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Because hoarding occurs in a substantial portion of patients with neurodegenerative disorders, neurologists are likely to encounter patients with this problem. Until recently, they had little to offer their patients or the patients' caregivers. Compulsive hoarding can cause severe impairment and presents intriguing psychopathology, yet it has received little systematic study, and no effective treatment is currently on the market.
Many of the things that we busy ourselves with have no apparent utility. Blogging, playing games, and collecting come to mind. To say that we are compelled to do these things may be too strong, but we do pursue these activities with little deliberation and without concern about their usefulness.
The ubiquity of these pursuits suggests that at some point they, or their variants, helped us survive and that they rest on innate brain programs. Collecting is among 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 feel like it. The desire to get hold of every Saturday Evening Post, plastic Santa Claus, Kodak camera, or model locomotive can't be justified on aesthetic or any other grounds, but this type of desire is widespread.
Although collecting can be expensive and the accumulated objects can take up space, the majority of collectors don't run into trouble. They don't spend more money than they can afford and they don't allow the collection to take over essential living space. The urge to collect, however, can go awry. When it does-as with hoarding-the consequences can be severe.
Because hoarding occurs in a substantial portion of patients with neurodegenerative disorders, neurologists are likely to encounter patients with this problem. Until recently, they had little to offer their patients or the patients' caregivers. Compulsive hoarding can cause severe impairment and presents intriguing psychopathology, yet it has received little systematic study, and no effective treatment is currently on the market. When clutter in a hoarder's home results in a health crisis or a complaint from neighbors, the health department or another state agency may visit to clear out the place. As soon as the authorities leave, however, the clutter will accumulate again.
Thanks to research by a handful of neurologists, psychiatrists, and psychologists, however, this scenario is becoming less common. Over the past decade, these investigators have begun identifying the neuroanatomic and psychological underpinnings of hoarding and have discovered a promising treatment.
A NEUROPSYCHIATRIC DISORDER
Hoarding is explicitly mentioned in the American Psychiatric Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition as a symptom of obsessive-compulsive disorder (OCD). It also is seen in a spate of other conditions, including traumatic brain injury, Prader-Willi syndrome, tic disorders, mental retardation, and neurodegenerative disorders.
Given the fact that hoarding also crops up in the absence of any other pathology and that it results in severe impairment, some believe that hoarding should be considered a syndrome or entity in its own right. For now, neither the clinical community nor the standard nomenclature recognize it as a diagnostic entity.
In his novel, Dead Souls, published in 1842, Russian writer Nikolai Gogol, describes an elderly and wealthy landowner named Plushkin. He possesses more than a thousand serfs and owns storehouses and mansions, yet he lives in a miserable, filthy house crammed with old silver, glassware, jewelry, oil paintings, china, old rags, manuscripts, ink-encrusted pens, broken furniture, old clothes, shoes, and rugs. In spite of his enormous wealth, this gentleman's hair and beard are unkempt, and he is dressed in ragged and filthy clothes, including a stocking around his neck instead of a tie.
Gogol touched on the salient features of hoarding behavior. People afflicted with this problem acquire and are unable to discard large numbers of worthless items. According to Randy Frost, PhD, a psychologist at Smith College, what distinguishes hoarding from normal collecting and from 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 causes.
The most commonly saved items 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-cooking, sleeping, and bathing. Frost, who has studied the psychological underpinnings of hoarding, points 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 Plushkin, severe self-neglect can accompany hoarding in elderly people, resulting in nutritional deficiency and other health problems. Named the 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 which, to be successful, must be informed by a knowledge of hoarding behavior's psychological underpinnings.
In the general population, hoarding is rare. Exactly how rare is unclear because no one has done an epidemiologic study. In surveying public health departments, Frost and his associates found that over a 5-year period, 26 complaints of hoarding per 100,000 people were received.1 As Frost points out, this figure seriously underestimates hoarding's prevalence.
