- Welcome to "Healthy Minds."

(pleasant music) I'm Dr. Jeff Borenstein.

Everyone is touched by psychiatric conditions, either themselves or a loved one.

Do not suffer in silence.

With help there is hope.

(pleasant piano music) Today on "Healthy Minds."

- The heartbreaking part of what I see with patients and individuals who are suffering from Hoarding Disorder is that not only are they impaired already functionally, but there's an element of shame and stigma and isolation and not feeling like people understand that these are treasures to them, these are all treasures, and it's a lot and a long road of suffering letting go of these things.

- How common is Hoarding Disorder?

- I think the best estimate is a meta-analysis, a grouping of 11 different studies of Hoarding Disorder, and that pooled estimate is about 2.5%... of adults, so it's pretty big.

- That is significant.

Most people wouldn't realize that it's that common.

That's today on "Healthy Minds."

This program is brought to you in part by the American Psychiatric Association Foundation, the John and Polly Sparks Foundation, and the WoodNext Foundation.

(pleasant piano music) Welcome to "Healthy Minds."

I'm Dr. Jeff Borenstein.

Hoarding Disorder, what exactly is it and how can we help people who are living with this condition?

Today I speak with leading expert Dr. Carolyn Rodriguez about Hoarding Disorder.

Carolyn, thank you for joining us.

- My pleasure.

- I wanna jump right in and ask you to describe Hoarding Disorder.

Tell us what are the symptoms, what's it like for people who are living with that condition?

- Well, there's several key features of Hoarding Disorder, include difficulty and distress letting go of possessions and a strong need to save items.

And that results in the accumulation of large volumes of clutter that then impact, congest, impair an individual's ability to use the rooms of their home for their intended purpose.

For example, they may not be able to cook in the kitchen.

They may not be able to sleep in their bed, because of the items that are stored on top of their bed.

Oftentimes we'll have individuals that have to sleep in a chair, a single chair that's clear in their home, have to sleep sitting up or even sleeping on the floor.

One of the most impacting and devastating consequences of Hoarding Disorder is then it impacts functioning, whether it be social, work, or other important areas of functioning.

But one example is grandmother who just wants to have her grandkids over and cook and play games and feels like they can't do that because of the large volumes of clutter in their home.

Another key feature is making sure that you're working with a mental health professional to make the diagnosis.

Because just because you have clutter, it doesn't mean necessarily that you have Hoarding Disorder.

There can be medical conditions that can cause and create clutter, including things like dementia or traumatic brain injury, and sometimes mental health, serious mental health conditions, like for example, schizophrenia, an individual may have a lot of worries, concerns, paranoia about going outside and therefore things accumulate in the home, but that's not necessarily Hoarding Disorder.

- How common is Hoarding Disorder?

There's a lot of different studies about how common hoarding is, we know it is common.

I think the best estimate is a meta-analysis, a grouping of 11 different studies of Hoarding Disorder, and that pooled estimate is about 2.5% of adults, so it's pretty big.

- That is significant.

Most people wouldn't realize that it's that common.

And tell us about age of onset and sort of the flow of symptoms that typically may occur in a person.

- Absolutely.

So Hoarding Disorder, people may not know, it starts early and the average age of onset of symptoms is 17 years old, according to one study.

Other studies have shown us that with each decade of life, hoarding symptoms tend to increase.

And it's particularly salient in older adults.

So older adults have three times, are three times as likely than younger adults to have hoarding symptoms.

- Do people seek help on their own or is it really because family and friends have concerns?

What's the path to getting help when people do get help?

- So I think this is a very, very important question because as you're indicating, family and friends sometimes are really frustrated, right?

And wanting to help their loved one and they don't know how, or a clinician, they may feel overwhelmed.

And so the way different studies have kind of gotten at that is by assessing level of insight, which is the ability for a person to self-reflect, is this impairing or not?

And what we find is that one study showed that for individuals who are seeking help through a clinical research study or other, it's around 16%, but in the community, about 50%, about half of people have very low or no insight that they have an issue or problem that is impacting either their safety or the safety of others.

