Treating people with hoarding disorder

Overview

CE credits: 1

Learning objectives: After reading this article, CE candidates will be able to: 

1. Identify the major characteristics of hoarding disorder and the risks associated with hoarding.
2. Understand the cognitive and neural underpinnings of hoarding disorder.
3. Discuss the most promising treatments and interventions for the disorder.

For more information on earning CE credit for this article, go to APA Monitor's CE Corner.

Randy Frost, PhD, remembers a client excitedly showing him a large plastic bag crammed with bottle caps. “She thought they were beautiful,” explains Frost, a professor of psychology at Smith College in Massachusetts who studies and treats hoarding disorder, a condition marked by a persistent difficulty discarding possessions, regardless of their utility or value.

“When I look at a bottle cap, my brain thinks, Where can I find a wastebasket? But in her brain, there are all of these rich associations about the color, shape, texture and what an artist might have been able to do with the bottle caps, even though she wasn’t an artist herself,” he says. “In many ways, hoarding is an ability to appreciate physical characteristics that goes far beyond what the rest of us can do.”

That blessing is also a curse. People with hoarding disorder can become overwhelmed by the sheer volume of the stuff they can’t let go. At its worst, the cluttered piles of possessions can limit functional living space, anger and alienate family members—and create a public health hazard.

While hoarding is complex and hard to treat, in the last few years, psychologists have made progress toward better understanding the cognitive and neural underpinnings of the disorder and what kinds of treatments can help, Frost says. “It’s not just a clutter issue—in fact, there are people whose lives are at stake.”

Hoarding disorder was only given its own diagnostic criteria in the most recent edition of the Diagnostic and Statistical Manual of Mental Disorders, the DSM-5, in 2013. “That was a big turning point,” says Carolyn Rodriguez, MD, PhD, director of the hoarding disorder research program and an associate professor at Stanford University. “Having a common definition has allowed for a better sense of prevalence, and is helping us to focus our research efforts.”

About 2.5% of the general population meets the criteria for hoarding disorder according to the current definition, with similar rates found in men and women and across developed countries (Postlethwaite, A., et al., Journal of Affective Disorders opens in new window , Vol. 256, 2019). Hoarding behaviors often emerge in adolescence or early adulthood, and tend to get worse with each passing decade. About half of people with the disorder have co­morbid depression, Frost says. Attention-deficit hyperactivity disorder and anxiety disorders also seem to be more prevalent among people with hoarding disorder than in the general population.

Before 2013, hoarding was considered a subtype of obsessive-compulsive disorder (OCD). While it’s still classified as a related disorder, it’s a phenomenon distinct from typical OCD, says psychologist David Tolin, PhD, ABPP, director of the Anxiety Disorders Center at the Institute of Living at Hartford Hospital and adjunct professor at Yale University School of Medicine. “Most people with hoarding disorder don’t have classic OCD symptoms—they’re not plagued by intrusive, recurrent thoughts.”

Hoarding disorder is marked by three major characteristics. The most obvious is difficulty letting go of material possessions. The second is excessive or compulsive acquisition of new items. Not everyone with hoarding disorder has the acquiring component, though most do, Frost says. The third is disorganization and an inability to prevent clutter. Unlike collectors who keep their collections neat and organized, people with hoarding disorder are more likely to have piles of paper in the bathroom and boxes of broken tools in the kitchen. “One thing that’s notable about hoarding disorder is the level of disorganization,” Rodriguez says.

That disorganized home seems to parallel a disorganization in cognitive functioning. In a review of research on the cognitive processes related to hoarding, psychologist Sheila Woody, PhD, director of the Centre for Collaborative Research on Hoarding at the University of British Columbia, and colleagues found that people with hoarding disorder showed deficits in sustained attention, working memory, organization and problem-solving. They also had lower visuospatial ability relative to healthy controls and to people with other mental health disorders ( Clinical Psychology Review opens in new window, Vol. 34, No. 4, 2014).

However, the results of research on cognitive deficits in hoarding are inconsistent, and scientists are still sorting out the nature of those deficits, says Kate Kysow, a doctoral student studying with Woody at the University of British Columbia.

Still, she adds, it’s clear that people with hoarding disorder perceive themselves to have a range of cognitive deficits. Tolin and colleagues, for example, found that those with the disorder self-reported more difficulties with memory, distractibility and attention. The degree of that subjective impairment correlated with the severity of their saving and acquiring behaviors ( Psychiatry Research opens in new window, Vol. 265, 2018).

