When keeping stuff gets out of hand

You may think the home just needs an extreme makeover, but hoarding is a mental health problem that can be complex and hard to treat.

It's good to keep essentials on hand for the future. But some people take this to an extreme, acquiring and accumulating objects of dubious value (to others) in such large and disorderly quantities that their living space is filled and normal use of the home becomes dangerous or impossible. The problem is known as compulsive hoarding.

Paper is an especially common object of this stockpiling — vast stacks of old newspapers, magazines, books, mail, and lists that may leave no space to cook or sleep comfortably. Worse, people are occasionally injured when papers catch fire or piles of them shift and topple.

In the past, this problem often remained out of sight, partly because compulsive hoarders tend to avoid having visitors and rarely seek help. More recently, television shows such as Hoarders and Hoarding: Buried Alive have increased public awareness by presenting a vivid picture of hoarding to millions of viewers. Mental health professionals are also taking a fresh look at the problem and have proposed making "hoarding disorder" a distinct category in the diagnostic manual used by psychiatrists.

Until now, hoarding has been classified psychiatrically as a symptom affecting up to 20% of people who have obsessive-compulsive disorder (OCD). But more than 80% of hoarders lack the compulsions and repetitive behaviors that characterize OCD, and sometimes hoarding becomes a problem for a person with no psychiatric illness (as currently defined) or psychiatric history.

Professor Gail Steketee, Ph.D., dean at Boston University's School of Social Work, says with respect to hoarding and OCD that "the data are pretty clear that there are substantial differences ... It will be helpful to have a diagnosis with a clear definition [of a hoarding disorder]."

To meet the proposed psychiatric criteria for hoarding disorder — a decision won't be made before 2013 — a person would need to have the following symptoms: persistent difficulty discarding possessions, regardless of their actual value; strong urges to save items and distress when discarding them; an accumulation of possessions such that living areas are no longer usable as intended; impaired functioning in areas such as safety and social interaction because of the hoarding; and the absence of any other medical or mental disorder that would account for the symptoms.

To help diagnose compulsive hoarding, Steketee and colleagues at Yale University School of Medicine and Smith College developed a brief questionnaire called the Hoarding Rating Scale Interview (HRS-I). In a 2010 study, HRS-I showed promise in distinguishing hoarding participants from those with OCD; it was also useful in determining the severity of compulsive hoarding. (To see the questionnaire, go to /hoarding.)

Collector or hoarder?

Many people have collections that occupy a great deal of home space and leisure time, but they differ from hoarders in important ways. For example, they usually enjoy showing off their collections, while hoarders are often embarrassed and do their best to prevent others from seeing what they've accumulated. (For more examples, see "Distinguishing between collectors and hoarders," above.)

What's behind it?

It's unclear where compulsive hoarding comes from; research has shown that it isn't correlated with material or emotional deprivation earlier in life. Psychologists have identified a pattern of cognitive and emotional difficulties that underlie hoarding symptoms. These are as follows:

Indecisiveness and fear of making mistakes. By never choosing to throw anything out and constantly accumulating things "just in case," the hoarder tries to avoid making wrong decisions or having regrets.

Difficulty categorizing. A person who has a hard time sorting objects into categories can find it difficult to decide which drawer something belongs in. For a person who has difficulty distinguishing between valuable and worthless items, keeping old supermarket flyers may seem as sensible as keeping last year's tax return.

Concerns about memory. A hoarder may have unjustified doubts about the reliability of her memory and therefore avoid putting things away for fear of not being able to find them again. Dresser drawers remain empty while clothes pile up on furniture and the floor. Old newspapers and magazines are saved for fear the information in them will be forgotten if they're not kept on hand.

Emotional attachment to objects. A hoarder often comes to see beauty and value in clutter and develops a sentimental attachment to it. This heightens her enthusiasm for acquiring things and reluctance to discard them.

Need for control. The hoarder usually doesn't want anyone else to make decisions about her possessions, so it can be difficult for the family to help.

An escalating problem

Over the years, compulsive hoarding takes an increasing emotional, financial, and sometimes physical toll. The home becomes unsafe. The stove may be piled with junk and the hallways blocked. Accumulated dust and mold may trigger asthma and other allergic reactions. Guests may be forbidden.

"Family members are much more likely to seek help than the hoarder. Hoarders are reluctant to change. And they're usually upset about their hoarding only if people are putting lots of pressure on them to change," says Dr. Michael Jenike, professor of psychiatry at Harvard Medical School and founder of the hoarding clinic at Massachusetts General Hospital.

Family interventions don't always help. The hoarder may resist efforts to get her to hire a professional cleaner. Extra storage units may simply be filled up. Relatives or friends may try to strong-arm a hoarder into getting rid of her stuff, but that tactic often ends disastrously, causing lifelong resentments. "You need someone to negotiate for you," says Jenike. "In some cases, a person isn't going to deal with this until the Board of Health gets involved."

Treating hoarding

What to do? A lot depends on whether the hoarder wants to change. A motivated person with relatively mild symptoms may be able to use a self-help program or work with a professional organizer. But most hoarders need professional therapeutic help. Treatment can be difficult and lengthy and may require several approaches.

First, it's important to find a good physician, mental health professional, or neurologist who can determine whether the hoarder has any underlying or contributing conditions that can be treated along with the hoarding itself. As we noted earlier, OCD is one such condition. There are others. In a 2011 study published in Depression and Anxiety, researchers found that 28% of compulsive hoarders have a form of attention deficit disorder, which can make it difficult to focus long enough to make headway in clutter removal. Half of hoarders suffer from major depression, which saps their energy and makes it difficult for them to do anything about the problem. Hoarding can also result from several other conditions, including schizophrenia, dementia, eating disorders, head injuries, and certain personality disorders.

There are no specific antihoarding medications. Drugs that are used to treat OCD may help, especially selective serotonin reuptake inhibitor (SSRI) antidepressants or tricyclic antidepressants. But compulsive hoarders often don't respond to these medications. Studies show that people with OCD are less likely to respond to SSRIs if hoarding is one of their symptoms. On the other hand, these drugs may be useful for treating the depression and anxiety that often accompany hoarding.

Changing thoughts, behaviors

Traditional cognitive behavioral therapy (CBT) hasn't worked well either, often because patients are reluctant to participate. Therapists have been getting better results with specially designed behavioral therapy programs. In a controlled trial based at Boston University (published in Depression and Anxiety, May 2010), a CBT intervention for hoarding showed substantial benefit. After 26 sessions, three out of four patients were rated as "much" or "very much" improved. The therapy helps hoarders identify and confront distorted thinking or beliefs, bolster their organizational and decision-making skills, and cope with (and lessen) their anxiety about discarding or organizing possessions. Therapists may also make home visits to help with sorting, organizing, and discarding.

"We learned that the therapy works pretty well for many people, but at the end, they aren't symptom-free, and the process is long. Twenty-six sessions was much better than 12 sessions, but 12 sessions beats doing nothing or reading a self-help book. With a book, you're presented with the same skills, but you may not practice them," says Dr. Steketee.

Television shows — particularly those that emphasize cleanup services rather than therapy — can present a distorted picture of the serious work involved. Cleanup alone is almost never a long-term solution.

To find a therapist with experience in the treatment of hoarding, check the treatment provider listing in the hoarding section of the International OCD Foundation Web site (see "Selected resources").