Monday, April 05, 2010

NPR - For Hoarders, The Mess Begins In The Mind

http://media.rd.com/rd/images/rdc/mag0703/hoarding-syndrome-clutter-02-af.jpg

I heard this brief story on NPR's Morning Edition this morning - right after a friend posted a link to it on Facebook. Good info, but not a long enough segment to offer any real information.

But it does give me a reason to repost my review of Dr. Randy Frost's new book, Stuff: Compulsive Hoarding and the Meaning of Things (see below).

Compulsive  hoarder's apartment.
Grap/Wikimedia Commons

Many people with a hoarding anxiety disorder need to take baby steps in order to cope with organization — like cleaning a bit at a time, rather than getting rid of everything at once.

April 5, 2010

We've all seen the TV shows and heard the stories: people who collect so much stuff they can hardly move in their own home. Some even sleep in the car or yard because their homes are so crammed.

Researchers now believe these people have always been hoarders, and that compulsive hoarding is an anxiety disorder that gets worse with time. Frequently, the problem first emerges in childhood or adolescence. But people often aren't "found out" until they're older, often when their homes present fire hazards or neighbors complain. Unfortunately, there aren't any proven treatments to help them.

Therapy Aims To Cut The Hoarding Habit

At the University of California, San Diego Department of Psychiatry, psychologist Catherine Ayers specializes in anxiety disorders and late-life hoarding. She's researching treatments for older hoarders. Right now, she's using a form of behavior therapy and cognitive remediation that focuses on building concrete skills.

Ayers says classic cognitive behavior therapy (CBT) — therapy based on the idea that our thoughts cause our feelings and behaviors — doesn't work well with older adults who hoard. In large part, that's because CBT relies on abstract thinking, which can be difficult for seniors, especially those with certain mental deficits. So in therapy, Ayers focuses on concrete skill building. "We're teaching people how to plan, how to prioritize, how to do basic to-do lists, how to use a calendar, do problem solving," she says.

Armed with these new organizational skills, Ayers hopes her patients will be better able to tackle treatment for their hoarding disorder, which, of course, requires an ability to prioritize, problem solve and, ultimately, make decisions about whether to discard an item.

Ayers practices these organizational skills with patients in therapy over and over again. She helps her patients ask appropriate questions about the practical value and utility of various items. By repeatedly discussing how to sort through items, Ayers says, patients not only learn decision-making skills about items they hoard, they also learn how to tolerate the distress of getting rid of them.

Keeping Memories, Not Things

One of Ayers' patients, Cheryl Sherrell, 65, says one of her biggest challenges was a white, fake fur jacket. It was way too small, and she hadn't worn it for maybe 30 years.

Through the process of questioning why she values it and keeps it, Sherrell realized it was not the coat itself, but the memory of being a young mother with babies and toddlers. "I loved being a mom," she says. "I loved having kids home."

But with her children grown, Sherrell learned how to keep memories without keeping the coat. "I did realize that I can keep those memories with pictures," she says, and the coat was therefore relegated to the discard box. Sherrell is proud of her decision, in large part because it was "her choice."

And "choice" is the operative word here. Sherrell says she couldn't just let someone else organize for her and throw out her stuff. "One of the things that I knew intuitively but didn't really understand until it was taught to me here, is that I have to be in control. I can't just let people come in and take over. My anxiety just goes off the wall," Sherrell says.

'Baby Steps' Toward Organization

Emily Saltz is a geriatric social worker in Boston who had a client who was cited by the health department because her condo was dangerously packed with stuff. The condo cleaned out under legal supervision, but within six months, the condo was filled up again.

"And now, a year later, I've been called in because again the health department is involved," says Saltz. "Condemnation is near, and the apartment is absolutely floor-to-ceiling bags, belongings, clutter, junk, bottles and food. And the client herself is actually sleeping in her car somewhere because she can no longer fit into her unit."

When patients are resistant to treatment, Saltz says there are things that can be done to help. She describes harm reduction techniques, where patients agree to some minor changes such as putting all of their stuff in one room and closing the door, or clearing narrow pathways through the clutter to allow access to the kitchen or the living room couch. "Baby steps," says Saltz, "as opposed to we're getting rid of everything! We're gonna make this place safe again!" Drastic overhauls, she says, just don't work.

