Obsessive Compulsive Disorder - Compulsive Hoarding

Definition of Obsessive Compulsive Disorder (OCD)

OCD is classified as one of the anxiety disorders and is defined as someone suffering from either excessive or unreasonable obsessions or compulsions (or both), causing the individual distress and impacting on their daily lives and ability to function ‘normally’.  

According to the Diagnostic and Statistical Manual of Mental Disorders (DSM) version IV the obsessions must fit the following criteria;

* recurrent and persistent thoughts, impulses, or images that are experienced, at some time during the disturbance, as intrusive and inappropriate and that cause marked anxiety or distress

* the thoughts, impulses, or images are not simply excessive worries about real-life problems

*  the person attempts to ignore or suppress such thoughts, impulses, or images, or to neutralize them with some other thought or action 

* the person recognises that the obsessional thoughts, impulses, or images are a product of his or her own mind (not imposed from without as in thought insertion)

and the compulsions are defined as;

* repetitive behaviours (e.g., hand washing, ordering, checking) or mental acts (e.g., praying, counting, repeating words silently) that the person feels driven to perform in response to an obsession, or according to rules that must be applied rigidly 

* the behaviours or mental acts are aimed at preventing or reducing distress or preventing some dreaded event or situation; however, these behaviours or mental acts either are not connected in a realistic way with what they are designed to neutralize or prevent or are clearly excessive 

Different studies quote conflicting statistics for how many people suffer from OCD ranging from 1-4% of the UK population possibly because OCD often start in the teenage years or early twenties but it can be many years after that before people present for treatment.  The disorder is in the ‘top ten’ of debilitating illnesses according to the World Health Organisation because of the great impact it can have on an individuals’ daily life and financial situation.

Definition and symptoms of Compulsive Hoarding Compulsive hoarding can be defined as the acquisition of and the inability to discard a large amount of ‘items’ resulting in a vast amount of ‘clutter’ which then impacts on the living conditions and daily functioning of the sufferer.  The items that are hoarded often seem to have no or little value to any outsider but often result in an obsessional fear and anxiety at the thought of getting rid of them or them becoming lost for the sufferer.  Commonly this can be because of the irrational belief that the items may be needed in the future or because of an emotional attachment to them where the item is believed to be an extension of the person or someone who is no longer in their life. The characteristics exhibited by the ‘hoarder’ often include that of perfectionism, indecisiveness and procrastination and these extend beyond the hoarding activity to problems with any decision making which then frequently results in avoidant behaviour.

Compulsive hoarding has been found to be twice as prevalent in men as women and research has shown that sufferers often had a family member who has OCD and/or hoarding tendencies.  Some of the common items hoarded include newspapers, leaflets and any paper items generally, such as shopping lists and receipts, or clothes and furniture but in some cases may include animals, half-eaten food, urine and faeces.  It is easy to see that one of the immediate practical issues of hoarding is that of health and safety including fire, infestations and falls. 

Normal activity such as cooking, cleaning or even sleeping in a bed often can’t be undertaken as rooms and surfaces are too full of clutter.  Family members can also be greatly impacted finding the inability of the sufferer to address the problem difficult to understand.  Plus, as the majority of hoarders are unmarried and live alone, inviting people to their home is often avoided greatly increasing their social isolation.

Some research was undertaken by one of the experts in this field, Dr. Randy Frost, to look at how compulsive hoarding differed from normal collecting behaviour and three key criteria were identified which can be summarised as;

1.   Compulsive hoarders collect items more frequently and place far greater importance on them than would be considered ‘normal’ for other collectors

2.   Living areas of compulsive hoarders become inaccessible for their original purpose

3.   Compulsive hoarders are distressed rather than gaining pleasure from their ‘collection’

People who compulsively hoard in this way have certain beliefs about the items they hoard and are a method for them to; feel safe and in control; maintain a memory or emotional attachment; avoid thoughts and feelings they may find difficult or replace personal relationships.

The initial acquisition of items can vary from keeping hold of all possessions of deceased relatives to taking things other people have thrown out they have found in skips or by the roadside or by collecting anything handed away free such as flyers or newspapers to compulsive shopping or sometimes even shoplifting.  Further knock on effects can therefore be the risk of a criminal record or running into financial difficulties.

People suffering from compulsive hoarding have also been found to show higher symptoms of severe depression, anxiety and social phobia, making it more difficult to address their compulsive hoarding and to generally cope with daily life.  If their hoard is at threat the anxiety faced can be unbearable for them but even living with their items can be very stressful, perhaps less from the impacts mentioned previously and more from the fear of not being able to locate something in their chaos.  It is more likely that things will be hoarded in a disorganised way as categorising things can often be impossible for them.  Whereas someone not suffering from compulsive hoarding may group all financial information in one file and keep all clothes in one wardrobe for someone suffering from this disorder they are more likely to see the differences in the items grouped together than the similarities.  It is quite usual for hoarders to have a number of storage areas, drawers, bookcases, boxes etc., which are actually empty because they find it so difficult to decide what can be stored together, this plus the knowledge that they have something but can’t find it, also adds to their anxiety and may also lead them to buy or obtain more of that item, in turn worsening the situation.

