When Parting With Possessions Becomes Problematic

Jeff Bell: Welcome and thanks for joining us. My name is Jeff Bell, and on behalf of McLean Hospital, I’d like to pass along our appreciation for your interest in this educational webinar series.

Our focus today; hoarding disorder. It is a serious but treatable mental health condition that is often deeply misunderstood. I think most of us have a sense of how tough it can be to let go of some valued possession or another, maybe an old photo album, or perhaps a favorite sweater, or a book.

But for people with hoarding disorder, attempting to discard even trivial items can cause great distress. And untreated HD can create not only mental health concerns, but also physical dangers.

Over the next hour, we want to explore what’s most important to know about hoarding disorder and its treatment. And to that end, we have brought in someone with a lot of expertise in this area.

Dr. Jeff Szymanski is a clinical psychologist and leading expert on obsessive compulsive disorder, or OCD. For 15 years he served as executive director of the International OCD Foundation, and prior to that he was Director of Psychological Services at McLean’s OCD Institute.

He is also the author of the book, “The Perfectionist’s Handbook”. Jeff, thanks for joining us.

Jeff Szymanski: Thanks for having me. Good to see you, Jeff.

Bell: Well, you and I go back a lot of years now, my friend, at least 15. And somehow that must mean that we’re getting old.

Szymanski: Old is very true. Very true.

Bell: Well, I have always, I’m sorry, go ahead.

Szymanski: No, yeah. 15 years with the foundation, but yeah, as you mentioned, I was at the Director of Psychological Services at McLean. I started at McLean in 2001. So, I’ve been in the OCD community for over 20 years.

And as we’re going to talk about hoarding, used to be considered a subtype of OCD and then kind of split off into its own category, which we’re going to end up talking about. But yeah, I’ve been doing this a long time.

Bell: Yeah, and over those years, Jeff, I have greatly respected all that you do for the OCD community and the hoarding disorder community. I know we’re going to learn a lot from you over the next hour.

I want to start with the big picture of hoarding and ask you to kind of give us a working definition of what hoarding disorder is. How would you define it?

Szymanski: Yeah, you know, one way to think about this is to think about what defines a mental health disorder. In general, a mental health disorder is defined as someone experiencing a lot of distress.

That could be, that could happen in lots of different ways, whether it’s anxiety or whether it’s guilt, or whether it’s sadness and depression and loss. So, we have a lot of distress. It’s chronic, it’s sticking around, it’s not going anywhere. And now it’s getting in the way of you living your life the way you want to live it.

So, your work is being affected, your relationships are being affected, your ability to take care of yourself is being affected. So, let’s translate that to hoarding disorder. So, when someone has hoarding disorder, it means that they’re experiencing a lot of distress.

And their distress typically is coming from people encouraging them to get rid of things and they don’t want to get rid of those things. And they’ve collected so many things that now it’s hard to get around their house.

So, they have distress from their living situation. They have distress from, again, their relationships kind of leaning on them to get rid of things, they don’t want to get rid of things. But now it’s hard to live in the house. It’s hard to eat at the kitchen table. It’s hard to sleep on the bed because there’s too many possessions.

So again, it’s something chronic. It’s something that is kind of involved in many aspects of your life. And again, you’re not living your life the way that you would like to.

Bell: From a diagnostic standpoint, are there common elements that have to be there for a hoarding disorder diagnosis?

Szymanski: Yeah, so we have to have, for a diagnosis, we need to have a lot of items piled up all around the house. They’re in living spaces, you know, I have, all my closets are full, all my cabinets are full, my basement’s full, but my living space isn’t. Right?

And so, with people with hoarding disorder, it’s not just that they have a lot of possessions. Their possessions are in their living space and getting in the way of them using those spaces the way that they’re supposed to be using them. And again, there’s lots of distress and there’s difficulty in day-to-day functioning.

Bell: Let me throw some words by you and ask for definitions as well, clutter, collecting, hoarding, squalor, starting with clutter. That’s a really charged word. What clutter represents for me might be something very different for you.

Szymanski: Exactly. And again, clutter can happen in anyone’s house, in anyone’s office. Again, this is a large collection of items, not terribly well organized, but again, it’s—Clutter is part of hoarding disorder, but doesn’t mean that you have hoarding disorder.

Again, we have to see that there’s this clutter, this pile of stuff is both getting in the way of your day-to-day functioning and getting in the way of you using the space in your home the way that you would like to. Now you see collectors with lots of stuff too, right?

But they’re organized. It tends to be, you know, they’re in boxes, they’re in cabinets, they’re on display. And so, collectors may have a lot of clutter, they may have a lot of things, but they’re organized. They know where they are, they’re displayed nicely. There’s typically a theme for someone that’s collecting. So again, you know, clutter is lots of stuff.

But again, for a hoarding disorder diagnosis, we want it to be, again, so much stuff that you’re not able to move around your house. You get into squalor. I don’t like to promote the show hoarders. I think that there’s a, that’s a mixed bag. I think it’s really raised the awareness of what hoarding disorder is.

Typically though, they focus on squalor in those TV episodes where it’s not just lots of clutter and there’s hoarding disorder, there’s spoiled food, there’s again, what we would think of as trash. There are bugs and insects if they have an animal hoarding problem. There’s lots of animals and lots of animal waste around the house.

So again, hoarding disorder can come in multiple, you know, levels and layers. There’s this really cool assessment developed called the clutter image rating scale that I think is just, was really clever, where they basically just took a room and took a picture of the room, clean and organized, and then kept adding stuff to it.