The condition in which hoarding appears most frequently is OCD, even though it's not listed as one of the diagnostic criteria. 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
One study of hospitalized patients with dementia found that 22.6% engaged in clinically significant hoarding, and a study of patients on a geriatric psychiatry inpatient unit found a hoarding prevalence of 5%.2
Consistent with these data, Stephen Salloway, MD, director of Neurology and The Memory and Aging Program at Butler Hospital in Providence, Rhode Island, estimates that about 5% of the patients with dementia whom he sees engage in clinically significant hoarding behaviors. The rarity of hoarding behavior and its bizarre features suggest that it 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 Animal research has identified the brain circuits and neurochemicals involved in food hoarding. Dopamine agonists stimulate it, serotonin agonists reduce it, and gonadal steroids and opiates also modulate it.4,5 Electrical stimulation and lesion experiments implicate the prefrontal cortex, hypothalamus, hippocampus, and septum in the regulation of food hoarding.3
HOARDING AND BRAIN PATHOLOGY
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 are pinpointing the specific brain circuits involved. A positron emission tomography study of patients with OCD, including compulsive hoarding behaviors, showed reduced glucose metabolism in the posterior cingulate gyrus, dorsal anterior cingulate gyrus, and cuneus.6
Another study found that hoarding behavior developed in 13 of 87 patients with brain lesions.3 All 13 had damage to the mesial prefrontal region. Salloway points out that patients with frontotemporal dementia seem especially prone to hoarding. He suspects, as do other researchers,3 that hoarding arises when fronto-subcortical circuits that normally inhibit this behavior are interrupted. Not surprisingly, genes also may play a role. Hoarding seems to aggregate in families.
For example, in one study, patients with OCD who hoard were more likely to have first-degree relatives who exhibited compulsive hoarding behaviors than were patients who did not hoard.7 In both OCD and Gilles de la 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 components may be present in a compulsive hoarder. Many hoarders-particularly those with OCD-show both features. Some hoarders have difficulty in discarding things because of their indecisiveness, others because of their emotional attachment to their possessions. As Frost points 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 fail to discard items because of executive dysfunction and other cognitive deficits that make it difficult to organize their belongings and distinguish between items they need and those they don't. Not uncommonly, hoarding in the context of dementia takes this form. Effective management of hoarders requires that clinicians identify patients who accumulate clutter as a result of cognitive deficits and address both the clutter and the primary condition.
CAN IT BE TREATED?
Hoarding has been notoriously difficult to treat. Both clinical trials and case reports show that hoarding does not respond well to selective serotonin reuptake inhibitors or to psychotherapies that alleviate other OCD symptoms.
Frost and his colleagues recently developed a cognitive-behavioral treatment (CBT) for hoarding that they are in the process of refining and testing, with the help of a National Institutes of Health grant.9
Treatment is delivered in a group format and involves attention to compulsive acquisition, difficulty in discarding, and clutter and disorganization. The thoughts and emotions that sustain these behaviors are identified and their validity is challenged. Exposure and response prevention techniques are applied. For example, the patients go on shopping excursions without buying anything, or they discard objects both in the group setting and as homework. They also learn methods for organizing their belongings. Preliminary results are promising. Patients treated in this manner begin to tolerate the anxiety associated with discarding objects and gradually reduce the clutter in their homes.
Maria Mancebo, PhD, a research psychologist at Butler Hospital is applying this treatment in Providence. She finds that patients do improve but that the process is slow. To achieve meaningful progress, she says, many patients require continued treatment beyond the usual 3-month period.
Although the CBT program was developed for patients who hoard as a symptom of OCD, some of its tactics can be applied to the treatment of hoarding in brain-injured patients and patients with Alzheimer disease, frontotemporal dementia, and other neurodegenerative diseases. In such patients, you are likely to learn about the hoarding problem from a family member or other caregiver.
Because hoarding constitutes a significant health hazard, clutter is the first matter to address. It's important to distinguish whether the clutter is an effect of compulsive hoarding or is a result of physical or mental impairment such that the patient is unable to attend to his or her living quarters. In the latter instance, suitable cleaning help should suffice. If active or passive hoarding (or both) is the problem, refer the patient to a psychologist familiar with the CBT program for hoarding. He or she will treat the patient or coach a caregiver in management techniques. Alternatively, a caregiver can make headway in reducing hazardous clutter by following the guidelines available on a number of Web sites, including the Web site of the Obsessive Compulsive Foundation. 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 also can help.
A SENSITIVE APPROACH
Attempts, however well meant, by family members or other caregivers to tidy up the living space of compulsive hoarders by tossing out the clutter will alienate the patient and will increase his isolation and resistance to intervention. Anyone working with these patients must remain mindful of the excruciating anxiety they go through at the mere thought-let alone the act-of throwing out their belongings. A cornerstone of management-except for patients who are so cognitively impaired that they can't participate in the process-is that the hoarder be the only person who discards his possessions.
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