The future of hoarding disorder
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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. 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 know about the brain? Are there regions of the brain that are important for attachment, for letting go?

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.

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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. Carolyn, what led you to make the decision to work on hoarding disorder as a major focus of your clinical and research professional life?

Russ, great question. And I'm such a fan of you 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?

So that is great. And I think many of us, 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 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?

So collecting is normal, healthy. So many people do it. In fact, in a study of British adults, 30% of individuals have some sort of collection. And we want to be careful to recognize when those things are wonderful and good for us and when it can cross into a problem. And that's the line 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 be able to have a couple key things. So one is difficulty letting go of items, having a real strong need to save the items,

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 do social things, do work, cause distress that impairs your functioning and life.

And it can't be due to medical reason or neurological reason. For example, somebody has a stroke and they can't move around or part with their possessions. And so they accumulate in the home.

So it's a real, and I've seen this for other diagnoses in psychiatry, is that it has to get to the point where there's functional either disability or real kind of hindrance of your ability to function in either your professional or your personal life. And that's when it gets to the level where you as a professional say, okay, this is somebody who I need to work with, I need to help.

What is the is this relatively common or relatively rare? Unfortunately, we see news stories sometimes and very tragic, sad stories about people in these kinds of situations. And I'm afraid that people don't have a sense for is this a unicorn or is this is more more common than people might realize?

Hoarding disorder is common. It's around 2.5% of the population with the best estimates being a meta-analysis. So taking 11 different studies and averaging across those studies and spanning from multiple countries as well.

So that's very interesting. So this is not a peculiar American thing or even Western disorder? Exactly. Yeah. Those papers span across multiple countries. And so it does suggest that this is a universal disorder. Yeah.

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 how is the research going in terms of understanding the kind of molecular, cellular, neuroscience basis of this disorder? Yeah. Well, we're just at the tip of the iceberg. I think it wasn't until the 1990s when it first became –

an actual diagnostic entity in the manual that we use, the DSM, in 2013. But I think 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 how

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? There is a study that showed that individuals who are in a scanner when they have functional neuroimaging,

When they discard items that belong to an investigator, a region of the brain has activity that's basically the opposite 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 not theirs.

So the brain is acutely aware of the idea of possession, kind of ownership, and also the idea of something being kind of tossed. And there's a big difference in the response. So forgive me, 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 an element of this disorder addiction or is that really a different thing? Yeah. Yeah.

Again, it's the tip of the iceberg, but I think you highlight something that is very unique about the disorders or how does volume accumulate, right? So it can be difficulty discarding, but also there's 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. And that is those...

Right.

So, we're definitely going to get to therapies because I know you've written a lot and you've had some really exciting. But before we go to that, I wanted to try to think about the risk factors and the natural history of this disease. So, maybe we'll do risk factors first. Have we studied enough? And I know that you've written about some really interesting ones. The things that might be related to the emergence of this disease. Okay.

Absolutely. So a couple of things in terms of like vulnerabilities that we think about with hoarding disorder. So those include poor health, disability, kind of innate personality characteristics like perfectionism. There's also a component of genetic vulnerability. So hoarding disorder does tend to run in families. But a high proportion of the variants is environmental as well.

And we see that individuals can have difficulty with emotion regulation. So that sort of sets the stage. But then there are components in terms of, we found that individuals with hoarding disorder have difficulty with information processing. 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?

Are there any gender or sex effects in which populations are most affected by this disorder? It's thought to be equal, but what we see in our clinical research studies is that a higher percentage of individuals who are seeking treatment are women. Interesting.

Interesting. So, and you've written about this, and there's a very fancy word that I cannot pronounce for the degree to which patients have insight about even having this disorder. Can you tell us about that? Exactly. So, this is a common challenge for family and loved ones. We'll get calls all the time to say, you know, my loved one can't come out of the, can't

have people over, is stuck in the house, but they don't recognize it. So that's what we mean by not having insight.

And the word is anosognosia, which is a very technical term. But functionally, it means that when a loved one is trying to speak to them about how do we make your home more livable, 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,

and we're studying that currently in the lab, then potentially we could help more people.

So even the decision to visit a clinician and kind of seek help is non-trivial 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, fine, I'll do it. And that's, I'm guessing that's where your initial starting point is very, very often clinically. Yeah.

Yeah, absolutely. And I think, you know, it all starts with trying to find and speak to the individual, recognizing the beauty of their items, the attachment, the strong attachment that they have.

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, um,

You know, just the other day I had an individual who 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.

So, okay. So that's, yeah. And that really hits home as kind of a personal understanding of what the toll can be. Before we go to treatment, and I promise we're getting there because it's exciting, but I want to ask about the natural history. When does this usually come on? When is the onset of this disorder? I'm guessing that in retrospect, people see signs well before it becomes very obvious. So can you tell us about, is this a disease of the young, of the middle-aged, of the old?

it doesn't discriminate. Yeah. 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 are starting having, um,

uh, hoarding, um, symptoms. And then, um, we know that, um, in, uh, aging populations is, 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.

Okay. So it really does affect the whole spectrum of humanity. And you mentioned that it is an international phenomenon, so we can't blame it on one culture or another. Is it also, do we have any insight? I guess the question is when you read old books and when you look at old medical textbooks, have we had this all along or is it an emergent phenomenon of the 20th century? Yeah. Well, accounts of

of hoarding disorder actually go back a long way in the literature. So it was back as far back as 319 BCE in the writings of Aristotle's student, Theophritus. And he attempted to catalog all of human behavior and,

And he described 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. But then in literature, right, in the 1300s, Dante's Inferno, there's this famous kind of...

wasters and hoarders was his words. They're heaving these heavy stones at each other. And, you know, in the writings, it says that these individuals have spent a lifetime 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. Wow. Okay. 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 going to 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?

