Australian data showed 1 in 1000 person over age 65 lives in squalor1 and a third of them with associated clutter. With an ageing population, Aged Care physicians and health professionals of Aged Care Assessment Services (ACAS) in Australia are increasingly referred patients whose standard of self-care and cleanliness have declined to such low levels that there is cause for public health concern. The responses can be variable depending on the individual assessor's experience, knowledge and attitude towards the condition, as well as the attitudes and responses of the person referred.
The symptoms of extreme self-neglect, domestic squalor, social withdrawal, apathy, tendency to hoard rubbish and lack of shame2 can occur in varying combinations. Different titles describing this condition are found in the literature, including Senile Breakdown,3 Diogenes Syndrome,4 Senile Recluse5 and Senile Squalor Syndrome.6 However, the condition is not restricted to the elderly7 and can be present in those with psychiatric disorders, dementia and long-standing alcohol abuse.8
Self-neglect is defined as failure to engage in activities that a given culture deems necessary to maintain a socially accepted standard of personal and household hygiene, and health status.9 These people often exhibit extreme reluctance to accept help. Domestic squalor describes living conditions that are filthy and disgusting and does not make any inference to the person.1 The passive accumulation of rubbish from failure to remove household waste is strictly speaking a form of neglect rather than hoarding.1
In contrast, compulsive hoarding is defined as: (i) the acquisition of a large number of possessions; (ii) subsequent failure to discard possessions; and (iii) resulting clutter that precludes the use of living spaces in the manner for which those spaces were designed.10 The severity of hoarding is proportional to greater emotional attachment to the possessions, reliance on possessions for emotional comfort and an inflated sense of responsibility of the possessions, causing difficulty in discarding.10
When Clark coined Diogenes Syndrome, he described a group of people with high intellect and education from a higher socio-economic background and normal mental state. These findings have not been replicated and other conditions, such as dementia, psychiatric illnesses and alcohol abuse, have been associated with self-neglect, squalor and hoarding.8 This raises the issue whether the presence of these symptoms constitutes a syndrome in their own right.
There is also debate about the suitability of the name Diogenes to describe the syndrome. Diogenes was a Greek philosopher whose core values were autonomy through self-sufficiency and contentment unrelated to material possessions; these values were not necessarily upheld by the people living in hoarded environments, squalor and self-neglect. Although not encouraged by experts in the field in Australia, the term Diogenes Syndrome has been useful in raising the issue among health professionals.
Not surprisingly, there is confusion in the application of diagnostic labels in clinical practice. Community health professionals are more likely to differentiate self-neglect, squalor, collecting and hoarding,11 rather than using an all encompassing term, such as Diogenes Syndrome. To illustrate some of these points, three case studies are described.
Case 1: The manager of a post office referred a 79-year-old woman to the ACAS with concerns about her health and state of mind. She was described as malodorous, unwashed and dishevelled. Footage from the security surveillance video revealed the patient voiding inappropriately in the post office in full view of customers seemingly indifferent to their reactions. She was known to have chronic schizophrenia and has long been estranged from her family.
On assessment, she was dyspnoeic on exertion, unsteady on feet and appeared unwell. She wore multiple layers of dirty clothes despite the warm weather. The ACAS assessor had to engage with her on the street before eventually gaining permission to enter her house, which was filthy with rotting food, human excrement, rubbish and dirt. The stench was nauseating. The house was sparsely furnished, there was no fresh food and all utilities were no longer connected.
On admission to hospital, the patient was dehydrated, disorientated, doubly incontinent and in atrial fibrillation with rapid ventricular response. Her investigations revealed that she had multiple nutritional and vitamin deficiencies, and significant anaemia. She deteriorated rapidly during her inpatient stay and eventually died of hospital-acquired pneumonia.
Underlying condition: chronic schizophrenia
Predominant symptoms: self-neglect and domestic squalor
Other symptoms: social withdrawal, apparent lack of shame
Absent: compulsive hoarding
Case 2: A neighbour referred an 87-year-old man who was frail, forgetful and described as eccentric. He had a history of bilateral frontal lobe haematomas from a previous road accident and alcohol-related dementia. The neighbour also reported vermin infestation and hoarding of junk in the house and garden.
