Helping compulsive hoarders

Questions remain about what causes this disorder and how best to intervene.

Piles of newspapers stacked in the living room, leaving only a narrow path to the kitchen. Dozens of cats living in filthy conditions in a tiny house. Debris spilling out into the yard, prompting complaints from neighbors. All of these are signs of compulsive hoarding.

Although the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) does not list compulsive hoarding as a disorder, as we've reported in the past, this type of behavior traditionally has been viewed as a subtype of obsessive-compulsive disorder (OCD). About 25% to 30% of patients with OCD — or 0.4% of the U.S. population — develop hoarding behaviors.

But research has suggested that the problem may be more widespread. Hoarding symptoms can develop in patients with autism, schizophrenia, dementia, or mental retardation, as well as in healthy people. And the results of a community survey indicate that 5% of Americans may develop such behaviors.

Moreover, treatments that are effective for OCD — such as selective serotonin reuptake inhibitors (SSRIs) or cognitive behavioral therapy (CBT) — often do not help patients with compulsive hoarding. And preliminary neuroimaging studies suggest that compulsive hoarding and OCD activate different areas of the brain — providing further evidence that they are distinct syndromes.

Symptoms and progression

At Smith College in 1996, Drs. Randy O. Frost and Tamara L. Hartl developed the first systematic definition of compulsive hoarding — one that is now widely accepted. They described three core features of compulsive hoarding: accumulation of a large number of possessions that seem useless to others; living spaces so cluttered that they are difficult to use; and significant impairment resulting from hoarding behaviors. According to this model, people who are compulsive hoarders also are prone to indecisiveness, perfectionism, disorganization, procrastination, and avoidance.

But it's still not clear why some people with these traits become compulsive hoarders, while others do not. Studies indicate that hoarding behaviors typically begin at age 12 or 13, and progressively worsen as people age. But the problem may not come to light until people are elderly, when health problems, falls, fires, or complaints by neighbors lead to an inspection of living quarters. Less often, compulsive hoarding begins after a brain injury or a neurological condition damages areas of the cerebral cortex that are involved in decision making.

The problem often runs in families. About 85% of people who are compulsive hoarders report similar behaviors in one of their first-degree relatives — parents, children, or siblings.

Treatment options

Treatment of compulsive hoarding is challenging and often discouraging. The research has largely been restricted to patients with OCD. One small but frequently cited study compared 12 weeks of paroxetine (Paxil), CBT, or placebo in 38 patients with OCD (17 of whom were compulsive hoarders). The investigators found that while 67% of non-hoarders responded to treatment with medication or CBT, only 18% of compulsive hoarders did.

SSRIs. Although often prescribed for people who are compulsive hoarders, most studies have concluded that these drugs are ineffective. For example, several placebo-controlled studies in patients with OCD have found that those who have hoarding behaviors are less likely than those who are not hoarders to respond to SSRIs.

Only one small, uncontrolled study has reported that patients with hoarding symptoms respond as well to an SSRI as patients with OCD. The study enrolled 79 patients with OCD — 32 who were compulsive hoarders and 47 who were not — who all took paroxetine for 12 weeks. At the end of the study, about one-third of the patients in both groups had responded to treatment, and both groups had experienced nearly identical improvements in symptoms. However, critics have pointed out that the response to SSRI treatment by patients with OCD was lower than that reported in other studies.

CBT. Studies have also found that people who are compulsive hoarders are less likely than those without such behaviors to respond to CBT, and more likely to end treatment early. For example, a study that evaluated exposure and response prevention found that 31% of compulsive hoarders responded to treatment, compared with 46% to 76% of patients with OCD who were not hoarders.

Some investigators have tried to tailor CBT to make it more effective for compulsive hoarders. In a small pilot study, researchers at Boston University and their colleagues evaluated a version of CBT consisting of 26 individual sessions over seven to 12 months. Therapists also conducted home visits, helping patients sort and discard belongings. By the end of the study, clinicians using a standard instrument rated five of the 10 patients who completed treatment as much or very much improved.

In a follow-up study, the same research team evaluated a group form of CBT, consisting of 16 or 20 weekly two-hour sessions. All participants received two 90-minute individual home visits. The group approach was only about half as effective at reducing symptoms as the more intensive individual therapy.

Seeking better interventions

A small study suggests that combining a multifaceted form of CBT with medication might improve response. The intervention enrolled 190 patients with OCD, although only 20 of them had symptoms of compulsive hoarding. All participants underwent six weeks of intensive daily CBT, and most received medication. By the end of the study, 45% of the compulsive hoarders responded to treatment — although they did not benefit as much from treatment as the non-hoarders. But motivating people who are compulsive hoarders to undergo this type of intensive treatment may be difficult.

For now, clinicians, family, and friends who are concerned about someone who is a compulsive hoarder may need to monitor the person's well-being. Should health- or life-threatening conditions develop, alert social service agencies for support and assistance.

Samuels JF, et al. "Prevalence and Correlates of Hoarding Behavior in a Community-Based Sample," Behavior Research and Therapy (July 2008): Vol. 46, No. 7, pp. 836–44.

Saxena S. "Recent Advances in Compulsive Hoarding," Current Psychiatry Reports (Aug. 2008): Vol. 10, No. 4, pp. 297–303.

For more references, please see www.health.harvard.edu/mentalextra.