May/June 2011 Issue

Treating People Who Hoard — What Works for Clients and Families

By Jennifer Van Pelt, MA

Social Work Today

Vol. 11 No. 3 P. 14 TV reality shows can help and hurt people who hoard. Find out why and know what really works best for clients and the families who care about them. Popular “intervention” TV shows have begun dramatizing the clutter associated with hoarding: newspapers piled from floor to ceiling, clothes and linens stacked on furniture, stuff everywhere with only a narrow path to walk through a house. Extreme cases—where stray animals are packed into a small apartment or so many items have been accumulated that floors collapse—illustrate the severity of some instances of hoarding. Approximately 3% to 5% of the U.S. population has a hoarding disorder (Tompkins, 2011), but the disorder affects many more, destroying marriages and home life and alienating family and friends. “Media attention to hoarding has brought it out of the closet. People are more likely to talk about hoarding now,” says Terrence Daryl Shulman, JD, LMSW, ACSW, CAAC, CPC, founder/director of The Shulman Center for Compulsive Theft & Spending and an addictions counselor who works with hoarding cases as well as compulsive spending and theft. “TV shows like A&E’s Hoarders have brought attention to a very secretive, shameful disorder and therefore have encouraged people and their families to get help,” says Gretchen H. Placzek, MBA, LCSW, MSW, a psychotherapist at East Bay Family Wellness in California who specializes in treating anxiety and works with individuals and families in cases involving hoarding. The show Hoarders depicts follow-up with solid therapeutic assistance and guidance, she says, adding that media attention has possibly even encouraged professionals to research the disorder and gain expertise to better assist people who hoard and their families. However, the depiction of hoarding on TV has also contributed to misinformation about the disorder and its treatment. “The negative aspect is that the shows may be seen as exploitive, and they do not always highlight the intense pain and suffering that goes along with a hoarding disorder,” explains Placzek. Another downside, according to Shulman, is that hoarders may think “I’m not that bad” when viewing the extreme, shocking cases on TV, causing them to avoid or resist treatment. The hard work needed to change hoarding behavior is downplayed by focusing on sensational cases, says Gail Steketee, LCSW, MSW, PhD, a professor and dean at Boston University who has been researching hoarding since the mid-1990s and has coauthored numerous publications with Randy O. Frost, PhD, a psychologist and professor at Smith College, including their most recent book, Stuff: Compulsive Hoarding and the Meaning of Things. Her colleague, Christiana Bratiotis, PhD, LCSW, a postdoctoral fellow and Compulsive Hoarding Research Project director at Boston University, adds, “Sadly, these programs often portray an unrealistic intervention that minimizes the role of mental health treatment and sets up unrealistic expectations for hoarders and their families.” Hoarding is a chronic disorder that gradually worsens, often over a period of decades, says Bratiotis. TV shows give the impression that appropriate intervention can occur in several days and without longer-term cognitive behavioral therapy (CBT). “Professional organizers and clean-up companies are useful and necessary partners in the work, but they do not begin to be the totality of the intervention, and portraying that as the solution is to diminish the painful and difficult work needed to overcome a hoarding problem,” Bratiotis explains. Acknowledging the Problem

Hoarding treatment begins with a person acknowledging the underlying problems that fuel hoarding behavior. The reasons for hoarding differ depending on the person, and treatment is challenging because people who hoard often do not realize their behavior is a problem or they are socially isolated and ashamed due to the condition of their home. Sometimes, they resist treatment because they think it will involve simply clearing out the clutter. “Just cleaning out the stuff does not address the underlying psychological issues,” Shulman says. “It’s not a clutter problem; it’s a perception/thinking problem.”