Such cognitive problems all come together to undermine the reinforcement patterns that let most people let go of their possessions, Frost says. Typically, using an object reinforces one’s desire to keep it. That means that if a person never makes pancakes, he or she probably wouldn’t struggle too much to give away an unused griddle that’s taking up cupboard space. But for people with hoarding disorder, “the reinforcement pattern doesn’t seem to be with the usefulness of an object but with the meaning it holds,” Tolin says.

Of course, we all attach meaning to our belongings. We save ticket stubs for sentimental reasons, hang on to spoons and sofas for their utility, and keep artwork for its aesthetic value. But people with hoarding disorder are more likely to apply such meanings to every item—and often assign multiple meanings to each object, Frost says. “People with hoarding disorder have an inability to manage all of the associations they have with their possessions.”

To understand why, Tolin has looked for clues in the brain. Using fMRI, he and his colleagues found that compared with people with major depressive disorder and healthy controls, people with hoarding disorder have lower connectivity in brain regions associated with cognitive control, and greater connectivity in the default mode network, a brain network active when one’s thoughts are focused inward rather than on the outside world ( Journal of Psychiatric Research opens in new window, Vol. 113, 2019).

In earlier work, Tolin compared the neural activity of people with hoarding disorder, people with OCD and healthy controls as they made decisions about discarding their own possessions or items that belonged to others. When considering other people’s belongings, those with hoarding disorder showed less activity in brain areas that make up the salience network, which is involved in detecting and responding to relevant stimuli. But when deciding about their own possessions, people with hoarding disorder showed hyperactivity in the same brain areas ( Archives of General Psychiatry opens in new window, Vol. 69, No. 8, 2012). “This suggests people with hoarding disorder can’t make fine-grained decisions about what’s important because their brains are screaming that everything is important,” Tolin says.

Hoarding isn’t just a mental health disorder—it’s also a public health problem. Pest management can be difficult in the homes of people who hoard. Their windows and doors can become blocked and walkways impassible, making their homes unsafe not only for themselves but also for first responders such as firefighters. That’s why many cities have formed task forces to address the public health risks. Such task forces often involve social services, public health, housing code enforcement, and even animal control in cases where people hoard pets (Bratiotis, C., Health and Social Care in the Community opens in new window, Vol. 21, No. 3, 2013).

“Hoarding is distinct from many other mental health disorders because intervention often requires the engagement of the community,” says Kysow. Her adviser, Woody, is studying the outcomes of interventions by community-based hoarding coalitions such as the Vancouver Hoarding Action Response Team, a joint initiative between the local provincial health system and the fire and rescue prevention division (Bratiotis, C., et al., Families in Society: The Journal of Contemporary Social Services opens in new window, Vol. 100, No. 1, 2019). The activities of such coalitions and task forces vary from one community to the next but often include assessing homes for fire risk and safety, removing hazardous items, facilitating residents’ engagement with local crisis services, providing treatment referrals, liaising between residents and housing providers, and arranging for emergency shelter if necessary.

Woody’s early results suggest such task force interventions may help people reduce clutter and avoid eviction, though client avoidance and limited resources are common barriers. Unfortunately, such community interventions are often short on mental health experts, Kysow adds. “The goal of these coalitions isn’t to stop hoarding but to make homes safer and prevent eviction,” she explains.

Although hoarding task forces aren’t focused on mental health treatment, there is evidence that psychotherapy is helpful in treating the disorder. So far, cognitive-behavioral therapy (CBT) is the most well-studied intervention for hoarding. Frost and Gail Steketee, PhD, a professor of social work at Boston University, developed a 26-session CBT program specific to hoarding disorder, which they describe in a therapist guide (“Treatment for Hoarding Disorder,” Oxford University Press, 2013). The program includes a variety of components, including cognitive therapy to change beliefs about hoarding, practice in reducing excessive acquisition, practice in discarding possessions, skills training in organizing items and staying focused on tasks, and motivational interviewing to help clients stay engaged.

Tolin and his colleagues published a meta-analysis of studies on CBT for hoarding disorder and found that CBT resulted in a significant decrease in symptoms across studies, with the strongest effects on discarding behaviors. Despite those improvements, though, most participants still showed clinically significant hoarding behaviors after treatment ( Depression and Anxiety opens in new window, Vol. 32, No. 3, 2015). “People show significant improvement, but the majority still have hoarding disorder at the end of treatment,” Tolin says.

