Many of the things that we busy ourselves with have no apparent utility. Blogging, playing games, and collecting come to mind. To declare that we are compelled to do these things may be too strong, but we do pursue these activities with little deliberation and without concern as to their usefulness. The ubiquity of these pursuits suggests that these activities or their variants helped humans survive at some point and that they now rest on innate brain programs.
Collecting is one of the most gripping of these endeavors. Although collections of art and a few other objects can create wealth, most collectors acquire things simply because they wish to. The desire to get hold of every Saturday Evening Post, plastic Santa Claus, Kodak camera, or model locomotive cannot be justified on the basis of aesthetics or on any other grounds, but this sort of desire is widespread. Collecting can be expensive and the accumulated objects can take up a lot of space, but the majority of collectors do not run into trouble. They do not spend more money than they can afford, and they do not allow the collection to take over essential living space. However, the urge to collect can go awry, and when it does-as in hoarding-the consequences can be severe.
Because hoarding occurs in a substantial number of patients with neurodegenerative disorders, neurologists are likely to encounter this problem, but it may also arise as an issue with patients who visit a psychiatrist. Until recently, clinicians had little to offer these patients or their caregivers. Compulsive hoarding has been recognized and documented for a long time, can cause severe impairment, and presents intriguing psychopathology, yet it has received little systematic study. The origins of hoarding have been obscure and, until recently, there has been no effective treatment. If clutter in a hoarder's home leads to a health crisis or a complaint from neighbors, the health department or another state agency may arrive and, to the hoarder's great distress, clean the place up. However, as soon as the authorities leave, newspapers, mail, and assorted odds and ends will once again pile up.
This scenario is becoming less common, thanks to research from a handful of neurologists, psychiatrists, and psychologists. Over the past decade, these investigators have started identifying the neuroanatomical and psychological underpinnings of hoarding and have come up with a promising treatment. In part because of this research, the media have given increased attention to hoarding (eg, Oprah covered it on a show in May 2005), and Web sites and other resources are now available to assist in the recognition and treatment of hoarding. New research findings offer psychiatrists some guidelines for assessing and managing these patients.
Hoarding is explicitly mentioned in DSM-IV as a symptom of obsessive-compulsive personality disorder and it is seen as well in a raft of other conditions, including traumatic brain injury, Prader-Willi syndrome, tic disorders, mental retardation, and neurodegenerative disorders. Because hoarding also appears in the absence of any other pathology and can result in severe impairment, some believe that hoarding should be considered a syndrome or entity in its own right. But for now, neither the clinical community nor the standard nomenclatures recognize it as a diagnostic entity.
In Russian writer Nikolai Gogol's novel, Dead Souls, published in 1842, an elderly and wealthy landowner named Plushkin is described. He possesses more than a thousand serfs and owns storehouses and mansions, yet he lives in a miserable, filthy house that is crammed with old silver, glassware, jewelry, oil paintings, and china, mixed with old rags, manuscripts, ink-encrusted pens, broken furniture, old clothes, shoes, and rugs. These things occupy most of the space in his house to the point that the house is almost uninhabitable. Despite his enormous wealth, this gentleman's hair and beard is unkempt and he is dressed in ragged and filthy clothes, wearing a stocking around his neck instead of a tie.
Gogol touched on the salient features of hoarding behavior. People with this condition acquire and are unable to discard large numbers of worthless items. According to Randy Frost, PhD, a psychologist at Smith College in Massachusetts, what distinguishes hoarding from normal collecting and the tendency that many of us have to hold onto items we no longer need, is the extent to which the hoarder's stuff takes over his or her living space, and the impairment that the hoarding produces. Hoarders, said Frost, have a far greater tolerance for clutter than the rest of us. The incessant collecting can take a toll on the hoarder's time and energy, but it is the clutter itself that brings the most severe consequences.
What are the characteristics of hoarding?
