The term ‘Diogenes syndrome’ was coined in 1975 by Clark et al, but this condition was earlier described by MacMillan and colleagues in 1966. Also referred to as senile squalor or social withdrawal in the elderly, this disorder is associated with an extreme form of self-neglect, a tendency to hoard rubbish, poor personal hygiene, domestic squalor, social alienation, and refusal of all help. It is believed that this condition might co-exist with dementia or obsessive compulsive disorder (OCD). Hoarding, which is believed to be a characteristic feature of this syndrome, has also been associated with other psychiatric disorders such as frontotemporal dementia, schizophrenia, delusional disorder, etc.
More often than not, such cases are brought to the attention of the social workers, relevant healthcare authorities or service providers, as such individuals could be a threat to themselves, as well as others due to syllogomania, which is the collection or hoarding of garbage. The main issue that arises in the treatment or management of this disease is the patient’s justification of the behavior, avoidance of social contact, and refusal to accept help. Another important aspect of the treatment is to determine if any coexisting medical or psychiatric condition is a precipitating factor for this syndrome. However, in some cases, there might not be any identifiable underlying cause. Poverty cannot be looked upon as a causal factor, as this condition has also been observed in elderly with good family background and socioeconomic status.
Symptoms of Diogenes Syndrome
Medical literature and studies conducted on this condition suggest that the incidence of this syndrome is about 0.5 per 1000 people in the age group of 60 and above, especially those who live alone at home. More than 50% of the patients are likely to be affected by substance abuse or conditions such as dementia, OCD, psychosis, depression, personality disorder, etc. Often viewed as a case of social breakdown in the elderly, this syndrome can be identified by the following symptoms:
➠ Syllogomania and Domestic Squalor
The term ‘syllogomania’ refers to the tendency of hoarding rubbish. It is one of the determining factors for the identification of the Diogenes syndrome. Though this syndrome itself is not mentioned in Diagnostic and Statistical Manual (DSM) of Mental Disorders (a manual published by the American Psychiatric Association that provides the criteria for the identification of the mental health disorders), syllogomania is recognized as a psychiatric condition in the fifth version of the manual. In most cases of the Diogenes syndrome that have been documented, the patient’s house contained an enormous amount of garbage, rotting food, useless items that should ideally be discarded, etc., which in turn caused a stench. Individuals affected by this syndrome live in appalling conditions. Their home is filled with dirt, which is why their house is often infested with rodents, cockroaches, etc. They are averse to even the idea of getting the home cleaned.
➠ Extreme Self-neglect
Self-neglect is a defining feature, as the patients are often not in a position to take care of their personal hygiene and appearance. They might not be able to follow a proper diet and take care of their health and social needs. As a result of delayed or lack of medical attention, they are often affected by skin problems (bruises, boils). They can be seen wearing dirty clothes. Their hair might be matted or unkempt. They might be undernourished, as they might not be following a diet that fulfills the body’s requirements. They are often anemic. There is a complete denial of the problem by the patient. The patients might even rationalize their condition, and don’t feel any shame for the condition of their house or themselves.
➠ Social Withdrawal and Refusal to Accept Help
Such people have minimal contact with the outside world, and prefer to live alone. They are often aloof, suspicious, and unfriendly. They are averse to contact with others, and are offended by offers of help to clean up the house or any other kind of assistance. They might consider such people to be hostile, and might condemn their attempts at offering help.
Management of Diogenes Syndrome
The affected people often continue to live in such deplorable conditions, unless a family member, acquaintance, or neighbor seeks assistance on their behalf. More often than not, this condition is observed in old people who are living alone. In such cases, neighbors might contact the concerned authorities due to the unhygienic conditions or stench coming from the affected person’s house.
The Right Way of Dealing with the Patient
Here are a few pointers for dealing with the elderly affected by Diogenes syndrome:
➠Though the patients often refuse to accept help, the authorities must make attempts to get their consent for house cleanup or anything else that might be required. It has been observed that the condition of the patient deteriorates when he/she is institutionalized against his/her will.
➠ An attempt must be made at understanding the patient’s situation or condition. Since the patients are often hostile or suspicious, they are most likely to retaliate if the healthcare workers or personnel from the agencies show pity or disgust. It is essential to be sensitive to the needs of the patient, while taking care not to overwhelm him/her. It is essential to be persistent in trying to establish a relationship, when it comes to a patient who strongly rejects the intervention or offers of help. One needs to understand that the patient is not aware of his/her situation, and might rationalize this behavior. Therefore, it would be best to start with small changes, so as to ensure the patient’s cooperation. The patient can turn hostile and suspicious, if big changes are made and might consider it as an invasion of his/her personal space. However, follow-ups can be intense once the patient agrees to the treatment.
➠ It is extremely essential that the patients are able to trust the healthcare professional or social worker. Even if the patient accepts help initially, the problem can recur. Usually, long-term supervision is required to ensure that the patient doesn’t get back to his/her old ways. Since such patients favor social isolation, it would be best to ensure that the interaction is limited to one social worker or nurse.
➠ There’s a lack of information on the pharmacological treatment. More often than not, a multidimensional approach is followed for the treatment. The treatment might involve the analysis of the patient’s medical or psychiatric history, cognitive testing, functional inquiry, identification of the underlying cause or risk factors, and the analysis of the patient’s socioeconomic background and his/her living conditions. The treatment plan can be decided when the physical and mental condition of the patient has been evaluated. For instance, in severe cases where the patient is severely dehydrated and malnourished, intravenous administration of fluids and certain drugs is required. Severe squalor can result in skin infections, wounds, and gangrene, which need to be addressed. In case of patients affected by mental health disorders, psychotherapy or behavioral treatment might be required.
➠ A very important aspect is the determination of the patient’s mental and physical capacity. More often than not, the patient who is deemed to be incompetent might have to be hospitalized or kept in a daycare facility or nursing home. If the authorities find that the patient’s condition has improved, he/she can be discharged. The patient can stay at home. However, follow-ups are required to monitor the patient’s condition and ensure that he/she lives in a hygienic manner, and the living conditions do not pose a threat to others. Home visits and intense follow-ups are required. Often house cleanups, food delivery, and other services are offered. If the patient is found to be incompetent, the best option is to keep the patient in a daycare/assisted living center or a nursing home, with persistent encouragement or contact from a single nurse or social worker who the patient trusts.
The major treatment issue while dealing with patients affected by Diogenes syndrome is their dislike for social contact and vehement refusal to accept help and medical intervention. The main challenge for the healthcare providers and social workers is to gain their trust. If this condition is diagnosed in the early stages, persistent social contact and encouragement can prove beneficial. Compulsory action should be a last resort, and efforts should be made to build a relationship with the patient so that he/she gives the consent for help. Efforts should be made to prevent the condition from worsening to such an extent that compulsory action is required due to the risks posed by the hoarding of garbage and domestic squalor.