interesting ones, um, the things that might be related to the emergence of this disease?
[00:10:18] Carolyn Rodriguez: Absolutely. So, couple things, um, in terms of like vulnerabilities that we think about with hoarding disorder. So those include poor, poor health, disability, um, kind of innate, um, personality characteristics like, um, perfectionism. Uh, there's also a component of genetic vulnerability. So hoarding disorder does tend to, to run in families. Um, but, um, a high proportion of the variance is, uh, environmental as well. Um, and, uh, we see that individuals can have difficulty with emotion regulation, so that sort of sets the stage. Um, but then they're components in terms of, um, we found that individuals with hoarding disorder have difficulty with information processing. Um, so those are things like attention, categorization, and decision making, which you can imagine is very important. When you have something in front of you and you're trying to decide, do I keep it, do I let it go, do I recycle it, do I donate it?
[00:11:14] Russ Altman: Are there any gender or sex effects in the, in who, which populations are most, uh, affected by this disorder?
[00:11:21] Carolyn Rodriguez: Yeah. It's, it's thought to be equal, but what we see in our clinical research studies is that a higher, um, percentage of individuals who are seeking treatment are women.
[00:11:31] Russ Altman: Ah, interesting. So, uh, and that, and you've written about this and there's a very fancy word that I cannot pronounce for the, uh, degree to which patients have insight about even having this disorder. Can, can you tell us about that?
[00:11:43] Carolyn Rodriguez: Exactly. So, um, this is a, a common challenge for family and loved ones. We'll get calls all the time to say, um, you know, my loved one can't come out of the, can't, um, have people over, is stuck in the house. Um, and, but they don't recognize it. So that's what we mean by not having insight. And, um, the, the, the word is anosognosia, which is a more technical term. But, but, but the functionally it means that, um, when a loved one is trying to speak to them about how do we make your home more livable, um, it's a real challenge. And it can be a source of tension for families. And so if we can find ways to improve insight, um, and we're studying, studying, uh, uh, that, um, currently in the lab, then potentially we could help more people.
[00:12:35] Russ Altman: So even, even the decision to visit a clinician and kind of seek help is non-trivial for the, for both the patient and the family. And so by the time they even reach a clinician, they've had to do a fair amount of work in understanding that, well, I don't really think this is a problem, but my family wants me to do it and I, you know, I'll fine, I'll do it. Uh, and then, and that's, I'm guessing that's where you, your initial starting point is very, very often clinically.
[00:13:02] Carolyn Rodriguez: Yeah, absolutely. And I think, you know, it all, it all starts with trying to find and speak to the individual, um, recognizing the beauty of, of their items, of the, the, the attachment, the strong attachment that they have. Um, having an individual talk about some treasured items so that you can get a sense of what the attachment is, and then trying to get a sense together for why? Why, what are the pros and cons? Um, what, what is gained by letting go of items. Um, so, you know, uh, just the other day had, uh, an individual who, um, is a grandmother. She'd love to have her grandchildren over and she can't. So that's her why. Her why is to have her grandkids over.
[00:13:50] Russ Altman: So, okay. So that's, yeah, and that's, that really hits home as a, as kind of a personal understanding of, of what the toll can be. Um, I did, before we go into treatment, and I promise we're getting there 'cause it's exciting, but, but I wanted to ask about the natural history. When does this usually come on, what is the, when is the onset of this disorder? I, I'm guessing that in retrospect people see signs well before, um, it becomes very obvious. So can you tell us about, um, is this a disease of the young, of the middle age, of the old? It doesn't discriminate?
[00:14:20] Carolyn Rodriguez: Well, we think the symptoms come on early. Um, one of the challenges in, in detection though, is that, um, parents can kind of help moderate, influence the environment. Try and clean up things, um, try and organize. Um, but then, um, we, we know that the, that, um, that the onset is pretty early. So on average 17 years old individuals will start having, um, uh, hoarding in, um, symptoms. And then, um, we know that, um, in, uh, aging populations, it is, it is definitely a challenge with older adults, three times as likely as young adults to have hoarding symptoms and increasing with each decade of life.