Sherrell, for one, says her home now looks "normal." But most importantly, Sherrell says she has her life back. She now feels comfortable welcoming her children and grandchildren to her home.
I posted this review on March 25 of this year.

Review - Stuff: Compulsive Hoarding and the Meaning of Things by Randy Frost & Gail Steketee



Stuff: Compulsive Hoarding and the Meaning of Things
Randy Frost & Gail Steketee
  • Hardcover: 304 pages
  • Publisher: Houghton Mifflin Harcourt (April 20, 2010)
  • ISBN-10: 015101423X
This book wasn't due out until late next month, yet here it is, on sale at Amazon at more than $9 off the cover price.

When this book became available for review (FTC disclosure: I received a free review copy from the publisher), I jumped at the chance to read it. My girlfriend, Jami, was fortunate to study with Dr. Frost at Smith as an undergraduate, and she was in one of the first classes to be exposed to his ground-breaking research into hoarding behavior. At the time, no one else had done any serious studies of this most intriguing variation on obsessive-compulsive disorder (OCD).

A few years later, Frost teamed with Dr. Gail Steketee at Boston University, an expert in OCD, to continue his research into hoarding. She and Frost, along with David F.Tolin, PhD of The Institute of Living on the most recent one, have published the following books prior to Stuff:

Tolin, D.F., Frost, R.O., and Steketee, G. (2007). Buried in Treasures: Help for Compulsive Acquiring, Saving, and Hoarding. Oxford University Press.

Stektee, G. and Frost, R.O., and Steketee, G.S. (2006). Compulsive Hoarding and Acquiring: Therapist Guide. Oxford University Press.

Steketee, G., and Frost, R.O. (2006). Compulsive Hoarding and Acquiring: Workbook. Oxford University Press.
* * * * *
In the last couple of years, A&E has been running a series called Hoarders (you can watch full episodes at the site), bringing this rather obscure disorder more fully into our cultural consciousness. While I have enjoyed the show, it pales in comparison to the work of Frost & Steketee in its inquiry into hoarding. So if you enjoy and are fascinated by the show, then Stuff is exactly what you should be reading - it's written for the lay reader, not the psychological expert (although I am sure clinicians would benefit from this book as well).

When I was growing up, my mother was friends with a woman who hoarded. She had stacks and stacks of old newspapers, magazines, mail, and boxes filled with all forms or junk you can imagine. She also hoarded cats - having as many as 15 or 20 at a time - and her house wreaked of cat shit, and there were flies everywhere. I hated when we went over there (my mom used to check up on her to make sure she was ok).

As a kid, she was just the scary woman with the messy house. Now I know she was a hoarder. We thought she was a rather uncommon person - yet some people estimate that there are 3 million hoarders in the United States (1% of the population). Frost previously estimated as many as 2% to 3% of the population has OCD, and up to a third of those exhibit hoarding behavior (Cohen, 2004), but in this new book, he suggests that between 2-5% of the population exhibits hoarding behavior, 6-15 million people (p. 9). Despite these numbers, as of now (going into the DSM-5), there is not yet a distinct DSM diagnosis for hoarding, but there most likely will be in the coming years, or even in the fifth edition (the committee hasn't decided yet):
Hoarding disorder is currently being considered for inclusion in DSM-5, but task force members haven't yet determined whether it will be in the main manual or in the appendix. According to the proposed inclusion, symptoms of hoarding disorder would include: struggling to part with personal possessions; accumulating objects to the point that they clutter living space, preventing normal use; and suffering social, work or other distress as a result of hoarding behaviors.
* * * * *
Frost & Steketee have been doing some interviews about his book, and in this excerpt from iCareVillage they define compulsive hoarding (NOTE: I'd prefer to quote the book, but my review copy is an Adobe Digital Editions eBook, so I can't cut and paste passages to share with you - but in these quotes from interviews, you can get a sense of the book's ideas):
Compulsive hoarding is the acquisition of and the failure to discard a large number of possessions. Many of us engage in this type of behavior to some extent. We all collect things, we all have a lot more possessions than we probably need. But there are two important distinctions that point to a disorder rather than the more common behavior of collecting.

