A Look at Diogenes Syndrome
Pages 45 - 46
Medical advances and public health strategies have led to a 30-year increase in life expectancy since the dawn of the 20th century.1 As older persons are living longer, expectations about their health and quality of life are increasing. In this regard, additional strides have been made to ensure that our nation’s elderly population not only receive the healthcare that they need, but are reserved the right to live their lives independently with dignity. Unfortunately, over the most recent decades, an increasing number of elderly individuals in the United States have been found to be living in squalor without access to medical assistance. Additionally, many older persons do not have adequate social networks and are apathetic about their living conditions. Some may argue that these conditions are a personal choice and are at the heart of being a free and independent adult. However, is it not a prerequisite to have sound judgment in order to make a lifestyle choice?
Senile squalor syndrome, otherwise known as Diogenes syndrome (DS), is a complex spectrum of behaviors found in persons who are living reclusively, and is becoming a growing concern as the elderly population increases. DS is characterized by an extreme self-neglect of environment, health, and hygiene, combined with a compulsive hoarding of refuse and the patient’s complete denial of his or her surroundings or symptoms.2
In this article, we will engage in a critical discussion of DS based on three actual case examples. These case presentations call attention to this seemingly forgotten population of individuals who are deemed not only risks to themselves, primarily due to chronic untreated medical conditions or acute incidents such as falls, but also to the public, because of the hazards that the hoarding and unsanitary living conditions present. This article examines various possible etiologies of DS, including the complex interaction of environmental and psychopathological factors, and reviews treatment options, including behavioral, social, and pharmacological interventions. By increasing awareness of DS, it is the objective of this article to improve the outcome for this at-risk population.
Ms. W was a 78-year-old white woman, who was a retired office clerk with no previous psychiatric history until after the death of her husband 7 years earlier. She was brought to the attention of the police when her neighbors reported an offensive odor emanating from her home. Forced entry was necessary after Ms. W would not answer the door. Officers discovered a filthy living space, cramped with all kinds of refuse, including decomposing food and excrement. The patient was found in the living room, attired in a winter coat in the middle of August with her hair matted and her skin ingrained with dirt. Upon evaluation in the emergency department (ED), the patient was hostile, insisting that she be left alone. She was admitted involuntarily to the psychiatric unit of the hospital due to an inability to care for herself. She refused to provide collateral information, stating that it would make her position more vulnerable for further exploitation. Ms. W blamed the entire state of New Jersey and its “flawed system” for what she called her “life’s disruption.” She remained isolated and suspicious of the staff’s motives when they approached her. Superficial cooperation was obtained with the promise of accelerated discharge. Arrangements were made for a day program, a daily home health aide, and a weekly cleaning service, and an appointment was made for the patient to see a primary care physician.
Mr. J was a 92-year-old white man, who was a retired construction worker with no known psychiatric history. A police officer came to his home after concerned neighbors reported no activity in his house for several days. All of the windows were boarded up and the doors were nailed closed, and, upon forced entry, the officer found that every square inch of the living space was filled with newspapers, piles of refuse, bottles filled with urine, and traces of decomposing food. A box containing the remains of the patient’s dead dog was also found. Later it was discovered that the house had neither electricity nor a working toilet. Mr. J was brought to the ED and was admitted to the psychiatric unit of the hospital for an inability to care for himself. He was also admitted to the internal medicine service to conduct a thorough medical assessment including coronary artery disease workup. He was hostile and resentful throughout his stay, refusing to talk to anyone. The patient’s home was condemned, and arrangements were made for him to share a subsidized apartment with a sibling. All efforts to initiate psychiatric assistance in terms of medication and self-care skills were rejected, and Adult Protective Services (APS) was notified.
Ms. K, a 70-year-old Asian woman, was visited by a concerned neighbor, who found her living in filth with hoards of plastic bags on almost every surface of the sitting room. The only signs of sustenance were empty cracker wrappers and used teabags. It had been 3 months since the death of Ms. K’s husband when her living situation was discovered. Unlike the other two case patients, she was ambivalent about ED evaluation and subsequent hospital psychiatric unit admission. In the psychiatric unit, she was initially withdrawn and isolative, but with consistent encouragement she began to accept assistance and comply with unit policies. Ms. K was reunited with her estranged family, and the staff recommended that she attend the bereavement support group that met in her church. Arrangements were made for further psychiatric follow-up.