[00:15:05] Russ Altman: Okay. So it really does affect the whole spectrum of, of humanity. Um, and you mentioned that it is an international phenomenon, so we, we can't blame it on one culture or another. Is it also, do we have any insight, I guess, I guess the question is, when you read old books and when you look at old medical textbooks, have we had this, um, all along or is it an emergent phenomenon of the 20th century?
[00:15:29] Carolyn Rodriguez: Yeah. Um, well, accounts of, of hoarding disorder actually go back a long way in the literature. So it was back as far back as, uh, 319 BCE in the writings of Aristotle student, uh, Theus, um, and he attempted to catalog all of human behavior. And he described, um, two individuals, pernicious man and avaricious man. And in his writings, he describes that they collected and saved materials excessively. So as far as we know, that's the furthest back it goes. Um, but then in the, in literature, right, in the 1300's, um, Dantes Inferno, there's this famous kind of, um, wasters and, and hoarders was his, his words. Um, they're heaving these heavy stones at each other. And, um, you know, in in the writings it says that these individuals have spent a lifetime, uh, pursuing wealth and failed to use it in moderation and became blind to the real value of the possessions. So then they became stones that then, in their in perpetuity, they hurl at each other.
[00:16:34] Russ Altman: Wow. Okay. This is The Future of Everything with Russ Altman. We'll have more with Carolyn Rodriguez next. Welcome back to The Future of Everything. I'm Russ Altman and I'm speaking with Carolyn Rodriguez. In the last segment, we learned about the basics of hoarding disorder. What are the predisposing conditions? How does it develop? What are the symptoms? And how do these folks suffer in their personal and professional lives? In this segment, we're gonna ask why do people get attached to their stuff and what are the treatments that are available to folks who are suffering from hoarding disorder?
[00:17:16] I wanted to start this section with, um, why do people get attached to things? What, what are the reasons why, um, people tell you they're so attached to these objects, which are clearly, in some cases, causing functional impediments in their life?
[00:17:30] Carolyn Rodriguez: Well, the reason people are attached to items is pretty universal across everyone, but individuals with, um, hoarding disorder are attached even more for those reasons. So one example is, um, the, um, usefulness of, of an item, right? We hang on to something because we could, we could use it later. We don't wanna waste something. But individuals with hoarding disorder, um, they'll, for example, hang, hang on to a toilet paper roll, many toilet paper rolls, because they could come in handy for a child's art project. Um, and yet with all the creativity and the ideas that they can come up with for an object, it actually doesn't materialize. So they don't take the toilet paper roll to the elementary school that's down the block.
[00:18:20] It stays with them. So that's one of the challenges. Another reason is, uh, for the beauty or aesthetics. Something very beautiful, you know, we enjoy having something beautiful in our home. And individuals with hoarding disorder have, um, an incredible appreciation for items that would surprise you, in the sense that I've had somebody just marvel at a bottle cap, which for, you know, could be something that could, you could very easily see in the trash. But they have never quite seen this color of the bottle cap. They like the way the light shines off of it. Um, they, it, it has, you know, some particular denting that is inspiring to them.
[00:19:02] Russ Altman: So they really become connoisseurs of the stuff.
[00:19:05] Carolyn Rodriguez: Yes, absolutely. Um, another is, um, the, uh, the sense that of, um, identity or opportunity is imbued in something. So for example, uh, somebody might collect a lot of cookbooks because they envision themselves as a chef. Um, and if they were to get rid of the cookbooks, then they couldn't be a chef. Or, um, an item, uh, you know, uh, there was that beautiful sunhat that reminds them of a day that they spent with their relatives on the beach. Um, but if they let go of that object, then they feel that they'll lose that memory. That they need to actually visually see that object to retain and hold onto that memory.
[00:19:52] Russ Altman: So all this, it strikes me that all of these examples are totally reasonable, kind of in moderation, right? And when we all have such objects, just like what you described. And yet, for, for some folks, this becomes something that's a, a functional, uh, problem.
