Clutter

What Does Hoarding Disorder Look Like?

Individuals with hoarding disorder may compulsively save or have difficulty discarding items they believe have sentimental, instrumental, or intrinsic value. Why do people hoard if their accumulated clutter hinders their function, health, and safety? Because it’s too painful for them not to.

By ADDitude Editors Verified Updated on November 1, 2022
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What Does Hoarding Disorder Look Like?

“All the horizontal surfaces are covered,” says Randy O. Frost, Ph.D., the Harold Edward and Elsa Siipola Israel Professor Emeritus of Psychology at Smith College. He is describing a textbook case of hoarding disorder and a patient with whom he has worked: “A random amalgam of things — newspapers, ribbons, egg cartons, and wrapping paper — covers the kitchen table, save for a tiny corner for the patient and her two children to eat their meals. They can’t sit down at the same time to eat. So, the clutter has affected how the family functions. Teapots sit on the stove right beside a pile of papers. A heat source next to a fuel source suggests this is a serious problem.”

The dining room area is just as cluttered — with books, board game pieces, and dishes stacked so high on the dining room table that they practically reach the chandelier, Frost says.

“Buried amid the clutter are blue storage bin tops, which suggests that she recognizes the problem piling up around her,” Frost says. “If there were a house fire, she would have difficulty getting out of her home. She would have to go back through the kitchen and a sea of things in the garage with a small pathway running through it.”

Her den contains a different type of clutter: paperwork. Only a small corner of her couch is without mess, leaving her a tiny spot to sit for hours every day while she tries to work through her stuff without much progress.

“Typically, she would pick up something off the pile, look at it, review why she got it, and then find herself unable to decide what to do about it,” explains. “So, she would return the item to the pile — somewhere else in sight, so that she could see where it was. That was her way of reminding herself to do something about it.”

[Self-Test: Is Your Clutter and Disorganization Out of Control?]

Bags filled with gifts line the upstairs hallway. “These are things the patient purchased over a couple of decades that she’s been unable to get rid of,” he says. “This is fairly typical behavior of people with hoarding problems. She sees something she likes when shopping and can’t resist acquiring it. In her mind, she thinks, ‘That would make a great gift for someone.’ Sometimes she has a specific person in mind. So, she buys it and brings it home. For her, this is a way of staying connected to other people. It’s a part of her social sense of self.”

Frost continues, “Now, the fact that she can’t quite get it together to give it to other people is a part of the hoarding difficulty we see. But in her mind, this is not part of the problem because these things really don’t belong to her. They’re supposed to go to someone else.”

Frost has published more than 160 scientific articles on hoarding and related topics and is co-author of  Stuff: Compulsive Hoarding and the Meaning of Things with Gail Steketee, Ph.D., MSW; and Buried in Treasures: Help for Compulsive Acquiring, Saving, and Hoarding with Steketee and David Tolin, Ph.D.

Frost sees visible deterioration, deferred maintenance, or accumulated piles of things outside the home in roughly half of his hoarding disorder cases. “These are the cases that are more likely to get reported to the health department and lead to authorities coming in and insisting on change or doing something to prompt a crisis in the person’s life,” Frost says.

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Why Do People Hoard?

Factors such as family history, poor health or disability, indecisiveness, perfectionism, procrastination, emotional dysregulation, and poor attention and focus (where you can’t see the forest for the trees) may lead an individual to have hoarding disorder, according to Carolyn I. Rodriguez, M.D., Ph.D., Professor and Director of the Translational Therapeutics Lab in the Department of Psychiatry and Behavioral Sciences at Stanford University School of Medicine, and co-author of Hoarding Disorder: A Comprehensive Clinical Guide, with Frost.

“It’s quite possible that a child raised by parents who modeled extreme hoarding behaviors and beliefs about saving did not see nor was taught organizational and maintenance skills,” Rodriguez says.

Frost adds that “there is sufficient evidence that hoarding is at least partly genetic, though exactly what feature of hoarding is genetically determined is not clear.” 1

People with hoarding disorders have information processing deficits, including impaired working memory, impaired attention, poor self-control, and difficulty making decisions.2These information processing deficits impact an individual’s perception, association, and cognitive inflexibility.

How Do People Hoard?

Hoarding disorder manifests in three major ways.

Manifestation of Hoarding #1: Acquisition

“We find that about 90% to 95% of people with hoarding disorder acquire items excessively, and they do so in several different ways: buying, stealing, passively acquiring, and receiving free things,” Frost says.

One of Frost’s patients lived a few hours outside of New York City but avoided it entirely. “She would invariably see a news kiosk and think, ‘Look at all those newspapers and magazines. Somewhere in all of that, there’s a piece of information that could change my life. How can I walk by and not try to find it?’

“And the only way she could handle it was to cross the street and look away. That didn’t satisfy her. So, she won’t go into the city. You can see the power of this excessive acquisition for her,” he says.

This patient also had a standing arrangement with the local postmaster: Any newspaper or magazine that couldn’t be delivered because the address was smudged, or the person moved would be put into a box. On the weekends, she would come and pick them up. This is an example of pursuing free things.

Passive acquisition is a bit different, explains Frost. “Junk mail comes to your house. It can also accumulate if you don’t get rid of it.”

Frost says that fewer than 5% or 10% of people with hoarding problems steal.

Manifestation of Hoarding #2: Compulsively Saving & Difficulty Discarding

Clothes, newspapers, books, and containers are the most significant volume of items that Frost sees in his patients’ homes. “For people with hoarding problems, these items are generally not worthless and worn out,” Frost says.

Compulsively saving or having difficulty discarding things relates to the nature of the attachments, which fall into three categories: sentimental items, instrumental items, or intrinsic items.

