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.Treatment
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.