Because, you know, one thing that we know is that having a large volume of things can increase the risk of fire hazards and pest infestation.

- Right, also, if it's very cluttered, a person could be, especially an older person, at risk of falling as a result of the clutter.

So there are a variety of dangers that occur.

- Absolutely, absolutely.

- I'd like you to talk a little bit about the treatment.

What can we as professionals do to help somebody if they do come our way asking for help?

- We have a really great set of tools to help individuals with Hoarding Disorder.

It's called cognitive behavioral therapy, or CBT, specific for Hoarding Disorder, and it involves a couple different things, including psychoeducation to help an individual understand what is motivating, what is driving them to save and keep these items, challenge those assumptions.

As well, it involves skill building, so helping with some of the features of Hoarding Disorder, like a categorization, decision making.

And then finally to help expose and to challenge individuals, one aspect of it, for example, is going on a non-acquiring shopping trip where you might go to a flea market and you kind of tolerate, "I do wanna get these three items, "but I'm gonna kind of tolerate "and practice regulating not getting those items."

And cognitive behavioral therapy has a very vast evidence base, both used individually and in group and even peer-led support groups.

There's a workshop called Buried in Treasures, which takes some of these principles and can be led by a peer, individual that also has Hoarding Disorder, and is in a good position with evidence to be disseminated into communities.

- You refer to attaining objects and possessions.

There's sort of two sides to it.

There's the acquisition and then there's the getting rid of, and I'd like you to speak towards each of those aspects of the condition.

- Absolutely.

So, the way the American Psychiatric Association guideline, the DSM, is categorized includes, as the core features, the difficulty letting go of objects and the distress.

But for some people, there's some people that also have excessive acquisition, is what it's called.

And that is a drive and an excitement when they see objects to bring them into the home.

And as you can imagine, if you have difficulty letting go of objects, and, which a majority of individuals with Hoarding Disorder do, have excessive acquisition, then the rate at which items and clutter accumulate in the home gets a lot higher.

So oftentimes with cognitive behavioral therapy, we'll target the excessive acquisition early in the therapy to try and help stem the tide of things that are coming in.

Now, individuals can bring in things in a number of different ways.

They can go to a shopping mall and purchase something, I mentioned flea markets or other kind of lower-cost ways of bringing in things into the home, as well, it can be through free acquisition.

So, somebody might be going down the street and say, "Oh wow, you know, this person left "a perfectly good chair on the sidewalk.

"This is something that is beautiful, I like it "and I'm gonna, I'm gonna take it with me."

Cities where there are free newspapers that, you know, you could see somebody going by and just taking a newspaper from every single container.

So there's different, different, different avenues.

Not to mention, you know, all of us get mail continuously, you know, email, paper mail.

So there's a lot of just, at-baseline, things being sent to one that can also contribute to the clutter.

- You spoke about cognitive behavioral therapy.

I wanted you to share with us some of the research that you've done in terms of using virtual reality to help with this condition.

Tell us about that.

- One of the challenges for doing cognitive behavioral therapy is that sometimes it's hard to practice, and especially in the pandemic there was, you know, difficulty accessing individuals' homes.

And we really thought about what are ways that we could help people virtually and take advantage of technology.

And so the idea came about to try virtual reality uncluttering as a practice and a runway for having people be able to practice in a lower-stake setting.

So what they do in this therapy is they give us pictures, take pictures of different kinds of items in their home, it's scanned into virtual reality, and individuals can pick up items and talk to them with their therapist and designate, "Is this something that I want to discard, "something I want to recycle, something I wanna donate, "or something that I wanna keep?"

That's okay too.

We're encouraging them to make a decision about their item.

And so in this VR space, actually, once they make a decision, if it is a discard, then you'll hear the sound of a truck coming and taking... the item from the curb and into the garbage truck and away.

Now, some advantages, and why I think it's kind of a lower titration, is that when you're in person and you're holding a treasured object, Jeff, right?

