Regular viewers of hoarding reality shows are used to being stunned by someone's clutter. But behind the sensationalistic stories of rooms buried in trash, kitchens filled with rotting food, and yards overrun by goats are people suffering from a serious mental illness –hoarding–that for many years was misdiagnosed.
The upcoming fifth version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) aims to change that. The highly influential DSM-5 will classify hoarding as a distinct disorder within the chapter about obsessive-compulsive and related disorders. Before the DSM-5, hoarding could be misdiagnosed as a form of obsessive-compulsive disorder.
The classification change isn’t just symbolic. The American Psychiatric Association believes it will have a real effect in terms of the diagnosis and treatment of people who have a persistent difficulty ridding themselves of possessions, regardless of their value.
"The history of [misdiagnosing]," said Dr. Jeff Szymanski of the International OCD Foundation in a phone interview with Yahoo News, "is that hoarding possessions, keeping lots of possessions was considered a compulsive behavior early on, so it was put under the rubric of obsessive compulsive disorder. So if you were asking questions about OCD, you would say, 'Do you compulsively hoard lots of objects?' But that was really the only question you ended up asking. It's a key question, but it's really the only question you're asking.
"As people were being treated for OCD and they were working with this subgroup that had hoarding as their OCD symptom, they [mental health providers] started to recognize that, 'Wait a minute, these actually don't seem like they're the same group.'"
Over the past 20 years, researchers working on this have found that OCD and hoarding are quite different. “There are brain imaging scans that compare people with OCD to people that have hoarding disorder,” said Dr. Szymanski. "And even in brain scans, they're showing some differences."
Dr. Sanjaya Saxena, Director of the University of California San Diego's Obsessive-Compulsive Disorders Program and unofficial advisor in the creation of the DSM-5, said in a phone interview with Yahoo News, "Until recently, the general public and certainly the medical community and maybe even the majority of the mental health community did not understand that this was a neuropsychiatric disorder that was treatable, that was describable, that was consistent. And it wasn't a part of something else, and it was a condition that needed clinical attention."
What will a change in DSM-5 mean for people who suffer from hoarding? Does a reclassification mean that much? Dr. Saxena believes it does. Hoarding, he said, "will be listed, clinicians will have some awareness of it, and people will start screening for it. And patients will realize it’s a problem that they can get treated."
Dr. Saxena also hopes that authorities will start to recognize compulsive hoarding as a psychiatric disorder with the new DSM-5. "The reality shows have raised awareness, but they tend to sensationalize the patients, and they rarely talk about treatment.”
The DSM-5’s reclassification reflects a shift in how mental health professionals think about hoarding. For many years, people who suffered from hoarding were believed to have a social problem or were simply lazy, according to Dr. Saxena. People would be evicted from their homes but were rarely referred for treatment, because nobody recognized hoarding as a disorder.
"The big change," Dr. Saxena said, "will be an official recognition of hoarding as an important neuropsychic disorder that will increase screening, increase detection and diagnosis, and refer patients in for treatment."
In other words, hoarding's new classification in DSM-5 means doctors and mental health professionals are going to be asking different questions. "It can become kind of a big deal," Dr. Szymanski said. "The questions we ask determine the diagnosis. The diagnosis determines the treatment."
There are other implications in hoarding's reclassification, too. Dr. Saxena hopes it results in more people seeking treatment and receiving a proper diagnosis. "It will also drive the [mental health] field to educate itself and train all the incoming trainees and practicing clinicians of all ages," Dr. Saxena said. "It's already inspiring pharmaceutical companies to think about doing trials specifically for hoarding disorder. They never have before."
Dr. Szymanski said the new questions that determine diagnosis will help mental health professionals develop a better treatment plan. "There are many people with hoarding disorder that if we asked just very straightforward OCD questions, we might not even pick up on hoarding. They might have OCD and we might be treating the OCD but we never really ask the right questions about the hoarding disorder so it never gets treated."
The new classification will also mean a big change in the way hoarding is studied. "Researchers had been studying hoarding disorder for 20 years, but it was a little all over the place. This clarifies the questions and allows us to look more directly at developing better treatments for this population because we're deciding they're a different group," said Dr. Szymanski.
A new classification also brings with it new recognition for those who suffer from hoarding problems. "They aren't pack rats. This is a debilitating disorder," said Dr. Szymanski, "that is inhibiting people from living anywhere close to a full life. So this brings a certain kind of weight to it in a way that I think was not there before."
Everyone's insurance differs, of course, but hoarding's reclassification could mean those with mental health insurance who seek treatment may be better reimbursed.
"If the therapist did not ask the right questions and you don't end up with the diagnosis, then your insurance doesn't pay for it. And now, if you are diagnosed with hoarding disorder, your insurance will cover it if your insurance does cover mental health treatment," said Dr. Szymanski. “With more detailed questions you can follow up [on], people are more likely to get more accurate diagnosis and treatment. Not only will insurance cover, but you're also more likely to get insurance for treatment that helps.”