A comprehensive guide to Hoarding OCD

Hoarding OCD is a form of OCD that revolves around keeping (and not throwing away) an unhealthily large amount of items and personal objects which are often either not needed nor have any value.

Hoarding OCD often causes a lot of distress and impairment to the sufferer; it can result in a significant amount of clutter in a person’s living spaces, to the extent that it affects not just the sufferer’s mental health, but even their physical health.

Some data suggests that about 15 to 40% of people diagnosed with OCD have compulsions related to hoarding and saving; however, it’s disabling and severe for only about 5% of them.

This article seeks to provide the reader with helpful and practical information in regards to Hoarding OCD – from its symptoms, to how it is treated, to what causes it and so on.

How many people have Hoarding OCD?

We know from recent studies and meta-analyses that the amount of people who have OCD on a clinical level is about 2-3% of the general population.

Considering the amount of OCD patients who have hoarding-related compulsions is 15-40%, we can therefore estimate that somewhere between 0.3% and 1.2% of people have some form of Hoarding OCD.

However, hoarding disorder (a very similar, yet separate disorder) has a 2-6% prevalence, according to current research.

What causes Hoarding OCD?

Hoarding symptoms often begin in a person’s childhood; about 70% of adults with hoarding behaviors say their symptoms began before the age of 20, with the median age being around age 11 to 15. A person’s hoarding symptoms usually reaches clinical levels on average at age ~35-36, however.

The most popular foundation in psychology for understanding the causes of hoarding behavior (sometimes called the “4-factor model of hoarding etiology“) was proposed by two researchers (Randy O. Frost and Tamara Hartl) in April 1996 in a research paper called “a cognitive-behavioral model of compulsive hoarding”. 26 years later, this model is still being used by psychologists, and is being constantly expanded upon.

According to their proposed explanations, hoarding behaviors are caused by issues to do with information processing in the brain (such as difficulties with memory), flawed beliefs about (and irrational attachments to) one’s possessions, and positive mental responses to hoarding and collecting, which acts as a reinforcement to these behaviors.

Examples of Hoarding OCD

Any of these types of items may be compulsively hoarded by someone who suffers from the disorder:

• old letters and notes

• old bills and receipts

• magazines and newspapers

• old clothes, rags or fabric

• small items such as beads and pins

• expired medication

• cardboard boxes

• old CDs, cassettes and DVDs

• bizarre items (e.g. hair, nails or old/expired food)

What are the differences between Hoarding OCD, Hoarding Disorder and Diogenes syndrome?

• Hoarding OCD is usually egodystonic, which essentially means the sufferer engages in these hoarding behaviors because of intrusive thoughts that they feel are not really “a part of them”. People with Hoarding OCD are much more likely to collect bizarre or unusual items (including expired medications, bills and letters).

• Hoarding Disorder is usually egosyntonic, which means the sufferer feels like hoarding is just a part of their personality; people with HD are also likelier to hoard due to practical or sentimental reasons (in a study from 2008, 100% of 26 patients with HD said that it is their primary reason for hoarding, compared to 77% of patients with Hoarding OCD). There is also a smaller likelihood of the sufferer attempting to resist their hoarding.

• Diogenes syndrome (sometimes called “severe domestic squalor”) is a disorder that usually only occurs with elderly people (often as a result of dementia) and is mostly stereotypic instead of egodystonic nor egosyntonic; in the Handbook of Intellectual Disabilities, a stereotypic behavior is defined as “repetitive, coordinated, seemingly purposeless, rhythmic behaviors that are most often maintained by automatic reinforcement”. Compared to HD and Hoarding OCD patients, people with Diogenes syndrome do not see any sentimental value in the items they hoard.

How can Hoarding OCD be treated?

Perhaps the best treatment for Hoarding OCD is something called ERP (exposure and response prevention). As the name suggests, it involves exposing the patient to what triggers their hoarding behaviors, and then having specific plans/suggestions (usually given by the therapist) regarding how the patient can prevent themselves from engaging in any compulsive behaviors as a result of the trigger.

One example of an ERP session for Hoarding OCD comes from a book called “Understanding OCD” (L. Shapiro) which describes a patient named Lisa, who had a diagnosis of hoarding-related rituals and compulsions specifically to do with coupons. The therapist, by applying the principles of ERP, suggested the following ideas to the patient – the exposure was to go grocery shopping without coupons, and the prevention was reducing their time clipping coupons and buying a single item whenever they saw a 2-for-1 offer for something they want to purchase.

Another form of treatment that’s been shown to be effective for Hoarding Disorder as well as most types of OCD (including Hoarding OCD) is something called CBT (cognitive behavioral therapy). CBT is usually given for 6-8 to 20 sessions, and involves working with a therapist to identify and challenge the thoughts, beliefs and behaviors that contribute to the hoarder’s problems.

There are also different medications that have shown promise specifically for hoarding-related compulsions, such as paroxetine and venlafaxine, which are both antidepressants that are very commonly prescribed for treating different disorders.

What is the UCLA Hoarding Severity Scale (UHSS)?

The UHSS is a scale for measuring the symptoms of Hoarding Disorder as well as Hoarding OCD; it’s also useful to determine whether someone’s OCD is primarily related to hoarding, or if it’s a secondary symptom instead. There are also other tests used to determine hoarding symptom severity, such as the short, 5-item Hoarding Rating Scale (HRS) and the Saving Inventory – Revised (SI-R) test, which has 23 items.

The scale has 10 items, and each question must be answered from a scale of 0 to 4 (0 being “not at all” and 4 being “extreme”).

You can take a look at the original UHSS test (published in 2007) here. If you would like to take the test, or one of the other two tests, consult with your therapist and/or psychiatrist.

How to help a family member with hoarding OCD or hoarding disorder

When someone close to you has a hoarding-related issue, you should not cause them to feel ashamed or aggressively confront them in any way, regardless of whether their hoarding is caused by intrusive thoughts or whether they think that’s just something they genuinely want to do.

You should also, however, not reinforce or encourage any hoarding behaviors; a person with moderate/severe hoarding symptoms requires some sort of intervention (we know that the earlier one gets treated, the likelier it is for them to improve), and the best form of intervention is through suggesting they see a therapist or a psychiatrist. It can be helpful to approach it in this way – if you yourself have experience with a specific person who has treated you, you could try suggesting they see that person.

Talk to other people about Hoarding OCD

You can check our community forum, where you can find other people with similar experiences and share stories, talk about treatments, and so on!