Like something from a family member or a loved one, it has a feel, it has a smell, it may evoke a lot of memories.

In virtual reality, you can kind of take a step back.

You're not having that sort of tactile and emotional connection to the object.

So you're able to kind of do a little bit more, you know, decision-making that isn't so impacted by the flood of memories and thoughts and emotions.

The other advantage is that you can discard something as many times as you want, right?

It's virtual.

- Right, so you're not really doing it, but it gives you practice and a sense of what it's like to do it that could then help you actually discard something.

- That's right.

- In addition to cognitive behavioral therapy, what you just described, the virtual approach, tell us about the potential use of medicine to help with this condition.

- Thank you for asking, Jeff.

This is something that I definitely urge more research in the space.

So just to underline, there are no FDA-approved medications for Hoarding Disorder right now.

Now, there have been small and open-label studies, so those are ones where everybody gets the med, so it's not as rigorous as something where you're randomizing to a control condition.

And so those initial studies suggest that selective serotonin reuptake inhibitor called paroxetine, norepinephrine, reuptake inhibitor venlafaxine, and some stimulants may have an effect to decrease Hoarding Disorder symptoms.

But again, those are very early days and they need to be replicated, larger samples and with control to be able to say definitively that they work for Hoarding Disorder.

That said, individuals with Hoarding Disorder, 50% have a co-occurring condition of depression.

And so I urge clinicians, when they are helping somebody with Hoarding Disorder, to really help treat depression, to help treat ADHD or other co-occurring conditions that may also help the individual.

- Important point, that there are conditions that occur along with the Hoarding Disorder, and you have to treat the whole person, you can't just treat one part of the person, and in doing so, you have a better chance of treating all aspects of their condition.

- That's right.

- Are there any things that people can do to prevent the full onset of the condition?

If at a younger age a person is beginning to have some signs of Hoarding Disorder, they may not have the full gamut of it, are there any steps that could be taken to sort of reduce the progression of this condition?

- Jeff, I don't, I don't know if there has been research on prevention, I think there should be.

I think that's a great, a great idea and direction.

Oftentimes we'll see that kids that are developing Hoarding Disorder, the parents will come and unclutter the child's room.

And so, the manifestation isn't such, right?

The other potential is to coordinate with a mental health provider.

Strong attachment to items may be a marker for a lot of different things, cognitive inflexibility, and in that, I think you're talking about this like kind of mental health trajectory, that can be a sign that you need to reach out to a provider and get help.

But there are wonderful cognitive behavioral strategies, so that is the good news.

- Right, and it's helpful to have an earlier intervention rather than a later one.

And certainly if there are one of these comorbid types of issues, so if the person does have a depression, that could be treated sooner rather than later as well.

- Absolutely.

- Where do you see our understanding of this condition moving over time?

What's the research look like if you look five, 10 years down the road?

- Absolutely, well, I think, you know, in thinking about the cognitive behavioral model of Hoarding Disorder, which was originally described by Randy Frost and colleagues, we can think about a lot of different factors that impinge on these saving and collecting behaviors.

One side is some vulnerabilities, including genetics.

So, twin studies have shown us that 50%, that hoarding tends to run in families, and is approximately 50% heritable, with the remaining variance having to do with environmental factors.

And then also there's some research including factors such as emotion regulation, and then, in addition to the vulnerabilities, there's a category of information processing deficits.

So a lot of individuals may have difficulty with attention, that could be bolstered, difficulty with categorization, sometimes referred to as like not seeing the forest for the trees.

Sometimes individuals with hoarding over-categorize and have overly specific categories.

So you might, you know, organize your hats in one area, but then there's like a sub-categorization of green hats and summer hats and just kind of this fine categorization.

Another is decision-making.

So these are all different kinds of targets that could be helpful for interventions.

The other broad piece is, what is the emotional attachment?

Why are individuals with hoarding so drawn to objects?

And we know that individuals with Hoarding Disorder are drawn to objects just like anybody else is, sentimentality, right?