The most commonly saved items by hoarders include newspapers, old clothing, bags, books, mail, notes, and lists. These items can accumulate to the extent that space is no longer available for essential activities, such as cooking, sleeping, and bathing. Frost, who has studied the psychological underpinnings of hoarding, pointed out that hoarding's harmful consequences range from failure to pay bills (they get lost in the clutter), to injury, and even death when a pile of refuse falls over. As with Gogol's character, severe self-neglect in elderly persons can accompany hoarding, resulting in nutritional deficiency and other health problems. Named Diogenes syndrome, after the Greek philosopher who lived in a barrel, this condition represents the most clinically severe end of the hoarding continuum. It calls for intervention that to be successful must be informed by a knowledge of hoarding behavior's psychological underpinnings, as well as by management procedures that work.
In the general population hoarding is rare, but exactly how rare is unknown, because there are no published epidemiological studies. Frost and associates1 surveyed public health departments and found that over a 5-year period they received 26 complaints of hoarding per 100,000 persons. As the authors point out, this figure seriously underestimates the prevalence of hoarding.
The condition in which hoarding appears most frequently is obsessive-compulsive disorder (OCD) (even though it is not listed as a diagnostic criterion). About 25% to 30% of patients with OCD have clinically significant hoarding compulsions. Because the prevalence of OCD is about 1% to 2%, this would put the prevalence of OCD-related hoarding at about 4 per 1000.1 Using figures such as this, Sanjaya Saxena, MD, a hoarding specialist at the University of California, San Diego, estimated that there are 1 to 2 million hoarders in the United States, and he considers hoarding a to be a major public health problem.
One study of hospitalized patients with dementia found that 22.6% engaged in clinically significant hoarding, and a study of patients in a geriatric psychiatry inpatient unit found a hoarding prevalence of 5%.2 Consistent with these data, Stephen Salloway, MD, director of neurology and the aging and memory program at Butler Hospital in Providence, RI, estimated that about 5% of his patients with dementia have clinically significant hoarding.
The rarity of hoarding and its bizarre qualities suggest that this behavior arises from highly aberrant psychological processes or brain activity. In fact, hoarding is a common, highly conserved behavior across species. Animal research has focused on food hoarding, but birds and other animals also collect aluminum foil, beads, and other brightly colored objects.3 In humans, the rare clinically significant hoarding that results in impossible clutter seems to be on a continuum with normal collecting and the universal tendency to hold onto clothes, books, and other items far beyond the point that they are used or needed.
Animal research has identified brain circuits and neurochemicals involved in food hoarding. Dopamine agonists stimulate it, serotonin agonists reduce it, and gonadal steroids and opiates also modulate this behavior.4,5 Electrical stimulation and lesion experiments implicate the prefrontal cortex, hypothalamus, hippocampus, and septum in the regulation of food hoarding.3
The onset of hoarding in patients with traumatic brain injury, stroke, and neurodegenerative diseases also points to the critical role of brain pathology in this condition. Recent studies have begun to pinpoint the specific brain circuits involved. In a positron emission tomography study of patients with OCD who were compulsive hoarders, Saxena and colleagues6 showed reduced glucose metabolism in the posterior cingulate gyrus, dorsal anterior cingulate gyrus, and cuneus.
Anderson and associates3 found that persistent hoarding behavior developed in 13 of 87 patients with brain lesions. All 13 had damage to the mesial prefrontal region. Salloway pointed out that patients with frontotemporal dementia seem especially prone to hoarding. He suspects, as do Anderson and colleagues, that hoarding arises when fronto-subcortical circuits that normally inhibit this behavior are interrupted.
Not surprising, genes may also play a role. Hoarding seems to aggregate in families; for example, patients who hoard were more likely to have first-degree relatives with hoarding symptoms than those who do not hoard.7 In OCD and Tourette syndrome, hoarding has been linked to specific alleles.7
Hoarding entails both an active component (collecting) and a passive one (failure to discard)-one or both of which may occur. Many hoarders-particularly those with OCD-show both features, but extraordinary clutter and the health consequences it brings can arise just from the failure to discard unnecessary items. Some hoarders have difficulty in discarding things because of their indecisiveness; others because of their emotional attachment to their possessions. As Frost pointed out, hoarders "apply emotions to a range of things that others would consider worthless. Where most people see an empty roll of toilet paper, they see art supplies."8
Still others do not discard items because they have executive dysfunction and other cognitive deficits that make it difficult to organize their belongings and to distinguish between items they need and those they do not. Not uncommonly, hoarding in the context of dementia takes this form. Effective clinical management of hoarders requires the identification of patients who accumulate clutter as a result of cognitive deficits and the need to address both the clutter and the primary condition of the patient.
