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HDI In The News / September 2013

Hoarding- A Hidden Epidemic Among Us

September 23, 2013


Hoarding - a hidden epidemic among us




Viewers glimpse into the lives of hoarders through television shows like Hoarding: Buried Alive on TLC, but people may be surprised to learn those struggling with the compulsion aren't all figures on TV, and can be as close as your next door neighbor.

Passaic Fire Chief Patrick Trentacost said that the three-alarm fire in December 2011 at a home of a hoarder was one of the most dangerous fires he has seen in his career. The fire started in the basement and spread throughout the house. Trentacost said that there was so much debris that it was difficult to move around the house and climb the stairs. Debris in the front of the house was removed by the fire department from the stairs and entrance way of the home.

Earlier this year, the American Psychiatric Association (APA) recognized hoarding as a disorder, placing it in the Diagnostic and Statistical Manual of Mental Disorders.

"It's a hidden epidemic," said Marcie Cooper, founder of Fair Lawn-based Hoarding Disorder Institute, that trains and educates professionals and volunteers to work with those with the disorder. "We now look at hoarding as a mental health condition. Until now, people thought you can just throw out the contents of the house and that will cure the problem. Without intervention, there is 100 percent reoccurrence, it has to be ongoing and not just a one-time cleanup."

People with hoarding disorder excessively save items that others may view as worthless or as trash. Hoarders have persistent difficulty getting rid of or parting with possessions, leading to clutter that disrupts their ability to use their living or work spaces, according to APA officials.

Between two and three percent of the local population struggle with a hoarding disorder, and reports have shown the tendencies to become a hoarder can start as early as age 13, though it takes decades to develop into a problem, Cooper said.

"In South Bergen County we're seeing so many cases because we live in very dense environments, so it won't take such a long time before a neighbor is made aware," Cooper said. Hoarding can go unnoticed for longer in more sparsely populated areas.

The hidden epidemic

But even in densely populated areas, the conditions can be hidden for years.

Rutherford may get one or two hoarding complaints in any given year, said RutherfordHealth Official Brian O'Keefe. They are referred to the department by the police or a concerned relative and sometimes by the schools if a child is involved.

About five years ago, an elderly female resident, "Karen" was refusing to let relatives in her home for years. Growing worried, the family called the police, who sent an officer to perform a welfare check. At first she wouldn't let the officer into the home, but after they spoke for about a half hour, she eventually let him inside.

"It was unbelievable," O'Keefe said. "Four or five feet of items stacked haphazardly, it almost looked like a garbage dumpster was dumped into the center of the home. You couldn't even tell where the stove or sink or kitchen counter was under all these items piled up."

"Karen" had also been using buckets in the living room in lieu of a bathroom since she couldn't get up and down the stairs, he said. In this case, the Bergen County Community Mental Health System responded and the woman was taken to the hospital for evaluation.

"You see some sad situations," O'Keefe said, recalling another similar incident involving an elderly resident years prior. "It was the same scenario, you couldn't get into the home but when we did get into the home, it was just deplorable with just the amount of items. If nothing leaves the home for 10 years, you can imagine how quickly things can accumulate."

Many hoarders are elderly, as more people are living longer and they are able to live independently with the disorder, Cooper said. Often underlying medical conditions are involved, such as diabetes or pulmonary problems from breathing in dust and mold, or psychiatric problems, like paranoia or anxiety.

O'Keefe said the most recent cases have been predominantly women.

A hallmark of hoarding disorder is spaces dedicated for particular uses, such as a shower or stove, are overcome with clutter and become unusable. In those cases, the resident can go for long periods without bathing and relies on a diet of take-out food, which can cause malnutrition.

"I've been in houses with pizza boxes and chicken buckets up to the ceiling because they can't reach their kitchen," Cooper said.

Another hallmark is the acquisition of items and the inability to discard, causing things to pile up.

A case of excessive hoarding that brought light to the issue in northern New Jersey was the situation surrounding a 68-year old New Milford woman, who died in her apartment and wasn't found until months later in spring 2013, buried under a pile of clothing and garbage. Her living space was so cluttered that family members, police and even county animal control personnel had conducted searches of the apartment, but due to the conditions, she wasn't found until her landlord arrived to clean the place.

The disorder often leads to substantial distress and disability for the afflicted, impairing social, occupational and other important areas of functioning, according to the APA.

Calling in professionals

"It causes unbelievable mental anguish and suffering when you go in and remove what they consider more important than social interaction. Objects take on a whole new meaning due to their emotional attachment," Cooper said. "The worst thing you could possibly do is just go in and throw things away. People need to know that those with hoarding disorders aren't going to voluntarily change."

Volunteers, friends and family can undergo training to handle a cleanout conducive to a hoarder's disorder, and at their discretion, can donate usable items and recycle others, which can sometimes lessen the anxiety of letting things go.

Cooper recalled a tenant at an assisted living facility went on a hunger strike when she learned a social worker cleaned her apartment when her family took her out to lunch. In that case, trust between the facility staff and the tenant had to be regained.

Municipal officials are coming to terms with how to handle cases of hoarding. Cooper recalled a North Jersey municipal judge who kept ordering a house in violation of health codes cleaned within a month, growing frustrated when the order wasn't complied.

"When I spoke with him and explained this was a mental disorder, it was like a light bulb went off," Cooper said. "He realized a more gentle approach was needed."