First, the accumulation is so vast that it clutters living spaces and makes them unusable. For instance, you can’t sit on the couch because it’s full of stuff, as is the kitchen sink, the kitchen table, the bathtub, and so on.

The other component is the level of distress and impairment the hoarding causes. While the person usually enjoys the act of collecting, the distress occurs when they worry about someone seeing the home, or become anxious about having to get rid of any possessions.

The hoarding causes significant impairment. It affects their ability to handle financial affairs, because when your home is filled with disorganized stuff, it’s easy to lose bills and important papers. The home is often unsafe because exits are blocked. There are fire hazards.

Appliances often stay broken. The person with a hoarding problem is afraid to have anyone into the house for repairs because the home’s condition may be reported to authorities. We’ve seen elderly people who have no working refrigerator, no working stove, sometimes no working hot water – sometimes no water at all, which means no working bathroom.
And in a follow-up question, they discuss the possible etiology of hoarding:
We think that people who hoard process information in several unusual ways. A person with a hoarding problem pays attention to the unique detail in objects, such as the shape, the color, the texture, and so forth. For example, take a bottle cap. They might focus on these details and give it value rather than focusing on the fact that it’s a bottle cap without a bottle and therefore has no useful function.

Another feature of information processing that differs in the person that hoards has to do with the amount of information they pay attention to with respect to an object. So they will look at an object and focus on all its unusual details and those details will have meaning. When that person tries to make a decision about that object, they’re faced with many more details to consider than most of us are. Therefore, making any kind of decision requires taking a large amount of information and filtering it down and using it to come to a conclusion – and this is very difficult for them. It affects everything they do, from ordering off a menu to choosing what to wear in the morning. These are decisions they sometimes struggle with for long periods of time.

The other characteristic of people who hoard has to do with the way in which they organize their lives. Most of us organize our lives categorically. We get an electricity bill, we put it the category called bills, and when we need to find it we can go to that location. But people who hoard seem for the most part to organize visually and spatially instead. So if you ask them where their last electricity bill is, they’re likely to tell you that it is halfway down in the middle of the pile in this room, because that’s where they saw it last. Their organization occurs by remembering where objects are in space.

Now, a lot of us organize some things this way. My desk is organized like this – I have piles of things and I remember what’s there because I last saw it there. But if I were to do that for all my possessions, that system would break down quickly.
Here is another explication of the behavior, from an interview posted at Amazon - these questions and responses are very illuminating:

Q: What factors contribute to the development of hoarding?

A: People who hoard often have deficits in the way they process information. For example, they are often highly distractible and show symptoms of attention deficit hyperactivity disorder. These symptoms make is difficult for them to concentrate on a task without being diverted by other things.

Most of us live our lives categorically. We put our possessions into categories and use those organizing systems to store and retrieve them easily. But categorization is difficult for people who hoard. Their lives seem to be organized visually and spatially. The electricity bill might go on the five-foot-high pile of papers in the living room, to keep it in sight as a reminder to pay the bill. Hoarders try to keep life organized by remembering where that bill is located. When they need to find it, they search their memory for the place it was last seen. Instead of relying on a system of categories, where one only has to remember where the entire group of objects is located, each object seems to have its own category. This makes finding things very difficult once a critical mass of possessions has been accumulated.

Q: Do all people who hoard save things for the same reason?

A: No, but there are some general themes. The most frequent motive for hoarding is to avoid wasting things that might have value. Often people who hoard believe that an object may still be usable or of interest or value to someone. Considering whether to discard it leads them to feel guilty about wasting it. "If I save it," reasons the hoarder, "I might not ever need it, but at least I am prepared in case I do."