According to Steketee, no single condition causes hoarding. Contributing factors or stressors may include the following: • being raised in a chaotic home or one with confusing family context, or moving frequently; • cognitive processing issues that affect decision making and problem solving; • attention-deficit disorder; • anxiety and/or depression; • excessive guilt about waste; and • genetics and family history because hoarding behavior runs in families. “Hoarding can also occur in people with dementia, schizophrenia, and obsessive-compulsive disorder [OCD],” says Steketee, “but it is not clear that the features and causes are the same.” Currently, there is a common misperception that hoarding is caused primarily by OCD or anxiety. But although anxiety or compulsion may contribute to hoarding behavior, researchers now believe hoarding is not a type of OCD, and anxiety is not the primary driving force, Steketee explains. For example, hoarders may experience anxiety or stress due to obsessive thoughts, such as grief over someone’s death or the loss of important things in their life, or perfectionist thinking. Hoarding helps prevent them from experiencing that anxiety or reduces the severity of it. Accumulating may be calming for the hoarder, Shulman says. “Focusing on ‘things’ deflects the focus from the thought processes actually causing anxiety,” says Shulman. “Hoarding may induce feelings of safety and security and/or reinforce identity,” adds Steketee. The exact causes of hoarding are still uncertain, and research on the physiology and psychology of hoarding is ongoing. Geneticists are working to identify genetic loci related to hoarding behavior, says Steketee. An imaging study found that cerebral blood flow in a patient with OCD and severe hoarding exhibited a certain pattern during the most severe hoarding symptoms, and the pattern changed when the patient’s hoarding behaviors improved (Ohtsuchi, Matsuo, Akimoto, & Watanabe, 2010). A review of epidemiological, neurobiological, and treatment studies concluded that compulsive hoarding may be a discrete disorder with its own diagnostic criteria (Pertusa et al., 2010). Currently, hoarding is not listed as a separate disorder in the DSM-IV but is mentioned as a symptom/criteria of OCD. However, a revision for the fifth edition, to be released in 2013, proposes that hoarding disorder be listed as a separate disorder under the heading of “OC spectrum disorders.” It is also likely to be removed from the criteria for OCD, says Steketee. Treating the Behavior

Despite ongoing debate regarding the causes and diagnostic criteria of hoarding, there is no question that therapy is necessary. Hoarding typically leads to social isolation from family members, and involving family in the therapeutic process appears to contribute to improvement of hoarding behavior. The first and most important component of family therapy is education. “Like any addiction, hoarding is a family disease; everyone is affected and each family member needs to be educated about it,” says Shulman. Families need to understand that hoarding is a disorder, and the treatment process is long. “Psychoeducation is almost always the first step in working with the families of people who hoard,” Placzek says. Family members must be educated about hoarding to have compassion and recognize it as a mental health issue. They need to understand that each accumulated item has meaning and value for the hoarder, she explains. Addressing support and validation concerning the anger and hurt that many family members feel is another important step. The therapist needs to make sure the family understands that without their support and help, the hoarder is unlikely to get better, only progressively worse, Placzek says. However, not all hoarders live alone and are socially isolated, and family therapy may be especially helpful when the hoarder lives with the family to deal with daily interactions during thin these situations. Impatience during the lengthy family therapy process is common, says Shulman. Often, “control drama” will erupt between the person who hoards and other family members, and this needs to be worked out to bridge the communication gap between them. For married hoarders, additional couples therapy is often required because the hoarder’s partner is often codependent when it comes to the hoarding behavior, says Placzek. Or the partner may be impeding progress for the hoarder undergoing individual therapy, adds Shulman. When the hoarder lives with young children, elders, or people with disabilities, family therapy must address these special family issues, says Bratiotis.

