Help for hoarding disorder

If you know someone with a very cluttered home, do they keep even broken items instead of throwing them away? Was the last time they pared the clutter down and made a trip to Goodwill many years ago? Then it is possible you know someone with an actual clinical disorder — hoarding. BeWell spoke with Carolyn Rodriguez, MD, PhD, assistant professor of psychiatry and behavioral sciences at Stanford School of Medicine, to better understand the underlying brain mechanisms involved in hoarding behaviors and how these differ from normal collecting behavior.

What exactly is “hoarding”? How do we distinguish someone who is a “collector” from someone who has “hoarding disorder”?

A person with a hoarding disorder has extreme difficulty parting with possessions, so much so that the amount of clutter in their home limits the use of living spaces. In other words, a person can’t cook in a kitchen or can’t watch TV in the living room of an individual who has hoarding disorder. The clutter is such that it poses a safety and health risk, such as pest infestation. A defining characteristic of the disorder is that it causes significant distress in the lives not only of the individual who has the condition, but also the lives of his/her family members and even the neighbors. Daily activities are significantly impaired.

The main way to distinguish “hoarding” from “collecting” is that collecting is a pleasurable activity, while individuals with hoarding disorder are distressed by it. Collectors are proud of their possessions and enjoy putting them on display. In contrast, individuals who hoard tend to keep to themselves. In addition, collectors tend to be organized, while hoarders are very disorganized. For example, an individual with hoarding disorder might keep a spatula in the bedroom, rather than in the kitchen.

How common is hoarding?

Hoarding disorder affects 2-6% of individuals in the U.S., which translates to 6-15 million Americans. The prevalence of hoarding worldwide is probably comparable, although in certain countries those with hoarding disorder are thought of and treated differently. For example, Chinese artist Song Dong had a mother whose life was negatively impacted by extreme clutter. In his unique case, he was able to convince his mother to allow him to take the entire contents of his childhood home and transform them into one massive art instillation made up of 10,000 worn, broken and unused objects, which, at one point, was displayed in the Museum of Modern Art in New York.

When was hoarding first recognized as a clinical disorder?

Hoarding wasn’t recognized as a disorder until fairly recently. There was little research on the disorder until Dr. Robert Frost published the first cognitive-behavioral model of hoarding in 1996. He described it as being characterized by excessive acquisition and clutter. Originally, hoarding disorder was thought to be part of Obsessive Compulsive Disorder (OCD), but the latest research has found that the symptoms and neural processes associated with hoarding are distinct from OCD. In 2013, the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) — which contains all officially recognized psychiatric disorders — recognized hoarding as a distinct disorder. Very recently, there has been a surge in media coverage of hoarding. 

Speaking of media coverage, today there are shows like Hoarders and Hoarding: Buried Alive. Are these shows good or bad for those suffering from the disorder?

The short answer: these TV shows are both good and bad. The shows do increase awareness about the disease and how it affects not only the individual with hoarding disorder but their loved ones, and the shows also help people who are hoarding (or living with hoarding) understand that they are not alone. That said, there is a downside to these programs. The programs can’t capture all the time and effort that it takes to deliver an effective treatment. Just as you can’t cure an alcoholic by taking away his liquor, you can’t quickly cure an individual with hoarding disorder by forcing him to throw out his belongings. He can just go buy more. Here in America, we can’t force someone to remove their clutter — unless it’s a health hazard.

What causes hoarding?

We don’t know the cause. Genetics likely plays a role, but it’s not the full answer. Environment plays a role, as well. We do know that hoarding disorder runs in families, and that it is more common in people who have a family member who suffers from hoarding disorder.

How does hoarding begin and progress?

Initial symptoms start in childhood and adolescence. Symptoms usually start around age 13 and are typically mild and then progress over the years. Symptoms become more severe when adults are in their 50s. Symptoms in both adolescents and adults include: difficulty letting go of things, clutter that makes life difficult, spending considerable time moving items from one pile to another without letting go, spending time collecting free things, and sleeping with items on their beds. This is not to say that you should be worried that your adolescents are hoarders if they have messy rooms — which is typical adolescent behavior!

How can a family member help a hoarder and handle living with one?

It is very difficult to watch a family member struggle with clutter. Family members want to help, but they often feel helpless and overwhelmed. The first step is to get information in order to become educated about what the disorder entails. The second step is to ask the loved one if they are having problems with clutter and, if so, what is making it so difficult to part with some items. Difficulty with letting go typically falls into one of three categories: the individual may have an emotional attachment to an object, the object might have an aesthetic appeal, or the hoarder may feel that the object may someday prove useful. Highly creative hoarders can find a million uses for an item. However, most individuals with hoarding disorder do not follow through with actually making something with the items, so that in the end the items just contribute to the clutter.

The third step for loved ones to take is the most challenging. They should try to reach out to the hoarding individual in a non-judgmental way. Acting without judgment can really shift the dynamic of the interaction, as individuals with hoarding disorder are used to people not understanding them. Helping the individual recognize one area where the hoarding behavior negatively impacts quality of life can become a good starting point for making changes.

The effects of hoarding on family members can be even more pronounced in the Bay Area, given that most of us live in smaller houses with no basements. Family members need to have their own support system, with people to talk to about this topic. They might want to join a support group, or see a personal therapist. There might come a time when they have to ask themselves: “Is it worth living in this kind of environment? Should I move out?” A family counselor can help them answer those tough questions.

What are the treatments? Are they effective?

Hoarding disorder can be treated and someone who has the condition can hope to return to a normal life. That said, these individuals will face challenges throughout their lives, and it is important for them to stay in treatment. There are many different treatment options, from reading self-help books or joining a support group to individual talk therapy or medications. Cognitive behavioral therapy (CBT), which can be done on an individual basis or in groups, has also proven effective.

Currently, I am working on a project called “Building Community-Academic Partnerships for Evidence-Based Treatment of Hoarding Disorder” (funded by a grant from the Department of Psychiatry and Behavioral Sciences) where we will lead a workshop to train community health educators to lead skills-based support groups for individuals with hoarding disorder. The health educators will be trained to lead those struggling with clutter through the book, Buried in Treasures: Help for Compulsive Acquiring, Saving, and Hoarding. Study participants will get skills-based training and enjoy a non-judgmental environment as they work on their hoarding issues. 
… any final thoughts?

There are great resources out there for individuals with hoarding disorder and their loved ones.
Check out: International OCD Foundation -- Hoarding Center and Anxiety and Depression Association of America.

People should also feel free to contact our clinic for treatment and to see what research studies are underway: email or call (650) 723-4095. See also: Carolyn Rodriguez, MD, PhD, faculty page.