Defining Hoarding: An Explainer

7-minute read time.

I think it’s time to define hoarding since I have talked about it so much already. There is a lot of research out there, but there is still a lot to be known, so if you would like to add something to this page or see a necessary correction, please leave a comment!

DSM-5 Definition

According to the DSM-5, hoarding disorder can be defined as:

• “Persistent difficulty discarding or parting with possessions, regardless of their actual value.” (11)
  • This difficulty originates from a perceived need to hold on to their items and the mental distress they feel when getting rid of them.
  • The difficulty of getting rid of these items results in an accumulation that clutters living spaces and compromises their integrity and function.
    • If these spaces are cleaned, it is only because of an intervening force, such as family members, cleaners, or authorities.
  • Hoarding causes “clinically significant distress or impairment in social, occupational, or other important areas of functioning (including maintaining a safe environment safe for oneself or others).” (11)

The DSM-5 notes that hoarding disorder is not caused by another medical condition, like brain injury, cerebrovascular disease, or Prader-Willi syndrome, and is not better explained by the symptoms of other mental disorders, such as:

• “Obsessions in obsessive-compulsive disorder;
• Decreased energy in major depressive disorder;
• Delusions in schizophrenia or another psychotic disorder;
• Cognitive defects in major neurocognitive disorder;
• Restricted interests in autism spectrum disorder;” (11)

The DSM-5 also highlights that a person’s hoarding disorder can have unique specifications, including excessive acquisition, good or fair insight, poor insight, and absent insight/delusional beliefs.

• “With excessive acquisition: If difficulty discarding possessions is accompanied by excessive acquisition of items that are not needed or for which there is no available space. (Approximately 80 to 90 percent of individuals with hoarding disorder display this trait.)” (11)
  • The person can’t get rid of things and continues to get more.
• “With good or fair insight: The individual recognizes that hoarding-related beliefs and behaviors (pertaining to difficulty discarding items, clutter, or excessive acquisition) are problematic.” (11)
  • The person knows they’re a hoarder and knows it is a problem.
• “With poor insight: The individual is mostly convinced that hoarding-related beliefs and behaviors (pertaining to difficulty discarding items, clutter, or excessive acquisition) are not problematic despite evidence to the contrary.” (11)
  • The person knows they’re a hoarder but mostly doesn’t think it’s a problem.
• “With absent insight/delusional beliefs: The individual is completely convinced that hoarding-related beliefs and behaviors (pertaining to difficulty discarding items, clutter, or excessive acquisition) are not problematic despite evidence to the contrary.” (11)
  • The person may or may not think they are hoarders and don’t think it’s a problem at all.

Definition, according to children of hoarders

• “An extreme connection to a lot of different objects. And an inability to part with stuff and putting too much emotional weight and connection to things that most people would find meaningless.” – Emma
• “An unwillingness to get rid of items that are no longer useful and that interfere with your life and affect your living conditions.” – TN
• “I define hoarding as people who compulsively acquire things and can’t get rid of things, even when it doesn’t make any sense to keep them, and they keep things that have no purpose. They can’t stop collecting and keeping things.” – Anonymous
• “Hoarding is the impulsive desire to obtain material goods in order to distract yourself from what you don’t have.” – Matthew P.

Stages/Levels

The National Study on Compulsive Disorganization developed a scale to define varying hoarding levels, including five progressive stages (10).

• Level 1: Least severe, few indicators
• Level 2: Noticeable clutter which causes embarrassment
• Level 3: Odors, poor hygiene, narrowed hallways
• Level 4: Structural damage, sewage problems, unusable rooms
• Level 5: Fire hazards, no electricity or running water, human feces

This visual, even though I noticed a typo (LOL), from Hoarders911 perfectly explains the scale:

Forms of Hoarding

Hoarding is not the same thing as collecting. Most hoarders do not acquire things in an organized and intentional way (although some may think they do).

There are various forms of hoarding, including but not limited to animal hoarding, food hoarding, media or paper hoarding, garbage and trash hoarding, sentimental hoarding, shopper hoarding, compulsive shoppers, and digital hoarding. One of the sources in my interviews mentioned that they also consider “knowledge hoarding,” the need to collect books, magazines, sheet music, etc, as a part of the disorder. My mother is unique in her hoarding in that she possesses “hobby hoarding,” as I call it, which I define as hoarding items that she is interested in as a hobby for herself or someone in her community. For example, my brother learned to crochet, and my mom bought him 20+ bundles of yarn.