And you could kind of almost self-diagnose how much clutter is in this room is going to be related to, like, that image is the image of my living room. If it’s a five or a six, you might have a hoarding disorder problem.

Bell: Do you find that there is much confusion perhaps at the layperson level between hoarding and collecting? Cause we do hear a lot about people who are collectors, and their houses can be very full of items, as you mentioned.

They tend to be more organized than just general clutter. But I would imagine that can cause some confusion.

Szymanski: Yeah, I think it is, and you know, again, I think with, one of the other distinctions is really there’s a theme. I’m collecting coins, I’m collecting comic books. I’m collecting, you know, little figurines.

And so again, it doesn’t mean that, I mean, you can have a collection that is so big that it’s starting to get in your way, but on average, again, collectors have themes, they’re more organized, they know where their things are, and again, it’s not creating on average difficulties in their space.

Bell: Let me circle back to something you mentioned in our introduction, which is the evolution of hoarding disorder as a diagnosis. Correct me if I’m wrong, but it used to be considered a subtype of OCD, did it not?

Szymanski: It did. And you know, we were talking about, I worked at the OCD Institute from 2001 to 2008, and at that time it was still considered a subtype. It was really Gail Steketee and Randy Frost doing a lot of work on understanding what hoarding disorder starting in the early 90s.

And they really were pivotal in, you know, following, it looked like to them, and to those of us also doing this treatment that our effectiveness with our patients that had hoarding disorder, we were struggling. We weren’t getting them well in the way that we were with people with OCD.

So, there were, you know, they seemed like they were processing information differently. It seemed like exposure therapy really wasn’t quite working with this hoarding disorder population.

Gail and Randy were working with other people doing neuroimaging, and it looks like the neuro-biological difficulties that people have with OCD versus with hoarding disorder are different.

So, in 2013, there was enough research and clinical experience accumulated that they really were effective in separating hoarding disorder out from OCD. It’s now called a related disorder. They, you know, the diagnostic manual moved OCD out of the anxiety disorder chapter.

Now it’s OC and related disorders, OCD and related disorders, so hoarding disorder, body dysmorphic disorder, and what we call body repetitive behaviors like compulsive hair pulling and skin picking. That’s all in kind of that chapter.

So, there were some things that moved over to hoarding treatment that are similar, but there are a lot of differences. And so, it was really important that they were able to separate out. When you do a treatment plan, whether you’re a physician or you’re a mental health clinician, your treatment plan is dictated by your diagnosis.

So, if we’re diagnosing hoarding as the same as OCD and it’s not, that’s I think why we found that we weren’t as effective. When we separated it out, there’s some really interesting things that differentiate people from OCD and hoarding disorder that I can, we can go over at some point.

Bell: Yeah. I want to talk a little bit, too, about the overlap between OCD and HD, is it possible to have both?

Szymanski: Yep. I think the estimates are about 20% of people with hoarding disorder also have OCD.

Bell: And are there cases of OCD that sort of mimic hoarding disorder? I’m thinking about people, for example, who might hoard for reasons other than the typical hoarding profile, if you will, that they’re doing it out of concern for contamination or something that’s more related to OCD patterns.

Szymanski: Yeah, no, that’s exactly correct. So, people with OCD contamination is just going to be one of the best examples. They have a lot of clutter because they don’t want to touch their possessions because they don’t want to get contaminated. And so, it looks like there’s a hoarding problem.

When you talk with them, though, again, this is why it’s important to do a proper assessment, proper diagnosis. What is the function of the clutter for someone with hoarding disorder? I want this, I like this, I’m attached to this, I feel responsible for this.

With OCD it’s, I don’t want to be around that object that’s going to trigger me, that’s going to upset me, that’s going to hurt me, or put me in danger in some way. So, you see, you know, again, with hoarding disorder, the collecting of things is more impulsive.

It’s about generating a feeling they want to have. That’s typically what you see more in impulsive behavior. In OCD, we have compulsive behavior, so we’re doing things to not feel, so a very different kind of behavior.

So, you’re going to see that impulsive and compulsivity in hoarding disorder, but you’re not really going to see that in OCD. OCD symptoms are really driven by, “I need to get away from something.”

Bell: Jeff, zeroing in on the hoarding disorder elements. Are there items that are more commonly hoarded than others?

Szymanski: You know, it’s interesting because again, it depends on the level of severity of the person with hoarding disorder. It typically is still things like newspapers and magazines, lots of paper files, those kinds of things.

But there’s this really interesting line of research Melissa Norberg is doing, and she’s talking about, again, we keep on talking about kind of the attachment people have with hoarding disorder to objects.

And she’s looked at this research about, well, why are they, are they in fact more attached to their object objects than people without hoarding disorder? Yes. And why might they be? Well, they tend to anthropomorphize objects in a way that people without hoarding disorder.

Meaning, I’m going to imbue this object with human qualities. So now I’m attached, I can’t get rid of this because I’ve named it, it feels important to me. Right? So, there’s this attachment and this research is also showing that maybe the attachment to the objects is to make up for some interpersonal deficits.

Some interpersonal difficulties that I may not be able to establish good relationships with other people. So, my friends are not my objects. So again, not true for everyone, but again, that line of research implications for treatment, right?

We really have to go after what that attachment is about. And maybe we need to work on some interpersonal deficits for people with, not everyone, but for some people with hoarding disorder.

Bell: What do we know about the size of the population? What are the current estimates?

