By Amy Albright Palmer
Photo: Getty Images/Donna Day
Compulsive hoarders collect things they don’t need or can’t use, until there’s no room left for a normal life.
Holly Graff, a professional organizer, knew she had to take it slowly.
Her client, a compulsive hoarder, was struggling to discard hundreds of candle stubs, blackened and burned down to a quarter of an inch—just a few of the thousands of items she had collected over many years.
Graff was at the woman’s side, nudging her to throw the candles out with little success. They smelled good, her client said, and she was sure she could melt them down and use them again.
The woman (whom Graff did not identify in order to protect her privacy) is one of the many hoarding clients she sees as president of Folsom-based Clutter Control Angels.
“They’re overwhelmed, and they’re often desperate,” Graff says. “They’ve lived with it for so long, but they’re finally seeking help because it’s gotten to be a problem with their relatives, or they can’t even live in their homes any more.”
According to mental health experts, hoarders collect things that most people view as worthless: magazines and junk mail dating back decades, old newspapers, safety pins, plastic bags. Or they collect useful things on such a large scale that they could never make use of them.
Typically, the compulsion to acquire and save takes over, making the hoarder’s home so cluttered that he or she can no longer prepare meals, pay bills on time, clean house or get to appointments.
“In some cases, no one has been inside their house for 20 years,” says Karron Maidment, R.N., a behavior therapist with UCLA’s Obsessive-Compulsive Disorder Intensive Treatment Program.
“On some level, they know that if the rest of the world sees their place, they’d be appalled. But not on the level of ‘I have a problem, I need some help,’” she says.
A New Understanding of Hoarding
Compulsive hoarding has come into sharper focus in the past 15 years, as researchers have begun to study the behavior, look for its neurological roots and try to figure out how best to treat it.
One of the nation’s leading researchers on hoarding is Gail Steketee, a professor of social work and a clinical researcher at Boston University, who has been looking at compulsive hoarding since the early 1990s with Randy Frost, a psychology professor at Smith College in Massachusetts.
Steketee estimates that 1 to 2 percent of the U.S. population suffers from compulsive hoarding syndrome. But she says no one knows for sure because many hoarders keep the behavior hidden and don’t seek treatment.
According to Steketee, hoarding often occurs in conjunction with depression, obsessive-compulsive disorder and generalized anxiety disorder, as well as severe psychiatric disturbances. And, she says, it tends to get worse with time.
Various studies in the past two decades have suggested that compulsive hoarders often begin to hoard in their late teens or early 20s. A 2003 study by Steketee, Frost and others found that in many cases, “mild” hoarding begins around age 18, becomes “moderate” after eight years or so and “extreme” a decade later, around age 35.
According to Steketee, hoarding appears to be slightly more prevalent in women than men. The majority of hoarders participating in research studies are women, and one Sacramento therapist says most of his hoarding clients are women. But, say experts, that could be because women agree to take part in studies and seek treatment at a higher rate than men.
Contrary to the common misconception that hoarders are lazy people who can’t get their acts together, says UCLA’s Maidment, hoarding is a clear neuropsychiatric condition that has roots in poor functioning of certain parts of the brain.
A “Difficult Population”
Tom Zinkle, Ph.D., a psychologist with Kaiser Permanente South Sacramento, has seen hoarders for 30 years. He says some hoard for sentimental reasons, while others do it out of a kind of greed. Still others, experts say, see utility in everything and want to avoid any kind of waste.
“It’s amazing how often there is a battle inside them,” he says. “They want to get rid of something, [but] they will leave and come back and they haven’t done it.
“The neurotic thinking is that if they just hold on to things, life is somehow going to be safe,” he says. “But we never have everything we need. We can never be prepared for everything. And the healthy person trusts the fact that they’ll find some way to cope or get by.”
In his experience, Zinkle says, therapy helps only about 10 to 20 percent of hoarders improve.
“This is a difficult population to work with. They are very often frustrated with themselves, they frustrate their families and they frustrate their therapists,” he says.
Behavior Therapy: One Approach
Steketee and Frost think cognitive behavioral therapy shows the most promise for compulsive hoarders. They have written a therapist’s guide and client workbook called Compulsive Hoarding and Acquiring, due to be published in November by Oxford University Press.
At UCLA’s Neuropsychiatric Institute, Maidment coordinates a six-week treatment program for compulsive hoarders, providing treatment five days a week. She says they have seen a lessening of symptoms in about 35 percent of the hoarders they see.
But James Margolis, M.D., a psychiatrist for Sutter Health, is not convinced that behavior therapy is always the answer.
In the severe cases, such as people who have 50 cats or piles of garbage in their homes, hoarding is “the tip of the iceberg,” he says.
“Most of those people are either schizophrenics or they have personality disorders,” Margolis says. “They are very, very disturbed people, and you really need to deal with the disturbance and not the behavior.”
When Hoarding Gets Critical
Hoarding can reach a critical stage when neighbors begin to complain about housing code violations, rodent infestation or other health concerns, and the hoarder faces fines or, worse, eviction when the home is condemned.
Traditionally, code enforcement officials “red-tag” a home deemed unsafe, make the person move out, hire a contractor to clean it up and bill the person for the costs. While the mess goes away for a time, hoarders suffer, don’t get the help they need and generally revert to the same behavior.
Larry Brooks, a former Sacramento County code enforcement official who now works for the city of West Sacramento, says he learned that not only was the process ineffective, but clearing out homes just “broke the hearts” of the people who hoarded.