What causes compulsive hoarding and is it part of OCD?  
There is a view that compulsive hoarding could be hereditary as there are claims that up to 85% of sufferers are aware of another member of their family with this disorder, more than twice as many as people who have non-hoarding OCD.  It has been suggested in 1999 by Stein et al and again in 2002 by Samuels et al that there may be a distinct genotype as hoarding tendencies are much more common in family groupings.

Other causes may include problems with normal brain development as it has been found that this disorder can begin after someone has suffered a stroke or other brain injury or infection.  In fact studies of brain function, via a PET scan, in people with compulsive hoarding compared to people who have OCD but no hoarding tendencies have found unique abnormalities.  “Compulsive hoarders had significantly lower metabolism in the posterior cingulate gyrus and occipital cortex (a brain region involved in visual processing) compared to controls, whereas non-hoarding OCD patients had significantly higher glucose metabolism in bilateral thalamus and caudate, structures previously found to have elevated activity in OCD. Hoarders and non-hoarding OCD patients also differed from each other, with hoarders having significantly lower metabolism in the dorsal (superior) part of the anterior cingulate gyrus and thalamus than non-hoarding OCD patients. Across all OCD patients studied, hoarding severity was significantly correlated with lower activity throughout the dorsal anterior cingulate gyrus. Our findings suggest that the compulsive-hoarding syndrome may be a neurobiologically distinct variant of OCD. In addition to the observed differences in cerebral glucose metabolism, our results raise the question of whether compulsive hoarders also have structural brain abnormalities and neurocognitive deficits that differ from those seen in non-hoarding OCD patients.”[1]

The DSM-IV lists OCD as a single disorder which doesn’t specifically mention hoarding, and as more research is undertaken it has become clear that it isn’t that simple and there is debate over whether compulsive hoarding should fit within OCD or not.  Research by Frost, Krause and Steketee in 1996 found that between 20% and 30% of people diagnosed with OCD also reported symptoms of hoarding and looking at it from the other angle it has been found that whilst most compulsive hoarders exhibit other OCD features that is not true for everyone; Steketee & Frost, 2003.  In general for compulsive hoarders who also displayed other OCD symptoms these were more severe than other OCD sufferers who didn’t hoard.  In the same 1996 review and further research by Samuels et al in 2002 compulsive hoarders were also found to suffer more from social phobia and other personality disorders.

Unlike the criteria to diagnose OCD, hoarding is specifically mentioned in the criteria for obsessive compulsive personality disorder (OCPD), however this was based on psychoanalytical theory, specifically that of anal fixation, and is now considered an unlikely explanation as in DSM-IIIR the hoarded items were said to have no sentimental value when we now believe that the opposite is often true; Frost, Hartl, Christian, & Williams, 1995 and Winsberg, Cassic & Koran, 1997.  Regardless of what value anyone else may put on the hoarded items the sufferer often has an excessive emotional attachment to their possessions.

Research by the Institute of Psychiatry with 52 severe sufferers of compulsive hoarding found that half of them did not meet the diagnostic requirements of OCD, mainly based on the differences relating to obsessions. Less than 5 of those interviewed had a similar style obsession to an OCD sufferer, e.g. “If this item is thrown out I will die” whereas the others had an emotional link or an excessive fear of possibly needing the item in future that prevented them discarding items.

There are certainly many similarities between general OCD sufferers and those who hoard such as the feelings of anxiety, which they aim to manage by their compulsion, the extreme sense of personal responsibility and a drive for perfectionism.  However, there are also many differences including specific intrusive thoughts and the response rate to normal OCD treatment as we’ll see in the next section.

Treatment for Compulsive Hoarding
Whilst the results of compulsive hoarding cause distress help is very rarely sought, possibly because of the shame and embarrassment that seem to go hand in hand with this disorder.  Plus the thought of anyone else physically handling their possessions can be very anxiety provoking
for them.  It can often be third parties who highlight the problem, if not family members, then landlords or neighbours reporting clutter on shared stairwells or in gardens; unpleasant smells or rat infestations etc. Alternatively it can often take a significant event for the sufferer to seek help such as the threat of eviction or debt problems meaning their ‘clutter’ can no longer be stored.

The main treatments used for OCD generally are medication, specifically serotonin reuptake blockers (SRI’s), and cognitive behavioural therapy (CBT). Although there is a limit to the amount of studies undertaken with compulsive hoarders it seems that they do not respond as well to either of these core methods than people with OCD and no hoarding tendencies, so more recently alternative, better treatments have started to be researched.

The aim of the standard prescribed medication is to help limit the frequency and strength of the OCD sufferers’ intrusive thoughts, helping them to engage more in subsequent behaviour therapy.  However it is less the intrusive thought and more the belief in the value of their hoard that impacts on the compulsive hoarder being able to dispose of any of their items and the medication cannot address this.

There are two types of CBT used to treat OCD, Exposure and Response Prevention (ERP) and Cognitive Therapy.  ERP works to stop the vicious cycle of the anxiety feeding the compulsive behaviour and vice versa by gradually ‘exposing’ the sufferer to their fear and ‘stopping’ them following their usual behaviour pattern until their anxiety drops.  Results of this approach have shown that our anxiety will eventually drop if we maintain a stressful situation for long enough, helping us to learn that our fears have not been realised and therefore lessening the anxiety of repeating this new behaviour in future.  For someone suffering from compulsive hoarding the approach may be for them to prioritise the items it would be most and least stressful for them to dispose of (or tidy away) and then, starting with the least stressful, support them to do this and stay with their anxiety until it reduces to a manageable level.  One of the difficulties of this approach for people with this disorder is the prioritisation of where to start as indecisiveness is a central part of this condition so that may be worked on first by encouraging the client to face their fear of making a mistake and make some decisions faster.  To be effective ERP needs to be done frequently, usually daily, so the client is likely to be alone to complete most of this.  For someone with compulsive hoarding the amount of items hoarded in their home can also make this seem totally unrealistic to do on their own but even if ‘hands on’ support is available this can be equally difficult for them to cope with. 

Cognitive Therapy works on helping the client to change their behaviour in response to their thoughts and can be used alongside ERP.  This approach will look at the irrational beliefs the client may have, for example a compulsive hoarder may think that if they got rid of a hoard of newspapers then they will ‘fail’ in the future because they won’t have the necessary information they may need and a cognitive therapist would work with the client on achieving a more balanced belief, perhaps by looking at the evidence for or against this thought.

When successful a CBT approach can reduce anxiety and the original compulsive and avoidant behaviours suffered by the client and to date a combination of medication and CBT has been found to be the most effective treatment for people with compulsive hoarding although there is still a poor success rate when compared to the results with non-hoarders.  At the very least this approach will often take much longer and need more therapist support than when treating other OCD sufferers. 

For any treatment approach to work the first step is for sufferers to recognise they have a problem and request help.  People presenting with compulsive hoarding are often at least in their 50’s when the disorder (unless triggered by an illness affecting their brain) usually started in their teens.  Therefore by this point their behaviour has become deeply embedded and the sheer volume of their hoard can fill their house, garage and other storage areas so the size of the task can be overwhelming for client and therapist alike.  The time and support needed is therefore likely to be equally big so there is a great difficulty in sustaining this and a high ‘drop out’ rate of clients. Then in
addition to the small number of people presenting for treatment, because this is a relatively under-researched area, the number of experienced therapists is also very low.  Plus none of these problems take into account the health and safety issues, the financial implications or the physical strength needed to address the problem.  All in all this paints a very black picture for the compulsive hoarder wanting support to help them break their compulsive patterns of behaviour.  So, what is the answer?

What now?
Since the early 1990’s more investigations have started into compulsive hoarding with one of the main teams of people looking at improved treatment for compulsive hoarding, Drs Frost, Steketee et al, having developed a model focusing on the main four problem areas;

* Problems in relation to the way information is processed which results in poor decision making and a lack of organisational skills

* Issues with emotional attachments which results in social isolation and the belief that possessions are an extension of themselves

* Avoidant behaviour because of the fear of making mistakes and need for perfection

* Irrational beliefs about their possessions regarding why they need them and what would happen if they got rid of them

This specific ‘compulsive hoarding’ CBT model incorporates more frequent sessions, ideally several times per week, and, where possible, enlists support from family and friends to help clients with their ‘homework’ etc.  The model has three key objectives and has so far proved more effective than the model used for OCD generally although study sizes have been small;

1   To decrease clutter

2   To improve decision making skills

3   To improve organisational / sorting techniques

One of the largest studies to incorporate this cognitive behavioural model comprised of 190 OCD sufferers where 20 people listed compulsive hoarding as their main issue and was conducted in 2002 by Saxena et al.  Patients attended daily therapy over a six week period concentrating on “goal setting, education, developing a hierarchy for target areas, exposure and cognitive restructuring focused on perfectionism, responsibility, doubts about memory and emotional attachment.”[2] 
In addition to the therapy patients continued to take their SRI and any additional medication.  Using the Yale-Brown Obsessive Compulsive Scale the OCD patients with no compulsive hoarding issues reduced their scores by 13.4 points on average whereas the compulsive hoarding group improved by 10.6 points, from 30.4 to 19.9, which is still a significant improvement.

In summary, therefore, it can be seen that adapting standard CBT treatment for OCD sufferers, alongside traditional medication, can be beneficial for those with compulsive hoarding disorder but a lot more research needs to be done to identify even better methods of helping this group of people.

[1]  The Neurobiology and Medication Treatment of Compulsive Hoarding, Sanjaya Saxeena M.D., Director, UCLA OCD Research Programme

[2] Compulsive Hoarding: Current Status of the Research, Gail Steketee, PhD & Randy Frost, PhD