Szymanski: They range a bit. So, the estimates are around 2 to 6%. You know, with OCD it’s about 1.2, 1.3%. So hoarding disorder is significantly more common than, hoarding is significantly more common than, than OCD.

But you know, that translates into, you know, maybe 6 million to maybe as many as 20 million people with hoarding disorder. So, it’s again, a pretty debilitating disorder. It’s unfortunately pretty common. Again, it tends to affect not just the person with the disorder, but their family are affected, especially if they’re living in the house.

I bet you can, in your neighborhood drive by a house that is a hoarded house. The front yard is not taken care of. If, you know the windows, you can see the piles of things being piled up inside the house, not well taken care of.

It ends up potentially being a hazard in the community, you know, if they live in an apartment building, it’s affecting neighbors, it’s affecting fire codes, that kind of stuff. So again, a pretty difficult disorder to navigate.

Bell: What can you tell us about signs and symptoms to be watching for in the early stages of hoarding disorder, for example?

Szymanski: Yeah, you know, I think when we look at the trajectory of hoarding disorder, it can start during adolescence. Doesn’t have to, but can start, we did work with some teenagers, and I know lots of people that work with teenagers with the beginnings of hoarding disorder. They typically are having problems making decisions.

They have problems with attention, organization, and problem-solving skills are kind of off, if you look at kind of how they think about categorizing, I remember working with a person and we were going through their filing system and like every piece of paper had its own file. And so that ability to like chunk things together is kind of impaired.

And again, you start to see pretty early on the clutter is because they have a lot of distress getting rid of the possessions. And just to circle back to something you were mentioning earlier, in terms of what gets hoarded, they like free stuff.

People with hoarding disorder tend to love free stuff. We learned this in one of our early conferences. We left a bunch of materials out on our exhibit booth, and they were all gone the next day and we’re like, “Ooh.” No one stole them. But someone found this, like, for someone with hoarding disorder as a treasure trove of information and stuff for them to hold onto.

So, you know, we’re going to talk about treatment later, but I always thought one of the, you know, innovative things about, and again, the difference in treating hoarding disorder is you go on non-shopping, shopping trips, again, to really work on the skill of managing that impulsivity.

Bell: Jeff, we’re going to be weaving in some questions from audience members throughout the hour. And one came in that is relevant for this portion of the discussion, which is, the nature versus nurture argument, if you will, is OCD and hoarding disorders, are they hereditary?

Szymanski: Yeah, so it’s pretty common in mental health and from kind of mental health clinicians to researchers that we all think that this is multiply determined. If you have OCD, the percentage goes up that your kid might have OCD, from about 1% to about 4%.

You see this in pretty much every psychological disorder where if you have depression, if you have schizophrenia, if you have hoarding disorder, you’re more likely to see a family member with that disorder as well.

It isn’t a “one-to-one,” it isn’t a “for sure,” it’s just that your likelihood tends to be higher. So, there’s a genetic contribution. When we do imaging studies, we know that your neurobiology is a little bit different, whether it be the structure or whether it be the neurochemicals.

It’s why we sometimes do medication for people with psychiatric disorders. And your brain isn’t quite working the way that it’s supposed to. How you were raised? Sure.

If you were raised by an anxious parent, does that make you more anxious in some cases? Absolutely. Do parents and their parenting style cause OCD and hoarding disorder? No.

Can they be influential? Yeah. But so is your brain and so are your other experiences in growing up and so the nature/nurture, everyone thinks it’s a little bit of everything.

Bell: A viewer wants to know if there is a socioeconomic component to hoarding.

Szymanski: Nope. It is hoarding seen in all cultures, every level of SES. It doesn’t discriminate, just like OCD.

Bell: And Jeff, you mentioned that kids can develop the early stages of hoarding. At what point in adulthood do we start seeing some of the more physical signs of hoarding behavior?

Szymanski: Yeah, it takes a while to accumulate enough stuff in order for it to be problematic. This is typically when people hit their thirties and forties. The largest percentage of people with hoarding disorder are 50 plus.

But again, by 30 you’re starting to see some significant problems where people are going to start meeting criteria for a hoarding disorder.

Bell: And can certain life events stressful times, for example, actually trigger hoarding behavior?

Szymanski: Yeah, you know, from the research, I’m just kind of clinically what I saw, it was typically the loss of a relationship. Either someone died or it was a divorce, or it was, again, a significant loss of a primary relationship that seemed to coincide with, whether they had hoarding tendencies beforehand, it tended to get significantly worse after that.

Bell: You mentioned the neurobiology of hoarding disorder. What do we know about the brain functionally and structurally that might be impacted in terms of hoarding?

Szymanski: Yeah, so what’s interesting is that the neuro imaging studies basically say if you have hoarding disorder, something in your frontal cortex isn’t quite firing the way that it’s supposed to.

Now, what does your frontal cortex do? It’s about organizing, it’s problem solving, it’s sequencing, it’s categorizing, right? All of the dysfunctions we’re seeing in people with hoarding disorder.

If you have OCD, we’re seeing kind of the side of your brain light up, the temporal parietal is going to light up. And that’s because your fear alarm system isn’t working quite right. It’s, you know, it’s giving you lots of false alarms.

And so, with hoarding disorder, we’re going to focus a lot on like working with their executive functioning, not exclusively people with hoarding disorder typically also are going to have some emotional regulation problems. Again, the impulsivity, the not being able to deal with the distress of get getting rid of something, so you want to focus on that.

