Strategies for Diagnosing and Treating Symptoms of Hoarding
By Suzanne Otte, MBA, MSW and Gail Steketee, PhD | August 19, 2011
Ms Otte is Hoarding Research Project Affiliate at Boston University School of Social Work and Dr Steketee is Dean and Professor at Boston University School of Social Work. The authors report no conflicts of interest concerning the subject matter of this article.
In North America, an estimated 30% of the population maintains a collection of some sort.1 The practice of collecting, in which individuals maintain collections of objects that are generally considered interesting and valuable is distinctly different from that of hoarding.2 Compulsive hoarding is characterized by the following criteria3,4:
• The acquisition of, and failure to discard, a large number of possessions
• Excessive clutter that precludes activities for which the living space was designed
• Significant distress or impairment in functioning caused by the hoarding
Hoarding has broad-reaching implications, including a substantial public health burden linked to occupational impairment, poor physical health, and demand for social services.5 For example, it is not uncommon for community public health departments to become overburdened with property complaints regarding unsanitary conditions and fire hazard risks, and the cost to address a problem (eg, repetitive clean-outs, repeated visits by health inspectors, multiple-agency involvement) is high.6 These costs have led to the establishment of community-wide task forces in a number of cities.7 However, efforts to reconcile the problem are often diminished by the relative unavailability or ineffectiveness of mental health services.8
In addition to the effects of hoarding on the community, family dynamics are often strained.9 Substantial distress, frustration, hostility, and rejection of hoarders are not uncommon.3 In a recent online study of hoarding, more than half of the participants were described as having poor or no insight into the severity of their hoarding behaviors, and family members’ attitudes of rejection were correlated with less awareness of illness among those who hoard.10
For the individual who hoards, outcomes may include substantial work impairment, eviction or threat of eviction, or having a child or elder removed from the home.10 In general, persons with hoarding problems seek treatment after age 40 years, although hoarding symptoms commonly begin in the early teenage years.11 Those who hoard tend to live alone and may have a family member (parent, sibling, older relative) with the problem.12-14
The prevalence of clinically significant hoarding in the general population ranges from 2% to 5%, and between 6 million and 15 million persons in the United States are affected, according to recent epidemiological studies.15-17 Hoarding appears to affect more men than women, although women are more likely to participate in research and seek treatment.17
Hoarding is a significant psychiatric problem that occurs at twice the rate of obsessive-compulsive disorder (OCD) and at almost 4 times the rate of bipolar disorder and schizophrenia.13 It has been linked with impulse control disorders and appears to have high comorbid rates of major depressive disorder (MDD), social anxiety disorder, generalized anxiety disorder (GAD), attention-deficit/hyperactivity disorder (ADHD), and personality disorders.18-26
What is already known about hoarding?
■ Clinically significant hoarding affects between 6 million and 15 million persons in the United States, according to recent epidemiological studies, occurring at twice the rate of obsessive-compulsive disorder (OCD) and at 4 times the rate of bipolar disorder and schizophrenia. It appears that hoarding is accompanied by high rates of comorbidity. A number of self-report and clinician-administered hoarding-specific measures aid in the assessment of symptoms and severity. Treatment for hoarding is guided by a cognitive-behavioral therapy (CBT) approach.What new information does this article provide?
■ Historically, hoarding has been deemed a subtype of OCD, although forthcoming evidence suggests there are more differences than similarities. Hoarding is under consideration for inclusion in DSM-5 as a stand-alone disorder. A set of provisional criteria for hoarding disorder has been proposed and will require further study in the future. A recent study conducted by Frost and colleagues that examined the largest sample of participants to date confirmed that major depressive disorder was the most frequently occurring comorbid condition (more than 50%) and that kleptomania was a factor in 10% of the sample. This article highlights treatment options for hoarding that are available to practitioners, including alternative approaches focusing on self-help, support group, and Web-based delivery models.What are the implications for psychiatric practice?
