How to spot someone with hoarding disorder, and what pharmacy can do to help. Saša Jankovic reports
We’ve all got that drawer or cupboard at home full of ‘stuff’: a random assortment of things like cables – but not the appliances they once powered – foreign currency that can’t be spent anywhere any more and a bunch of keys that don’t open any doors in the house. Some of us even have proper collections: radios, beer tankards, postcards or sporting memorabilia, to name just a few.
But when does collecting become hoarding and what exactly does that mean? And at what points should the pharmacy team step in to help?
What is hoarding?
The World Health Organisation (WHO) has recently classified hoarding as a medical disorder – a move welcomed by sufferers and health care professionals alike as it reinforces the need for the condition to be taken seriously.
According to the WHO, the disorder is characterised by an ‘accumulation of possessions due to excessive acquisition of – or difficulty discarding – possessions, regardless of their actual value’.
NHS guidelines add that someone who has a hoarding disorder may typically have difficulties making decisions, struggle to manage everyday tasks, such as cooking, cleaning and paying bills and have poor relationships with family or friends.
How common is hoarding disorder?
Hoarding can start as early as the teenage years and gets more noticeable and more problematic in older age. It’s thought that around one or two people in every 100 have a problem with hoarding that seriously affects their life. The charity OCD UK says that hoarding disorder is seen more often in males than females, although more females present in clinical samples.
Causes of hoarding disorder
Psychologist Dr David Mataix-Cols from the Karolinska Institute says the causes of hoarding disorder are unknown, but it appears to run in families.
‘Studies involving twins suggest that, in adults, approximately 50% of the variance in hoarding behaviors is attributable to genetic factors, with the remaining variation being attributable to nonshared environmental influences’, he says. ‘Persons with hoarding disorder often retrospectively report stressful and traumatic life events preceding the onset or exacerbations of the disorder, but it is uncertain whether these factors are causally related.’
The reasons why someone begins hoarding can also be a symptom of another condition. For example, someone with mobility problems may be physically unable to clear the huge amounts of clutter they have acquired, and people with learning disabilities or people developing dementia may be unable to categorise and dispose of items. In some cases, hoarding is associated with self-neglect.
There are also mental health problems that can be associated with hoarding, such as severe depression, psychotic disorders such as schizophrenia and obsessive compulsive disorder (OCD).
Why is hoarding a problem?
The physical clutter – and mental strain – associated with a hoarding disorder can be a problem for several reasons, says OCD UK: ‘It can take over the person’s life, making it very difficult for them to get around their house. It can cause their work performance, personal hygiene and relationships to suffer. It can make cleaning very difficult, leading to unhygienic conditions and encouraging rodent or insect infestations,’ the charity says.
‘It can also lead to increased fire risk and trips and falls, making it especially difficult for older adults to get back up. The person hoarding is usually reluctant or unable to have visitors, not even allowing tradesmen in to carry out essential repairs, which can cause isolation and loneliness and lead to a loss of essential utilities.’
How pharmacy can help
Many people who hoard do realise they have a problem but may be reluctant to seek help because they feel extremely ashamed, humiliated or guilty about it.
It is this shame that makes it a hard condition to notice, according to Dr Mataix-Cols. ‘To be frank, I cannot imagine that many individuals with problematic hoarding will think about asking their pharmacist for advice because it is a very secretive condition that many do not want to talk about,’ he says, ‘You are much more likely to get questions from loved ones of the person who has the problem. If you get a question about hoarding, it is important to explain that it has recently been recognised as a bona-fide mental disorder by the WHO. Therefore, a referral to a mental health professional is the first port of call.’
For that, you would need to first refer the person to their GP, and in the meantime Heather Matuozzo, chair of Hoarding UK (HUK) and founder of Clouds End CIC (a social enterprise working with people suffering from hoarding disorder) suggests directing them to a local support group – although she adds that HUK can signpost to them.
Broaching the subject
Another challenge, according to Megan Karnes, founder/director of HUK, is that people with hoarding behaviour are not visually identifiable.
‘Most are well-kempt, and present as “fine”, which is why HUK feels that if a general assessment questionnaire were asked of everyone coming into pharmacy, many more people could be supported,’ she says. ‘We ask: “Can you sleep in your bed? Can you use your loo? Can you sit on your couch? Can you cook in your kitchen?” These questions open up a range of issues around mobility, repairs and so on, but can also help to understand that there may be hoarded materials.’
Dr Satwant Singh is professional and strategic lead common mental health conditions (IAPT) at London Hoarding Treatment Group and clinical director of HUK. He says the relationships that pharmacy teams develop with customers can be a huge advantage when it comes to helping people who you think may be hoarding.
‘There needs to be a rapport developed in the instance of repeat clients’, he says. ‘Start taking an interest in them and explore with the person why they are carrying a lot of things. Ask gentle, not intrusive, questions such as “have you been busy shopping, are you collecting?” etc.
‘Try not to use the words “hoarding” or “hoarder” – rather, talk about it being an issue for a lot of people in a normal way, saying things like “we all tend to collect things over the years and sometimes find it hard to get rid of them or want to ensure they go to a good home”.’
Treating hoarding disorder
Dr Mataix-Cols says while ‘there are no known drugs for hoarding disorder, the correct diagnosis will determine the best course of treatment’.
The treatments for hoarding disorder are very similar to those for OCD, with OCD UK saying “the most effective is the talking therapy cognitive behavioural therapy (CBT). Some people find they also need the additional support of anti-depressant medications to help them cope with the stress and anxiety of the condition, usually a form of anti-depressant SSRI (selective serotonin re-uptake inhibitor).
‘CBT will be combined with practical tasks and a plan to work on the hoarding problem. The therapist can also help the person develop decision-making strategies, while identifying and challenging underlying beliefs that contribute to the hoarding problem.’
Hoarding disorder is clearly more than just a messy nuisance. If not tackled, it is a problem that will probably never go away of its own accord, which is why pharmacy can have a life-changing role to play in spotting customers with hoarding disorder, and pointing them in the right direction to address and conquer it.