Mike Kyrios' road to a hoarding cure

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I was working at the Royal Melbourne Hospital where I was responsible for psychological services to an inpatient psychiatric ward, a 600 bed general hospital, and a statewide service for anxiety disorders and depression.

I had become particularly interested in helping people with Obsessive-Compulsive Disorder (OCD), and we’d started running treatment groups. It was there that I first met a couple of patients with compulsive hoarding problems who had described their amazing life stories. At the time I assumed compulsive hoarding was a subtype of OCD, and was surprised when it didn’t respond to traditional OCD strategies. Nonetheless, those first patients had made an indelible impression on me.

At around that time I had met Randy Frost & Gail Steketee, other OCD researchers, with whom I became a friend and collaborator. I was spending some time with Randy at Smith College in Northampton, Massachusetts during one of my sabbaticals. One day when Randy and I were driving to his laboratory at Smith College, he asked me whether hoarding was a big problem in Australia. I answered his question very quickly and emphatically with a “No! We have open spaces and our homes are too large for us to have a hoarding problem in Australia!”

Over the next few days, Randy would drive me around the town showing me the telltale signs of houses where hoarding had become a problem - homes that were bulging under the weight of mounds of newspapers and magazines, the verandas that were packed with boxes, the yards that had the shells of two or three old cars, the dilapidated window shutters, and the plastic bags lining the corridors as we sneaked a peak into the house.

I had seen such homes in the inner city suburbs I had grown up in, and in the country towns I had worked in. I began to think that I might be wrong about hoarding in Australia. Maybe it was a bigger problem than I thought?

Randy and I talked about the relationship between OCD and compulsive hoarding, he explained the way he understood the complexity of hoarding problems, and we came up with a few ideas about furthering research into hoarding. Over the years we developed more and more ideas. We developed a measure of thinking styles associated with hoarding, and moved onto trying to understand compulsive buying too.

During another trip to Smith College, I became involved with a project Randy was conducting with some of his students to develop a visual measure of clutter. We packed a student apartment with as much furniture, clothes, newspapers, bric-a-brac, and other “stuff” as we could. We took photographs of the apartment as we took out the “stuff.” These photographs eventually made up the Visual Clutter Scale that we now use in assessing the severity of hoarding and evaluating how people with compulsive hoarding respond to treatment.

On another trip, I spent some time with Gail at the Boston University School of Social Work, and attended a local hoarding taskforce that brought together professionals from different backgrounds to deal with hoarding in the community, especially among the elderly and in public housing. The taskforce would take on difficult cases, as well as help to train council workers, welfare officers, counselors, mental health and other relevant caseworkers on how to best help people with hoarding problems. I began to wonder whether we needed a national taskforce in Australia that could work out a way in which people with hoarding problems could be helped by our complex health, mental health and social service systems.

Over time, my understanding of hoarding and buying problems has grown, as has my understanding of how we can help Australians with such difficulties. We have developed our own research agenda here in Australia, integrating some of the ideas I had learnt from Randy and Gail, but also incorporating our own ideas. Chris Mogan, a local senior psychologist, had also become interested in hoarding, and approached me to supervise his doctorate. At around the same time, I was interviewed on Radio National about my interest in hoarding and received over 200 phone calls, emails or letters from people around Australia who were experiencing hoarding-related difficulties.

The group of people who contacted us constituted the basis of Chris’ doctorate, which at the time, was the most complete study of hoarding anywhere in the world. Contrary to my earlier observation to Randy, we found that hoarding was indeed prevalent in Australia. More importantly, we found confirmation that Randy’s model of hoarding was accurate, as well as finding evidence that compulsive hoarding was a separate problem to that of OCD.

We developed our own approach to treatment, based on manuals developed by Randy and Gail, with whom I continue to collaborate. This is the type of research that had led to calls for compulsive hoarding to be considered a separate condition in the revision of the American Psychiatric Association’s list of mental health conditions. When hoarding is on that list, governments will be forced to provide support through their public services for people with hoarding problems.

By our reckoning, compulsive hoarding affects around 500,000 to 1,000,000 Australians plus their families and communities. I hope that the “Sunday” segment gives people hope that there are people out there who understand the difficulties they face. Appropriate help is becoming more easily available, and can be accessed without the need for people to feel that they are losing control over their homes, their self-esteem, and the respect of those helping them.

Mike Kyrios, Director, Brain & Psychological Sciences Centre, Swinburne University of Technology.