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What is compulsive hoarding?

Dr. Saxena: Well, compulsive hoarding is a disorder that is marked by extreme inability to throw things away, even if most people would think that those items are useless, and it's usually because the person has excessive fears of losing something valuable or important, and this produces sometimes tremendous clutter that builds up in their home. They've been saving and hanging on to things rather than throwing them away, and that gets to the point where living spaces, work spaces and floor spaces may become unusable.

Are there different levels of it? How do you gauge that?

Dr. Saxena: Compulsive hoarding behavior is just like many other signs or symptoms that exist along a continuum. From very mild saving and hoarding that might be present in lots of people, to the very severe, clinically significant hoarding that really needs treatment.

What kinds of severe forms have you seen?

Dr. Saxena: The most severe cases that we have treated in our treatment program included patients whose entire homes were filled with clutter, sometimes with piles up to three or four feet high with infestations of rats and mold and insects. Really unsafe, unsanitary conditions, such that the house might have to be condemned or cleaning crews had to come in and take all the material out.

How many people suffer from this?

Dr. Saxena: It's not exactly clear how many people suffer from it because there haven't been good enough studies that have really assessed how common it is in the population. The best estimates are somewhere around 1.5 to 2 million in the U.S., but it could be even more than that because it's been significantly under-reported. Many people with compulsive hoarding problems keep it to themselves. They don't tell clinicians. They don't tell family members. They don't want anybody to know because they're ashamed of it. Also, they might not consider it too much of a problem, and they want to hang on to their stuff.

In the worst-case scenario, how can this affect someone's life?

Dr. Saxena: In the most severe scenarios, it can seriously affect people's health. We've seen folks, especially elderly people, who no longer have safe walking conditions in the house, so they fall, and they're likely to injure themselves. Fire Hazards cause the fire department having to be called out to clear out the house. Serious health problems, such as allergies and respiratory problems, due to the dust, mold, and the infestations that had built up. Unsafe environments for younger people including kids, and even pets living in the home where there's feces and other dirty things in the house. That's really at the most severe end. I caution to say that most people with compulsive hoarding problems are not that severe.

What kind of impact can this have psychologically?

Dr. Saxena: Compulsive hoarding can cause a lot of distress, and it can cause a lot of interference with functioning in a number of different rooms, especially social functioning. A common complaint is that they haven't been able to have anyone over to their home, perhaps aside from very close family, for up to 20 years, because their living room is covered with stuff. They're ashamed to have anybody see that. It can also produce lots of problems with getting things done like paying bills on time, losing important documents because they're buried in a pile someplace, not being able to have work done on the home or repairs made. This tends to cause a lot of conflict within families and within relationships.

Tell me a little about your study on PET scans, and what you saw in these patients.

Dr. Saxena: Our research group, first at UCLA and now UC San Diego, has studied the brain abnormalities that may be associated with compulsive hoarding in an effort to characterize the disorder and find out what really is underlying it. In our first study, we found that compulsive hoarding was characterized by some very unique and specific abnormalities of brain function, which were quite different from those typically seen in standard, typical, obsessive-compulsive disorder. One of the questions that we were trying to answer is; is compulsive hoarding just a part of OCD, just one of the symptoms of obsessive-compulsive disorder, or is it a special and different disorder that has a different pattern of brain activity, and might require different treatment approaches? And the evidence that we found in our first study actually supported that conclusion that, in fact, compulsive hoarding seems to be a neurobiologically distinct disorder with a unique pattern of brain abnormalities. The major brain abnormalities that we have been finding are low or abnormally low activity in the area of the brain called the cingulate cortex, and that is an area of the brain that is on the midline, on right or left side of the midline running from the front to the back of the brain, and it's an area that has a number of different functions. One function being it's involved in emotional expression, but primarily, the main area that seems to be involved, and has lower activity in compulsive hoarders, is an area of the cingulate cortex that is involved in focused attention, decision making, making choices out of multiple, competing, potential responses. When you talk to people with compulsive hoarding problems, you find that's exactly what they have trouble with: making decisions, planning, scheduling, and choosing amongst competing potential responses. And in fact, indecisiveness is one of the core features of compulsive hoarding. The brain abnormalities that we found may underlie the marked indecisiveness in people with compulsive hoarding, as well as the other symptoms.

Is that part of the reason they won't get rid of things because it's too hard to make that decision?

Dr. Saxena: Exactly. One of the biggest issues is that they find themselves unable to make a decision about what to keep and what to throw away. It's not just about items, storage and positions, but it could be about what task to do and in what order. Which things they should do today versus tomorrow. It could extend even to what food to buy in the grocery store, which clothes to put on in the morning. Simple things that most of us might take for granted. Making fairly straightforward decisions about what to keep and what to throw away. These folks may have really serious trouble with that, and that may arise from these very specific brain abnormalities.