But with people with OCD, you’re really seeing primarily that their anxiety is out of control and that their behavior is all spent trying to manage and control the anxiety. So, treatment can look quite different. You know?

Bell: That’s a perfect segue there. Let’s talk about the treatment itself. I know that there are many different components, many different options.

Kind of walk us through, take as much time as you’d like and walk us through the various treatment procedures and options for somebody with hoarding disorder.

Szymanski: Yeah, you know, what’s interesting is that there’s a movement, I think, across mental health to really make sure that you’re doing a really good psychotherapy with people. And what I mean by that is that you need to take your time, you need to get to know the person.

You need to do a proper assessment. Is this hoarding disorder? Is this OCD? We have to figure out our treatment plan first. If you’re going to have someone do vulnerable things and difficult things, you have to spend time really developing a strong therapeutic relationship with the person.

From there, with hoarding disorder, although this is true with working with many different groups, you really want to spend some time early in treatment. One specific strategy is called motivational interviewing. And what this is really just looking at when you engage in X behavior, what does it do for you and how does it backfire on you?

And you’re really trying to work with the person to develop motivation to begin challenging these dysfunctional behaviors. Instead of saying, “Your behavior’s dysfunctional,” you get them to recognize, acknowledge and really let it sink in. Like, I’m getting, I got a short burst of a good feeling, but I have chronic anxiety and chronic distress, right?

So that motivational interviewing, really getting them to buy into your treatment model, buy into the goals of treatment, and then you’re really setting up for kind of the core of the treatment, which is skills training, really more out of a cognitive behavior therapy kind of textbook.

So, we’re going to work on skills like how to organize, how to categorize, how to problem solve differently, how to make decisions. Like, you know, one of the things that they talk about when you’re working with someone with hoarding disorder is they’ll pick an object up, think about it, talk about it, and put it back. And they call this churning.

And what you really want to do is it gets in your hand and it either goes in a discard pile, a donate pile, or a keep pile, right? So, we’re just really, you know, I think the most effective hoarding disorder treatment is in the home around their possessions. Not all therapists have the ability to do that.

So sometimes they bring boxes of things in and you’re just teaching them skill of how to differentiate, how to make good decisions. If I want to be able to eat at my dining room table, I’m going to take all that stuff on the dining room table and we’re going to figure out where it’s going to go.

A lot of emotion regulation training, you know, I think this is really the core of that non-shopping, shopping trip. How do you have a feeling where you are missing out on an opportunity and you’re disappointed?

And how do you just allow yourself to feel that, understand that feelings come and go and that you don’t have to do something in order to make things go away. As I mentioned, you know, they’re starting to recognize that there’s an importance in working on interpersonal difficulties.

Many people with hoarding disorder report a lot of strain and stress in family relationships. You do see in this population where family members are going in and doing forced clean outs, which is a terrible idea. It doesn’t treat the disorder.

You’ve just now alienated and angered your family member, and now they may not let you even in their house. So again, really looking at some of these interpersonal difficulties and working on them.

Greg Chasson has done this really great program called “Family-As-Motivators,” and it’s a training program for family members about how to work with and talk to and negotiate differently with their family member who has hoarding disorder.

There’s a really good webinar also on the International OCD Foundation has a website called helpforhoarding.org and it’s on their treatment page. So, you know, there’s a lot of components to hoarding disorder. Again, just because it affects so many different things.

Christiana Bratiotis does a lot with creating, helping to create hoarding task forces so that if an, you know, housing authority gets involved, housing authorities start doing the clean outs and they’re like, no, no, no, let’s help get this person in treatment. Let’s not do the clean out.

So again, getting into the community and working with, which is very different than most other mental health conditions. You’re really working community-based with community professionals.

And then there’s this really cool group, Lee Shuer and Becca Belofsky do a lot of peer support and a really cool innovation, Lee and Randy Frost worked on this, this treatment model called “Buried in Treasures.”

And it’s really a peer support group where again, it isn’t a clinician saying you’re a bad person or a family member, it’s, you know, I’m struggling with hoarding disorder myself and I got good treatment. And so, they do this kind of peer-based support, and you know, again, I think that that’s a really important component as well.

Bell: Are medications sometimes used as part of this process for treating hoarding disorder?

Szymanski: Yeah, you know, there’s not a ton of research on medications. The medication research basically says, look, there’s typically a lot of other things going on for a person with hoarding disorder, there’s probably depression, there’s probably other anxiety disorders.

Let’s get in there and get medications that we know kind of improved mood, decreased stress and anxiety that actually is, “Oh, I’m feeling better. “I can think more clearly. “I can challenge myself more, I can take on more stressors.”

So, they think on average medication is really good for just kind of taking care of the overall person, getting them in a better place so that they can access the treatment a little bit better.

Bell: Can we circle back to what you were talking about with the force clean out? You said that’s a really bad thing to do.

Specifically, why? Why is that problematic and what is a better approach to doing that for family members?

Szymanski: Yeah, so I think that a forced clean out, as we were talking about before, if I have an attachment to something and it’s important to me and you come in and take it away from me, I experience that as an intrusion. I experience that as a boundary violation. I experience that as you doing something mean to me.

And so, I think, again, there’s an interpersonal boundary that’s been crossed. It can feel very traumatic to people if they’ve lost something that is very important to them. Just because you think it’s trash, it doesn’t mean it’s not important to me.

So, you know, again, I think that these programs like the Buried In Treasures program, the Family-As-Motivators, how do you go in and say, “Look, I get that these possessions are important to you, but they’re not only affecting you and I’m concerned about you, but they also affect me, maybe because I have to share a space with you.”