“Special protections must be taken to assure that these family members are safe and healthy and that the hoarding is not creating hazards that impact these vulnerable and protected people,” she notes. Anecdotal reports from practitioners suggest that family therapy can be very successful when addressing hoarding behavior, but currently, no published research exists on the outcomes of family therapy for hoarding. Unpublished research has focused on the value of involving family members to get the loved one who hoards into treatment when that person is reluctant to seek therapy and/or does not recognize the problem, says Steketee. However, research does support the benefits of cognitive and behavioral methods. Approximately 70% of people who hoard show improvement following 26 treatment sessions, Steketee reports. “Family therapy seems unlikely to be helpful unless the person who hoards also receives CBT to help them learn new skills, modify beliefs, and reduce discomfort that prevents them from discarding hoarded items,” she adds. Common approaches to individual therapy for hoarders includes motivational interviewing, CBT, and decision-making skill building. “Motivational interviewing is essential since many people do not have good insight into the extent of the problem caused by their clutter and collecting behaviors. We also train skills to address cognitive problems like decision making and organizing as well as problem solving. We help people modify mistaken beliefs about possessions using CBT, and we use behavioral exposures to discarding and to not acquiring to reduce discomfort with these activities,” Steketee explains. CBT using exposure therapy seems to be the best approach for hoarding treatment, says Placzek. Exposure therapy requires the hoarder to face his or her anxiety by organizing, sorting, and making decisions regarding what should be discarded and what will be kept while at the same time monitoring his or her anxiety level. The hoarder must go through this process to change maladaptive thoughts and, in turn, the hoarding behavior. Family therapy is adjunctive and supportive for those undergoing CBT for hoarding. “I use CBT to guide the client’s treatment and when I’ve engaged families, it’s been through a family systems perspective. Often family are significantly impacted by the problem of hoarding, especially when living in the home, and are highly invested in the outcome,” says Bratiotis. Family members may be able to serve as behavioral coaches throughout the CBT process, though this may require significant therapeutic work with the family members and the hoarder, she adds. Recently, researchers and psychologists have suggested using harm-reduction methods in family therapy to address hoarding behavior. Harm-reduction therapy focuses on helping family members develop a management plan for improving the safety and comfort of a hoarder’s home. For example, structural issues from the weight of accumulated items, the potential for fire, mold and dust, and vermin infestation may pose substantial risks to the person who hoards, especially an older adult who lives alone. According to the researchers who propose this method, harm reduction assumes that it is not necessary to stop all compulsive acquiring or completely clear the hoarder’s home to stop harm. This therapy process involves setting small, achievable goals to reduce the risk of harm in the home (Tompkins). In some cases, enlisting the aid of the local health department may assist the family in communicating the danger of hoarding to their loved one. When a hoarder shares the home with other family members, harm-reduction methods can be used to communicate the potential harm of hoarding behaviors for others in the home. People who hoard are most likely to improve when family therapy is combined with individual CBT and other interventions, such as medications to treat comorbid conditions (e.g., depression) or working with a professional organizer in the home. The impact of family cannot be underestimated, though. “Ultimately, success depends on how supportive, compassionate, and patient the family members are with the hoarder and on the level of motivation and commitment from the hoarder,” Placzek says. — Jennifer Van Pelt, MA, is a Reading, PA-based freelance writer with 15 years of experience as a writer and research analyst in the healthcare field. She has written on depression, attention-deficit/hyperactivity disorder, schizophrenia, mental wellness, and aging. References

Ohtsuchi, H., Matsuo, K., Akimoto, T., & Watanabe, Y. (2010). Fronto-limbic abnormalities in a patient with compulsive hoarding: A 99mmTc-ECD SPECT study. Psychiatry and Clinical Neurosciences, 64(5), 580-583. Pertusa, A., Frost, R. O., Fullana, M. A., Samuels, J., Steketee, G., & Tolin, D. (2010). Refining the diagnostic boundaries of compulsive hoarding: A critical review. Clinical Psychology Review, 30(4), 371-386. Tompkins, M. A. (2011). Working with families of people who hoard: a harm reduction approach. Journal of Clinical Psychology, 67(5), 497-506. Resources Web

• Children of Hoarders: www.childrenofhoarders.com • East Bay Family Wellness: www.eastbayfamilywellness.com/hoarding-ocd-too-much-stuff • International OCD Foundation Hoarding Center: www.ocfoundation.org/hoarding Books

• Buried in Treasures: Help for Compulsive Acquiring, Saving, and Hoarding by David F. Tolin, Randy O. Frost, and Gail Steketee • Compulsive Hoarding and Acquiring (therapist guide and client workbook) by Gail Steketee and Randy O. Frost • Digging Out: Helping Your Loved One Manage Clutter, Hoarding, and Compulsive Acquiring by Michael A. Tompkins and Tamara L. Hartl • Stuff: Compulsive Hoarding and the Meaning of Things by Randy O. Frost and Gail Steketee