Frost recalls watching one of his patients sort through paper items. “She pulled up a five-year-old receipt from a department or grocery store and remembered some of the items she bought — she still had some of the items,” he says. After the patient returned the receipt to recycling, she started to cry. “She said, ‘I feel like I’m losing this day in my life. And if I lose too much, nothing will be left of me.’ This attachment tied to her sense of identity and self, which made it difficult for her to get rid of it.”

The patient also had instrumental attachments. Frost found discarded cardboard tubes from toilet paper rolls stuffed in between the refrigerator and woodwork surrounding it.

“‘These would make great art projects,’ she said, though she wasn’t an artist and didn’t have a project in mind,” Frost shared. “Then she said, ‘I’m saving them for my son’s art teacher.’ But her son’s art teacher didn’t ask her to do this or even know about it. She could see a use for something, and if she got rid of it, she would feel guilty for wasting it.”

She also placed intrinsic value on items. During one visit, the patient said to Frost, “I’ve got to show you something,” and ran into the other room, returning with a large, clear plastic bag filled with bottle caps. “Look at these bottlecaps. Aren’t they beautiful? Look at the shape and the color and the texture.”

“When I see a bottlecap without a bottle, my only thought is that’s trash,” Frost says. “But for her, it’s florid. It’s a magical experience where she appreciates the physical qualities of these things that most of us would consider trash.”

Manifestation of Hoarding #3 Disorganization

“Clutter, where there is a mixture of important and unimportant things, is an example of disorganization,” Frost says. “Somewhere in that paper pile, there’s a car title or an important insurance form.”

Churning behaviors are often present in people with hoarding disorder, Frost says, making the clutter worse. “This is where a person picks up a piece of paper, sometimes looks at it; then puts it back on the pile. They just churn the pile but don’t get rid of anything.”

Fear of what happens if things are out of sight drives this behavior. “This patient piled all of her clothes on top of her dresser, but the dresser drawers were empty,” Frost says. “She said, ‘If I can’t see the clothes, I’ll forget that I have them, and they’ll be useless.’ Her behavior in churning this pile was to take something and put it on top of the pile so she could see it. That was her cue to remember these things.”

This out-of-sight fear interacts with disorganization. “Most of us categorize things, and then we know where to find them,” Frost says. “But for this woman — and for many people with hoarding disorder — her world is organized visually and spatially. She’s got a pile of things, and she kind of remembers where things are. So, she thinks that the insurance form is about a foot down, in the middle of the pile. She’s created this three-dimensional map in her brain detailing where things are, even though it may not be terribly accurate, and it is certainly inefficient.”

Helping Someone with Hoarding Disorder

Rodriguez advises clinicians to determine patient motivation and readiness before treating hoarding disorder. “Individuals with hoarding disorder have beliefs about and attachments to their items,” she says. “It’s quite painful for them to let go of items. The clinician needs to have a shared agreement with the patient, in which they understand why it’s important to discard objects and what is gained from doing so — not just what is lost.”

Quite often, adult children worry about the health and safety of elderly parents with hoarding disorders and extreme clutter that may impact their living conditions. These individuals may lose the use of almost their entire living space due to clutter piling up inside and outside their house, making them a danger to themselves. If one of them were to have a health crisis, emergency health workers would have difficulty reaching them.

“It’s a really tough nut to crack,” Frost says. “Families often focus on clutter. But focusing on clutter gets in the way of helping the individual to develop the motivation to do something about it.”

Instead, Frost recommends shifting to the individual’s values in life and asking them, “What is it that you can’t do now that you would like to do?” or “What are the most important things you want to do in life?”

“For someone in their late 70s or early 80s, I’ll ask, ‘How much time do you think you have left here, and how do you want to spend it?’ Asking these questions will create a shared goal between the person with the hoarding disorder and the person trying to help them,” Frost says. “Because throwing things out is not a shared goal. If my parents have this problem and I say to them, ‘We need to get rid of a lot of this stuff,’ I’m not sharing their goal.

“But if we discuss what they want to do in their remaining lifetime, I say, ‘I want to help you do that. How best can we do that?’ Then there’s a shared goal that you can develop and work toward.”

Frost cautions that families fracture easily over hoarding issues. Often this is due to family members wanting to help their loved ones but struggling to find a way to do so, especially if the individuals who need help don’t think they have a problem.

“Then people resort to being somewhat coercive and trying to clean or throw things out when the person with the hoarding disorder is not looking. This usually backfires,” Frost says. “You may temporarily change the home’s condition, but you haven’t changed the behavior. And the home will fill up again in a relatively short time.”

Even if you can’t make a dent in a family member’s hoarding behaviors, Frost encourages maintaining the relationship and visiting them in their home. “That doesn’t mean visiting and talking about the clutter, but just visiting and making those visits as pleasant and as positive as you can,” he says. “We know that if someone goes from having visitors to their home to not having visitors come to their home, the clutter worsens.”

Why Do People Hoard? Next Steps

The content for this article was derived, in part, from the ADDitude ADHD Experts webinar titled, “What Is Hoarding vs. ADHD Clutter? Defining Characteristics and Strategies to Help”  [Video Replay & Podcast #417],” with Randy O. Frost, Ph.D., and Carolyn I. Rodriguez, M.D., Ph.D., which was broadcast on August 17, 2022.

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Sources

1 (2017). The Etiology of Hoarding Disorder: A Review. Psychopathology, 50(5), 291–296. doi.org/10.1159/000479235

2 Gledhill, L.J., Bream, V., Drury, H., & Onwumere, J. (2021). Information Processing in Hoarding Disorder: A Systematic Review of the Evidence. Journal of Affective Disorders Reports. doi.org/10.1016/j.jadr.2020.100039