Hoarders rarely change voluntarily, and are often compelled to address their disorder by way of an evidence notice or health code violation, something that threatens their objects.

Last year, police and Division of Youth and Family Services (DYFS) notified Rutherford of a borough home unfit for habitation.

"A grammar school child was living in a home in town that was just loaded with items, it's almost like anything that had gone into the home in the last 10 years hadn't come out," O'Keefe said. Items typically discarded, like food containers, plastic and paper bags and boxes were not in this home. "They [DYFS] wouldn't let the child live there in those conditions, which was the incentive for the homeowner and her daughter, the mother of the child, to remove the stuff from the interior to make it satisfactory so they could return to the home."

The Lyndhurst Health Department has about three cases a year, said Public Health Nurse/Health Coordinator Sarah Anderson. In most cases, the health inspector, police department and typically the fire inspector step in to intervene.

"We try to make sure the property isn't a threat to the community and they aren't a threat to themselves, especially that they have clear exits from their homes," Anderson said. Family members are usually offered mental health resources following the township's intervention, Anderson added.

There are times when the institute is called in by a municipality or county and discover a home that's completely inhabitable and imminent risk. In those instances, especially if the person is in poor health, the person is removed and given proper medical treatment. From there, a care plan is agreed upon for successfully returning the person to their home or finding an appropriate placement, Cooper explained.

A hoarder's residence may also pose a risk to first responders.

Last February, a fire at a two-family home on High Street in East Rutherford claimed the life of a 77-year old man. Subsequent examinations of the house and fire officials reported it contained an illegal third apartment and was believed to be a hoarding situation, which caused firefighters to become temporarily trapped in the structure during the response. As the firefighters worked to remove the trapped occupant, the team had to stop to attack the fire before continuing since they only had one option of exit.

Excessive hoarding throughout the hallways and first floor rooms made it difficult for the search team," said Assistant Fire Chief John Giancaspro. "This is not just a few bags we're talking about. The floor was covered."

Typically, the agencies that could potentially become involved in an identified hoarding residence are child services, the building department and the fire marshal, O'Keefe explained.

"The building inspector determines occupancy and inhabitability, and there are always concerns about fire safety in the home- extension cords under piles of debris and whether or not the owners have working smoke detectors," O'Keefe said. "Sometimes you can't even get into the basement to get even to the circuit breakers for the electrical panels."

Training and understanding of "heavy content homes," as they're sometimes termed to avoid medical condition disclosure, by public safety is vital, Cooper said. For instance, hoarders don't often sleep in their beds. This detail is imperative for responding firefighters who may need to search for a resident.

"If they know there's a heavy content household, instead of trying to get through the front door, they might try to gain entry through a window," Cooper said. "If we could identify these households before there's an emergency, it would keep first responders from being put in extreme risk."

Some people would rather die in their homes than leave their possessions, Cooper added. This came to light during Hurricane Sandy when recovery teams were turned away from helping residents.

Finding help

Those with the disorder almost never reach out for help. "I think it's very brave of the family members to get involved because they will often meet with resistance from the person who is hoarding," Anderson said.

One of the most difficult things to overcome is the person's own unwillingness to challenge their disorder, and legally, a hoarder largely has the right to live as they choose, said Cooper.

"They have a civil right to live the way they want, unless they're going to be causing imminent harm to themselves or others," Cooper said. Many hoarders have full mental capacity, and therefore, are entitled to live autonomously. "Sometimes we see a conflict between a person's right to live autonomously and the community's right to a safe environment, it can be a public health issue. Most people with a hoarding disorder won't want to change and just want to be left alone. Many times the only way this happens is intervention from a third party."

Authorities and officials need probable cause to enter a home, which comes when someone witnesses the conditions and comes forward.

"These situations are difficult to deal because these are private homes," O'Keefe said. "

The Hoarding Institute counsels family members about the condition and what they can do to help, striking a balance.

In one recent case, the institute received a call from a woman concerning her brother who had been struggling with a hoarding disorder and together they had been working with a social worker for the past two years. Recently the local health board raised a red flag about the conditions of his two-story house- every room had items piled to the ceiling and only a small path to navigate, in addition to blocked entrances.

On the advice of the sister's lawyer, she had attempted to gain guardianship, Cooper said. While well-meaning, this wasn't appropriate because the brother had full mental capacity and was able to make his own decisions. He ultimately was willing, with intervention from a specialist, to grant his sister power of attorney and he transitioned into an assisted living facility.

A method used by the institute is harm reduction, cooperating with the homeowner to make concessions like clearing a three-foot passage through the house to cause the least disruption to the person.

"Clients have accepted that because we're not altering their lifestyle or not threatening them, such as throwing out what they feel are precious to them," Cooper said.

Items can't be arbitrarily thrown away because important items like personal documentation or even money may be lying in the debris, O'Keefe said. This can prove to be a monumental task.

While bringing national attention to the hoarding disorder, Cooper said the TV shows often don't represent the struggle properly.

"I want to get the word out- that's not the way to help people," she said.

A benefit of earning recognition by the APA means insurance companies are more likely to cover the cost of counseling.

An informational session titled Hoarding Behavior: From Clutter to Chaos will be held by the Hoarding Disorder Institute at Behavioral Healthcare in Lyndhurst on Oct. 18 from 9 a.m. until noon. The institute also maintains a resource directory of professionals on its newly revamped website,