Causes

The cause of hoarding is currently unknown. Research is still limited, but there are a few noticeable patterns, including that hoarding is more common in people with family members who also hoarded or experienced a stressful or traumatic event. Hoarding appears relatively early in life and follows a chronic course as the person ages. Interestingly, most studies report the onset at 15 to 19 years old.

Many people with hoarding disorder have other mental health disorders, such as ” depression, anxiety disorders, attention-deficit/hyperactivity disorder or alcohol use disorder,” according to psychiatry.org (2). OCD and PTSD are also common in hoarders. With age, people’s hoarding might get worse with the onset of dementia or schizophrenia. According to Mass General Brigham McLean’s website, “75% of people with the condition also have a mood or anxiety disorder,” (9).

Treatment

I won’t go too much into the treatment of hoarding because I will dedicate another post to it. If you want a bit of information on treatment now, see the “Treatment” section of https://www.psychiatry.org/patients-families/hoarding-disorder/what-is-hoarding-disorder#:~:text=People%20with%20hoarding%20disorder%20have,diagnoses%2C%20especially%20anxiety%20and%20depression.

“While there’s no cure for hoarding disorder, it can be treated, and people can return to a normal life. The main treatment is cognitive behavioral therapy,” according to the Mayo Clinic (8).

Resources:

1. American Psychiatric Association, 2022. Diagnostic and Statistical Manual of Mental Disorders, 5th Edition, Text Revision. American Psychiatric Association Publishing, Arlington, VA.
2. American Psychiatric Association. (n.d.). What is hoarding disorder? Retrieved from https://www.psychiatry.org/patients-families/hoarding-disorder/what-is-hoarding-disorder
3. Postlethwaite, A., Kellett, S., Mataix-Cols, D., 2019. Prevalence of Hoarding Disorder: A systematic review and meta-analysis. J Affect Disord 256, 309-316.
4. Nordsletten, A.E., Fernández de la Cruz, L., Pertusa, A., Reichenberg, A., Hatch, S.L., Mataix-Cols, D., 2013. The Structured Interview for Hoarding Disorder (SIHD): Development, usage and further validation. Journal of Obsessive Compulsive and Related Disorders 2(3), 346-350.
5. Frost, R., Steketee, G., Tolin, D., Renaud, S., 2008. Development and validation of the Clutter Image Rating. Journal of Psychopathology and Behavioral Assessment 30(3), 193-203..
6. Frost, R.O., Steketee, G., Grisham, J., 2004. Measurement of compulsive hoarding: Saving Inventory-Revised. Behav Res Ther 42(10), 1163-1182.
7. Hoarders911. (n.d.). 5 stages of hoarding disorder. Retrieved from https://hoarders911.com/5-stages-of-hoarding-disorder/
8. Mayo Clinic. (n.d.). Hoarding disorder: Diagnosis & treatment. Retrieved November 21, 2024, from https://www.mayoclinic.org/diseases-conditions/hoarding-disorder/diagnosis-treatment/drc-20356062
9. McLean Hospital. (n.d.). Everything You Need To Know About Hoarding Disorder. Retrieved from https://www.mcleanhospital.org/essential/hoarding-disorder
10. Spaulding Decon. “Understanding the Different Types of Hoarding.” Spaulding Decon, n.d., https://www.spauldingdecon.com/blog/hoarding-types. Accessed 21 Nov. 2024.
11. Substance Abuse and Mental Health Services Administration. Impact of the DSM-IV to DSM-5 Changes on the National Survey on Drug Use and Health [Internet]. Rockville (MD): Substance Abuse and Mental Health Services Administration (US); 2016 Jun. Table 3.29, DSM-5 Hoarding Disorder. Available from: https://www.ncbi.nlm.nih.gov/books/NBK519704/table/ch3.t29/
12. Tolin, D.F., Frost, R.O., Steketee, G., 2010. A brief interview for assessing compulsive hoarding: The Hoarding Rating Scale-Interview. Psychiatry Res 178(1), 147-152.