What is hoarding disorder and how can you help someone who has it?

Jessica Grisham has come across countless stories of people with hoarding disorder, but some stand out more than others.

“[There was] a woman who was watching an online shopping channel, where a person was selling these interesting-looking dolls,” she tells ABC RN’s Life Matters.

Despite the salesperson’s best efforts, no-one was purchasing his wares.

This woman was “seeing [the objects] as having their own personalities, needs, wants and desires” and so ended up with scores of dolls.

Professor Grisham works at the School of Psychology at the University of New South Wales, where she focuses on hoarding, obsessive-compulsive disorder and anxiety disorders.

She’s trying to make Australians understand that hoarding disorder is a treatable mental health condition and put an end to the stigma around it.

“It’s a chronic disabling disorder and it just doesn’t go away on its own.”

What is hoarding disorder?

Hoarding was widely considered a symptom of obsessive-compulsive disorder until 2013, when ‘hoarding disorder’ was added to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders.

Professor Grisham cites one study which found around 2.5 per cent of the general population has the disorder.

But what separates someone with hoarding disorder from someone who just likes to collect things?

A blonde-haired woman smiles at the camera.
Jessica Grisham is trying to end the stigma around hoarding disorder.(Supplied)

Professor Grisham says it’s easy to distinguish, both for professionals and people in the community.

“Lots of us like to collect things … But at a certain level, it can take over a life and create interference and distress. People can start accumulating a wide range of objects — so many things, that they have difficulty in their living space.”

Professor Grisham says people with hoarding disorder develop an “extreme intense emotional attachment to objects” and cannot throw them away “even if the clutter is mounting in their house and creating an unlivable situation.”

“The clutter can get to a point where they can’t use their kitchen to cook or they’re not sleeping in their bed — here it becomes quite clear that we’ve crossed the threshold into an actual disorder.”

It can pose serious health and safety risks and sometimes results in tragic consequences.

A study sponsored by the Melbourne’s Metropolitan Fire Brigade found hoarding-related fire incidents “accounted for only 0.25 per cent of all residential fires but 24 per cent of preventable fire fatalities” over the same time period.

And according to NSW Fire and Rescue, 12 per cent of all fire fatalities in the state are persons “reportedly living in hoarding and squalor conditions.”

Stigma and judgement

Hoarding disorder has a long history, as does the stigma and judgement around it.

One of the earlier references is in Dante Alighieri’s 14th-century text Inferno, where the fourth circle of hell is occupied by selfish people who hoard possessions.

A black and white illustration of men pushing giant bags up a hill.
Hoarders feature in Dante Alighieri’s 14th-century text Inferno.(Getty Images: Heritage Images)

Similar disparaging attitudes have persisted to the present day, with hoarding featured — and often lampooned — on reality television shows.

“A lot of those television reality shows haven’t really helped,” Professor Grisham says.

“[Framing] people who hoard as nonsensical or really extreme … Describing them as maybe just lazy, just messy, just slobs — these are really pejorative kinds of terms.”

She says these representations present a huge challenge “for someone who’s really struggling and has a mental disorder, just like depression or an eating disorder.”

Starting young

Although hoarding disorder is often associated with older adults, it can actually start to emerge much earlier in life.

Professor Grisham says her research has shown that the age of onset was often in the mid-teens or even earlier.

So she says there are some signs to watch out for in children and young people.

“Collecting is really normal and common in children. But when it starts leading to anxiety and distress — when they are unable to part with a huge range of objects … It might be a good point to intervene,” she says.

“Because part of the problem is that often people don’t seek treatment until much later in life, and by then the accumulation is quite severe.”

Impact on family and friends

A house that is filled to the brim with objects is not just a challenge for the person living in it.

Piles and piles of booking in a house.
Hoarding disorder can often lead to tensions and schisms in families.(Getty Images: Sandy Huffaker)

“It can be really hard on relationships — family members contact me and my colleagues all the time, feeling really frustrated with their loved ones, saying ‘why can’t they just get rid of their stuff?'” Professor Grisham says.

She says the disorder can create fractures within a family and lead to further isolation of the person affected.

“Some people with hoarding disorder don’t have people over to visit because of the shame and the stigma. And they get more and more lonely, more and more depressed, and the hoarding gets worse and worse.”

Don’t get the skip bin

If you have a family member or friend who has hoarding disorder, it may be tempting to head to their house with a skip bin and start a big clean.

But Professor Grisham says this won’t help at all.

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  • “Have a gentle conversation where you see where they’re at with the stuff and if there’s anything that they would like help with.

    “Ask them how they’re feeling about this stuff, and whether they have any concerns or how they feel things are going to be in five or 10 years if it keeps going like this,” she says.

    “It still can be really hard. A lot of times, people are just not ready or willing to change. And what needs to happen is for them to hopefully get into treatment. If they’re willing to do that, there are treatments available.”

    She says the specific treatment is cognitive behavioural therapy for hoarding disorder, which has “quite good results.”

    “So it’s best to look at different resources, contact people and find [a therapist] who has experience or training in treating hoarding disorder.”

    And Professor Grisham says family and friends have a huge role to play.

    “One of the interesting things we’ve seen is how social connection can improve hoarding symptoms, and how critical that is in treatment,” she says.

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