Understanding a hoarder's narrative: a holistic response to this misunderstood condition
16 December 2019Content warning: mentions of house eviction
Hoarding disorder is featuring again in the Welsh media after a 70 year old lady with post-traumatic stress disorder has been evicted from her house in the town of Blaenau Ffestiniog. "I would like some respect for my dignity and sanity", she told journalists from the van she is now living in with her three cats.
"To strip a person with hoarding disorder of their items, of their identity, and of their homes is not the solution. It never will be".
According to the Welsh Fire Service there are approximately 150,000 people at risk of hoarding-related deaths by fire in Wales.
Classification of hoarding disorder
Prior to 2013, hoarding disorder sat discretely under the umbrella of Obsessive Compulsive Disorder (OCD). Since its reclassification in the latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) as a clinical condition in its own right, hoarding disorder is becoming a more widely understood psychiatric disorder.
The complex psychopathology of this condition is gradually becoming more compassionately recognised as a coping mechanism or a response to trauma rather than a manifestation of mere laziness - a myth perpetuated by the media in televising extreme cases of hoarding. Indeed, comments on news articles about the aforementioned 70 year old suggest stigma attached to hoarding disorder is still rife.
Treatment pathways
The uncertainty regarding the classification of hoarding disorder has had important consequences for our understanding of the illness: an issue that is now being reflected in the limited treatment pathways that can be accessed by those seeking help.
Hoarding disorder is notably unresponsive to pharmacological interventions, leaving few alternatives. Although it is recommended that family and friends of those who hoard should open up compassionate conversations with their loved ones, it can do more harm than good if unwanted clearances are carried out. Often causing trauma or distress to all parties, these clearances are potentially detrimental to relationships.
The recommended treatment for hoarding is Cognitive Behavioural Therapy (CBT). Whilst the outcomes of CBT are largely positive, the hoarding model* incorporates intensive therapy sessions to explore the root causes of the hoarding behaviour. After this is exposure therapy in the form of visits to places that may be a trigger to clients - such as shopping centres or charity shops - and is followed by significant relapse prevention work.
The feasibility of implementing this model amidst an already high waiting list for talking therapies is unlikely to hold off the most pressing issue that faces the majority of people who hoard – eviction.
A different approach
This multifaceted condition needs a multifaceted approach. It requires that multi-agency work be meaningful, not just another buzzword. Aside from the ethical standpoint of carrying out house clearances, the average hoarding case costs the landlord between £35,000-£45,000**. The recidivism rate of house clearances stands firmly at 100%.***
Almost by default, hoarding cases tend to fall on the housing associations to deal with. As a tenancy governance issue, hoarding needs to be addressed by the landlords. But these are housing professionals whose legislative expertise relates to the Housing Act - not the Mental Health Act.
Whilst we need to understand hoarding through the lens of mental illness, we must also understand the frustrations of housing officers repeatedly and fruitlessly trying to gain access to high-risk properties when they are already under immense pressure to reduce fire hazards after the Grenfell Tower tragedy.
The Child Protection and safeguarding angle should not be overlooked. We need to hear from the agencies who encounter animal hoarding cases. Finally and most crucially, we need to hear the narrative of the person who hoards, to understand what hoarding means to them, and to learn what strategies could actually work.
The role of community task forces
A community task force has the potential to bring together these perspectives and form a collective voice. The task force offers societal-level interventions to assist with the most severe types of hoarding, aimed at individuals who would not otherwise voluntarily seek help for their behaviour (Bratoitis, 2013). These types of partnerships that channel the expertise of a variety of service providers have previously been formed to address issues such as domestic violence and social exclusion and have shown positive outcomes.
The first hoarding task force came about following the deaths of four people in a cluttered residence in Virginia and continues to be in operation today (Ligatti, 2013). Whilst the missions and goals of the respective task forces can vary, the common goal is to provide a coordinated and managed response to support hoarding behaviours.
The assessment process should use the input and experiences not only of the individual who is hoarding, but their social networks or carers, and health-care professionals in order to promote a holistic approach (Grisham & Williams, 2014). Having a task force in place can allow for information sources to be integrated for an accurate diagnosis to be made and a treatment plan formed.
When enacted effectively this approach does not engage in blame culture. It facilitates a system whereby Child Protection services are empowered to take the lead on cases where children are living at the property, or allows mental health services to do so when there are co-morbid mental illnesses. The task forces can provide landlords and members of the public with an enhanced insight of the complexities behind hoarding disorder by offering training and information tools which may also go some way to reducing the stigma behind the illness.
Often these task forces have been created out of sheer frustration and a lack of signposting resources and support for hoarding disorder. With the limited resources in the health and social care sector, these community task forces are rarely funded. They rely on in-kind contributions – one organisation offering space for meetings, another providing copying materials or subsidised training courses. Primarily, they rely on a group of people coming together for the greater good.
- See more: Hoarding: how and when should you take down people's 'walls of safety'?
- See more: Saying 'no': Obsessive Compulsive Disorder and how I (almost) freed myself
- See more: Post-traumatic disorders
Crucially, if a person can demonstrate that they are trying to engage with any of the organisations in the community task force to address the hoarding behaviours, the landlord is unlikely to win an eviction case as the court will consider this as a key element of the legal proceedings (Legatti, 2013), acknowledging that the tenant is trying to address the underlying issue of hoarding disorder and preventing recidivism in doing so, and so should not be punished for this.
The term 'punishment' has been historically linked with mental illness – in practice, if not overtly in theory. It is not our job as a society to punish or control mental illness or to make it more stigmatised than it already is. If a person with OCD is compulsively hand-washing as a coping mechanism, we should not enter their home and take away their soap but look to promote healthy coping mechanisms and to offer alternative strategies.
To strip a person with hoarding disorder of their items, of their identity, and of their homes is not the solution. It never will be. But a compassionate community task force might just well be.
* Frost & Hartl, 1996; Steketee, 1998
** 2016 report by Birmingham Council: 'Research into Hoarding Final Report'
*** Barbara Glassheim: 'Guide to Effective Interventions for Hoarding Disorder'
Kayley Hyman is founder of community interest company Holistic Hoarding which provides training and consultancy services.
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