Psychologists in Sydney are developing new ways to treat hoarding disorder based on a unique, consumer-driven approach.
After a 3-year pilot program, senior clinical psychologist and coordinator of Nepean Anxiety Disorders clinic, Denise Milicevic, has set out to create stronger and more well rounded treatment for hoarding disorder.
“With lots of these programs that are out there, collaboration with the consumer can be quite limited or non-existent. But with hoarding disorder, it is something that I think is really important because … it’s an area that’s still developing,” she said.
Dr Milicevic said that people with hoarding difficulties often tell her that their families do not know how to support them. Realising that this advice is lacking from current treatment programs, Dr Milicevic is developing a family intervention program for people wanting assistance with supporting and understanding their relative with hoarding disorder.
“Currently that type of program doesn’t exist. So we will probably be the first in the state, maybe even internationally, that will be providing a program like that,” she said.
“I think that will be a really interesting piece of work to come.”
Craig, now 54, lives in the US and recently joined the ‘Children of Hoarders’ online community, having also been part of group many years ago called “Making Peace with Your Past”.
His mother has hoarding disorder, although when Craig was growing up, this was not recognised as a mental health problem in its own right.
As an adult, Craig cleaned out his mother’s living spaces twice, hiring a team of professionals to assist him the second time.
“It took them four days with four people filling up four larger tractor trucks,” he said.
“I hope this hoarding condition can get some visibility and some research. Usually the hoarders get all the attention, but the family members are negatively affected and need resources of their own.”
What is hoarding?
Hoarding is a mental health disorder where people have persistent difficulty parting with or discarding possessions, regardless of their actual value or practical usefulness. It was not recognised as a separate mental illness until 2013. Before then, hoarding was classed under obsessive-compulsive disorder (OCD), but it was found that the criteria for OCD did not necessarily apply to all people struggling with hoarding difficulties.
People who suffer from hoarding have difficulty controlling their acquisition of stuff and display highly emotional connections to their belongings, so that discarding possessions can feel like throwing away a part of themselves.
Information processing difficulties like struggling to make decisions and staying on task, are associated with hoarding. Perfectionism is also a hoarding trait that actually paralyses people from trying to de-clutter at all.
Hoarding is different to collecting, which is acquiring things based on a common theme and can be a social activity among people who share their collections.
Many people with hoarding difficulties have experienced significant trauma and approximately 50 per cent of people with hoarding disorder also struggle from depression.
The onset of hoarding is early in life, and for most people symptoms of the disorder will begin to develop between the ages of 10 and 20. The severity of the illness increases with age, and people seeking treatment for hoarding are commonly 50 years and older.
Since it officially became viewed as a disorder on its own, there has been an influx of research for developing treatment, and media interest in hoarding. According to Dr Milicevic, there is a worrying tendency in the media to sensationalise hoarding and portray it as something that can be cured with an “all hands on deck” clean-up approach.
“A lot of these programs talk about “the hoarder” and people get really… upset about that because they sort of feel like the person is lost with the problem…. It’s one element, (but) there’s more to the person than that,” she said.
“I think people don’t understand the amount of distress that discarding causes people. People can actually become quite suicidal and have a total decline in their mental health when they start discarding, so they need a lot of support and we’d only do that under treatment.”
The costs and impacts of hoarding
An estimated 600 000 people, or 2.6 per cent of the Australian population, suffer from hoarding disorder.
Catholic Community Services, a not for profit organisation that offers assistance to people struggling with hoarding in their homes, has estimated that hoarding is a “$1.8 billion issue” in Australia, with minimal intervention costing approximately $3000 for a single case.
However, the statistics about hoarding are quite uncertain because it is an illness that often stays hidden within the home.
“There of course was always the fear of someone coming to the front door and finding what was behind,” said Samantha Larsen, whose mother had hoarding disorder.
Growing up, Samantha knew that her home life was different.
“I had (a) feeling that other families weren’t like mine. I would think to myself, “where do they keep all of their stuff?” It took until I was older to realise that other people didn’t have as much stuff as we did.”
When preparing for friends coming to visit as a child, Samantha remembers “stuffing items into every nook and cranny” to try and hide the clutter.
She says that growing up in a hoarding household has meant that she now struggles with scheduling cleaning into her routine, not knowing “how regularly you do certain things” and relationships with past roommates have been fractious as a result.
Now a member of the online support group ‘Children of Hoarders’, Samantha says she understands that her mother suffers from a mental illness, but this has had a negative impact upon her life as well.
“As an adult I am more comfortable with the idea of knowing that she needs support and that this is a mental illness and that her brain is just wired differently.
“Her hoarding is not my responsibility. I am not part of the hoard. It is not mine.”
In the pilot treatment run by Dr Milicevic and her team of clinicians at Nepean, people with hoarding disorder met as a group for two hours each week at the clinic.
Group therapy helps to de-stigmatise the illness and make people feel like they’re not alone, Dr Milicevic said.
“You see the group becomes ‘their group’…they take ownership of the group which I think is really, really positive.”
The aim of the treatment was helping people to acquire skills around understanding their own individual experience of hoarding and learning to discard material possessions.
Exposure therapy was used to help clients feel more comfortable about discarding their possessions. Dr Milicevic explained that the clinician began by discarding some paper with notes on it in front of the group, explaining their actions as they did so. As the sessions progressed, and people became more de-sensitised to seeing things being discarded, participants were asked to bring in their own things to throw out in front of the group.
“There were some people in the group that had their registration for the first car that they’d ever owned, which was 40 years ago,” she said.
“The car isn’t alive anymore, it doesn’t exist, but it’s connected to a really strong memory and the memory is hard to let go of.”
The “booster” group sessions after the program were used to consolidate the skills that people had learned and discuss how treatment could be made better.
The family intervention program, which will hopefully be ready for the second half of this year, came out of these consultative sessions with members of the hoarding disorder program.
“We want it to be valid for consumers, and then we run it with families and get feedback from families. It’s going to be a bit of a work in progress so that it is really going to meet the needs of the person with hoarding but also so the family feels that the intervention gives them the skills they need to support their loved ones,” Dr Milicevic said.