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"But my brother had boxes and boxes full of outdated electronics magazines and books and obsolete professional journals that he refused to get rid of," she says.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.' "
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.
