Baltimore scientists search for cause, treatment for hoarding

The table in Jack Samuels' Fells Point office is piled two feet high with books, papers, scientific journals and grant applications.

Samuels' wife likes to tease him that he has a hoarding problem, just like the people he studies. In reality, those stacks of paper might hold a remedy.

Samuels, an associate professor of psychiatry at the Johns Hopkins University's School of Medicine, is the go-to guy nationwide for researchers seeking to understand the biological basis of hoarding — an intense, irrational drive to collect items in vast quantities, coupled with an inability to discard even objects that are worthless or broken.

Samuels established that hoarding occurs in approximately 5 percent of the population — a far larger number than was previously suspected — and linked compulsive hoarding behavior in some patients to chromosome 14.

But as important as Samuels' research is, he's not content to sit inside an academic tower. Instead, he's working with psychologist Gregory Chasson to develop a treatment for hoarding that is effective and affordable.

"People don't realize the severity of the problems that hoarding can cause," Samuels says. "It can be quite debilitating. When someone's whole life is based on hoarding, family relations are strained. Every year, you read about a fire in a home that was so cluttered that firemen couldn't get through the door. Even the neighbors of hoarders can be put at risk."

The behavior can result in extreme situations that grip the public imagination, whether in the well-known story of the Collyer brothers, two wealthy recluses found dead in their Harlem brownstone in 1947, surrounded by 130 tons of waste that they had amassed, or in the current popularity of three reality television shows on cable television.

"Hoarders" on A&E, "Hoarding: Buried Alive" on TLC and Animal Planet's "Confessions: Animal Hoarding" chronicle such crises as people whose homes have become structurally unsound and are in danger of collapsing, people in danger of losing custody of their children because of unsafe living conditions, and people with terminal illnesses prevented by the clutter from getting the in-home care they need.

But even comparatively mild forms of the disorder can wreak havoc.

Liz Bumgarner and her husband had been attending meetings on Wall Street in New York just two days before the Sept. 11 terrorist attacks.

After the couple returned to their home in Vienna, Va., Bumgarner was stricken by a pervasive anxiety. What had begun the previous year as a troublesome tendency to stockpile papers rapidly grew much worse. By the time she sought help from psychologist Elspeth Bell, the lower level of her home, all 2,500 feet of it, had become so crammed with boxes it was nearly unusable.

"My husband refers to it as having to go to his office through the goat trails," says the 67-year-old human rights worker. "The upstairs is pretty livable, but we don't utilize the whole lower part of the house. The piles aren't up to the ceiling, but it isn't pretty. The downstairs is full of stuff: papers, magazines and newspapers in boxes; clothes that had sentimental value or that I don't want to get rid of because I might wear them some day. There are too many dishes, too many vases, too many tablecloths. It just got out of hand."

Currently, hoarding is categorized as a subcategory of obsessive-compulsive disorder, though Samuels thinks that it might soon be considered a related but separate illness.

Thirty percent of those with OCD also hoard. But more than half of those with a pathological collecting habit lack the intrusive thoughts and repetitive rituals that are the defining characteristics of an OCD diagnosis.

"Individuals who have obsessive-compulsive disorder and individuals who hoard are different," Samuels says. "The age of onset is later for hoarders, and the traditional treatment for OCD works poorly for people with hoarding behavior."

In addition, he says, the two diagnoses are associated with different personality traits. People who hoard are preoccupied with details and have difficulty making decisions. On the positive side, many are creative and artistic.

"They look at something that most of us would discard, like a broken bottle, and see its potential," he says.

Samuels is trying to ferret out whether an uncontrollable drive to acquire is inherited, like height or eye color. His research team is interviewing 60 hoarders and approximately 50 of their blood relatives.

He wants to know whether the relatives who don't hoard demonstrate even faint echoes of the problem. In particular, he's interested whether, like hoarders, the relatives also exhibit a malfunction of their so-called "executive functions" — the cognitive and regulatory processes carried out in the brain's anterior cingulate cortex.

For example, a hoarder might have a sibling who lives in a home that's mostly uncluttered. But the brother or sister might have the attention span of a butterfly and be utterly unable to prioritize work assignments.

Samuels hopes to have preliminary research results by the end of the year.