Or “I’m just—I’m now finding myself being anxious about your safety because I’m worried that as you get older with all these things all over the floor, you’re going to trip and fall and hurt yourself.”

So, it’s about really opening up a conversation for someone so that you’re joining with them, you’re empathizing with them, you’re not agreeing with them, but you’re not doing it to them. If you do it to them, they’re just going to walk away from you and do it again.

Bell: Harm reduction. We sometimes hear that term around a hoarding disorder. What does that mean and how is it applied in the treatment of hoarding disorder?

Szymanski: Yeah, you know, in any therapy your job is to make sure that the person is getting what they want, right? So, you know, in harm reduction, a more popular example is in addictions, right? That you don’t try and get the person to be completely sober. For some people, that is the model, and you should do that.

For some people that’s kind of moderated harm reduction, let’s, you know, not have, let’s work on you not drinking every day. Let’s work on you not binge drinking, let’s work on you not drinking to the point of blacking out. It’s really about like, how do we moderate this so that it’s not so problematic and we don’t have to fix the problem entirely.

You know, again, for someone with hoarding disorder, it might be that they say, you know what, I just want to be able to sleep on my bed. Okay, well then let’s go in, let’s work on your bedroom. If you never sit down at your dining room table like that doesn’t affect me.

If you want to have a hoarded cluttered dining room table, have a hoarded cluttered dining room table. So, it’s really, I want to follow what they want to do. What are their goals for treatment? What’s important to them?

Bell: How do professional organizers factor into this equation?

Szymanski: So, what’s interesting about professional organizers is that someone without hoarding disorder is going to hire a professional organizer. I need you to come in and help me organize my closet. I have all this clutter. I don’t have hoarding disorder, but I have all this clutter and I’m not sure what to do with it.

And I’m challenged by problem-solving and so professional organizers come in and they go, “Here’s how you—like as a professional, I’m an expert in making your space efficient and clean and accessible.”

So of course professional organizers are running up against people with hoarding disorder and they’re saying, “Ooh, I need help organizing.” So, what I thought was cool is this group called the Institute for Challenging Disorganization.

Gail Steketee and Randy Frost, who I mentioned, worked with this group and they have a credentialed program where they went in and they are training professional organizers to see what hoarding disorder is, learn how to work with people with hoarding disorders so that their professional organizing skills are actually being used properly.

I think they were going in and the hoarder, the person with a hoarding disorder was like, “No, you can’t get rid of any of this.” And they’re like, “Well I can’t organize this because all of your cabinets are full. We need to get rid of stuff before we can organize, right?”

So, this group really has gone out of their way. There’s a group of professional organizers who’ve gotten this extra training, made them more effective at what they do.

Bell: We are getting all kinds of questions, I’m going to try to weave some of them into our conversation here. A lot of them are about what loved ones can do to support somebody who is hoarding and perhaps denying that they have a problem. Let’s start there.

Szymanski: Yeah. You know, again, I think it’s, we mentioned motivational interviewing before, you know, that’s a very straightforward skill that you can learn that you don’t have to be a therapist to learn. There are great books out there, there’s a lot on the website.

And again, it’s really that kind of compassionate patient stance towards your family member of, can we talk about what are you getting out of this and what is it costing you? And asking the person to think about that. Because you’re right, some people with hoarding disorder are ignoring or downplaying the negatives.

So again, instead of wagging your finger in their face and saying, “There’s lots of negatives,” having that compassionate conversation, I think for a lot of people, and you’re seeing, I’ve been seeing this trend over the last 20 years.

If you have someone, we’ll go back to OCD, parents would call the Institute and say, “My kid has OCD, but he doesn’t want treatment. What do I do?” And we would say, I think you should get treatment. I think you should get treatment for yourself about, you get getting your own support, you figuring out your own negotiating strategies.

How do you, again, negotiate with a family member in your home where you’re getting what you want too, right? It shouldn’t be that a person with OCD is getting to be symptomatic, a person with hoarding disorder gets to be symptomatic. It’s what’s in it for you, but also what’s in it for me? We’re in a relationship, right? And just helping them kind of think that through.

So, I think if you have a family member with hoarding disorder and it’s causing you a significant amount of distress, I think it’s really important to find your own therapist and say, “Hey, I need some support. I need a place to vent. I need a place to problem solve. I need a place to figure out how to be patient and go back to my family member.”

Also, “Am I doing anything that’s facilitating the hoarding problems? Am I going and, you know, they don’t drive anymore, so am I going out and buying them things and bringing them back as a way of placating them as a way of making them feel better?”

But you know, OCD and hoarding difficulties, we call this accommodation. You’re really now participating in the symptoms with them, with the intention of trying to help them, but it actually backfires. So, and again, I think these really formal trainings that Greg gives and has done some research on have been really important.

And again, that kind of multi approach, there’s not one, there’s not going to be a single bullet, a silver bullet about understanding why someone has hoarding disorder. And there definitely isn’t one approach to how we’re going to help someone with it.

I think these multifaceted approaches, both them getting their own treatment, the community participating, the family members, finding their own supports and their own ways to lever in differently is really important. And again, that kind of group community support with the peer support specialists.

Bell: You mentioned earlier that it’s not uncommon to see co-occurring disorders when you’re dealing with hoarding disorder. What are some of the more common co-occurring disorders and how does that complicate treatment?