[00:20:07] Carolyn Rodriguez: Absolutely. It's, it's, um, stimulating in many, many ways to have the object in front of them. Um, the, the olfactory cues, the smells, the smells like a loved one. They're just a lot of sensory and emotional phenomenon with, with each object. Which, you know, we, you know, if you, if you have a ticket stub or, um, you know, a, a, a card, right? Like there's no reason that the physical property of that one would be attached to it. And yet we as humans imbue these objects with special meaning and sentimentality. Why is that?
[00:20:45] Russ Altman: Yep, this is great. Okay, so now from that, it makes it even harder to ask you about treatment, but we have to get there. So I guess the first question everybody wants to know is, is there a pill for this?
[00:20:55] Carolyn Rodriguez: Yes. Unfortunately, there is no FDA approved medication for hoarding disorder. There's a few open label, um, studies, which means, um, that everybody gets, um, the particular drug and you don't have randomization and control. That's what we, what we like to see in good evidence-based science. Um, but there, there's a few drug classes that have been tested in that way, including serotonin reuptake inhibitors, um, norepinephrine stimulants. But, uh, these are very small studies, and they need to be replicated.
[00:21:30] Russ Altman: And so what are the tools that you have, uh, or that a clinician has when they're, um, trying to help somebody with hoarding disorder?
[00:21:36] Carolyn Rodriguez: Yeah, so the most evidence-based and produced, um, uh, intervention that we have currently is cognitive behavioral therapy. That's specific for hoarding disorder. And so in this, um, treatment, there's very careful case formulation to try and understand the diagnosis, diagnosis, to understand the scope of the problem. And, um, in hand, in hand with, um, motivational enhancement. Again, trying to understand the why, what is the motivation for, for the individual. And skills training with practice. Very practical practice in terms of, um, for example, non-acquiring shopping trips, going to a flea market and practicing not bringing items home. Really tolerating the distress of that. Um, having the individual understand why they're attached to items and then trying to shape and change those acquiring patterns.
[00:22:30] Russ Altman: Now, is the goal or the outcome of CBT, is it curative or should we think of this as a chronic disease that requires kind of constant vigilance?
[00:22:38] Carolyn Rodriguez: Yes, we more conceptualize it as a chronic disease with these types of interventions reducing hoardings symptoms by 30%. Um, and at the same time I've seen some beautiful, hopeful stories of individuals that get treatment, whether it's individual or group, and they, um, have a structure in their life to help them make decisions, manage and be able to get this under control. So I've seen some lovely, um, success stories.
[00:23:08] Russ Altman: That, that really is great. And I, and I know you've done some exciting recent work with virtual reality, so can you tell me about that?
[00:23:15] Carolyn Rodriguez: Yeah, absolutely. So, um, as you highlighted, uh, you know, we wanna, we wanna do better as clinicians to help individuals tackle this. Um, but sometimes real life, um, uncluttering in the home is difficult. Um, either because, um, the, the distance is too far for a clinician to go. Um, the clutter may be too dangerous, over shoulder height, and there's a risk that, that, uh, somebody could be injured. Um, but yet practicing letting go of items is the core and the foundation of, of what individuals need to do. So we wanted to create a virtual reality, um, environment that was safe to do this. And so in this, um, pilot small research study, we, um, tried to just see, is it feasible to have individuals take photos of 30 of their objects to take pictures of their home, recreate, um, that reality.
[00:24:07] And then, uh, be able to give them practice, um, is this something I wanna keep? Is this something that I want to, uh, recycle? Is this something that I wanna discard? When they make the decision, they put it in a bin in virtual reality. And if it's, if they've chosen to discard, you hear the sound of the garbage truck come and take away, uh, the item. And one of the things that's helpful is creating a little bit of distance and from actually having the actual physical object. The texture isn't there, the smell that can be very overwhelming and powerful and can give people a little bit of distance. So it's a little stepping stone, a little runway to help people practice this in a not so emotionally overwhelming way.
[00:24:50] Russ Altman: So, so I just wanna make sure I understand. You've taken pictures of their, of the, of their actual home or workplace or wherever the, some, some, some, uh, clutter is and then they're practicing on, on virtual versions of their real items.
[00:25:03] Carolyn Rodriguez: Exactly.
[00:25:04] Russ Altman: And then the question is then does that give them enough courage and, and other feelings so that they can go into the real environment and start that process?
