Hoarding: how and when should you take down people's 'walls of safety'?

Kayley Hyman, mental health specialist at the Salvation Army, discusses how to support and deliver trauma-informed interventions.

In the past decade, there has been a notable increase in analysis of research on hoarding, its phenomenology, pathophysiology and treatment approaches. However, the research base itself largely predates the classification of hoarding as a disorder in its own right (rather than a sub-symptom of Obsessive Compulsive Disorder). The classification changed upon publication of the latest edition of the Diagnostic and Statistical Manual in 2013.

"The reasons for hoarding are limitless, complex, and incredibly personal. When you are let into a person’s inner sanctum to listen to these stories slowly unfold, it becomes about biography, not biology."

Uncertainty regarding the most appropriate classification of hoarding disorder has had important consequences for our understanding of the illness: an issue that is now reflected in the alarmingly limited treatment pathways that can be accessed by those seeking help. 

Statistics recording the rates of those who hoard vary in keeping with this, spanning anywhere between 1.5 percent and 8 percent of the general population (Mataix-Cols David, Epidemiology of Hoarding Disorder, 2013). At the top end of the scale, we are looking at a statistic that is more than treble the prevalence rate of OCD and schizophrenia. Hoarding is an issue of concern across both mental health and housing. One in 10 housing referrals that we at the Salvation Army have seen in Cardiff identify hoarding as a lead need.

• See also: Rise in demand for private counsellors as patients say NHS waiting lists are too long
• See also: 'Debt CBT' comes to NHS for first time

Hoarding is one of the leading causes of eviction in social housing (Brown, F. & Pain, A. 2014). It frequently prevents hospitals from making safe discharges and the emotional and physical impacts on the individual and their families are extensive. In addition to fire risks and pest infestation, sufferers can become increasingly isolated and at significantly higher risk of developing co-morbid mental illnesses (Frost, RO. & Steketee G, Tolin DF. 2011).

These are just the cases we know about – many never see the light of day, particularly those in privately owned properties, who are left in relative peace to live how they wish. A diagnosis of hoarding disorder – a secretive and private illness by its very nature – relies on an individual seeking GP advice. This is particularly problematic if they also suffer from the phenomenon known as ‘clutter blindness’, which impedes the individual from recognising their own home when shown photographs of it. 

The extent of the issue therefore, juxtaposed against a significant lack of resources and specialist service provision, has posed challenges to offering innovative and sustainable interventions to this client group.

Ruthless landlords

Gail Steketee and Randy Frost’s studies indicate that unlike OCD, hoarding disorder is particularly unresponsive to pharmacological treatments alone. From a therapeutic perspective, there is a wide body of evidence to show positive outcomes from Cognitive Behavioural Therapy when applied to hoarding behaviours. However, a social landlord wanting to evict someone breaching their tenancy is unlikely to hold off for the time period required to access talking therapies. 

Working in a trauma-informed manner with this client group, often under the very real threat of an impending eviction order, has necessitated a huge and ever-evolving culture shift when working with local authorities and social landlords. Their rigorous interventions include enforced house clearances as a ‘softer’ alternative to eviction. 

One underpinning philosophy of CBT involves allowing time to look at a person’s story and explore their narrative tapestries. Enforced clearances do not begin to consider this perspective. The service provision and funding to allow for anything beyond indeterminately piling a person’s ‘clutter’ into a van and disposing of it simply do not exist. With nearly a 100 percent regression rate (Barbara Glassheim, 2016), this often traumatising intervention serves purely to address the physical surface of a psychological issue. Enforced clearances are executed by housing officers under heavy pressure to reduce fire hazards by whatever means necessary after Grenfell. 

It is rare to identify someone in this demographic who has not experienced trauma of some kind, either historic or present. The reasons for hoarding are limitless, complex, and incredibly personal. When you are let into a person’s inner sanctum to listen to these stories slowly unfold, it becomes about biography, not biology. Each individual narrative behind hoarding is a privilege to hear. I have been most impacted by learning of how some people have endured trauma at the hands of others so affecting that they have sought comfort in creating ‘walls of safety’ made up of inanimate objects. 

If we consider an enforced clean as an intervention, we need to ask ourselves: who are we to take down somebody’s wall?

You will rarely find a hoarder who states that they are happy with the way they are living. They are often in a state of despair and if it is carried out in the right manner, they can engage incredibly meaningfully with support. Perhaps it requires removing the bricks one by one, rather than demolishing the physical and metaphorical wall all at once.

A house clearance averages two days. A trauma-informed approach to hoarding takes a less predictable length of time. On a good day, I may be invited over the threshold of somebody’s property following weeks of door-stop work. On a great day, there may be the chance to explore some of the deep-rooted issues that have manifested themselves over the years into an environment that an outsider can only perceive as chaos.

Such a response can be difficult enough for professionals who have no emotional investment in the issue to achieve. Concerned family and friends may have spent years trying to emphasise the urgency of the situation, perhaps enforcing their own well-intentioned yet counter-productive interventions on their loved one through sheer frustration or desperation.

Many have witnessed the ‘tough love’ interventions popularised by American media, but the growing research shows that psychoeducational programmes are key to supporting family members who hoard, and may be far more effective in helping hoarders to better understand the intricate complexities of hoarding.

The harm reduction model can also be conducive for family and professionals when supporting those who hoard as it facilitates a balance between acknowledging that a person may never rid their home of what others may deem entirely unnecessary possessions - but they may be willing to explore moving their items to safer spaces, or into storage units.

Another day may feature a three-hour discussion about the metaphorical and physical symbolism of an empty food tin. What it represents. What it may come to represent. This leads to a tentative foray into exposure therapy; a gentle exploration of what could happen if I took the tin into the next room. What potential fears might surface if I loaned it for the evening, but promised to bring it back the following morning? These conversations necessitate trust. They rely heavily on patience and are underpinned by respect not only for the person with whom I’m working, but their belongings. 

The term hoarding does not relate to uncleanliness. It is a common myth that the homes of those who hoard are environments of squalor. It is possible - and indeed quite common - to have an environment that is filled to the ceiling with items that is relatively clean. Hoarders often have an exquisite sense for colour and shape, and they will find beauty and appreciation for something non-hoarders don’t have the same enthusiasm for. Deep emotional attachments can exist for every single item in a person’s hoard. It is crucial to capitalise on this by demonstrating respect and interest for individual items, rather than exhibiting shock (an entirely natural reaction) at the environment as a whole. 

As with most mental illnesses, there is no ‘one size fits all’ approach to hoarding. Some instances require a practical, hands-on approach – particularly difficult if the individual hoards animals and the property is a classified bio-hazard. Others need time to be taken to talk things through, before they will even contemplate moving items.

The first person who enlightened me on the concept of a wall of safety responded differently again. For the first four weeks of support, I sat talking with her on her doorstep, physically unable to navigate the lady’s property. We discovered, purely by chance, that listening to opera music on my phone made the cleaning process far more bearable for her, as it triggered positive associations from when she attended the theatre with her late husband. She now lives independently in her home, finally able to see the photos from her wedding day, which had been buried for years under clothes and books. 

It’s key to celebrate victories, no matter how small they may seem. To encourage and applaud every single step that someone takes towards progress.  The very fact that a person has let you into their home and into their life to play a supporting role in their story is huge. It should never be underestimated.