Szymanski: Yeah, so it is pretty common for a co-occurring condition with hoarding. The most common ones are depression. Again, if I am engaged in behavior that has more negatives than positives and that’s taking over my life, that can be true in any kind of behavior and lead to depression. You see a lot of social isolation that happens for people with hoarding disorder.

Again, whether it’s with family members that are frustrated with them or family members who have done clean outs and they, it’s kind of a broken relationship. So, we have depression, we have isolation, and a lot of anxiety comes with a hoarding disorder. We’re going to have some social anxiety. We’re talking about some interpersonal deficits.

You might have panic attacks and it does make it more complicated, right? I’m talking about this multifaceted approach to hoarding disorder, well now you have, you might be triggering trauma, you might be triggering- the depression might be getting more difficult or more intense.

So, I think, you know, in those cases it’s, you know, a lot of times if I worked with a more complicated case, there’d be more than one of us working with that person. Maybe one person was doing skills training with them, and another person was working on relationship and interpersonal skills.

Bell: A viewer asked—

Szymanski: It’s complicated.

Bell: I’m sorry, a viewer asked, where does one start when seeking treatment for hoarding? I mean, that’s a great question. I know the, the IOCDF is a great starting point for that, the hoarding website. But it can be difficult to find the right cure at times.

Szymanski: Yeah, so I think what’s really cool about what we did at the foundation, so I started there in 2008. By 2010 I was in talks with Gail and Randy about a website. So that website is now over 12, 13 years old. So, it’s helpfulhoarding.org.

What’s cool about the website is that clinicians who have identified as hoarding disorder specialists are all in a resource directory. You can just go in and put your zip code in our, that resource directory and your hoarding specialists are going to show up.

Professional organizers who have gone through this training are going to show up. Support groups are going to show up for people with hoarding disorder, online and in person. So you go to that website, you can find providers and other resources there.

And that website, again, was built by, the content was built by Gail and Randy. Gail and Randy have subsequently now retired.

And so, the three people who are overseeing that are Christiana Bratiotis, who does a lot of, again, this kind of task force and community-based care. Kiara Timpano is a researcher down in University of Miami and Carolyn Rodriguez, in your back door at Stanford.

Bell: Stanford, yeah.

Szymanski: Doing a lot of the, again, she’s a psychiatrist, so doing some of the research and that kind of stuff. So, you know, I think we really meant that website to be a one-stop shop. There’s, you know, a list of books there, there are other resources.

So, a lot of the education that we’ve talked about, you know, in preparation for this, just to kind of, you know, get me remembering some of the things I wanted to highlight. I went and stole some things right off that website.

Just lots of great resources, how to get ahold of Greg, how to get ahold of all these senior people. There’s ways to get to them through there. The resources, the books, there’s webinars, you know, we did multiple live streams like this one we did at the foundation. So, they’re all posted on the YouTube.

So, lots of information out there, but I, I strongly recommend you just start at that website. That was the intent is to gather all those resources in one place.

Bell: It really is an amazing clearinghouse of information. Jeff, we sometimes hear about animal hoarding. What does that reference and how is that treated?

Szymanski: Yeah, so with people with animal hoarding, it’s basically the same issue of having too many things. It just, in this case happens to be animals. It could be birds, cats, dogs. The problem is the same thing, I’m acquiring, I feel responsible for this animal. I’m going to bring them in, but I don’t know how to care for them.

And they’re all over the house. And I’m not cleaning up after them because I’m overwhelmed because I went from having five or six to now, I have 80 or 90. Who can take care of 80 or 90 cats? They kind of just take over the person’s life and the person’s house.

Those tend to be more squalor environments, because again, the inability of keeping up with that many animals. The psychology is pretty similar though. It’s, they came into my life, I feel really attached. I feel it’s too hard to let go. And so, the treatment’s going to look very similar.

How do we, you know, someone’s going to come in and take all these animals. Every once in a while, we see that in a news outlet that there were 80 or 150 animals that were taken.

I don’t, I don’t want all 150 taken. So, we have to figure out how can we begin finding homes for them? And so again, the treatment’s going to look very similar to hoarding disorder treatment.

Bell: Let me dip back into our mailbag, so to speak, and ask you some very specific questions that are coming in, Jeff. How does early loss or attachment disorder fit into the hoarding spectrum?

Szymanski: Yeah, the, you know, there’s a growing amount of research on this. Melissa Norberg, her research was looking at this that they were finding, again, I want to be careful about talking about this because I don’t want to be like labeling people as this. On average what her research was showing is that there is an anxious attachment.

Attachment theory is that when you were growing up, when you went off to play, did you turn around and look at your parent and feel secure that they were there, you were okay, or did you have to come running back to them? So, there’s secure attachment, there’s anxious attachment, different kinds of attachment styles.

They do think for people with hoarding disorder, there is this sense of like, where were my parents? And they don’t feel securely attached in their relationships. So, the research that she’s doing is really looking at how do we then work with someone with hoarding disorder?

This is what I’m saying, this is kind of emerging research that I think people working with this population really need to look at these interpersonal factors. How can we address the anxiety that comes up with you feeling like this person isn’t there for you? How do you address that?

How are you assertive in bringing that up that maintains the relationship rather than it becoming acrimonious?

Bell: Let me see if I can consolidate a couple of these specific questions. Are you seeing correlations between hoarding and gambling disorder and is there any connection between an eating disorder and hoarding disorders?

Szymanski: You know, it’s interesting when people talk about kind of connections and overlaps. There are, as we talked about co-occurring conditions, we talked a little bit about impulsivity and compulsivity. I did not see a lot of compulsive gambling necessarily with people with hoarding disorder.

