The disorder can disrupt life in a household

Host Amber Smith: Upstate Medical University in Syracuse, New York invites you to be "The Informed Patient" with the podcast that features experts from Central New York's only academic medical center. I'm your host, Amber Smith.

The constant accumulation of clutter in a person's home can lead to depression and suicide ideation. Today I am talking about hoarding disorder and its effects on family members with two experts from Upstate's department of psychiatry and behavioral sciences. Dr. Luba Leontieva is an associate professor, and Dr. Anureet Sekhon is a medical graduate from India and a clinical observer.

Welcome to "The Informed Patient," both of you.

Anureet Sekhon, MBBS: Thank you. Thank you for having us.

Luba Leontieva, MD, PhD: Thank you.

Host Amber Smith: Some people may not realize that hoarding is an actual mental disorder, so can you tell us how this disorder is defined, Dr. Sekhon?

Anureet Sekhon, MBBS: Sure. Hoarding disorder is a mental health condition in which a person feels a strong need to collect and store a large amount of items, regardless of their monetary value or usefulness. And any attempt to get rid of these items, it causes them significant distress. That distress is to an extent that it impairs their daily functioning.

Host Amber Smith: And how common is this?

Anureet Sekhon, MBBS: According to the studies, approximately 2% to 6% of the population of the states suffers from this disorder.

Host Amber Smith: And of those 2% to 6%, do you have an age range or a race or gender breakdown?

Anureet Sekhon, MBBS: Hoarding disorder is more common in older adults, like, above the age of 55 years, as compared to younger adults ranging from the ages of 34 to 44 years. But it can occur in younger ages as well.

As far as the gender is concerned, it appears to affect both men and women at the same rates. And it is believed to be a universal phenomena with consistent clinical features in all races, ethnicities and cultural backgrounds around the world.

Host Amber Smith: And Dr. Leontieva, did you have something to say about how common compulsive hoarding is?

Luba Leontieva, MD, PhD: Yes. Actually, I think that this is under-reported. Probably a lot of people saw a show, "Hoarders." It's reality TV. And there it says 19 million Americans are hoarders, which constitutes 6%. But my belief is that it's under-reported.

Host Amber Smith: Well, there's a lot of shame kind of tied up into that, and I know we're going to talk about that. Do people who are hoarders know that they're hoarders?

Luba Leontieva, MD, PhD: Yes. Most people know that they're hoarders. They may be very defensive in admitting that they are hoarding, they have hoarding problem, due to lots of shame associated with it.

Host Amber Smith: Are there symptoms to look out for?

Luba Leontieva, MD, PhD: Yes, as Anureet described, the inability to discard items and acquiring more and more items is the first symptom, cluttered living space to the point of hazard.

Host Amber Smith: But a lot of people maybe collect certain things, or maybe they stock up on things when they're on sale at the store. Where do you cross the line into hoarding?

Luba Leontieva, MD, PhD: So the collections are not hoarding, because a lot of people collect various items. The hoarding is when the accumulated stuff is so much that it's to the point of people unable to move around in the house.

The various appliances are not functioning. The garbage accumulates. And this is very different from somebody who is collecting, say, baseball cards or something. They have a collection, and that's nothing wrong with that.

Host Amber Smith: So it starts impacting their life, it sounds like?

Luba Leontieva, MD, PhD: Yes.

Host Amber Smith: Now, the two of you wrote a paper that focused on the family members of hoarders and the severe impact it can have. I'd like you to tell us about that. Dr. Sekhon, what were the living conditions in the home that you focused on?

Anureet Sekhon, MBBS: The living conditions at home as described by the patient were unlivable. So he told us that hoarded possessions formed piles of material that reached the levels of countertops or even higher.

He expressed concerns that their home was no longer a safe place for both of them to live. He indicated that he faced difficulties navigating within the house, and the entrances were blocked. The shower was inaccessible. And the workspace was overwhelmed with boxes and miscellaneous items that occupied all the available living space.

Host Amber Smith: So this is a situation with a couple, the husband living with the wife, who was the hoarder. Did the husband try to help his wife stop hoarding?

Anureet Sekhon, MBBS: Yes, several times. He mentioned that he made many efforts to persuade her to recognize the issue, but she appeared unable to fully comprehend it.

Like, she would often provide justifications and even occasionally she expressed the willingness to initiate a change, but she consistently struggled to follow through. Most likely it was due to her emotional distress that was it associated with parting with her things.

Host Amber Smith: Would you say it's typical that a low level of hoarding is ongoing for years before it builds up to the point where things are unlivable?

Yes. Oftentimes that is the case. So the initial symptoms often start showing during teenage or early adult years. And hence they're followed by a chronic course after that. So the slow progression of the disorder, it also makes it difficult to diagnose it in early stages. Is there something that makes it escalate? Is there an event or something that happens that suddenly make something that was quasi manageable, become unmanageable?

Anureet Sekhon, MBBS: Uh-huh. Yeah. Stressful and traumatic life events, they can trigger hoarding behaviors. For example, death of a loved one, divorce or having lost your possessions in a fire, something like that.

Host Amber Smith: Dr. Leontieva, can you tell us, how was the husband cared for?

Luba Leontieva, MD, PhD: The husband was cared (for) with psychiatric admission, medications and psychotherapy.

Host Amber Smith: So this impacted him enough that he needed treatment?

Luba Leontieva, MD, PhD: To great extent. Correct.

Host Amber Smith: This is Upstate's "The Informed Patient" podcast. I'm your host, Amber Smith. I'm talking with Dr. Luba Leontieva, who is an associate professor of psychiatry and behavioral sciences at Upstate, and Dr. Anureet Sekhon, who's a medical graduate from India, and a clinical observer at Upstate.

