Far more than just being untidy or collecting things, hoarding is a compulsive desire to hold on to things that may or may not have value – and the volume can get out of control, sometimes taking over people’s homes entirely.

“The worst cases are often people who are really old and losing their health and mobility, and their homes are so hoarded that they can’t sleep anywhere apart from sitting on a step in the hall. One lady’s whole house was so full, she was sleeping almost standing up – there was about a square foot left free in the hall,” says hoarding specialist Heather Matuozzo, who set up a social enterprise called Clouds End (cloudsend.org.uk) to help hoarders and is chair of Hoarding UK.

Lynn Howells, who runs a hoarding support group for the housing association Silva Homes and describes herself as “a hoarder who’s continuously dealing with a work in progress”, adds: “Hoarding often creates such cramped living conditions that homes may be filled to capacity, with only narrow pathways winding through stacks of clutter. Virtually all surfaces are usually piled with all sorts of items. When there’s no more room inside, the clutter may spread to the garage, vehicles, outside spaces and other storage facilities.”

Howells and Matuozzo tackle some common questions about hoarding…

What exactly is hoarding?

“It’s the excessive accumulation of items and an inability to let those items go, even the ones that have no or low value, and the accumulation of items is such that you can’t use your rooms for their purpose – so you can’t sleep in your bedroom, for example,” says Matuozzo. “The symptoms also significantly impair other areas of your life, including health, work and relationships.

“Hoarders don’t have a voice and they get treated really badly, although their self-esteem is often really low. Often they get evicted or have forced clearances, which are horrible. It’s brutal.”

What ‘types’ of hoarding are there?

As well as hoarding disorder, there’s also chronic disorganisation, which Matuozzo says is when people don’t know how to make homes for things.

“Often people have a certain level of hoarding, and if they can maintain that level and their house isn’t a fire hazard, the only people who’ll be annoyed with it are their relatives, who are going to have to clear their house when they die,” she says. “If it’s not affecting their lifestyle and they can still get round their house and access windows and doors, there’s no piles of newspapers that are fire hazards, and if they still invite people in and are happy about their house, then that’s fine. But it’s when those things start to slip away that it becomes an issue.”

What causes hoarding?

Matuozzo says there can be a genetic propensity to hoarding, but the most common cause is trauma. “It’s a coping mechanism to deal with traumatic life events, usually involving loss. Bereavement is the most common one, or it can be losing your job or losing a relationship. It can even be empty nest syndrome, or a combination of those, when too many things happen at once and you can’t cope with them so you use subconscious coping strategies.

“You’re not aware you’re doing it, and that’s why hoarding is so difficult – it’s hidden to the person it’s happening to, but it’s stopping the painful thoughts from happening by distracting the brain through other activities such as acquiring. But we all acquire, we all buy stuff, and we’ve all got really special things we want to hold on to. That’s what makes it difficult – you don’t know at what point you’re actually hoarding.

“Hoarding is just one coping strategy – some people drink, some overeat. For the people who hoard, it feels like control, but it’s control that controls you.”

Are hoarders aware they’re hoarding?

“There’s very often an underlying acknowledgement. They can be very obtuse and say, ‘I’ve chosen to live like this, mind your own business’, but one of the ways I gently reflect this back to them is that they don’t let people in, so why would you do that if you weren’t bothered? So they do know, it’s just they’re overwhelmed and anxious,” says Matuozzo.

How can you tackle hoarding?

Howells says: “Hoarding should be tackled sensitively and individually. Have a support network, work with people you trust, make sure the hoarding person is at the centre and nothing is done without their permission. Getting them to make the decisions ultimately helps them cope in the long-term. Clearing everything out and making things ‘better’ often results in a more hoarded home very quickly.”

Matuozzo adds: “It’s difficult to force someone to tackle it – the person needs to want help, and because they’re aware of the problem you can work on that. But if someone’s saying, ‘This is my stuff, leave me alone’, that’s when it’s difficult to do because you’re going against their will.

“I try to lead with examples of how people turned their lives around. But if you tell people they’ve got to get help, you’ve prejudged them and they’ll clam up.”

Is coronavirus making things harder for hoarders?

Howells says: “A lot of people deal with a hoarded home by going out and avoiding it, but it’s not possible to do that in the current climate. The difficulty is in moving the items on, whether it’s to a charity shop or to recycling. Advice is to label things so you don’t end up sorting through them again, and as soon as possible, get the labelled items to wherever you’ve decided it’s acceptable for them to go.”

Matuozzo says she’s come across several cases where lockdown has actually helped hoarders start tackle their problem. For example, one woman whose son had died had filled her house with unnecessary and often unopened purchases, had no TV or boiler because she was too embarrassed about her home to let people in to mend them, and lived, ate and slept in one room because there were rats in the rest of her home.

“She couldn’t go to work because of coronavirus,” says Matuozzo, “so she sat in her room and realised she did care and she wanted to live. She cleared her house with help within 10 days, and she’s had the rats dealt with. Her life was broken, but she’s done something about it – without coronavirus that wouldn’t have happened.”