It makes for fascinating reality television – the downward spiral of people living among mounds of belongings, from candy wrappers and new designer clothes to live and dead animals.
But Dr. Peggy Richter began shedding light on compulsive hoarding long before TV cameras and other media provided a public window into the often shocking and heartbreaking condition.
Dr. Richter, director of the Clinic for OCD and Related Disorders at Sunnybrook, is internationally known for her work in obsessive-compulsive disorder (OCD) and its subtypes, which include hoarding. In fact, Dr. Richter and her team have identified some of the genes that put people at risk of OCD. She's also the only psychiatrist in Toronto specializing in treating hoarders, whose compulsive behaviour can put their and others' health at risk.
Dr. Richter said there have been dramatic changes in the way OCD is perceived and studied since she graduated from the University of Ottawa's medical school and did her residency and fellowship work at the University of Toronto.
"Twenty years ago, when I was specializing in OCD, OCD itself was considered rare," she recalls. "When I wrote my first research grant to look at the genetic basis of OCD, I remember getting a letter of rejection at first, and one of the critiques said there is very little evidence it's genetic. If someone said that now, it would be laughed at."
The seriousness of hoarding was even more underestimated, she adds. "At that time, hoarding was considered just one symptom of OCD and not a very prominent one, and very little was known about it."
OCD is an anxiety disorder involving the brain and behaviour: The Boston-based International OCD Foundation says almost everyone has clutter, but hoarders take it to the extreme, living in filth as their lives are destroyed.
It's estimated five per cent of the population have hoarding tendencies. Behaviours typically surface in the early teens, and the average age of someone seeking treatment is about 50.
"When hoarders look back, they remember by age 13 they were having problems making decisions with what they can part with," says Dr. Richter. "Usually, hoarding is kept in check by family influences; parents say, 'We're cleaning out your room,' or in college, there may be restraints in terms of what they can accumulate. As they age, the problems seem to build through the lifespan."
There are also growing concerns about the personal and public health dangers of hoarding.
For example, a cigarette tossed on junk piled up on a Toronto high-rise apartment's balcony started a fire late last year that left 1,200 people homeless and sent several to hospital. The fire quickly spread because of the excessive amount of material in the apartment.
As well, TV shows such as Hoarding: Buried Alive feature story after story of extreme cases: in one episode, the Humane Society seized 2,000 pet rats from one California homeowner and put them up for adoption.
More often than not, however, hoarding's clinical component – the underlying psychiatric illness – is not addressed in such programs, which usually concentrate on forced cleanouts of homes, Dr. Richter stresses. "These shows do one very positive thing: They raise the visibility and awareness of the illness and lead to the increasing likelihood that family members of people affected by hoarding will come forward and seek help," she says. But "forced cleanouts can be very traumatic – the literature shows 90 per cent of those going through forced cleanouts reaccumulate and fill their homes again within a year."
Dr. Richter and others are working to have hoarding get its own unique psychiatric classification, which, if approved, would be significant for future research, treatment and care.
"Hoarding seems to be somewhat different from other forms of OCD in a number of ways," she says. "Neurological research now suggests … it is associated with change and function in different areas of the brain," and may require more targeted treatment.
"We're even looking at the genetic basis – hoarding seems to run in families, but runs separately from OCD – and recognizing there is a much larger number of people afflicted with hoarding than we ever considered five or 10 years ago, and, in most cases, it doesn't accompany OCD."
Given that, hoarders haven't responded well to the only two clear first-line evidence-based treatments for OCD. There's drug therapy – primarily SSRIs (selective serotonin reuptake inhibitors, a class of antidepressant that also treat other mood-related disorders including anxiety disorders). And there's cognitive behavioural therapy (CBT).
"At this point, the treatments are generally speaking the same, but there's ongoing debate as to whether SSRIs are as effective for primary hoarding as other forms of OCD," Dr. Richter says.
Along with her research work, Dr. Richter's clinic at Sunnybrook provides consultation and assessment services for patients, who are then followed by other psychiatrists and family doctors. As well, Dr. Richter runs short-term CBT groups in 16-week sessions. Hoarders in those groups may not divulge their living circumstances to Dr. Richter for months, or even years.
"It's hard enough for them to talk about the OCD, but it is even more shameful to them to talk about their hoarding. By the time they seek treatment, they have developed insight [that they need help] One can't treat an unknowing patient; a person who has a problem has to be actively engaged."
Dr. Richter aims to "target the specific domains of dysfunction" by examining how they make decisions about discarding, and giving them the skills to help them let go of belongings.
"In my OCD group, they build up to going on shopping trips, walk into dollar stores, and walk out again without allowing themselves to purchase anything. That may seem like an impossible mountain to climb at first."
Despite the increasing public and media interest in hoarding, Dr. Richter doesn't get enough funding to help individuals one on one. Through research grants and some private funding, Dr. Richter can only maintain a part-time staff person who helps her with her research as well as her CBT groups.
However, support for Dr. Richter's services is getting a boost through the Sunnybrook Foundation, which conducts fundraising campaigns to support research, education and equipment initiatives for the hospital.
Sunnybrook will be hosting a speaker series on OCD and hoarding in January 2012. Please check sunnybrook.ca for more details in the new year.
What are the signs? Difficulty getting rid of items; a large amount of clutter in the office, at home, in the car, or in other spaces that makes it difficult to use furniture or move around; losing important items like money or bills in the clutter; feeling overwhelmed by the volume of possessions that have "taken over" the house or workspace; unable to stop taking free items, such as sugar packets from restaurants; buying things because they are a "bargain" or "stock up"; not inviting family, friends or repair workers into the home due to shame or embarrassment. Hoarders tend to live alone and may have a family member with the problem.
How does it differ from collecting? Hoarders seldom display their possessions, which are usually kept in disarray; collectors usually proudly display their belongings and keep them well-organized.
Why can't hoarders get rid of clutter? Difficulty organizing possessions; unusually strong positive feelings (joy, delight) when getting new items; strong negative feelings (guilt, fear, anger) when considering getting rid of items; strong beliefs that items are "valuable" or "useful", even when other people do not want them; feeling responsible for objects and sometimes thinking of inanimate objects as having feelings; denial of a problem even when the clutter or acquiring clearly interferes with a person's life.
What things do people hoard? Mostly common possessions, such as paper (mail, newspapers), books, clothing and containers (boxes, paper and plastic bags); sometimes garbage or rotten food; more rarely animals or human waste products.
Is it caused by poverty or hardship? Hoarders may call themselves "thrifty" or blame their behaviour on having lived through a period of hardship. Research to date has not supported this idea. However, experiencing a traumatic event or serious loss, such as the death of a spouse or parent, may lead to a worsening of hoarding.
How is it treated? Usually with OCD therapies, including SSRIs and cognitive behavioural therapy (CBT). Other strategies: challenging the hoarder's beliefs about the need to keep items; going out without buying or picking up new items; getting rid of clutter, first by practicing with the help of a clinician or coach and then independently; joining a support group or teaming up with a coach to sort and reduce clutter; understanding that relapses can occur; developing a plan to prevent future clutter.