Clearing misconceptions: 5 things to know about hoarding disorder

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It’s the time of the year when many of us are rolling up our sleeves and engaging in an annual “spring cleaning.” While this leads to relief for some, the idea of doing so can cause a lot of stress to someone who has hoarding disorder. Below, Sanjaya Saxena, MD, explains what hoarding disorder is and clears up common misconceptions.

What is hoarding disorder?

Before addressing misconceptions, let’s better understand what hoarding disorder is.

• Persistent difficulty discarding or parting with possessions, regardless of their actual value.
• This difficulty is due to a perceived need to save the items and to distress associated with discarding them.
• The difficulty discarding possessions results in the accumulation of possessions that congest and clutter active living areas and substantially compromises their intended use. If living areas are uncluttered, it is only because of the interventions of third parties (e.g., family members, cleaners, authorities).
• The hoarding causes clinically significant distress or impairment in social, occupational, or other important areas of functioning (including maintaining a safe environment for self and others).
• The hoarding is not attributable to another medical condition (e.g., brain injury, cerebrovascular disease, Prader-Willi syndrome).
• The hoarding is not better explained by the symptoms of another mental disorder (e.g., obsessions in obsessive-compulsive disorder, decreased energy in major depressive disorder, delusions in schizophrenia or another psychotic disorder, cognitive deficits in major neurocognitive disorder, restricted interests in autism spectrum disorder).

Now that we have a good idea of what hoarding disorder is, let's learn more about what it isn't. 

Hoarding disorder isn’t a subtype of OCD

Since 2013 and the publication of DSM-5, hoarding has been classified as its own unique disorder. Because this recognition is so recent, Dr. Saxena says that there are still a lot of clinicians who haven’t been trained on assessing for it.

“They don’t ask if you have clutter in your home or difficulty discarding things,” he says. “The educational component is very important for clinicians, housing authorities, health departments, and fire departments. A lot of these folks get evictions or fines instead of being referred for treatment.”

Hoarding disorder is more common than you think

Hoarding disorder is often thought of as a rare disease, but it may be twice as common as OCD. Studies in the United States and Europe have found a lifetime prevalence of OCD in 2-2.5% of people, while hoarding disorder is found in 3-5%.

“The reason it doesn’t come up as much is that clinicians aren’t asking, and the people with it are embarrassed or ashamed, so they don’t mention it” Dr. Saxena says. “Most don’t realize it’s a treatable disorder. That’s one of the reasons to increase awareness because the overwhelming majority of people with hoarding disorder never receive clinical care.”

Throwing away someone’s clutter won’t treat their hoarding

Cleaning up someone’s space will not magically cure them of their disorder. Instead, Dr. Saxena says family members or friends can let the person know that help is available.

“Ask if they do want to get help for the problem, beyond a professional organizer coming in and cleaning out the house,” he says. “Get help for the core problem. The vast majority of people that I’ve seen with hoarding disorder describe feeling overwhelmed. People don’t want to feel that way.”

Effective treatment for hoarding disorder includes cognitive-behavioral therapy (CBT) that utilizes exposure and response prevention (ERP), training in organizational and decision-making skills, control of excessive acquisition, and medication.

Cleaning is only a part of treatment and should be done hand-in-hand with ERP. Similar to OCD, exposures follow a hierarchy where you start with something easy to throw away like old clothes before moving onto something that might be more difficult to let go of, like old documents. Cleaning is done by focusing on one pile at a time, in one room at a time.

Hoarding is more than what you see on TV

Like other mental health disorders, symptoms for hoarding are on a continuum, and most cases are not the extremes that are seen on TV. Dr. Saxena says that moderate levels of hoarding are much more common. In these cases, significant clutter might occupy a quarter or half of a home. The degree of dysfunction and impairment varies as well.

“Some people with hoarding disorder can discard things more easily, while the most severe cases might have difficulty discarding anything,” he says. “A lot of people have what we might consider subclinical levels of symptoms. They have excessive saving, excessive acquisition, difficulty discarding, and clutter, but they might not have significant distress or impairment in functioning that requires treatment.”

The earliest symptoms for hoarding disorder are usually general indecisiveness and difficulty knowing what to discard, and typically begin around age 12 to 13. During the early years, a teen’s clutter is often cleaned up by their parents. Excessive acquisition of items starts later in life, after people have an income, but it usually includes acquiring free items.

Hoarding disorder isn’t harmless

People with severe hoarding disorder experience risks of falls, infestations, mold, and fire. But even those with a moderate level of hoarding experience social impairment and feel isolated.

“People are embarrassed and will often stop letting people into the home,” Dr. Saxena says. “They won’t allow repair people to come in so lights, stoves, and plumbing can become broken or dangerous.”

Dr. Saxena continues, saying that in many cases, people live in fear of being evicted, marriages break up, and people become estranged from their family.

Rogers can help

If you or a family member is struggling with mental health or addiction, help is available. To schedule a free, confidential screening:

• Call 800-767-4411
• Use our online form.