Diogenes Syndrome: When Self-Neglect is Nearly Life Threatening
Ms. G is a 72-year-old, single white female who lives alone and has no children. She was visited by local mental health services at the request of her neighbors, who complained about an intolerable smell and flies coming from her apartment. On observation from the entrance, the apartment was grossly dirty with an offensive odor. The carpets were soaked with urine and moldy feces. Piles of garbage, each about 5 feet high, restricted the living space. There was no furniture in the house, no refrigerator, and among the garbage the only signs of nourishment were cracker wrappers and soda cans.
Ms. G was in a state of gross physical neglect, dressed in layers of dirty clothing stained with urine. The exposed surfaces of her skin were deeply engrained in dirt. She minimized the seriousness of the damage in her apartment, refused to communicate, and vehemently resisted any professional help. Because of concerns that the patient was in imminent harm due to her dangerous living conditions, she was involuntarily hospitalized in an acute geriatric psychiatric unit. On admission, physical examination revealed arthritic deformities of both hands, and neglected venous ulcers were seen bilaterally on the ankles. The initial psychiatric assessment provided no evidence for dementia, or affective or psychotic disorders. Neuro-psychological evaluation showed no evidence of dementia. Overall, the patient’s general intellectual ability was in the average range. Executive functions, attention, memory, language, and visual and spatial perception were grossly intact. Ms. G had no prior psychiatric history of hospitalization or treatment. She denied any family history of psychiatric illness or history of substance abuse.
Her developmental and social history revealed an independent and isolative personality. Her mother passed away when she was 5 years of age. She had no siblings, and she lived with her father and stepmother. She described her relationship with them as “neutral.” At the age of 21, she moved out of her parents’ house, and since then has had little contact with her family. Ms. G reported a lifelong pattern of having no significant relationships and denied having any friends. She displayed a marked indifference to her social isolation and loneliness. Ms. G reported that she was always advanced academically and had earned a BS degree in sociology. The patient also stated that she has been working as an employment counselor for the past 20 years, but refused to give any phone numbers for her work. No collateral information could be obtained.
While on the inpatient unit, Ms G. showed lack of initiative for most activities. She used a wheelchair instead of ambulating, and continuously refused to shower or change her clothing. She continued to isolate herself in her room. Ms. G appeared aloof, was verbally aggressive and hostile toward the staff, and would not socialize with any of the patients on the unit. A diagnosis of personality disorder with schizoid and paranoid traits was considered. Laboratory tests were done to exclude organic causes. This included thyroid function tests, vitamin B12 and folic acid levels, urinalysis, urine toxicology, complete blood count, blood chemistry, and computerized tomography of the head. The significant findings were: low hemoglobin level (8.9 g/dL [12-16 g/dL]), low hematocrit level (26.4% [37-47%]), low serum iron level (16 g/dL [35-175 g/dL]), and upper-normal iron-binding capacity (389 g/dL [250-400 g/dL]), suggesting that the patient had iron deficiency anemia possibly due to malnutrition.
Ms. G strongly opposed her hospitalization and alleged that her lifestyle was the expression of her personal freedom. She also exhibited paranoid ideations toward the staff. She was started on risperidone 0.5 mg orally twice per day; however, she refused to take any medications. After three weeks of hospitalization, she was discharged from the hospital. Ms. G declined the social services offered to her at the time of discharge and did not comply with her follow-up plan. The patient was found to be competent to make her own decisions, and she only accepted assistance from a longtime friend of hers, who promised to help her clean her apartment.
Diogenes syndrome is a behavioral disorder of the elderly. The cardinal features of this condition include extreme self-neglect, domestic squalor, and tendency to hoard excessively (syllogomania). This is associated with self-imposed isolation, refusal of help, and marked indifference or lack of awareness.1 Diogenes syndrome has been referred to as senile breakdown, social breakdown, senile squalor syndrome, and messy house syndrome. In 1966, Macmillan and Shaw2 were the first to suggest that senile breakdown in the standards of personal and environmental cleanliness is a syndrome. Clark and coauthors3 appointed it the name “Diogenes,” inspired by the 4th century bc Greek philosopher Diogenes of Sinope, who advocated the principles of self-sufficiency, freedom from social restraints, and rejection of material values. They explained that it may represent stress-related defense mechanisms of the elderly, or may be related to the natural aging process.