DS was named after Diogenes the Cynic (412-323 BC), the Greek philosopher who was best known for wandering the streets of Athens in the daylight with a lamp in search of an honest man, which was one of the reasons Plato described him as “Socrates gone mad.” The disorder was named after him because of the way he lived. Diogenes slept in a barrel, was often found begging, engaged in forbidden public habits, and was known to have initiated the practice of showing displeasure by displaying his middle finger to detractors and foes.3
DS was first described as a geriatric syndrome in 19662 because of its multifactorial etiology and association with functional decline. Most patients with DS are single or widowed and live alone, and their decline tends to be lengthy in duration.4 DS shares risk factors and characteristics with other geriatric illnesses, including falling, incontinence, and—most importantly—increased mortality. APS reported in 2007 that DS was the top cause for investigation and remains a prevalent but underdiagnosed health concern in many communities.5 Persons with the disease live in such extraordinary squalor that by the time APS arrives at the home, its investigators are forced to wear facemasks and other protective gear as a barrier from excrement, rodents, and layers of accumulated refuse. Unfortunately, DS is not usually identified until family members or neighbors notice odors emanating from the patient’s home, which can be months or even years after DS symptoms began. Invariably, these reclusive patients present with some form of physical illness such as cutaneous ulcers or neuropathy due to gross bodily neglect, as well as malnutrition related to their extreme isolation and refusal of assistance. The disorder is independent of socioeconomic status, with an incidence of 5 per 10,000 in patients age 60 years and older.2 Some persons with DS have prior psychiatric history, and most of these individuals have above-average intelligence, successful work histories, stable family backgrounds, and adequate social resources.6 At this time, DS does not fit clearly into the diagnostic criteria for any distinct mental illness as outlined in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision (DSM-IV-TR)7 or the International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10).8 Since DS is not officially recognized as a distinct and separate disease process, APS does not have a separate or distinct protocol for dealing with DS. Instead, DS is treated primarily as dementia. APS is notified in all cases where adults are suspected of suffering from self-neglect or from caretaker neglect.
Although the three case patients presented with different severities of DS, they each appeared to have both paranoid and schizoid personality disorders, with the fundamental deficit being the inability to relate to others. All of these patients had nonexistent or very limited social support. Both Ms. K and Ms. W manifested with the characteristic traits of DS after the deaths of their respective spouses, but both had been known to lead a lifestyle of isolation and aloofness before that. In the case of Mr. J, who had never developed intimate relationships, symptoms appeared to have worsened with age. These observations are consistent with Post’s view that DS is not a syndrome but merely an end stage of a personality disorder.9 Furthermore, these observations support Jaspers’ formulation of the social breakdown of the elderly. Jaspers stated that DS does not constitute a newly occurring psychopathological entity, as the whole picture is understandable from each subject’s personality and stressful life events.10 In addition, he emphasized that the characteristics of the premorbid personality play an integral role in the pathogenesis of the syndrome. The complex of personality factors, stress, loneliness, and somatic illness form a vicious cycle that results in a reclusive lifestyle, abandonment of basic social norms, and persistent refusal of help, as these individuals invoke the defense mechanisms of withdrawal and denial of need.10
Multiple hypotheses have been made to explain the underlying psychopathology of DS. Obsessive-compulsive disorder and obsessive-compulsive personality disorder are most frequently proposed11; paranoid psychoses and mood disorders have also been suggested.12 In addition, it has been suggested that early stages of frontal lobe dementia may present with DS features, including personality changes, self-neglect, lack of concern, loss of initiative and insight, and paranoid symptoms.13
The most effective approach in treating a self-neglecting older individual is establishing a positive therapeutic relationship with a particular caseworker. The establishment of rapport and trust will depend largely on the particular worker’s persistence and ingenuity.14 Day care and community care are the main lines of management rather than hospitalization. The use of selective serotonin reuptake inhibitors to manage the compulsive hoarding behaviors and atypical antipsychotic agents to manage the paranoid symptoms have been reported.15 A concrete approach to home safety, including preventing additional clutter, establishing a cleaning plan, discarding objects, and organizing the living space, has been successful in assisting older adults in regaining a sense of control over their environment.15
Nearly half (46%) of persons with DS die within 5 years, possibly due to physical complications of the syndrome.16 Noncompliance with treatment and follow-up are common in patients with DS; thus, the outcome and prognosis of the syndrome are poor despite efforts and care.4,17 Follow-up visits at the homes of persons with DS have shown that only a few lived in better circumstances than they had previously.4,17 One study found that only those persons without significant cognitive impairment could sustain themselves in the community with the help of home health aides, social workers, and community psychiatric nurses.17Conclusion and Future Research
As stated earlier, DS does not fit clearly into the diagnostic criteria for any distinct mental illness as outlined in the DSM-IV-TR7 or the ICD-10.8 DS appears to cross cultural and international lines.17 A DS case study in China has revealed an interesting correlation regarding prior occupational functioning and occupational choice. Particularly, this study found that subjects had a prevalence for occupations related to semiskilled or unskilled labor positions (ie, housemaid, cinema usher, manual laborer, construction-site worker, driver).17 However, this occupational finding was not demonstrated to be universal or an absolute factor related to DS, since another case was found to have had skilled training as a registered nurse.17 Despite conflicting evidence, occupational choice and occupational functioning may still be useful as possible factors to add to the matrix of predisposing factors for DS.17 Additional research should be conducted in these areas to determine the actual significance of occupational factors and cultural attitudes as possible predisposing factors for DS. Further research is also recommended to explore both the accurate classification and the underlying biological pathology of DS. While there appears to be a paucity of real-time data regarding its complexities, continued recognition and reporting of cases may be useful to expand its existing clinical and theoretical framework. In time, the basic developmental work will evolve into the discovery of more efficient strategies for managing this multifaceted and prevalent geriatric problem.
The authors report no relevant financial relationships.
Dr. Iqbal is Program Director, Psychiatry Residency Program, Dr. Haghour-Vwich is Psychiatry Resident (PGY-IV), Dr. Badr is Assistant Program Director, Psychiatry Residency Program, Dr. Baron is Psychiatry Resident (PGY-III), and Mr. Fletcher is a medical student, Bergen Regional Medical Center, Paramus, NJ.