The second most frequent motive for saving is a fear of losing important information. Many hoarders describe themselves as information junkies who save newspapers, magazines, brochures, and other information-laden papers. They keep stacks of newspapers and magazines so that when they have time, they will be able to read and digest all the useful information they imagine to be there. Each newspaper contains a wealth of opportunities, and discarding it means losing those opportunities. For such people, having the information near at hand seems crucial, whereas knowing that the information also exists on the Internet or in a library does little to help them get rid of their out-of-date papers. Hoarders are often intelligent and curious people for whom the physical presence of information is almost an addiction.

A third motive for saving is that the object has emotional meaning. This takes many forms, including the sentimental association of things with important persons, places, or events, something most people experience as well, just not to the same degree as hoarders. Another frequent form of emotional attachment concerns the incorporation of the item as part of the hoarder's identity--getting rid of it feels like losing part of one's self.

Finally, some people hoard because they appreciate the aesthetic appeal of objects, especially their shape, color, and texture. Many people who hoard describe themselves as artists or craftspeople who save things to further their art. In fact, many are very creative with their hands. Unfortunately, however, having too many supplies gets in the way of living, and the art projects never get done.

Q: Why can't people who hoard control their urges to acquire and save things?

A: Understanding this requires knowing what happens at the moment the person decides to acquire or save something. At the time of acquisition, people who hoard often experience a sort of high or euphoric sensation during which their thoughts center on how wonderful it would be to own the object in front of them. These thoughts are so pleasant that they dominate thinking, crowding out information that might curb the urge to acquire. For instance, hoarders may forget that they don't have the money or the room for the item, or that they already have three or four of the same item.

When faced with the prospect of discarding, hoarders have different thoughts from other people. All their thoughts center on what they will lose (for example, opportunity, information, identity) or how bad they will feel (distress, guilt), while none of the thoughts focus on the benefits of discarding. Saving the item, or putting off the decision, allows them to escape this unpleasant experience. In this way people become conditioned to hoard.
Much of the book is filled with individual stories of people who hoard. The most painful one, for me, was a woman, Bernadette, who had been raped at knife-point and proceeded to turn her apartment into a safe bunker of protection (Chapter 4). This points to one of the seeming causes of hoarding behavior - trauma. However, they found that trauma is more associated with excessive clutter rather than with the inability to discard or excessive acquisition (p. 88).

The most extreme example of hoarding is found in the introduction, where they introduce us to the Collyer brothers, Langley & Homer, who lived in New York City in the first half of the last century. Following their deaths in 1947, it took several hours to find a way into the house, a three-story brownstone. There were only very narrow passages through the house, some of them dead ends, others booby-trapped to keep people out. After Homer was found dead in the house, apparently having died of a heart attack brought on by starvation (he was blind and paralyzed by rheumatoid arthritis, depending on Langley for his survival), a full scale search began for Langely.

As they entered the house through a sky-light in the roof (inspectors concluded the house would collapse if they did not begin at the top and work down), the array of stuff in the house was mind-boggling: rusted bicycle, a complete car, and early x-ray machine, a two-headed fetus, a sawhorse, rusted bed springs, and then there was the vermin - more than 30 feral cats, in addition to rats and roaches. After three weeks, they discovered Langley only ten feet from where Homer had died, having inadvertently triggered one of his own traps and was killed.

By the time they were finished, 14 grand pianos, a Model T Ford, and a full 170 tons of junk was removed from their home.

While the story of the Collyer brothers is so incredible as to be entertaining, the other people discussed in the book inspire compassion and, yes, curiosity.

This attachment to things is the most extreme variation of something we all experience - in fact, the Buddha, more than 2,500 years ago, identified attachment as the source of suffering. We all become attached to ideas, beliefs, people, objects, outcomes, and so many other things. But in hoarders, that attachment goes haywire and becomes extreme. Stuff: Compulsive Hoarding and the Meaning of Things helps us understand a little better how this happens, and in seeing it so amplified in others, we also see our own attachments a little more clearly.

Reference:
Cohen, J. (2004) The dangers of hoarding. USA Today, 19th February, 2004

1 comment:

Jane said...

This is me, and my brother to a slightly lesser extent. Every time I work up the nerve to tackle an area, I'll find something else to do.

Good blog.