In 1982, Post4 used the term senile recluse and argued that it is not a syndrome but merely an end stage of personality disorder. Since then, several case series of the syndrome have been reported. According to the literature,5,6 these patients are described as aloof, domineering, suspicious, aggressive, and obstinate. The disorder is not specific to a certain socioeconomic status and is equally prevalent among men and women in the age range of 60-90 years. Most are single or widowed, living alone, and their decline tends to be lengthy in duration. Some patients have a prior psychiatric history. Noncompliance with treatment and follow-up are almost universal. Physical illness, such as pneumonia and multiple nutritional deficiency states, is common, and the mortality rate can be high. Most patients studied have above-average intelligence, successful work histories, stable family backgrounds, and adequate social resources.
Multiple hypotheses have been advanced to explain the underlying pathology. Obsessive-compulsive disorder and obsessive-compulsive personality disorder are most frequently described,7 followed by paranoid psychoses and mood disorders.8 It also has been suggested that the early stages of frontal-lobe dementia may present with features of Diogenes syndrome. This includes personality changes, self-neglect, lack of concern, loss of initiative and insight, and paranoid symptoms.9 Diogenes syndrome does not fit clearly into our current Diagnostic and Statistical Manual of Mental Disorders, fourth edition-text revision (DSM-IV-TR)10 or International Statistical Classification of Diseases and Related Health Problems, tenth edition (ICD-10)11 diagnostic criteria, as currently only obsessive-compulsive disorder specifically lists hoarding as a symptom, and other features of the disorder are included in many diagnoses including dementia, mental retardation, schizophrenia, delusional disorder, and personality disorders (Table).6,7,9,12
This case demonstrates almost all the typical features of Diogenes syndrome. Ms. G demonstrated a lifelong pattern of isolation, inability to establish relationships, compulsive behavior, and paranoia that slowly progressed into social breakdown, characterized by severe self-neglect that could not be explained by the severity of her physical illness or lack of social support. Ms. G did not fit the criteria for any DSM-IV-TR10 Axis I disorder. One of the possible differential diagnoses was depression, due to her apparent apathy and lack of motivation. However, she did not display depressed mood or vegetative features, and had no sense of guilt, inadequacy, or suicidal ideation. Although the patient was suspicious, guarded, and evasive, she did not display any distinct delusions or hallucinations that would suggest a diagnosis of delusional disorder or late-life schizophrenia. Ms. G’s psychosocial history and lifestyle revealed a pattern of schizoid, avoidant, obsessive-compulsive, and paranoid traits.
The analysis of our case appears to support Karl Jaspers’ formulation of “social breakdown of the elderly.”13 He proposed that this condition does not constitute a newly occurring psychopathological entity, as the whole picture is understandable from each subject’s personality and stressful life events. He emphasized that the characteristics of the premorbid personality play an integral role in the pathogenesis of the syndrome. His view of this syndrome was that it represents a lifelong subclinical personality disorder, probably of a schizoid or paranoid type, that turns gradually into gross self-neglect and social isolation. This deterioration is precipitated by stressful life events, such as loss of a spouse or aging by itself, and is further aggravated by increasingly debilitating physical problems. Karl Jaspers13 called the social breakdown of the elderly “a personality based abnormal emotional reaction development or adjustment disorder.” He explained that the complex of personality factors, loneliness, stress, and somatic illness form a vicious cycle, resulting in a reclusive lifestyle, abandonment of basic social norms, and persistent refusal of help as they invoke the defense mechanisms of withdrawal and denial of need.
Diogenes syndrome still raises many unresolved issues. Although it is associated with an increasing number of psychiatric conditions (Table), the investigation of the psychopathological or nosological links with the concomitant disorders is still lacking. Management is also a difficult issue. Patients’ continued refusal of help gives rise to complex ethical and medicolegal issues. Day care and community care are the main lines of management rather than hospital admission. Several studies have utilized selective serotonin reuptake inhibitors to treat the compulsive hoarding behaviors. Atypical antipsychotic agents have been used when paranoid symptoms are present. A concrete approach to home safety, including preventing additional clutter, establishing a cleaning plan, discarding objects, and organizing the living space, have been successful over time in assisting older adults in regaining a sense of control over their environment.12 Despite all efforts and care, the outcome of the syndrome is rather bleak. Follow-up visits showed that of those at home, only a few lived in better circumstances than previously. The prognosis is also poor, with 46% of the patients having a 5-year mortality rate, possibly due to physical complications.14
OUTCOME OF THE CASE PATIENT
Unfortunately, Ms. G refused follow-up care and had no further contact with the hospital.