[00:25:13] Carolyn Rodriguez: Exactly. And we, we found that, um, you know, individuals told us that they did. That some of, of the, of the practice actually translated into real life discarding, which is what we wanna see. Um, and, uh, people, people enjoyed it. It was a, it was a, a good experience. So that says that this is a direction that we wanna invest, uh, more in. Also, one thing that you can't do in real life, if you can practice, uh, parting with something over and over again. Which you can't do in, in real life.
[00:25:41] Russ Altman: Yeah. And, and also it might, I'm just guessing that it might be that some things are much harder and after trying to practice you say, you know what? This object is not one of the first ones I should be getting rid of. I'm gonna try to pick something else 'cause this one is really hard for me.
[00:25:56] Carolyn Rodriguez: Absolutely. You got it.
[00:25:58] Russ Altman: Um, what I, I, I've also seen in your work some mention of neuromodulation. So we've heard about, um, modulation for Parkinson's disease, uh, symptoms and for other things where they literally put in, um, electrodes into the brain. And I don't know if that's what's happening here, but what are the neuromodulation experiments?
[00:26:14] Carolyn Rodriguez: Yeah. For, so for neuromodulation, um, is a non-invasive, um, uh, magnetic, uh, uh, uh, field and electrical stimulation, a very specific part of the brain. Which we think, um, the right frontal pole is what we're targeting. As, um, uh, so right here.
[00:26:33] Russ Altman: Right above your right eye.
[00:26:35] Carolyn Rodriguez: Yeah. And trying to um, to, uh, to basically change some of the neural circuits that we think that may be involved in, um, the excessive acquisition that individuals feel the strong need to bring items in. Can we, can we tamp that down, uh, with, with it? Um, and we're, we're just about to launch, uh, that study this summer. So we're looking forward.
[00:27:00] Russ Altman: And I can imagine that you, in the future, it might be multimodal where they're doing the VR, but to help them get started, maybe the neuromodulation helps, but then you can wean it off, or all kinds of interesting combinations. Well, to finish up in our last minute, I wanted to ask if you have some practical advice to people who are afraid that they themselves might be suffering from this disorder or friends and loved ones who are seeing something that is getting them worried, um, kind of tips for how, how to approach this very delicate issue?
[00:27:27] Carolyn Rodriguez: Absolutely. Um, thank you Russ. This is hard, right? Um, it can be overwhelming for the individual, for family and loved ones. So the first step really is to get information and to get help. To not go at it alone. The, uh, there are a number of wonderful resources. The International OCD Foundation has specifically a hoarding disorder page that has resources and information. There are many books out there that can be helpful just in terms of getting a handle of what's going on. For friends and loved ones, you wanna express empathy and praise progress. You wanna avoid arguments when possible and negative comments. And to really roll with the resistance. Somebody might not be ready at that particular time, so you wanna basically just kind of roll with it. The other very, very important piece is to take care of your own wellbeing, right? Put the oxygen mask on yourself. Get support for yourself, because it is a long road and it can be frustrating.
[00:28:27] Russ Altman: Even as a caregiver.
[00:28:28] Carolyn Rodriguez: Caregiver.
[00:28:29] Russ Altman: Or, or a friend or concerned or, so it's not just the patient, but even the, the, the surrounding support group.
[00:28:36] Carolyn Rodriguez: Absolutely. Absolutely. And that there's hope. I've seen success. You know, um, don't go at it alone. And, um, and I think there, we're in an exciting time.
[00:28:47] Russ Altman: Thanks to Carolyn Rodriguez. That was the future of hoarding disorder. Thank you for listening to The Future of Everything podcast. You know we have almost 300 back catalog episodes on a wide variety of topics available for you to listen right now, and you can be clued in on the future of pretty much everything. If you're enjoying the show, please remember to tell friends, colleagues, family about it. Word of mouth is the best way to spread news of the podcast and grow the show. You can connect with me on many social media @RBAltman or @RussBAltman on Mastodon, Bluesky, Threads. You can also follow the School of Engineering at Stanford, a@StanfordSchoolOfEngineering, or @StanfordENG.