"The public doesn't understand that people who hoard aren't lazy," Samuels says. "They don't lack willpower or discipline. Their minds work differently than the minds of people who don't hoard."

There's plenty of anecdotal evidence to support his theory that uncontrollable collecting runs in families. For instance, a Rockville receptionist has struggled all her life to cope with the hoarding behavior of her mother and only brother. (She declined to be quoted by name to avoid identifying her sibling, who lives nearby.)

"My mother used to collect empty glass jars, and nylon stockings could never be thrown out even if they had a run," she says. "If food was on sale, we had to buy it in bulk, even if it would go bad long before we could eat it. My mother never wanted me to bring friends to the house, because she didn't want anyone to see everything we had."

Her 61-year-old brother's disorder is even more serious. In the 1990s, the woman decided to relocate the man from California to Maryland. Initially, the moving company quoted her a price of $1,500.

"But my brother had boxes and boxes full of outdated electronics magazines and books and obsolete professional journals that he refused to get rid of," she says. "It weighed so much, the move ended up costing $4,000 — and all those boxes went straight to a storage facility, which I also have to pay for.

"He's been threatened with eviction three times. But he doesn't think he has a problem."

When the receptionist passed her 62nd birthday, she became eligible to collect Social Security benefits. But she is her brother's sole means of support, and it will be years before she has the financial means to quit her job.

"I'd like to be able to retire," she says, "but now I figure I will have to work for at least another 10 years. This is so overwhelming. You feel like you're drowning."

Stories like hers inspired Samuels and psychologist Gregory Chasson to look for a way to make a promising therapy available to low-income patients. Researchers Randy Frost and Gail Steketee tweaked a form of cognitive behavioral therapy specifically to fit the needs of hoarders, and the treatment has shown some preliminary success.

"In one study, the patients who completed the treatment showed a 45 percent reduction in their symptoms," says Chasson, a clinician who also teaches psychology at Towson University.

"But it's expensive because it involves visiting going into the patients' homes and confronting their thoughts and anxieties as they de-clutter. Very few insurance companies will pay for it."

He estimated that 40 hours of treatment cost about $7,000 — putting the therapy effectively out of reach of those who need it the most.

The two researchers have submitted a $450,000 grant proposal to the National Institute of Mental Health to create a pilot program that would train nonprofessionals to carry out some of the more scripted, routine aspects of the treatment. These "coaches" could be supervised by clinicians, reducing the cost of the therapy by about 80 percent.

"A lot of people in Maryland with this problem are elderly and living on fixed incomes," Chasson says. "Or they have cognitive difficulties that get in the way of their being able to support themselves. They don't have the resources to pay for therapy-based treatment. We want to help them."

Bumgarner, the human rights worker with the overstuffed first floor, is one of the lucky ones, because she can afford to pay for the time-intensive sessions with Bell necessary to tackle her compulsion.

"In the beginning, Elspeth came to my home and helped me go through clothes and papers," Bumgarner says.

"She was always there to say, 'Is that important? When are you going to do that project? Can someone else use that more effectively?'

"She made me realize that I am not alone. This problem has disrupted my life. But, I can work on it, and gradually overcome it.' "

mary.mccauley@baltsun.com



Resources



Here's one piece of paper that those who hoard should be encouraged to hang onto — a list of resources for those who compulsively collect.

•For a comprehensive overview of the history, symptoms and diagnosis of hoarding, check out the International OCD Foundation's hoarding page at http://www.ocfoundation.org/hoarding.

•For a hands-on self-help guide, many therapists recommend the book "Buried in Treasures: Help for Compulsive Acquiring, Saving, and Hoarding," by David Tolin, Randy Frost and Gail Steketee.

•An online discussion forum offering support for those who care for people with a hoarding disorder can be found at http://www.childrenofhoarders.com.

•A four-session support group for family members coping with a relative who hoards will be held in September and October in Rockville. $60. For information, call Beth Shapiro of the Jewish Social Services Agency at 301-816-2665.

•To read the studies conducted by Dr. Jack Samuels on the biology of hoarding, visit his page at http://www.experts.scival.com/jhu/expertPubs.asp?n=Jack+Samuels&u_id=1965. He was the primary author on hoarding studies conducted in 2007 and 2008.