Indeed, while CBT can help reduce symptoms, it appears to be less effective for hoarding disorder than it is for other disorders, such as depression or anxiety. And it may not be the best option for every population, says Catherine Ayers, PhD, ABPP, a professor of psychiatry at the University of California, San Diego, who studies hoarding disorder in older adults. She found that CBT for hoarding disorder wasn’t as helpful for older adults as it was for younger people. That’s significant, she notes, given that hoarding disorder is more prevalent in older people and tends to worsen with age. To treat older adults with hoarding disorder, she created a treatment based on cognitive rehabilitation, which was modeled on interventions for people with traumatic brain injury. “We teach them how to categorize, plan and problem solve. They go item by item, deciding what to keep or discard,” she says. “Over time, they learn they can tolerate the distress of discarding.”

In a trial of the 26-session program, Ayers and colleagues found participants had a 40% reduction in hoarding symptoms, and the improvements were maintained at a follow-up six months later ( The Journal of Clinical Psychiatry opens in new window, Vol. 79, No. 2, 2018). While 40% fewer symptoms is a long way from a cure, she says that any intervention that reduces symptoms can have a big impact on people’s lives. “Numbers don’t capture the fact that people can now use their toilet or their kitchen sink. They’re having friends and family over for the first time in decades,” she says.

One reason hoarding is so hard to treat is that people derive great joy from their acquisitions and belongings, says Kysow. People with mental health disorders such as depression or anxiety often feel quite distressed, which can inspire them to seek treatment. But people with hoarding disorder don’t necessarily feel distressed about their cluttered homes—unless they’re faced with the thought of getting rid of their belongings. “One of the biggest treatment challenges is that they can be so motivated to continue hoarding,” she says.

Indeed, motivational interviewing is often an important piece of hoarding treatment, Frost says. But while psychotherapy can be helpful, there aren’t many mental health professionals who specialize in hoarding, and it can be difficult for people with the disorder to access or afford services. To address that need, Frost, Tolin and Steketee developed Buried in Treasures, a workshop using CBT principles that’s led by a nonpsychologist facilitator or peer. Buried in Treasures workshops are now offered in at least a dozen states and in countries outside the United States, Frost says. He and his colleagues showed that participants in the workshop had reduced hoarding symptoms compared with those in a waitlist control group ( Behaviour Research and Therapy opens in new window , Vol. 50, No. 11, 2012). And research by University of Florida psychiatrist Carol A. Mathews, MD, and colleagues found that people who participated in the Buried in Treasures program had improvement rates similar to those who received CBT interventions led by psychologists ( BJPsych Open opens in new window, Vol. 4, No. 4, 2018).

Individual CBT and the Buried in Treasures workshops typically take place in clinical settings. While TV reality shows feature in-home decluttering marathons, such interventions are logistically challenging for most clinicians. But researchers including Frost and Rodriguez are studying whether and how to include decluttering training in treatment. Frost is working with “clutter interns”—students who work closely with psychotherapists and visit clients at home to help them sort their belongings. And in a pilot study, Rodriguez found that combining in-home decluttering sessions with the Buried in Treasures workshop led to a decrease in hoarding symptoms, decreased clutter and improvements in the activities of daily living (Linkovski, O., et al., Journal of Psychiatric Research opens in new window, Vol. 107, 2018). She and her colleagues are also exploring virtual reality systems that scan a client’s home so they can practice sorting their own virtual objects in the clinic.

There’s still a lot to learn about what treatments work, for whom and why. “What we don’t know about hoarding disorder would fill a book,” Tolin says. He’s exploring differences in neural connectivity between people who respond well to CBT for hoarding and people who do not, hoping such clues will help researchers refine interventions. Similarly, Ayers says, an important next step for researchers will be to personalize treatments depending on a person’s neurocognitive profile.

Although treatments for hoarding disorder are still imperfect, Tolin says, hoarding is a topic that clinicians should raise with patients, especially those being treated for depression or anxiety. “We found a lot of patients in our anxiety disorders clinic actually have undisclosed hoarding disorder,” he says. “Many come in for something else and don’t mention hoarding unless you ask them.”

Fortunately, the research literature is growing. The International OCD Foundation offers assessments and treatment information and hosts an annual meeting on hoarding. “Friends and family members think the person should just be able to clean up, but this isn’t something that they choose to do,” Ayers says. “This is a chronic and progressive mental health condition that needs treatment.”