Sacramento on the Forefront
Last year, city officials and county adult protective services staff received training in how to deal with compulsive hoarders.
“The Sacramento area is really on the forefront of trying to address this in a more comprehensive and humane way,” says Maidment, who spoke at the forum.
While they have learned more about the syndrome, adult protective services officials and code enforcement officers acknowledge that they don’t have the resources to provide the case management services that many hoarders need. And, they say, many people who hoard don’t want help.
“Even if we had all the resources in the world, you’re dealing with individuals who might not be amenable to seeking help,” says Debra Morrow, program manager for Sacramento County Adult Protective Services.
For those who do want to change, according to Graff and others, family or friends can help by getting them a diagnostic evaluation, driving them to appointments and prodding them to take the small steps needed to start clearing their clutter away.
“In the end, it’s really hands-on assistance that they need,” Graff says.
• One Hoarder's Story
At the age of 37, Julie (not her real name) had a good job and plenty of friends, but she never had anyone over because her apartment was jammed full.
“I didn’t invite friends over. In fact, I didn’t invite anybody over,” she says.
She kept her blinds closed all the time and would panic at the prospect of someone coming over.
Among the things she hoarded: 100 film canisters, 20 empty pill bottles, dozens of empty cardboard boxes and nearly 50 different kinds of 2-cent stamps. She piled 20 leaf bags filled with aluminum cans on her back porch and in her spare shower in the hope of one day taking them to recycling. She even left dirty dishes in the dishwasher for months for fear it would break and someone would have to come fix it.
“It makes no sense whatsoever,” she says, talking about her problem on the condition that she remain anonymous. She was overwhelmed by the items in her home, but she somehow saw a use for everything—if not now, then one day in the future.
When Julie’s mother died, she went into a tailspin. She was diagnosed with depression and found herself unable to open mail or deal with her mother’s belongings, which now filled her home.
“It got to the point where I recognized I was no longer in control,” she says. “I thought to myself, ‘I don’t know how to handle this.’”
Julie joked with her friends about her problem, but on some level, she knew it was getting more and more serious.
Help came from friends at work who noticed she wasn’t remembering details of conversations and was losing track of things at work.
“When I finally let them know what was happening with me, they staged what I like to call an organization intervention, and they found [a professional organizer] for me,” she says.
The organizer and Julie’s friends came every Saturday morning for months to help her get rid of her belongings. Without their help, and the ongoing support of a counselor, she’s not sure she would have made it.
“Quite frankly, I would have killed myself,” she says. “There’s a sense of shame that comes with not being the way that everybody else is.”
• Helping Someone Who Hoards
Experts who treat and work with people who hoard say it’s best to:
• Encourage the person to get a thorough diagnostic evaluation. In some cases, people who hoard also have serious conditions such as Alzheimer’s disease, dementia, schizophrenia or a personality disorder.
• Relay concerns independently to a psychiatrist or psychologist because the patient may not be forthcoming about the problem.
• Consider individual or group therapy by someone with experience in hoarding.
• Help the person get to therapy appointments on time and follow through with treatment. Those who treat hoarders say they are often late and distractible.
• Find a friend, relative, professional organizer or coach to help the patient begin removing his or her things rather than discarding items for the hoarder.
• Offer praise for small steps and know that it will take a long time to get rid of hoarded items.
• Hoarding and the Brain
According to UCLA’s Karron Maidment, R.N., new research shows that hoarding stems from problems with brain functioning.
Brain imaging studies have shown that people who hoard have problems in the anterior and posterior regions of the cingulate gyrus, the part of the brain used in decision making, prioritizing, assigning emotional importance to things and using visual cues.
In hoarders, those areas don’t function as efficiently as they should. As a result, they often struggle with decision making, procrastination, organizing tasks and behavior avoidance.
Maidment says the best approach zeroes in on those four issues, training hoarders to push through those difficulties and accomplish things.
•Are You a Hoarder?
The difference between a messy home and a hoarding problem is the nature of the items collected, whether the clutter takes over living space and how much it interferes with a person’s functioning. Some questions to consider:
• Do you save things that have little value and that most people would consider junk, such as newspapers, mail, receipts, magazines, clothes or worn-out clothing, as opposed to coins or stamps?
• Do you save things you could never consume or use (thousands of safety pins, paper cups or plates, plastic containers, coupons, computer equipment or car parts)?
• Do you spend unusual amounts of time collecting these things?
• Do the items stored in your home interfere with your ability to use areas of the home for their intended purposes (i.e., you can’t take a shower, sleep in your bed, clean your bathroom, use your heater, prepare a meal in the kitchen, etc.)?
• Are you experiencing some level of impairment because the clutter is out of control, such as not being able to pay bills, get to appointments or organize the day?
If you answer yes to these questions, you may need to seek help for hoarding.
• Hoarding Horrors in Sacramento
Many of the most severe hoarding cases in Sacramento County have involved animal hoarding, in which the hoarder collects far more animals than he or she can care for—dozens, in some cases even hundreds of cats, dogs or other companion animals. Other severe cases encountered by local code enforcement officers include:
• a woman whose home became so full that she kept the home but rented an apartment so she would have room to sleep;
• a woman who lost appendages to frostbite after she began sleeping in her yard because there was no room to sleep inside due to hoarded items;
• a hoarder who collected bodily fluids in five-gallon containers;
• a hoarder who bought so many pet mice that they ran freely and bred with wild mice until the home was overrun.
• For More Information
Obsessive Compulsive Foundation: