Addressing Common Misconceptions and Stigmas About Hoarding

One stereotypical image of a hoarder is someone, usually unkempt and old, living in a messy house, surrounded by mountains of ‘stuff’, quite often utter rubbish such as old newspapers, junk mail, plastic bottles and containers, or broken items they fully intended to get repaired but never did. The impression is often that hoarders keep hold of anything and everything, and that their homes contain so much clutter and rubbish in every room that there is usually only a narrow path through the property’s rooms, and because of the mess and disorder, actually determining the rooms’ original functions is almost impossible. Hoarding reality shows don’t help either as they showcase only the most extreme cases of hoarding. 

Hoarders are also thought to be lazy people who can’t be bothered to tidy up or to declutter. It is also thought that they have chosen to live in that environment and see nothing wrong in being cluttered, messy and disorganised, and that it is part of who they are. 

In most cases, nothing can be further from the truth. Hoarding is a complex medical condition that may in some cases be a symptom of a serious mental health condition, whilst in other cases is a mental disorder in its own right. Whichever form hoarding takes, the condition affects many people and often goes undiagnosed, possibly due to the stigma that the condition has. Stigma, shame and misconceptions often prevent people from being open about their problem; they hide it from friends, family and the outside world, commonly feeling ashamed that their living conditions have deteriorated to such an extent that they want no one to see them. Many also fear that someone else will try to take control of their possessions and their lives if they admit that they need help.

Hoarding behaviours have to start somewhere, and for many it is a coping mechanism for some form of trauma experienced or because of depression or anxiety. Unfortunately, as hoarding progresses it creates its own depression or anxiety – depression of living in such an environment and anxiety of others knowing about it, and of seeing them as lazy, unkempt slobs who should know better. People with the condition might slowly withdraw from friends, family and the outside world, finding comfort in their possessions, and justifying the acquisition of more items as a way to make them feel better.

In the UK only about 5% of hoarders come to the attention of professionals; however, it is thought that millions of people in the UK are believed to be hoarders. Research suggests about three million people have unhealthy behaviours around keeping hold of clutter. Not all will fulfil the DSM-5-TR* diagnostic criteria for hoarding disorder, but they will exhibit hoarding behaviours that affect their lives, and rather than buying into the myths and stereotypes perpetuated about people who hoard, those wanting to help and support others to overcome the condition will need to understand the condition better and recognise fact from fiction.

In this article we will explore some of the common misconceptions surrounding the condition and provide information to debunk these myths and stereotypical views in order to promote a better understanding of the devastating physical, emotional, social, financial and legal impact it can have on the individual and surrounding loved ones. With better understanding by society, people with the condition may feel safer asking for the help that they need. 

*DSM-5-TR is the standard classification of mental disorders used by mental health professionals

Hoarding is a Lifestyle Choice

Simply dismissing hoarding as a lifestyle choice is not an acceptable explanation for any caring society. A lifestyle choice is a personal and conscious decision to perform a behaviour that may increase or decrease the risk of injury or disease. The vast majority of people who hoard do not make a personal and conscious decision to do so. In fact, 92% of people who hoard have at least one other mental health disorder. The remainder have possibly been living busy lives where clutter has built up and before they realise it has transitioned into hoarding because it was not addressed at an earlier stage, and has now become unmanageable, or they derive comfort from acquiring and owning possessions and experience anxiety or distress at the thought of discarding anything. 

Modern recognition of hoarding as a disorder began with a research paper published by Frost and Gross. They proposed that three primary factors contribute to hoarding behaviour: 

• Beliefs about and emotional attachment to possessions.
• Avoidance behaviours that develop as a result of the emotional distress associated with discarding possessions.
• Information-processing deficits in the areas of attention, categorisation, memory and decision-making.

Their research suggested that it was likely that cognitive deficits play some role in the onset and maintenance of hoarding symptoms, and contributed to the condition being classified as a mental health disorder in the DSM-5-TR in 2018. Hoarding disorder has very specific diagnostic criteria; however, hoarding behaviours can also be seen as symptoms of a range of other mental health conditions, and even in physical illness and impairments such as:

• A physical illness or physical impairment that affects motivation and energy levels, leading to tiredness, lethargy and disorganisation.
• Low self-esteem and/or loneliness – this can cause people to seek rewards or validation by buying or accumulating ‘stuff’ to such a degree that it becomes an uncontrollable desire.
• Depression – this can make a person lose interest in normal activities. It can also affect motivation and make it hard to concentrate, to take action, and to make decisions. Some people excessively shop when depressed.
• Dementia – this can affect a person’s memory, and can interfere with a person’s ability to organise themselves and their possessions.
• Alcohol and substance misuse – this can affect a person’s ability to look after themselves and their living environment.
• Schizophrenia – this involves having unusual beliefs, which can lead to a lack of organisation leading to hoarding.
• Bipolar disorder – this can make it hard to start or finish things, even everyday chores such as tidying/decluttering. It will also interfere with a person’s ability to organise. Some people feel intensely well, energetic and optimistic, so much so that it affects their thinking and judgement which can lead to excessive shopping.
• Learning disabilities – some people can have problems with thinking, judgement and memory, which can lead to hoarding.
• Autism and related disorders – these can lead to collecting things as a source of comfort, and this can get out of hand and lead to hoarding.
• Obsessive Compulsive Disorder (OCD) – about 1 in 20 people with OCD have a problem with hoarding. They often don’t feel attached to their hoarded items but do fear what will happen if they throw them away.
• Cognitive distortions such as all or nothing thinking – the perfectionism aspect of the condition can prevent someone from starting to declutter as the results are not instantaneous and may appear worse before they get better.
• Eating disorders such as bulimia – these can include the behaviours of food hoarding, sneaking food, hiding food, eating in secret, stealing food or purchasing extreme quantities of food.

Whether a person’s hoarding behaviours are because of diagnosed hoarding disorder or are symptoms of other conditions, they share certain commonalities such as:

• Ongoing difficulty throwing out or parting with things, regardless of their actual value.
• Feeling a need to save items, and being upset or distressed by the thought of getting rid of them.
• Having anxious feelings about wasting things.
• Excessive acquisition, shopping or collecting free things.
• Difficulties with organising, decision-making and perfectionism including over attention to detail.
• Disproportionate attachment to items.
• Inability to distinguish the value of items, awarding the same value to all items making them hard to discard.
• Spending time moving things from pile to pile without letting go of items.
• Avoidance behaviours and trust issues.
• Lack of insight – doesn’t see the problem, or realise the seriousness of the problem.
• Absence of distress in the situation until asked to discard items.
• Justifications for the situation such as the place is too small, lack of storage, no time to organise.

Both genetic and environmental factors can play a significant role in the development of hoarding disorder. Hoarding disorder can be more common among people who have a family member who has hoarding disorder. Although the cause of hoarding disorder remains unknown, genetics is likely to be only one part of why hoarding disorder affects a particular individual. Environment also plays a role, and upbringing and life experiences such as growing up in a household where saving and collecting items is valued or encouraged, or experiencing trauma or loss, can also contribute to the development of hoarding behaviours.

It is also widely believed that hoarding is something that is mostly prevalent in older people. This is also a fallacy. Hoarding tendencies do often increase with age, but it is not exclusive to the older generation. Hoarding behaviours can begin in childhood or in the teenage years and continue into adulthood if left unchecked. However, tackling someone who appears to be developing hoarding behaviours should be done with understanding and empathy; there will be underlying issues that are causing the behaviours, as people do not choose to hoard. 

Far from being a lifestyle choice, hoarding behaviours and hoarding disorder are very real, complex mental health conditions that gradually develop over time. It can range from mild to severe and, in many cases, it can seriously affect a person’s daily functioning.

Hoarding is a Harmless Habit

Another misconception is that hoarding is a harmless habit, a fairly straightforward problem that has an easy solution, that the person just needs to organise themselves, declutter a bit and tidy up. 

On the contrary, hoarding can be harmful to many people in so many ways. It can interfere with a person’s daily functioning; just locating everyday items such as clothing amongst all the clutter can take additional time, not to mention the time needed to make them presentable to wear. This can also be stressful compared with opening a well-organised, uncluttered wardrobe and selecting an item. A person who hoards often ‘loses’ things in the clutter, which can prompt them to either rummage through the clutter looking for the item, creating more chaos and causing anxiety and frustration, or simply buying another one, adding to the hoard and depleting their finances. Hoarders will frequently have multiples of the same item, most ‘lost’ or forgotten in the clutter. 

Many hoarders reduce the size of their living accommodation by simply shutting off rooms or areas that have become too cluttered to use. If and when these areas include bedrooms, kitchens and/or bathrooms, it impacts the person’s normal daily living functions such as sleeping comfortably, bathing and food preparation. A hoarder may resort to sleeping in a chair or on a sofa which impacts the quality of their sleep and their physical and mental well-being. Being unable to prepare food affects the person’s ability to eat a well-balanced diet as they may opt for easy options such as ready meals or takeaways; in extreme circumstances a person may skip meals. 

Living with someone with hoarding behaviours whether a housemate, partner or parent can cause relationship issues and may lead to the other person(s) moving out, not wanting to live in cluttered and potentially dangerous conditions.

Many people with hoarding behaviours who live alone may avoid inviting friends and family into their home, ashamed of their living conditions. This can result in diminished relationships, isolation and an overall sense of loneliness, all of which impact a person’s physical and mental health.

People who hoard form extreme attachments to their possessions irrespective of whether they are of value or of any use or not, and they find it incredibly challenging to get rid of anything. Even the thought of decluttering can bring on intense feelings of anxiety and stress which can negatively impact the person’s health. Imposed interventions to clear the living environment can be as harmful to the mental well-being of the individual with hoarding behaviours as the hoarding itself. Not engaging with and not gaining their agreement to clear the clutter can cause immense distress. Long-term therapy such as CBT can be the most effective solution to help the individual learn coping strategies and skills that can help them to manage their problems by changing the way they think and behave, and preventing further harm to their emotional and mental well-being. 

Navigating around a cluttered environment has many potential health and safety hazards. Having items cluttering living spaces prevents the space from being used as intended. There are risks of trips, falls and injury from objects toppling over when multiple items are strewn over the floor space or piled up high. 

Cluttered homes attract dust, and the more clutter the more difficult cleaning becomes. Dust can irritate the eyes, throat and skin, and may contain microscopic solids or liquid droplets that are small enough to get deep into the lungs and cause serious health problems. 

Lack of general housekeeping may also attract insects and vermin, especially if foodstuffs and used food containers are hoarded. Living in unsanitary conditions can lead to health problems such as respiratory issues from mould or insect infestations.

Hoarding is a fire hazard. Many hoarded items are combustible materials that can heighten the intensity of a fire should one start. Due to a possible increased load risk, ceilings can collapse as a result of the weight of stored possessions, doorways can be damaged and walls weakened. There is also a very real danger that a fire in a cluttered home could pose significant risks to neighbouring properties, particularly in blocks of flats. Clutter can also prevent easy escape from a burning property as outside doors may be inaccessible. The emergency services would face any number of challenges when faced with a callout to a cluttered property. Gaining access to rescue someone trapped by clutter can be fraught with dangers. 

Most people view keeping pets as a harmless and often beneficial and healthy activity. A cat, dog or even fish can provide company, emotional comfort and motivation to take care of someone other than oneself. Having multiple pets is also not viewed as anything extraordinary; however, a multi-pet household becomes a point of concern when the individual has more animals than they can practically care for. 

Animal hoarding is a facet of hoarding that is both harmful to the individual and to the animals that are kept. Sometimes the individual has managed to adequately care for their animals, even when there is a large number of animals; however, something happens, such as illness, loss of income or the animals breed, and this impacts the person’s ability to properly care for them. Other times, the person acquires animals to fill a void in their life and the number of their acquisitions increases to such an extent that they get out of hand, making it difficult to properly care for them. 

Animal hoarding is defined in DSM-5-TR as “the accumulation of a large number of animals and a failure to provide minimal standards of nutrition, sanitation and veterinary care and to act on the deteriorating condition of the animals (including disease, starvation or death) and the environment (e.g., severe overcrowding, extremely unsanitary conditions).”

Harmful effects to both humans and animals of animal hoarding can include, but are not limited to:

• The accumulation of animal hairs throughout the property, and on clothing, bedding etc.
• Odours and sanitary issues both inside and outside the property, in some cases, particularly with cats, walls, units and doors may be scratched and stained from spraying or defecating.
• Unhygienic conditions and harmful germs become prevalent, as too can infestations of fleas and tics.
• Animals are often not provided with basic needs such as adequate nutrition, space, exercise, shelter and medical care causing harm and, usually, unintentional cruelty.

In some extreme cases, the individual may have developed a rigid set of beliefs that they are saving and protecting the animals despite the fact that they are not providing adequate care.

Hopefully, anyone who previously thought that hoarding was harmless will now think again. Not only does a cluttered environment pose health and safety risks to a person’s physical health, but it also impacts on the health and safety of others including friends, family and even neighbours. It also impacts an individual’s emotional and mental well-being, causing depression, anxiety and stress living in such an environment, and experiencing the isolation that their environment can impose, but also experiencing depression, anxiety and distress that can be caused by the thought of discarding their possessions, and feeling the anguish that the trauma that badly managed interventions may cause.

Hoarding is a Result of Poor Hygiene or Laziness

People who hoard are often dismissed judgementally by others as being dirty and/or lazy. Otherwise how else would they allow their living conditions to become so cluttered, messy and disorganised? That question is straightforward to answer. People who hoard have either been diagnosed with hoarding disorder, a complex mental health condition, or are experiencing symptoms that are associated with a mental health condition that can lead to the onset of hoarding behaviours.

Many people live in cluttered spaces, but they are still able to discard unwanted items and clean their home when necessary. The challenge of decluttering and discarding items for a person with hoarding behaviours can be so distressing that they often simply do not see the clutter as a problem, which makes cleaning increasingly difficult. It is not that they are too lazy to clean and discard, they simply cannot manage the situation. Some of the symptoms that someone with hoarding behaviours and/or who has been diagnosed with hoarding disorder might experience include difficulties organising and categorising things, and trouble with making decisions which can lead to a vicious cycle of just moving items from one place to another or accumulating more items when they can’t locate something that they need.

Another misconception that helps perpetuate the notion that people who hoard are dirty, is the idea that they collect and hoard rubbish, filling their living spaces with old newspapers, discarded food containers, packaging and junk mail, broken appliances etc. In some cases, this might be so; however, people hoard a myriad of objects, clothes, shoes, toys, books, even unopened acquisitions. The items themselves are not unhygienic, but the environment easily becomes so, as the vast accumulation of items makes cleaning difficult. Then there are ‘organised’ hoarders, people who store their vast number of items in piled up bags, boxes and containers that slowly overtake all space available. Items are not strewn around but the storage encroaches on living space making it impossible to use the spaces as intended. Often this type of hoarder spends time reorganising their possessions, but never discarding anything. This may create an illusion of orderliness despite the underlying hoarding tendencies.

There are also people who appear to the outside world as well-groomed individuals, but who live in cluttered, unkempt homes. They maintain the façade that all is well whilst keeping others away from their front door, feeling embarrassed and ashamed of their living conditions. 

Rather than being given judgemental labels, people with hoarding behaviours need understanding of how hard it is to overcome their challenges. Whilst getting to a position where they are able to discard their items and declutter their environment, an offer to help them to better organise things might help to improve their situation well enough to be able to keep things cleaner and more hygienic. 

Hoarding Can’t Be Treated or Changed

Another total fallacy is that hoarding behaviours are so ingrained that they can not be changed or treated. With the right treatment, understanding and support, people can overcome their hoarding behaviours to live much more fulfilling lives.

As with most conditions, intervention at the early stages of hoarding will make it easier to deal with. Some people with hoarding behaviours may not identify their behaviour as problematic, so it may come as a surprise that what they are doing is unhealthy. Broaching the subject may take numerous attempts to have a conversation about the situation, but be patient and don’t expect immediate change. 

Treating the condition is far more than a decluttering exercise. Although you may believe that if you can solve someone’s problem by clearing up for them, or paying professionals to do the job and give them more space to live, they can begin to live a more organised, happy life, clearing out their clutter does not help in the long term, and this can in many circumstances only make the problem worse. Being forced to relinquish their possessions can cause distress, anguish and depression and the person may resist all attempts to change their situation, feeling that they are being controlled or losing control over their life. Neither does a declutter deal with the reasons of why the clutter is there, or deal with the underlying mental health issues that led to hoarding behaviours. 

Unless there are real safeguarding issues where the person’s safety or the safety of others is at imminent risk, any interventions should be made in full agreement with the individual. Even when the person who is hoarding recognises that they have a problem, they can struggle to take the appropriate steps. A good first step is to suggest a visit to the GP, as they are able to refer the individual for therapy. The GP may also prescribe medication such as selective serotonin reuptake inhibitors (SSRIs), an antidepressant that helps manage symptoms of hoarding such as depression and anxiety.

One of the toughest aspects of helping someone with hoarding disorder is motivating them to start and stick with the process of changing how they accumulate items. Talking therapies such as cognitive behavioural therapy (CBT), which is the recommended treatment of choice for hoarding disorder, aims to teach coping skills that can help the person to manage their problems by changing the way they think and behave. 

Evidence suggests that both individual and group CBT can help. It also suggests that a person is more likely to derive benefit from a programme designed specifically for hoarding disorder. Research also suggests that it can help if the therapist visits the person in the place they live. This way they can understand more about the individual situation and help the person to work out how to make changes.

Because of the nature of the condition, therapy can be a long-term commitment, as it can take a long time to feel comfortable and take steps to address hoarding behaviours. Support and understanding from friends and family, together with therapy, can really help aid recovery and produce positive outcomes. 

Hoarding disorder can be treated and there is hope for returning to a normal life. Typically, individuals will continue to face challenges throughout their lives; however, staying in treatment decreases the chances that hoarding symptoms and clutter will return.

Conclusion

In this article we have examined some of the main misconceptions and stereotypes that are associated with hoarding, and people who hoard. Hoarding itself is a symptom of far more complex conditions and disorders that negatively impact a person’s usual day-to-day activities, and their relationships with friends, family and others, and can cause isolation, and even physical, emotional and mental ill-health. 

Stigmatising or being judgemental towards people because they are experiencing the symptoms of a serious, complex mental health condition is a cruel and unhelpful attitude, which does little to help dispel the many misconceptions and stereotypes that surround the condition.

It is crucial for people to understand that hoarding disorder is not just a simple behaviour that can be easily cured by decluttering and being more restrained and organised; it develops as a result of underlying psychological and emotional issues that require understanding, support and treatment. Getting support takes a lot of courage, but with the right help, resources and treatment it is possible to overcome this behaviour.