Diogenes syndrome

What is Diogenes syndrome?

Diogenes syndrome, also known as senile squalor syndrome or hoarding disorder, is a disorder with extreme self-neglect, hoarding of garbage or animals, domestic squalor, social withdrawal, apathy, and a lack of insight into the problem and the need for help. People with Diogenes syndrome may also display symptoms of catatonia (a lack of movement and a lack of communication, often also with agitation, confusion, and restlessness).

Diogenes syndrome may occur on its own, usually in the elderly, or may be associated with other mental health conditions, such as psychosis or bipolar disorder.

Symptoms of Diogenes syndrome

Diogenes syndrome is sometimes diagnosed in people who are middle aged, but it usually occurs in people over 60 years old. Symptoms usually appear gradually over time.

Diogenes syndrome involves hoarding of large piles of rubbish and rotting food, and severe self-neglect, with very poor personal hygiene. It is also characterised by very poor living conditions with domestic squalor, social alienation, a lack of shame, and refusal of help.

The time span in which the syndrome develops is unclear, but it often seems to be a gradual decline until the problems caused by Diogenes syndrome become overwhelming.

In most cases, there is an abnormal possessiveness and patterns of hoarding in a disordered manner. In contrast, there have also been cases where the hoarded objects were arranged in a very organised and methodical manner.

The severe neglect usually results in physical collapse or mental breakdown. Most people with Diogenes syndrome do not get identified until they face this stage of collapse, mainly due to becoming very withdrawn from society and refusing help from others.

Other personality traits that can be seen frequently in people diagnosed with Diogenes syndrome include aggressiveness, stubbornness, suspicion of others, unpredictable mood swings, emotional instability and seeming to be out of touch with reality.

How common is Diogenes syndrome?

Diogenes syndrome is estimated to affect about 1 in 2,000 people aged 60 or over living at home each year. However, the figure may be higher because Diogenes syndrome may often go unrecognised.

The most common age range for people affected by Diogenes syndrome is 65 to 90 years, but it may occur in younger age groups. It appears to be equally common among men and women, but some researchers have found that Diogenes syndrome occurs more frequently in women than men, and generally more often in widows.

Although most reported cases have involved people who live alone, cases have also been described in brothers/sisters living together and in married couples. Some studies have reported women with children living in self-neglecting conditions.

Risk factors

Diogenes syndrome is often linked to one or more mental health conditions that include schizophrenia, obsessive-compulsive disorder (OCD), depression, dementia, addiction, especially to alcohol, and personality disorder.

Causes of Diogenes syndrome

Although most people with Diogenes syndrome come from homes with poor conditions, and many had been faced with poverty for a long period of time, these factors are not considered to be a definite cause for the syndrome.

Some people with this condition have had solid family backgrounds as well as being above average intelligence with successful professional lives. Therefore, Diogenes syndrome does not exclusively affect those experiencing poverty or those who had traumatic childhood experiences.

It is considered that a problem with the functioning of the frontal lobe of the brain may play a part in causing Diogenes syndrome.

However, it has also been considered that Diogenes syndrome is mainly caused by a severe reaction to stress. The loss of a close relative who was caring for the person appears to be a relatively common trigger, causing the deterioration in selfcare.

Diagnosing Diogenes syndrome

There is no test for Diogenes syndrome. The diagnosis is made by a mental healthcare professional (such as a psychologist or psychiatrist) taking a detailed history to identify the diagnosis, particular possible causes and the severity of symptoms, and to explore the possibility of any other physical or mental health conditions.

Treatment for Diogenes syndrome

It can often be very difficult when it comes to treating people with Diogenes syndrome, because many deny their poor conditions and refuse to accept treatment.

Refusing treatment and follow-up are common and so the outcomes of Diogenes syndrome are often poor despite efforts and care. Gentle persuasion is used initially, but sometimes enforcing treatment using the Mental Health Act is required, as people with Diogenes syndrome are often a serious risk to themselves and to others.

When under care, people with Diogenes syndrome must be treated in a way in which they can learn to trust other people, including the health and social care workers involved in their care.

General care

The care involves not only treatment of the underlying condition, but also an understanding of available service agencies. Day care and community care are the main lines of treatment rather than hospital admission. Day care facilities have often been successful with helping the person's physical and emotional state, as well as helping socialise with others.

Other interventions that are needed often include services inside the patient's home, such as the delivery of food, as well as helping to provide personal and home care.

Therapy

Providing therapy for people with Diogenes syndrome can be very difficult because of the person's resistance to help and treatments. However, forms of psychotherapy, such as cognitive behavioural therapy (CBT), may be useful.

Medications

The treatment needs to be adapted to the individual person and any associated physical and mental disorders. Antipsychotic medicines have been used when paranoid symptoms are present. The use of selective serotonin reuptake inhibitor (SSRI) antidepressants to manage depression and the compulsive hoarding behaviours may be considered.

Outlook

The long term outlook varies for each individual, depending on the severity of symptoms, other mental health conditions, and the acceptance or reluctance to receive treatment.

Because people with Diogenes syndrome tend to be diagnosed late, the reluctance to comply with help and treatment, and the complexity of underlying causes and associated mental health conditions, the outcome tends to be poor.

Results after hospital admission tend to be particularly bad. Research on the death rate during hospital admission has shown that approximately half the patients who need to be admitted to hospital die while they are in the hospital. A quarter of the patients can ultimately be discharged, while the other quarter need to be placed in long-term residential care.