The disorder popularized by reality television is poised to take its place as a unique diagnosis in the forthcoming DSM-V, with functional brain imaging evidence that renders it distinct from OCD.
For half a century, the disorder known as "hoarding" was little more than an urban legend, best personified by the Collyer brothers. In 1947, they were found dead -- trapped and starved -- in a Manhattan apartment amid 140 tons of amassed possessions, their utilities long shut off. When they opened their doors to television cameras three years ago, hoarders secured their place in the public consciousness by reality programs that portrayed their behavior as showcasing the limits of unsettling, unsanitary deviancy. A&E's Hoarders premiered in August 2009, followed soon after by TLC's Hoarding: Buried Alive and Animal Planet's Confessions: Animal Hoarding. As popular interest grew, so, too, did the attention of the psychiatric community.
It's time for hoarding to take its rightful place as a defined mental disorder, codified by the American Psychiatric Association in its forthcoming fifth edition of the Diagnostic and Statistical Manual (DSM), which was last revised in 2000. The APA is currently conducting field trials; if approved, "hoarding disorder" (HD) will become officially diagnosable in May 2013, when the DSM-V is released.
The unofficial diagnostic criteria for HD have been circling the psychiatric community since 1996. The disorder is characterized by:
- The acquisition of and failure to discard a large number of possessions that seem to be useless or of limited values
- Living spaces sufficiently cluttered so as to preclude activities for which those spaces were designed
- Significant distress or impairment in functioning caused by the hoarding
These symptoms of HD are estimated to occur in 2 to 5 percent of the overall population.
In the current DSM, hoarding is referred to only as a symptom of obsessive-compulsive disorder (OCD), a disease more commonly associated with the extremes of organization. The fourth edition of the DSM lists hoarding as a sign of the less serious obsessive-compulsive personality disorder and only implies that it can present in patients with typical OCD. According to a 2010 review published by the APA, though, fewer than five percent of patients with OCD count hoarding as a significant problem, while only 18 percent of people with HD have the extra symptoms necessary for a concurrent diagnosis of OCD.
OCD is best characterized by intrusive thoughts ("obsessions") that lead to compulsive behavior. People with OCD engage in its characteristic behaviors in response to these thoughts: for example, they repeatedly wash their hands because of their irrational fear of germs. It is the fear of germs, not the hand-washing, that is the basis of the disorder.
If hoarding is a true mental disorder, it is so because of its physical reality -- the out-of-control clutter can go so far as to be life-threatening. The build-up of possessions occurs relatively passively, and people with HD only experience distress when faced with the prospect of having to throw or give things away. Otherwise, they are often unperturbed by their situation. It's the people surrounding compulsive hoarders -- their families, their neighbors, their landlords -- who are more likely to be aware of and distressed by the disorder.
* * *
Perhaps the most convincing evidence for hoarding being defined as a unique disorder -- a separate entity from OCD entirely -- comes from current research that suggests it is rooted in a brain dysfunction that occurs during the decision-making process. A new study in the Archives of General Psychiatry was the first to use fMRI scans to look at the brain functioning behind the compulsion to hoard.
The study identified subjects with distinct diagnoses of hoarding and OCD, along with a control group exhibiting neither disorder, and had them bring in papers from their homes that they had not previously sorted. The subjects were shown an image of each item on a computer screen, interspersed with similar objects that they were told belonged to the experimenters. The difference was made as clear as possible: the word "yours" would appear on the screen immediately before they were shown items belonging to them, which were surrounded by a red border. The other items were introduced by the word "ours" and were bordered in black. They were given six seconds to decide the fate of each item.
Whenever patients with HD had to make a decision about one of their possessions, researchers observed that their anterior cingulate cortex and insula, parts of the brain thought to be involved in error-monitoring, risk-assessment, and emotional-based decisions, became hyperactive. At the same time, the patients reported experiencing indeciveness and "just not right" feelings. The same did not occur in the control group or in the group with OCD.
The researchers hypothesize that this hyperactivity in the brains of hoarders creates a condition of outcome uncertainty, rendering the decision-making process nearly impossible. Dr. David Tolin, the lead author of the study and the author of the book Buried in Treasures: Help for Compulsive Acquiring, Saving, and Hoarding, explains that while people with the urge to hoard may claim to be sentimentally attached to their possessions or express a fear of being wasteful, such justifications are likely made after the fact to rationalize their behavior.
While the brains of patients with HD went into overdrive when making decisions that directly affected them, they significantly slowed down in the face of the experimenters' possessions. "This might help us understand why someone could sit in a cluttered or even filthy home and seem not to be bothered by it," said Tolin. "They only get bothered when they have to make a personally relevant decision, and then they get overwhelmed." The cleaning process, which is composed entirely of such decisions, would for them be much more distressing than their present reality.
Presently, HD seems likely to be added to the new edition of the DSM-V as its own, distinct disorder. There is, however, still much to that remains to be understood about it. The APA review cites the need to be certain that people aren't just being diagnosed with HD because they do not conform to societal standards of cleanliness. To that effect, hoarding has been shown to carry objective consequences: "In a survey of health department complaints about hoarding, officers judged hoarding to pose significant health risks and in 6 percent of such cases, hoarding was thought to contribute to the individual's death in a house fire."
Once it is determined that people who exhibit extreme signs of hoarding do require treatment, there remains the trouble of making sure that they get it. People with HD usually deny that they have a problem and do not see any reason to change their behavior. And if 2 to 5 percent of population suddenly falls under this new diagnostic category and thus demands treatment, the review asks, what might be the public health costs?
It is still unclear why the brains of people with HD function differently. A popular conception of hoarding is that it is often observed in people who have had past experiences with extreme poverty or other traumatic events. However, while distressing life events can exacerbate hoarding behavior, says Tolin, "Most people who experience traumatic events (even losing possessions in a fire) do not respond by hoarding, and most hoarders report that the behavior goes back as far as childhood or early adolescence." Further research would still need to be done to isolate a distinct cause of the disorder.
Tolin cautions that just because there might be an identifiable difference in the way that the brains of people with HD function, it doesn't mean they can't be treated or even cured. His team's next step, pending funding from the National Institutes of Health, is to study whether cognitive-behavioral therapy (which is actually a common form of treatment for OCD) can impact and reverse these aspects of hoarders' brain functioning. Neither a diagnosis nor biology is destiny, but both will confirm that patients suffering from HD need much more than a clean-up crew to turn their lives around. Better understanding the disorder as a unique entity from OCD is an important step in getting HD and the people it affects the attention they require.