The drugs that you are studying, the SRIs, what do they do?

Dr. Saxena: Well, serotonin reuptake inhibitors, or SRIs, do not necessarily target that brain area. What they may be doing is treating a variety of anxiety disorders and mood disorders, including compulsive hoarding, indirectly in that they decrease the anxiety and the distress produced by the indecisiveness or the obsessions. So it's not clear that these medications are really a definitive treatment. They're the best we have for treatment of most compulsive disorders. It's not clear that they are really a cure by any means. Nor do most people get some dramatic, robust response, where all their symptoms are wiped out. Rather, what they are probably doing is compensating in helping the person have less anxiety that's produced by their obsessional fears and concerns of making a mistake, making the wrong decision or losing something valuable. Thus, making them more able to resist the compulsive urges and make rational decisions.

In your study, how successful were they in helping the disorder?

Dr. Saxena: The findings of our treatment study were actually somewhat surprising. The early literature had suggested that compulsive hoarding didn't respond very well to standard treatments for OCD, such as serotonin reuptake inhibitors, and we actually found that patients with compulsive hoarding responded virtually identically to people with nonhoarding kinds of OCD. They had identical improvements in overall OCD symptoms, in terms of mood and anxiety symptoms, that were associated, and, in fact, we found that the specific compulsive hoarding symptoms responded just as well as other types of obsessions and compulsions. So it looks like, at least from our study, that SRIs are equally good for compulsive hoarders as they are for other patients with different types of OCD.

What are some of the common drugs to treat OCD?

Dr. Saxena: The common prescribed medications included Prozac or fluoxetine, Paxil or paroxetine, Zoloft or sertraline, Lexapro or escitalopram, Luvox or fluvoxamine, and several others. About six or seven of these medications are the standard front-line treatments for OCD. Our study suggests that they are probably equally good for standard first-line treatment of compulsive hoarding.

Before you started studying these drugs were there other treatments available to patients?

Dr. Saxena: There was a great deal of pessimism about whether they really worked well for compulsive hoarders. There are no medications that are specifically known to be beneficial for compulsive hoarding. In fact, our study was the very first prospective study of a particular type of medication treatment for compulsive hoarding. Nobody's ever really done that before. So far this is the only class of medication that has been shown to be effective in any sort of reasonable standardized trial. We are hoping for more medication trials for treatment of compulsive hoarding and that people will start comparing different classes of medications to find out what really works best.

Are there any non-drug options for patients?

Dr. Saxena: Yes there is non-medication treatment that has been reasonably well and proven to be pretty effective for compulsive hoarding. It's a particular kind of cognitive behavioral therapy, and it's one that was originally developed by Randy Frost, and colleagues. Randy Frost is one of the pioneers in description and understanding of compulsive hoarding, and he and his colleagues developed a particular type of cognitive behavioral therapy that's focused on the specific nature of the problems in compulsive hoarding. Our group at UCLA modified that kind of treatment so that we can do it in a very intensive setting, several days per week, several hours per day, so that we accelerate the response. It uses principals of behavioral therapy such as exposure and response prevention. Exposure and response prevention is the main type of behavioral therapy that is found to be the most effective for OCD. We modify that for treatment of compulsive hoarding, but we add some other things, such as training in decision-making, training in organization and planning skills, time scheduling, and so on. Those things are really necessary to even get a person with compulsive hoarding problems into treatment and to make the exposure and response prevention more effective. This type of behavioral treatment for compulsive hoarding actually works pretty well. What we have seen in our clinical experience, is that the combination of medications and cognitive behavioral therapy is probably the most powerful. In standard kinds of OCD, combining those two forms of treatment is better and superior in terms of its effect. We expect it's going to be true in compulsive hoarding as well. Combined treatment is probably better than just using medications alone or behavioral therapy alone.

Where do you see the treatment focusing on in the future for this disorder?

Dr. Saxena: Our group is planning on studying some other classes of medications.
We're planning on studying a group of medicine called cognitive enhancers, medicines
that have been used for treatment of dementia such as Alzheimer's disease, and these
medicines have been shown to improve focused attention, planning and scheduling
abilities, and memory. They also appear to raise functioning in the cingulate cortex. So,
from a number of different angles, neurobiological as well as in terms of cognitive
symptoms, memory and learning, they're good candidates for improving symptoms in
compulsive hoarding. That's probably the next group of medicines we're going to study
in compulsive hoarders.

How did you get into this field, Dr. Saxena?

