Hoarding Disorder. The hidden illness.
Like most human behaviors, saving and collecting possessions can range from being totally normal to excessive or pathological. Most children have collections at some point and approximately 30% of British adults define themselves as collectors. Hoarding and Compulsive Hoarding are some of the more commonly used terms to refer to an excessive and problematic form of 'collectionism'.
Hoarding is highly prevalent (approximately 2-5% of the population – that is potentially over 1.2 million people in the UK alone) and when severe, is associated with substantial functional disability and represents a great burden for the sufferers, their families and society.
Hoarding has often been considered a symptom of obsessive-compulsive disorder (OCD). It is clear that in some cases, hoarding can be a symptom of OCD, for example, when hoarding accompanies a fear of contaminating/harming others if "contaminated" possessions are discarded, or superstitious thoughts such as the unreasonable belief that throwing something away will result in a catastrophe of some kind. However, recent research has shown that in most cases, hoarding appears to be independent from other neurological and psychiatric disorders, including OCD. These individuals do not experience intrusive thoughts, images, or impulses (that is, obsessions) or repetitive behaviors (that is, compulsions) as defined in the current classification systems and required for a diagnosis of OCD. This means that a large proportion of sufferers may remain undiagnosed and thus not receive adequate treatment.
The fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), the book that contains all officially recognised mental disorders, is due to be published in 2013. The work group I advise is proposing the creation of a new diagnosis in DSM-5 named "Hoarding Disorder." This proposed diagnosis would apply to hoarding that occurs in the absence of, or independently from, other organic or mental disorders. The World Health Organisation (WHO) is also likely to follow suit and include the disorder in its next edition (due in 2015).
Symptoms may include a persistent difficulty discarding or parting with possessions (regardless of the value others may attribute to these possessions) with strong urges to save items and/or distress associated with discarding, and the accumulation of a large number of possessions that fill up and clutter active living areas of the home or workplace to the extent that their intended use is no longer possible, i.e. you can't cook in the kitchen or sleep in the bedroom. Symptoms may also be accompanied by excessive collecting or buying or even stealing of items that are not needed or for which there is no available space.
It is worth noting that whilst some hoarders have good insight into the problems caused by their behaviour, others are completely convinced that their situation is not problematic, despite evidence to the contrary. These sufferers are often reluctant to seek help for their problems, causing great distress to family members. Sometimes, when possessions and clutter spill over to communal areas, e.g. front and back gardens, neighbours may be affected too and councils may be forced to intervene.
It is important to emphasise that whilst the proposal of the new disorder has been well received and is widely supported by most professionals and sufferers, it is still not 100% sure that Hoarding Disorder will become a recognised mental disorder in DSM-5.
The hope is that the addition of this diagnosis in DSM-5 will increase public awareness, improve identification of cases, and stimulate both research and the development of specific treatments for this problem. It will also mean that sufferers should be able to receive help within the NHS.
Dr David Mataix-Cols, PH.D, is a senior lecturer at the Institute of Psychiatry, King’s College London and is spearheading research into Hoarding Disorder. He is advisor to the DSM-5 Obsessive-Compulsive Spectrum Sub-Work Group of the Anxiety, Obsessive-Compulsive Spectrum, Post-Traumatic, and Dissociative Disorders Work Group which is campaigning for Hoarding Disorder to be recognised as a genuine mental disorder.
To take part in his research, please contact him via email firstname.lastname@example.org