■ Individually administered CBT, following the protocol developed by Steketee and Frost, appears to be the most effective treatment, with a 70% to 80% rate of clinical improvement for patients who complete treatment. Given the expense and limited availability of individual treatment, alternatives, including group CBT, Web-based treatment, in-person self-help groups, and in-home coaching assistance, may provide sustainable and affordable approaches to this significant societal problem. Further research to better understand hoarding and to provide additional cost and resource-sensitive solutions is ongoing.Historically, hoarding has been considered a subtype of OCD, although recent evidence suggests that there are more differences than similarities.13 Studies of patients with OCD have shown an 18% to 40% frequency of hoarding in adults and children and adolescents, although, hoarding is identified as a major or primary symptom in fewer than 5% of cases.19,26-29 Early studies that support this finding were derived from measures that do not adequately assess the presence or severity of hoarding (ie, Yale-Brown Obsessive Compulsive Scale30).8 Recent studies have incorporated reliable and valid measures (eg, Saving Inventory-Revised [SI-R], Hoarding Rating Scale-Interview [HRS-I], Clutter Image Rating [CIR]) that assess specific symptoms of hoarding as well as changes in symptoms following treatment.8
Comorbidity and implications for diagnosis
The identification of hoarding as a subtype of OCD has influenced scientific understanding of its comorbidity. Progressive research efforts have advanced the definition and measurement of hoarding, providing a more reliable diagnosis and assessment of comorbidity.12,31,32 A recent study by Frost and colleagues (R. O. Frost, G. Steketee, D. F. Tolin, K. Glossner, unpublished data, 2011) examined 217 hoarding participants, the largest sample to date, who were recruited to meet diagnostic criteria for hoarding disorder (HD) currently under review for DSM-5.12 The study confirmed that a minority of participants with HD (fewer than 20%) also had OCD diagnoses and that MDD was the most frequent comorbid condition (more than 50%). This was followed by GAD and social phobia in approximately 25% of HD participants.
The rates for posttraumatic stress disorder were relatively low (7%), but the HD sample was more likely than OCD patients to have experienced a traumatic event as an adult or as a child. This finding is consistent with earlier research about the frequency of traumatic events among those who hoard.17,33,34 Inattentive ADHD was significantly more frequent in hoarding than in OCD (30% vs 3%), which supports the speculation that attention deficits are relatively common among those who hoard, but certainly this is not a universal characteristic.
It is not surprising that compulsive buying and excessive acquiring of free things were common among the hoarding sample (about 60%), and even the prevalence of kleptomania was surprisingly high at 10% of the sample. These findings confirm recent reports that more than 80% of people with self-reported hoarding acquire excessively.35 Obsessive-compulsive personality disorder (OCPD) was the most frequent personality disorder found among hoarding participants, even when hoarding was omitted from the criteria for OCPD.
Status of DSM-5 diagnostic criteria
Today, hoarding is cited in DSM-IV-TR as one of the diagnostic criteria for OCPD and, when hoarding is deemed severe, a symptom of OCD.12Hoarding has been a core diagnostic criterion for OCPD only since DSM-III-R and as a possible OCD symptom within the differential diagnosis section OCPD since DSM-IV.12,36 Given the presumption that hoarding was a symptom of OCD, many studies have evolved from this assumption and have influenced clinical understanding of the disorder.13 More recently, however, growing evidence supports the separation of hoarding from OCD.13,36-38
In the interest of clarifying the clinical phenomenon, increasing public awareness, improving identification of cases, and stimulating further research and development of effective treatments for hoarding, a set of provisional criteria has been proposed (Table).12 These will require further study in the coming years.