Dr. Saxena: I've been interested in OCD for a long time. I ran the OCD research program for about nine or ten years, and it became clear that in treating patients with different kinds of OCD, that there was something unique and different about people with compulsive hoarding. They did have more difficulties in treatment, probably more trouble in standard behavioral therapies than with medications, and they did seem to have a unique pattern of sort of associated features with the severe problems in attention, indecisiveness, procrastination, perfectionism, and so on. A lot of different clinicians and researchers around the world have noticed this, and that has led to the idea that maybe compulsive hoarding is something distinct and unique. We wanted to study and find out through the use of structural brain imaging, functional brain imaging, and neurocognitive testing whether in fact they had a unique pattern of brain structure and function. I got interested in it for a number of different reasons. I think it's a fascinating disease to treat. The patients themselves are very interesting, fascinating and challenging to work with, but if you get a good response, it's very meaningful.

When was compulsive hoarding recognized by the medical community?

Dr. Saxena: Trying to describe compulsive hoarding, much less doing any sort of more specific or focused kind of research, has really been only in the last 10 or 15 years. It all started with Randy Frost, Gail Steketee, and their colleagues in Boston. Our group is the first group that started doing neurobiological research on compulsive hoarding. Now, there are a couple others that are doing it. This understanding that maybe it's a distinct syndrome, the compulsive-hoarding syndrome, really has only arisen in maybe the last five or six years, and I think in a lot of prior studies with OCD patients with compulsive hoarding may have been excluded. They may not have even been recognized as having OCD or a variant of OCD, so they were largely ignored, neither studied nor treated, and it's rare that they even came to mental health or clinical settings. Most often, what you find is that family members, patients, or other authorities like the county mental health system consider that these patients are just lazy, and they fine them or give them other penalties rather than actually getting them into treatment. So the recognition that compulsive hoarding is in fact a neuropsychiatric disorder that has its basis in brain abnormalities and can be treated is very, very new, and this information isn't even widely understood by most people in the broader community. That's why it's so important for news stories like this to get out, to raise public awareness and raise awareness even within the medical and psychiatric community.

Would you like to add anything else about your clinic?

Dr. Saxena: Here at UCSD, we have an obsessive-compulsive disorders clinic, and we treat a fair number of people with compulsive hoarding problems, as well as of course people with other types of OCD and related conditions. My research group has also just started a new brain imaging study comparing compulsive hoarders to other types of OCD to further characterize the brain abnormalities in both brain function and brain structure. And so we're actually offering free treatment and looking at what changes occur in both brain function and brain structure with treatment and we are currently recruiting here at UCSD.

What do these SRI medications tend to do?

Dr. Saxena: Number one, they reduce the anxiety and distress that comes from the obsessional fears. Whether there are obsessional fears about contamination and getting sick from germs, or obsessional fears about losing something valuable and not having something you might need in the future. They actually reduce the frequency and intensity of those obsessions. Secondly, what they do is make it easier for the person to resist the compulsions. In the case of the compulsive hoarder, they make it easier to resist the urge to hang on to things, and they might make it easier for people to tolerate the distress of throwing something away and taking the chance that they might lose something valuable in the future.

Behavioral therapy, just like medications, has effects on brain function. They are both biologically active treatments. When you combine the two kinds of treatments together, you get a better effect. Our group has actually studied the brain mechanisms of action of behavioral therapy. We have a study that will be coming out in publication later in the year, about the brain effects of intensive behavioral therapy for OCD. What's interesting is that one of the main effects in the brain of behavioral therapy seems to raise activity in the cingulate cortex.

How do you know that its compulsive disorder or compulsive hoarding disorder rather than just being lazy?

Dr. Saxena: That's a very important question because many people in the population may have mild hoarding and saving symptoms. Does that mean they have a disorder that needs treatment? No. We have a very specific set of criteria that determines whether somebody has what we would call, clinically significant compulsive hoarding, and it has three major points:

First, the person has to have saved and accumulated a large number of items that appear worthless to others. Second, the clutter is preventing living and work spaces from being usable. For instance, your kitchen is so cluttered that you can't prepare food anymore, or your sofa is so cluttered that nobody can sit down. That's how we know it's more significant clutter. Number three, there has to be significant distress produced by the hoarding and saving clutter, or significant impairment in functioning. Surprisingly enough, kids with OCD actually have a pretty high rate of compulsive hoarding symptoms. It often shows up in missing school assignments, because they are hoarding stuff at home. They may lose their assignments, and the perfectionism blocks them from getting things done like homework. We look for those three criteria -- the large amount of stuff, significant clutter that actually affects your living and work spaces, and number three, impairment or distress -- to make a decision on whether somebody really has a disorder that requires attention.


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