Your paper says that multiple family meetings were held with the wife present, where she promised to clean and declutter, but she never did. Is this typical, and if so, why?

Luba Leontieva, MD, PhD: Yes, this is actually very, very typical, for hoarders to be unable to part with their possessions. The hoarding condition is what we call in psychiatry "ego-syntonic," meaning that the hoarders themselves are fine with the hoarding habit. Usually when it comes to motivation to declutter the space, it's the external forces that apply to them.

For example, the house is in such a bad condition that it's about to be foreclosed. Or the landlord is evicting the particular individual who has a hoarding disorder. Or the spouse is threatening to leave. Or the children are threatened to be taken by the CPS (Child Protective Services.) So it's almost always some other external forces that are being applied to the person who is hoarding to motivate the person to do something with this.

Host Amber Smith: Let's talk about the effects of hoarding on the health and well-being of family members. Dr. Sekhon, what do you see?

Anureet Sekhon, MBBS: Hoarding disorder can cause a lot of problems for family members as well as the hoarders themselves. First of all, the accumulated items, they can lead to inaccessibility of daily use spaces, like bathrooms and kitchens and workspaces. And then in regard to physical health, clutter can create tripping hazards, leading to severe injuries. It can even increase the risk of fires due to blocked exits and electrical issues.Hoarder homes may lack proper sanitation and hygiene. Hoarded food items may rot, posing health risks. They may attract pests, leading to unsanitary living conditions. And clutter can lead to moisture buildup and mold growth.

And, coming to the mental health problems associated with it -- hoarding can cause anxiety, shame and emotional distress among family members, causing strained relationships within the family. Hoarders, they may avoid inviting friends and family over due to shame related to the disorder, and that can lead to social isolation, which can further lead to depression.

Host Amber Smith: Well, some of this is explored in that TV show, "Hoarders." It's been on for 14 seasons, and the episodes are two hours long, focusing on someone who's struggling with hoarding tendencies and working with experts or friends and family to try to reclaim their lives. Dr. Leontieva, why do you think this show is so popular?

Luba Leontieva, MD, PhD: Well, it's reality TV, and people like to watch something that other people go through. It displays a great suffering from individuals and a horrible condition that they live with. But also in this series, the conditions often improve with intervention.

Host Amber Smith: So what advice do you have for hoarders and for their loved ones?

Luba Leontieva, MD, PhD: Well, the advice is that there is help out there. There is cognitive behavior therapy, which helps to start to take actions to declutter and prevent accumulation strategies. Many hoarders have organizational problems, inattention and past traumas, so therapy and medication management can help with that.

Host Amber Smith: Adult Protective Services and code enforcement didn't seem to offer any help in the case that you wrote about. Is there any agency that can help, that can step in? And I know it's different from state to state, but what would you advise people in New York?

Luba Leontieva, MD, PhD: Well, there should be an agency that helps with that. We just couldn't get to them. And, it is very unfortunate that the code enforcement and Adult Protective Services were not helpful and didn't have any teeth. Even if the house where the hoarder resides as a private house, still it can be a hazard for not only a person who is living there, but the neighbors because, God forbid, there is fire, or somebody fell and couldn't get help.

It's a tragedy. So I think that it should be help from the government authorities such as code enforcement and Adult Protective Services, but also a cleaning service available.

Host Amber Smith: Well, in this case, this gentleman, pleas and threats didn't work for him. Are there other strategies you might suggest that someone in this situation try?

Luba Leontieva, MD, PhD: The gentleman that we wrote (about) and his terrible family situation was really a sad example that when there is no other family members around that can reinforce the help that (is) needed, it is very hard to accommodate. It's very hard to help the person to get the message through that the situation needed to be helped. Some houses were foreclosed because the loan and mortgage is not paid. And some apartments, again, the person can be evicted. It wasn't the case in our gentleman and the description of this distress that it caused by the wife hoarding.

Host Amber Smith: Well, if hoarding is a mental diagnosis, what would happen if the hoarder was away from the home and a bulldozer came in and just took out all of the clutter? Would that fix the problem?

Luba Leontieva, MD, PhD: No. It will create a lot of anxiety, and I don't think that this is legal to bulldoze the But it'll create a lot of anxiety in the person who is a hoarder. The best scenario is to have a psychologist and a very skilled crew that can help a person to start making changes. And then the supervision is very important, as a follow up.

Host Amber Smith: Is there anything like a 12-step program, like Alcoholics Anonymous has, for hoarders who are trying to get help?

Anureet Sekhon, MBBS: Yes. There is a 12-step program called Clutterers Anonymous for hoarders, just like there is for alcoholics. It forms a support group that guides members through a series of steps designed to help them gain insight and take responsibility and work toward recovery.

The only requirement for this membership is the desire to stop cluttering. So if someone with this disorder desires to stop cluttering, they can sign up for this program and get the required help.

Host Amber Smith: That's good to know. Well, thank you both for sharing information about this case. I appreciate it.

Anureet Sekhon, MBBS: Thank you for having us.

Luba Leontieva, MD, PhD: Thank you very much for having us.

Host Amber Smith: My guests have been Dr. Luba Leontieva, who's an associate professor of psychiatry and behavioral sciences at Upstate, and Dr. Anureet Sekhon, who's a medical graduate from India, and a clinical observer.

"The Informed Patient" is a podcast covering health, science and medicine, brought to you by Upstate Medical University in Syracuse, New York, and produced by Jim Howe.

Find our archive of previous episodes at upstate.edu/informed.

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