Theoretical model
The manifestations of hoarding (acquisition, difficulty with discarding, clutter), outlined in an emerging cognitive-behavioral model, are hypothesized to evolve from core vulnerabilities based on early life experiences, genetic predisposition, current mood state, and personality traits (Figure).4,39,40 On the basis of this model, cognitive information processing deficits (focusing attention, decision making, organizing, and possibly perception) are thought to be persistent factors in generating hoarding. A combination of early experiences and cognitive challenges result in mistaken beliefs about and attachments to possessions, with resulting negative emotions that lead to avoidance behaviors (saving unneeded items) and clutter. In addition, objects that evoke feelings of positive attachment and experiences of pleasure may result in excessive acquiring and clutter.8
CBT methods and outcomes
The elements of mental health treatment for hoarding are based on the theoretical model for this multidimensional problem. The protocol uses a manualized cognitive-behavioral therapy (CBT) approach that incorporates assessment and goal setting, organizing and problem-solving skills training, exposure practice methods to reduce acquiring and remove clutter, and motivational interviewing to address patient resistance when it arises during treatment.2,8,41
The tools to measure hoarding symptoms and severity include the SI-R, a 23-item self-report questionnaire that assesses difficulty with discarding, clutter, and excessive acquisition; a score of 41 or higher typically indicates a clinical hoarding problem.31 The HRS-I helps clinicians make a diagnostic assessment of the 5 main features of hoarding (clutter, acquisition, difficulty with discarding, distress, impairment), each rated on a 0 to 8 scale; the HRS-I can also be used as a self-report scale.32 The CIR is a pictorial measure of in-home clutter severity intended for use by patients, family members, clinicians, or independent assessors.42 The Saving Cognitions Inventory is a 24-item self-report measure of beliefs experienced by patients when they attempt to discard items; subscales of this measure include emotional attachment, concerns about memory, control over possessions, and responsibility toward possessions.40
The most effective approach to date appears to be individually administered CBT, following the model and methods of Steketee and Frost.2 A recent pilot study of 10 completers and a controlled trial with 37 completers yielded rates of 70% improved or much improved according to the therapists and 80% according to patients. Overall, 60% of patients showed clinically significant improvement following 26 sessions of individual CBT that included monthly in-home visits.10 Group interventions that included 20 sessions of CBT were only slightly less effective and appear to offer considerable potential for cost-saving solutions.22
Further research is necessary to examine methods to enhance cognitive function (eg, attention, executive functioning) to improve the effectiveness of CBT.43 Expanding study inclusion criteria to allow men and persons from other cultures, races, and socioeconomic status will help generate more information about outcomes and strategies appropriate for all persons who hoard.
Cost-saving, stepped-care strategies for delivering CBT
The delivery of in-person, individual or group therapy for hoarding depends on skilled clinicians trained to treat persons with this problem. Because individual and even group treatment can be expensive and unavailable to many individuals with this highly prevalent condition, alternative approaches have focused on the application of self-help bibliotherapy, online and in-person support groups, coaching, and Web-based CBT.
Muroff and colleagues8 describe a 2009 study undertaken by Pekareva-Kochergina and Frost. The researchers examined the benefits of a 13-week intervention during which 2 undergraduate students supervised by a senior clinician facilitated 2 self-help groups. Participants read Buried in Treasures: Help for Compulsive Hoarding,44 a book describing hoarding, and were encouraged to practice the strategies proposed. At the close of the group sessions, 41% of participants rated themselves “much improved.” This student-led group yielded a surprisingly positive outcome for group members in a relatively short period.
In 2010, a Web-based self-help group for hoarding, established in 1998, was studied by Muroff and colleagues.45 Members participated in online chats, accessed an archive of resources hosted on the Web site, and were required to post action steps and progress reports at least monthly. Both long-term and recent members showed reductions in clutter and hoarding symptoms over a 15-month period. More active participants on the Web site showed statistically lower levels of hoarding. This group represents an intervention model that holds the potential to economically extend treatment to a geographically dispersed group.
The benefit of in-home assistance by clinicians is time-consuming and costly. Muroff and colleagues8 introduced non-clinician, in-home assistants (trained undergraduate student coaches) into a hoarding treatment group to reinforce skills learned in group treatment and boost CBT-based outcomes for participants. Clinicians who led the group communicated with coaches through in-person and telephone group supervision and use of a system to track and docu-ment home visits throughout the 20-week treatment period. One group of participants received 4 home visits from one of the cotherapists, the second group received an additional 4 home visits from the undergraduate coaches. Although reductions in hoarding symptoms were not statistically significant, additional in-home assistance appeared to offer improved (albeit small) outcomes. Additional studies will help further define the effect of this enhancement to group treatment.
A pilot study is under way to test the feasibility, acceptability, and effectiveness of computer- and Webcam-delivered CBT for hoarding symptoms. Preliminary results show potential for a cost-effective, direct service solution to in-home locations where hoarding occurs.8 Initial outcomes of this 26-session, weekly home-based CBT treatment delivered via Webcam showed moderate improvement of participant’s hoarding symptoms and was administered over a 30- to 38-week period compared with an average 49 weeks of in-person treatment.
These stepped-care strategies demonstrate potential to assist a broader spectrum of patients using CBT hoarding interventions and offer a sustainable, economic approach to this societal problem. Given the large number of persons who hoard, the debilitating and potentially deadly consequences, and the sometimes limited insight into the severity of their symptoms, it seems essential to learn more about this complicated problem. Current CBT regimens are effective, but they are costly. Accordingly, more research is needed to better understand the disorder and to provide relief from this chronic problem.