On arrival at the house, the patient was seen wearing soiled pyjamas, emptying a bucket of urine on the nature strip. The patient's hair was matted and his finger nails were filthy. He was malodorous and had long and curled onychogryphotic toenails with black cheesy material between his toes, highly suggestive of long-standing fungal infection.
The property contained thousands of bicycles and machinery, the house was in a state of disrepair with a narrow passageway hoarded with newspaper, pieces of wood, bicycles, tins of paint and solvents. The ACAS assessors had to turn sideways and step over piles of newspaper to get through. The stove had a thick layer of blackened grease and spilt food, the exhaust fan dripped grease and the sink was filthy. The kitchen table and chairs were not visible because of the amount of material piled on them. The rest of the house was similarly hoarded.
This person was facing prosecution by the council for not responding to an order to clean-up the property. An application for a guardian and administrator was successful.
Underlying condition: frontal lobe dysfunction and alcohol-related dementia
Predominant symptoms: hoarding, self-neglect and domestic squalor
Cases 3: An elderly couple was referred by their local doctor. The initial assessment was performed at their doctor's clinic on the couple's request. They were articulate, but their embarrassment about the state of their house had prevented them from seeking help earlier even though they had difficulty coping. Several meetings took place at a fast food outlet before they eventually agreed to allow ACAS assessors into their house. To complicate matters, the wife became unwell and was admitted into hospital.
The house had three bedrooms and each one was full of hoarded possessions from floor to ceiling. The hoarded material consisted of books, magazines, board games, soft toys, sewing material and clothes. The front door was completely barricaded and the kitchen and shower could not be identified. They have not been able to make a cup of tea, cook a meal or wash themselves in their own house for 20 years. They have been eating at fast-food outlets and sponging themselves in public toilets. Both had diabetes, hypertension and obesity and obstructive sleep apnoea. They did not fulfil the criteria for Axis I psychiatric disorders and their neuropsychological assessments did not detect any dementia or cognitive impairment.
The husband repeatedly said that he could not understand how the hoarding situation became so extreme. He was ashamed of the state of his home and agreed to declutter the passageway, one bedroom, kitchen and bathroom. He also understood that decluttering was necessary for service providers to provide home cleaning services, meals and hygiene assistance. He was brought up in an orphanage and did not wish to live in an aged care facility. He signed a consent form before the intervention proceeded. He was on-site during the clean-up and his approval was sought before any item was discarded.
However, on the second day of the intervention, he became distressed and concerned about some missing items. He accused cleaning staff of stealing and said he had been ‘raped’. He wrote numerous complaint letters and reported the matter to the police. A case manager from a Community Aged Care Package was appointed for ongoing management and she was able to continue the cleaning process at a much slower rate that was more acceptable to him. His wife was discharged home when service providers were able to commence safely and they were able to utilise living spaces that were not accessible previously.
Underlying condition: nil noted
Predominant symptom: compulsive hoarding with strong emotional attachment to his possessions. There was secondary loss of use living areas required for self-care resulting in squalor living arrangements and unconventional strategies for food and hygiene.
The three cases highlight the complexity and diversity of patients who may have been labelled as having Diogenes Syndrome. The first two cases had underlying conditions, chronic schizophrenia and frontal lobe dysfunction, respectively, that can be associated with self-neglect, squalor and hoarding. In these instances, the use of the term Diogenes syndrome would distract from the fact that there were underlying conditions that may explain their clinical situation and would be deemed as inappropriate. In contrast, standard assessments of the couple in the third case failed to demonstrate cognitive impairment or any Axis I psychiatric illnesses.
An advantage of using descriptive terms is to alert service providers about the situation they would encounter. The degree of squalor and hoarding can be further defined using instruments, such as the Environmental Cleanliness and Clutter Scale12 and the Clutter Image Rating.13 The management of such cases is complex with high mortality rates for those who are hospitalised and high recidivism rates in survivors.3 While these issues may begin as problems for the individuals, they inevitably become problems for the community these individuals live in.
Until further studies into possible mechanism and aetiology are available, it may be more practical for clinicians to apply the terms self-neglect, domestic squalor or hoarding to describe the situation at hand. There are often several community agencies involved with the management of these people. A clear understanding of standardised terminology may lead to a more considered approach by community stakeholders, which hopefully will lead to a more successful outcome.