It is more that they were, what it overlaps with is that like, I’m doing something to get a high, I’m doing, I’m gambling because I want to, when I win, I feel really good when I acquire something that feels like a really good find, I feel really good. So that’s the degree to which it overlaps.

Again, I think that you really want to, whether it’s for yourself or for a family member, have someone who really understands how to do that differential diagnosis. So, it’s less about like the overlap and more about like what are the conditions that we want to treat because treating impulsivity is different from treating compulsivity. I hope that answers that.

Bell: Jeff, I think it’d be really helpful if you’re up for this to kind of walk us through a hypothetical situation. A person comes in for treatment that is saying, say for example, hoarding newspapers and it’s becoming a problem because his apartment is becoming overrun with that.

Can you kind of walk us through hypothetically what that treatment process might look like?

Szymanski: Right, so if this person was seeking treatment, one of the first few things I would be asking this person is, are you here because you’re recognizing that this is a problem for you?

And then I would ask a bunch of questions about, if so, what are the problems, right? It’s important for me to figure out right at the front door how much motivation this person has. Unfortunately for people with hoarding disorder, this population is known for not having high seeking treatment behaviors.

It typically is, “I’m being forced to by the city, I’m being forced to by my family.” It’s not that that’s a bad thing, it’s just a different kind of motivation, right? So, if you’re here of your own volition, you are really getting that this is a problem for you, that’s going to be a different kind of conversation.

One of, “Okay, now let’s talk about in what way is the newspaper piles, how are they problematic for you? Is it that you’re worried about that it’s taking over the house? Is it that you can’t have people over? Is it that you’re worried that you’re going to lose something valuable if you throw it out?”

So, you really have to ask these questions to figure out what is the function of having these newspapers in this person’s life? What is the function of them making the decision to not get rid of these things? And you really have to go in depth to figure out what is the, what are these motivating factors?

Now if their motivation for seeking treatment is because of someone else, I always try to say, “Well look, I’m on your side. I also can’t control your family and I can’t control the city.”

So, we’re going to have to do some acceptance about like, this is a stressor in your life and the problem to solve is how can we work together to de-hoard to remove these stressors from your life, right?

So, you have to really look at where we would start with the problem-solving process. If they’re motivated, you start, you know, with the kind of motivational interviewing. If they’re feeling levered into this, again, you want that leverage there, but you really want to be empathetic about that experience and what that means.

So that would be kind of the early place that I would go. And then it would be, you know, a fair amount of education, really de-stigmatizing, taking the pejorative-ness out of, we don’t call people hoarders, so you’re an individual with hoarding disorder.

It is, because I do a lot of psychoeducation, I would typically send people to the website, your brain doesn’t work the way that people without hoarding disorder works. That’s not through your fault, that’s not your fault.

It’s yours to fix, but it’s not your fault that you never learned, or your brain doesn’t work in this kind of organized and categorical way. But we can teach you those skills. So, it’s a lot of, you know, again, empathizing, you didn’t do anything to bring this on you, but you are now living your life in a way that you don’t want to be living it.

So, let’s skip down to doing that hard work. This is going to be hard and anything worth having in the world comes at a cost. It’s all hard. If you want a really good relationship with someone that is hard work, right?

So, it’s using those kinds of metaphors, we’re going down a difficult path and at the same time, this will be rewarding for you. If you get on the treadmill and as soon as you start to sweat, you get off the treadmill, we aren’t getting any health benefits, we aren’t getting any weight loss benefits. You got to stick in there with that difficult treatment.

So again, a lot of relationship building, a lot of orienting the person to why we think people have hoarding disorder, really orienting people to what the treatment looks like. Getting a lot of their buy-in about is this worth it? If it’s not, maybe you’re, maybe you don’t really want treatment.

I don’t, as a therapist, I don’t want to do treatment to people. I think that’s always a sign of a poorly trained therapist where they’re working and they’re, they’re working on behalf of the patient, they’re working harder than the patient. I don’t think then as a therapist you really sat down and listened to what they want.

Now sometimes patients can put you and themselves in a weird position of I want to problem solve the problems in my life, but I want to do them in a way that doesn’t work and they’re not identifying that they don’t work. So, for example, I’m coming to therapy, I have OCD, your job as the therapist is to get rid of the anxiety for me. Well, I can’t do that.

I can’t enter into that contract with you. Right? So, there’s a little bit of like, you know, how is your life going to change? But we have to be realistic about what are problem solving strategies that work and what are problem solving strategies that would be great, but don’t work.

Bell: Jeff, I know there’s no one answer to this, but generally speaking, how long should this process take? Are we talking about months? Are we talking about years to go through treatment?

Szymanski: Yeah, so again, I keep going back to Gail and Randy. They did a treatment outcome study they had the treatment protocol that they had developed, and let me just make sure, I don’t want to- Their treatment protocol was about 9 to 12 months and they found significant reductions in hoarding behavior and hoarding symptoms with that treatment.

So again, a significant investment, a significant amount of time, other disorders can be treated more quickly. So again, this is a time and investment, but I think that 9 to 12 months tells you about the complexity of this disorder and the complexity of the treatment that needs to match it.

Bell: And is the goal to cure oneself of hoarding disorder or to learn how to manage it? In other words, is this a chronic condition that people will most likely be living with for most of their life?

Szymanski: Well, so what I typically say to people, because this, this question is typically asked in OCD also. And you know, if you know anyone who is a smoker, if they smoked for any length of time, and then they’ve quit, my stepfather smoked three packs a day until he was 40. He’s 83.