I wanted to start this section with why do people get attached to things? What are the reasons why people tell you they are so attached to these objects, which are clearly in some cases causing functional impediments in their life? Well, the reason people are attached to items is pretty universal across everyone. But individuals with hoarding disorder are attached even more for those reasons. So one example is the...

the, um, usefulness of, of an item, right? We hang on to something because we could, we could use it later. We don't want to 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, um,

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. It stays with them. So that's one of the challenges.

Another reason is for the beauty or aesthetics, something very beautiful, you know, we enjoy having something beautiful in our home and individuals with hoarding disorder have 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 you could very easily see in the trash, but it's,

They have never quite seen this color of the bottle cap. They like the way the light shines off of it. It has, you know, some particular denting that is inspiring to them. So they really become connoisseurs of the stuff. Yes, absolutely. Yeah.

Another is the sense that of identity or opportunity is imbued in something. So, for example, somebody might collect a lot of cookbooks because they envision themselves as a chef.

And if they were to get rid of the cookbooks, then they couldn't be a chef or an item, you know, there was that beautiful sun hat that reminds them of a day that they spent with their relatives on the beach. 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 on to that memory. Right.

So it strikes me that all of these examples are totally reasonable, kind of in moderation, right? And we all have such objects, just like what you described. And yet, for some folks, this becomes something that's a functional problem.

Absolutely. It's stimulating in many, many ways to have the object in front of them. The olfactory cues, the smells, the smells like a loved one. There's just a lot of sensory and emotional phenomenon with each object, which, you know, we...

If you have a ticket stub or a card, 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? Yeah.

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? Yes. Unfortunately, there is no FDA approved medication for hoarding disorder.

There's a few open label studies, which means that everybody gets the particular drug and you don't have randomization and control. That's what we like to see in good evidence-based science. But there's a few drug classes that have been tested in that way, including serotonin reuptake inhibitors, norepinephrine stimulants. But these are very small studies and they need to be replicated. Okay.

And so what are the tools that you have or that a clinician has when they're trying to help somebody with hoarding disorder? Yeah. So the most evidence-based and reproduced intervention that we have currently is cognitive behavioral therapy that's specific for hoarding disorder.

And so in this treatment, there's very careful case formulation to try and understand the diagnosis, to understand the scope of the problem. And in hand-in-hand with motivational enhancement, again, trying to understand the why, what is the motivation for the individual, and skills training, right?

With practice, very practical practice in terms of, for example, non-acquiring shopping trips, going to a flea market and practicing not bringing items home. Really tolerating the distress of that. Having the individual understand why they're attached to items and then...

Trying to shape and change those acquiring patterns. 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? Yes. More conceptual is a chronic disease with these types of interventions reducing hoarding symptoms by 30%.

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 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 success stories. That really is great. And I know you've done some exciting recent work with virtual reality. So can you tell me about that? Yeah, absolutely. So as you highlighted, we want to do better as clinicians to help individuals tackle this. But sometimes real life uncluttering in the home is difficult, either because...

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 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 that reality, and then be able to give them practice? Is this something I want to keep? Is this something that I want to recycle? Is this something that I want to discard? When they make the decision, they put it in a bin in virtual reality. And if they've chosen to discard, you hear the sound of the garbage truck come and take away 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 understand.

practice this in a not so emotionally overwhelming way. So I just want to make sure I understand. You've taken pictures of their actual home or workplace or wherever some clutter is, and then they're practicing on virtual versions of their real items. Exactly. And then the question is, then, does that give them enough

and other feelings so that they can go into the real environment and start that process. Exactly. And we found that individuals told us that they did, that some of the practice actually translated into real life discarding, which is what we want to see.

And people enjoyed it. It was a good experience. So that says that this is a direction that we want to invest more in. Also, one thing that you can't do in real life is you can practice parting with something over and over again, which you can't do in real life.

And also, 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. Absolutely. I'm going to try to pick something else because this one is really hard for me. Absolutely. You got it. Okay.

I've also seen in your work some mention of neuromodulation. So we've heard about modulation for Parkinson's disease symptoms and for other things where they literally put in electrodes into the brain. And I don't know if that's what's happening here, but what are the neuromodulation experiments? Yeah. So for neuromodulation is a non-invasive method.

magnetic, 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, right here, right above your right eye. Yeah. And trying to, um, to, uh,

To basically change some of the neural circuits that we think that may be involved in the excessive acquisition that individuals feel the strong need to bring items. And can we can we tamp that down with it? And we're just about to launch that study this summer. So we're looking forward.

And I can imagine that 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. Kind of tips for how to approach this very delicate issue.

Absolutely. Thank you, Russ.

This is hard, right? 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. 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 want to express empathy and praise progress. You want to avoid arguments when possible and negative comments. Yeah. And to really roll with the resistance. Somebody might not be ready at that particular time. So you want to basically just kind of roll with it.

The other very, very important piece is to take care of your own well-being, right? Put the oxygen mask on yourself. Get support for yourself because it is a long road and it can be frustrating. Even as a caregiver or a friend or a concerned. So it's not just the patient, but even the surrounding support group. Absolutely. And that there's hope. I've seen success.

you know, don't go at it alone. And I think we're in an exciting time. 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.

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