Hoarding will soon be recognized as mental disorder

One in 20 Americans affected, expert says

KANSAS CITY, Mo. - Inside a small Kansas City-area home, a mom quietly maneuvers along a path intricately etched through mounds of clothing, paperwork, books and boxes.

There are full storage bins and bags stacked to at least waist-high. The circular kitchen table, which sits within feet of the front door, is covered in a pile of paper and cardboard reaching the edge all the way around.

There is an entertainment center with every nook and cranny stuffed with papers and envelopes and fingernail polish. There are cups, tissue boxes and yarn -- lots of yarn.

The floor's dark carpeting is only visible along a narrow, littered path -- and this is just the living room. The kitchen and bedrooms are the same.

If a visitor shows up, he or she won't be let in.

"When I don't know who's at the door, I open it very discretely," Liz*, the homeowner, explained. "It's bad when you have to worry about who's at your door and what they want."

Liz is a hoarder, although it seems tough for her to admit.

She has a teenaged daughter with special needs, and is now trying to clean and get organized because the state has decided her home is unfit for her daughter.

Liz is not alone. According to hoarding experts, one in 20 Americans is a hoarder. That means 15 million people living in the United States are in homes no longer functioning like they should.

"Where hoarding is really defined is when we can walk in and see that people have really lost the ability to manage their possessions," Dr. Lisa Hale, a psychologist specializing in mental disorders, explained.

"A huge misconception is that hoarders just need to pick themselves up by the bootstraps. They're lazy, slovenly, that they just want to live that way," she said.

But Hale explained that it is not the case at all. There are many different scenarios that might lead to hoarding, and even those are still debatable because so little research has been done.

What is known, however, is what can contribute to the issue. According to Hale, 75 percent of hoarders engage in excessive buying, 50 percent excessively acquire free items and 15 percent acknowledge their behavior is irrational.

Hoarding affects a variety of people.

Experts estimate 5 percent of the population are hoarders. That is twice the rate of obsessive compulsive disorder, and four times the rate of bipolar and schizophrenia.

Even with those statistics, hoarding is not recognized as a mental disorder. But that is about to change.

For the first time, the American Psychiatric Association -- the group tasked with updating the manual all mental health professionals use for diagnosing -- is planning to add hoarding as its own category next year. The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders is being published in spring 2013.

Many believe a clinical diagnosis is the first step in the right direction for treatment.

"For years we haven't known how to code and classify it. Reimbursement and research have been difficult. We're hoping with this clear diagnostic category that will move the field forward," Hale said.

A chance for diagnosis and treatment will eventually be partnered with a strategic clean-up. That is where someone like Ann Graves comes in. Graves is a professional organizer who owns We Organize, a Parkville-based, judgment-free organizing company. She said hoarders don't have to tackle their homes alone.

"I've seen all of it from more a chronic disorganization -- people not knowing what to do with things that come into their home ... all the way up to they're dumpster diving and trying to figure out what they can find for free to have in their home," Graves explained.

"We first go in and take a look at what's happening as far as the accumulation of things, and talk to the person about their comfort level with getting rid of things," Graves outlined. "We might pick out a few items in the home and say, 'What do you think if we throw this item out?' Those things may be obvious to me and you as trash and something we can throw away, but not maybe to that person."

The organizers work to get a sense of how the person feels about getting rid of things, and claim they will move as quickly -- or slowly -- as the person needs.

"We work right alongside the homeowner and give them every opportunity to almost literally touch everything before they make a choice about what to do with it," Graves said.

We Organize is often paid by the state. In Kansas, if someone has children or someone over the age of 65 living in the home, and the state determines the home a danger to the person living there, there is grant money available to help pay for the assistance. Graves doesn't know of any program like that in Missouri.

Graves and her company are working with Liz to tackle her home issue. Graves noted she has seen homes in much worse shape than Liz's, and that the home would rate a seven on a one-to-10 scale in terms of severity of hoarding.

But what's important for Liz is that she sees the need for help herself.

"Sometimes too much is too much ... and to seek help is what's really important," Liz said.

To find more information or advice about what to do if someone needs assistance with a hoarding issue, Hale suggests two websites: The Obsessive Compulsive Foundation at OCFoundation.org and the Anxiety and Depression Association of America at ADAA.org.

Hale noted that it's important for friends and family of hoarders to know most hoarders will not call and get the help themselves. It is most often a family member or relative who reports the conditions and seeks the help.

Experts also agree that just cleaning the home will not fix the problem. Hale said with 100 percent certainty that if you just clean the home and do not treat the underlying mental issue causing the hoarding, the home will be back to its original state -- or worse -- within a year to 18 months.

*Liz is a pseudonym for the homeowner, who asked that her real name not be used to protect her privacy.

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