And if you ask him, if you lit up a cig- someone lit up a cigarette, would you have a craving? He would say yes. So, when we learn something, when something’s part of our life, if we move it out of our immediate awareness, it can lose power, it can lose, again, it’s really about learning, put it on the back burner.

What we talk about with people with OCD is turning down the volume of the obsession. It doesn’t go away, it just gets much quieter. It’s not central focus, it’s over here. So that is really the goal with people with a hoarding disorder. They’re always going to want to buy that next new cool thing. They’re always going to get a little bit of a bounce from it.

But it’s that kind of skill of, ooh, I’m about to purchase this book. And kind of a very straightforward skill. I would work with people with hoarding disorder if they collected lots of books is you can buy a book when you discard a book, when you have room on your bookshelf, then you can buy a book.

So, it’s creating that impulsive like, “Ooh, I want that.” That’s always going to be there. But now we’ve put in a pause, we’ve put in a reflection, we’ve put in accessing skills right before we make that decision.

Now we might still buy the book, but with good treatment we’re less likely to. So yeah, anything that comes into our life is there in some significant way, our goal is really just turn down the volume of it.

Bell: Let me squeeze in a couple more questions as we start to wind things down here. I’m going to paraphrase this question, but is an over-attachment to money considered a hoarding disorder?

Szymanski: Um, no. I didn’t really see that, again, money as like an object, but accumulating money so that I can do something with it, I don’t think that was really it. Like there were coins, special bills, that kind of stuff, but I, I did not see the hoarding of money.

Bell: Are there international hoarding disorder resources? I know part of the answer is again, the hoarding website, which offers resources around the world. Any other thoughts that come to mind for people living outside of the United States?

Szymanski: You know what, I actually don’t know. What I would recommend is calling the International OCD Foundation. Bethsy Plaisir is the community outreach and support manager there.

And she would, those are the kinds of questions that she gets, and she would do some research on that and see if there are resources. But nothing comes to mind. I think the majority of the research and treatment for hoarding disorder has really been in the United States.

Bell: What’s the frontier for all of this on the research front? What are researchers looking into in terms of treatment and other ways that they might positively impact somebody living with hoarding disorder?

Szymanski: Yeah, I think it’s a couple places. I’m just going to kind of summarize some of the places I hit on. I think the interpersonal stuff has been under-recognized and very, very important to get in these protocols. I think a hoarding disorder treatment needs to be multifaceted and I think that they’re going to find that.

And then, and this was Jordana Muroff at Boston University. She was, and this was 10, 15 years ago, she was really looking at can you do virtual therapy with people with hoarding disorder and is it as effective, more effective? She found it was more effective because they’re in their possessions, right? You can’t bring all of it to the office.

So, she was doing teletherapy. Now what do we know from Covid? There’s been a million, not a million. There’s been a lot of research about how teletherapy for many people is as effective as in person and a lot of therapists never went back to the office.

So, they have a hybrid. It’s increased accessibility, right? So, if you live in Montana, there might be one hoarding disorder specialist in all of Montana. Well now we’re going to do teletherapy. And now, you know, teletherapy for hoarding disorder is very effective.

I think the best treatment really is home-based. Where I as the therapist, am going to go into your house. The logistics of that are very difficult. So again, I think it’s, you know, the interpersonal component, making sure that there are multiple ways in which the hoarding disorder is being addressed. I do think it’s incredibly important to keep the family in.

Where the biology stuff is going to go, I’m not really sure. That would be kind of a fun conversation to have with Carolyn Rodriguez, she’s really going into that. But I think they’re really finding this really to be a behavioral and emotional struggle that really good CBT, multifaceted CBT can address very well.

But, you know, I’ve become increasingly a fan of “mental health conditions don’t just affect the person, they affect the system” and making sure people in the system are taken care of. We did that at the Institute where we innovated and brought in therapists.

So, you went in, and you had a behavior therapist, then you had a family therapist, knowing that OCD really impacted other members of the family, and that was a critical component. So, I think more research on that, that’s where that’s going to go.

Bell: One of the things I like to do with this webinar series is end on a hopeful note and ask our experts to provide a message of hope to somebody who might be watching right now dealing with hoarding disorder or perhaps impacted by HD.

You have worked with so many people over the years, Jeff, what do you want somebody struggling right now to know about the hope that is available through treatment and support?

Szymanski: Yeah, you know, I think it’s one of the things that I’ve been struck by being in the mental health field now for over 25 years is how isolating mental illness can be.

And that is, you know, there’s not just for the person struggling with the illness, but for the family members, too. One of the things that we really spent more and more time on, focused on at the foundation, was building communities of support.

Whether they’re support groups, whether they’re Buried in Treasures, we run a hoarding disorder conference annually, virtually for people with hoarding disorder, for clinicians, and for family members. It is about finding those communities and finding people that know what they’re doing.

A lot of people get a lot better, both individuals suffering with and family members if they get to the right places. So those conferences, those resources, the people I mentioned, that website, get to the right place, find a community of support, it’s really critical to not have to struggle by yourself.

Bell: Jeff, we have covered a lot of ground over the past hour, and I just want to thank you for providing so much information and hope for folks who are dealing with or impacted by hoarding disorder.

Szymanski: Absolutely. Thanks so much for having me on. This is what I like to do. People should not suffer and struggle in silence and alone. They need, there is excellent help out there. You just got to find it.