You know, a wedding dress, a keepsake, an important keepsake that's handed down from generations, right?

These are really strong emotional connections and bonds, as well as the usefulness of an item.

So, you know, not wanting to be perceived as wasteful and keeping things because they might be needed another day.

Another reason why individuals are attached to objects are beauty, aesthetics.

Individuals with Hoarding Disorder are some of the most creative individuals that I've met.

They can think of a thousand uses for something, something as simple as a toilet paper roll, right?

They can think of, this could be used for a kid's art project, and they wanna, you know, keep it, 'cause this could be used.

But then that step to actually donating it to the elementary school across the street doesn't happen.

So it's a lot of promise and excitement that allows individuals to hang on to it.

But then the actual mechanics of parting with things causes a lot of distress.

And then finally we see some individuals really attached to items because of the sense of identity or opportunity.

So, for example, somebody I started working with very early, she had like a whole room full of yarn and needles and books on crafting and knitting, and she hadn't done it in 20 years.

And yet, when we talked about her parting with those things, she would tell me, "I can't because if I, "if I get, if I don't have these things, "then that means that I am not a crafty person.

"I'm not somebody who can generate these things anymore."

So the item itself was very linked to her identity.

I think the more we can understand the motivations and the brain basis of what makes people so attached to items, and more than, you know, than we do already, right?

It's within a spectrum, we all are attached to our things, but this is, this is a much higher level.

- One of the challenges is that family members may be concerned about their loved one who they see as having this condition and don't know what to do.

What do you recommend if somebody's watching right now and they're concerned about their loved one, what should they do?

- Thank you for the opportunity to say that.

I get asked this a lot, and first I would say, you're not alone, right?

And don't try to be alone about this issue.

It's overwhelming.

There are resources, there are help.

So the first thing I would recommend is to get information and get professional help.

So there are organizations, nonprofit organizations, like the International OCD Foundation, which helps individuals with Hoarding Disorder and OCD that have information and resources.

The next thing I would say for a loved one is to work with your loved one and express empathy and praise progress, even if it's slow, it may be slow.

Avoid arguments and negative comments, and really try, try and connect, like roll, roll with any resistance.

And most importantly I would say is take care of your own health.

This is a long road and you need your own help, the idea of putting the oxygen mask on yourself is very important here.

- You make all good points, and I think in some ways, putting yourself in the shoes of the loved one.

Nobody decides they want to have any disorder and they didn't decide to do this, but for whatever reasons that research does not yet fully understand, they have it.

And it's not moral weakness, it's not being a bad person.

They have this condition just as somebody can have a medical condition and sort of realizing that and realizing that throwing away items may cause distress.

You may not understand why, but it is real distress for their loved one.

- Absolutely, so well said.

I think the heartbreaking part of what I see with patients and individuals who are suffering from Hoarding Disorder is that not only are they impaired already functionally, but there's an element of shame and stigma and isolation and not feeling like people understand that these are treasures to them, these are all treasures, and it's a lot and a long road of suffering, letting go of these things.

But yet I have seen, you know, really wonderful success stories, and for all the shows that, you know, show, you know, things going awry, I have seen, personally with my own eyes, incredible success.

People that go on to lead groups, to help others, and really to be part of a community of individuals who are learning to live with Hoarding Disorder, learning to let go and embracing and bringing others on the journey with them.

- Carolyn, I wanna thank you for joining us today and thank you for your research on this condition and clinical care of people with this condition, as well as other conditions.

Your interests and research is a broad range.

I just wanna thank you so very, very much.

- Thank you so much, Jeff, really appreciate it.

(pleasant piano music) - If you are living with Hoarding Disorder, don't suffer in silence, seek help.

Remember, with help, there is hope.

(pleasant tempo music) Do not suffer in silence.

With help, there is hope.

This program is brought to you in part by the American Psychiatric Association Foundation, the John and Polly Sparks Foundation, and the WoodNext Foundation.

(pleasant piano music)