Hoarding has been notoriously difficult to treat. Both clinical trials and case reports show that hoarding does not respond well to either the SSRI antidepressants or the psychotherapies that alleviate other OCD symptoms. Recently, Frost and colleagues9 developed a cognitive-behavioral therapy (CBT) for hoarding, which they are in the process of refining and testing (they recently got a grant from the NIH to support this work). Treatment is delivered in group or individual sessions and involves attention to compulsive acquisition, difficulty in discarding, and clutter or disorganization. The thoughts and emotions that sustain these behaviors are identified and their validity is challenged. Exposure and response prevention techniques are applied (eg, patients go on shopping excursions without buying anything and discard objects both in the group setting and as homework) and they learn methods of organizing their belongings. Preliminary results are promising. Patients treated with this form of CBT began to tolerate the anxiety associated with discarding objects, and they gradually reduced the clutter in their homes.10
Maria Mancebo, PhD, is applying this treatment in Providence, RI, and finds that patients do improve but that the going is slow. To achieve meaningful progress, she said, many require continued treatment beyond the usual 3-month period. CBT for hoarding has been developed for and applied to patients who have hoarding as a symptom of OCD. Nonetheless, some of the tactics used in the treatment, along with knowledge of hoarding's psychological underpinnings, can be applied in managing the hoarding that occurs in the context of brain injury, Alzheimer disease, frontotemporal dementia, and other neurodegenerative diseases.
In such patients, you are likely to hear about the hoarding problem from a family member or caregiver. Saxena pointed out that hoarding that occurs as a symptom of OCD usually has its onset in the late teens. When it starts after age 35, he said, it may well be "triggered by CNS lesions," so patients with late-onset symptoms warrant a full neuropsychiatric assessment, including an MRI scan. Because hoarders often neglect their health-they typically fail to take required medication and miss medical appointments-when they do show up, they need thorough medical attention.
Because it constitutes a significant health hazard, clutter must be tackled. It is important to distinguish the clutter of hoarding from the clutter that occurs because physical or mental impairment makes it difficult to clean up. In the latter instance, suitable cleaning help should suffice. If active or passive hoarding (or both) is a problem, refer the patient to a clinician who is familiar with CBT for hoarding, if there is one in your community. He or she will treat the patient or coach a caregiver in management techniques.
Alternatively, a caregiver can make good headway in reducing hazardous clutter by following the guidelines available at a number of Web sites, including those of the Obsessive-Compulsive Foundation (www.ocfoundation. org). The New York City Hoarding Task Force has prepared a series of reports on hoarding, including tips for managing it both in general and in the context of dementia. Community resources such as elderly services can also help.
Not all elderly patients who hoard have cognitive impairment. For those who do, the treatment approach should be tailored to the degree of impairment. All patients with cognitive impairment who live amid clutter can benefit from increased supervision and support. Not all clutter needs to be removed, just enough to reduce fire and health hazards. Often, this can be accomplished when a trusted family member or friend helps the patient organize possessions and identify spots for them. This type of sorting and organizing is far less distressing to hoarders than simply discarding their possessions.
Attempts, however well-meant, by family members or other caregivers to tidy up by tossing stuff out will alienate the patient and increase his isolation and resistance to any intervention. Anyone working with these patients must remain mindful of the sometimes excruciating anxiety they go through at the mere thought-let alone the act-of throwing out any of their things. A cornerstone of management-except in patients who are so cognitively impaired that they cannot participate in the process-is that the hoarder is the only one who discards his possessions.
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