When Stuff Mounts: Hoarding, Clutter, and Mental Illness Gregory S. Chasson, Ph.D. Licensed Psychologist Assistant Professor Department of Psychology Towson University Principal Investigator Site for OCD & Autism Research Co-Owner and Clinical Director CBT Solutions of Baltimore

What is Hoarding Disorder (HD) Persistent difficulty discarding or parting with possessions, regardless of actual value. Accumulation of possessions that clutter active living areas and compromising their intended use. The hoarding causes clinically significant distress or impairment in functioning (including maintaining a safe environment for self and others). Many have excessive acquisition (excessive collecting, buying or stealing items that are not needed or for which there is no space) (APA, 2013)

Degrees of Clutter Kitchen Pictures from the Clutter Image Rating scale (Frost, Steketee, Tolin, & Renaud, 2008)

Degrees of Clutter Bedroom Pictures from the Clutter Image Rating scale (Frost, Steketee, Tolin, & Renaud, 2008)

Degrees of Clutter Living Room Pictures from the Clutter Image Rating scale (Frost, Steketee, Tolin, & Renaud, 2008)

Impact of Hoarding in MD Over 200,000 individuals with hoarding difficulties are estimated to reside in Maryland* But only than a handful of providers are trained to administer evidence-based cognitive-behavioral therapy (CBT) for hoarding, the gold-standard Huge bottleneck for effective services Hoarding costs the State of Maryland roughly $45 million per year** *Extrapolated from Samuels et al, 2008 **Extrapolated from San Francisco Task Force on Compulsive Hoarding, 2009

Prevalence Hoarding occurs in 2-5% of adults Symptoms are usually present at early adolescence 11-20 years 68% before age 20 Late onset is rare Average age that people seek treatment is 50-60’s Course tends to be chronic and symptoms worsen over time (Ayers et al, 2010; Grisham et al, 2006; Samuels et al, 2008; Tolin, Meunier, Frost & Steketee, 2010)

Prevalence Continued Studies have been inconsistent regarding gender According to Timpano et al. (2011), prevalence does not appear to differ between males & females However, Samuels et al. (2008) found the prevalence of hoarding was about two times as great in men compared to women Far more women present for treatment

Hoarding v. Collecting Hoarding Collecting Chronic Course Collecting Decreases each decade of life Object content not as thematic Thematic object content Objects rarely used Objects more likely to be used Acquisition process is less purposeful & goal-driven Acquisition process is purposeful & goal-driven Purpose  control, safety, personal identity Purpose  hobby/leisure, set completion & public identity Low organization High organization Room functionality compromised Room functionality not compromised Distress and impairment No distress or impairment Interpersonal conflict Less interpersonal conflict (Nordsletten, Fernández de la Cruz, Billotti, & Mataix-Cols, 2012)

Risks & Consequences

(Lucini, Monk, & Szlatenyi, 2009, Tolin et al., 2010) Risks & Consequences Hoarding is associated with substantial functional impairment Clutter prevents people from using their space for it’s intended purpose & basic activities Hoarding is responsible for 24% of fire-related deaths. Fires are 16 times more expensive for fire departments to extinguish when hoarding is at play Overall property damage is 8 times more costly when hoarding is involved. (Lucini, Monk, & Szlatenyi, 2009, Tolin et al., 2010)

Risk & Consequences Continued Nearly 40% of people with hoarding tendencies live in poverty Medical complications are common in hoarding obesity, asthma, 11-fold increased risk of stroke, medication & dietary mismanagement Property damage (diminished value of or loss of home investment) Eviction and/or condemnation of home Removal of children from the home (Tolin et al., 2010; Ayers et al., 2010; Steketee et al., 2001; Tolin, Frost Steketee, Gray & Fitch, 2008)

Acquisition Compulsive Buying Acquisition of Free Things Retail, discount, thrift stores On-line shopping (Ebay, Home Shopping Network, retail/catalogues, etc) Acquisition of Free Things Advertisements-flyers/handouts Give-aways and freebies “Rescuing” Trash-dumpster diving Stealing/Kleptomania—10%

Comorbidity Depression (50%) Social Anxiety Obsessive-Compulsive Disorder (20%) Attention-Deficit/Hyperactivity Disorder

Hoarding Behavior in Other Disorders Physical trauma to brain Stroke Traumatic injury Dementia Frontotemporal dementia Mental retardation Prader-Willi syndrome Autism Schizophrenia Most hoarding cases do not have these.

Understanding the Features of Hoarding: The How & Why General Conceptual Model: Genetics Vulnerabilities (Personal & Family) Information processing problems Meaning of possessions/thoughts, beliefs & attachment to possessions Emotional reactions Learning processes (Steketee & Frost, 2014)

Neuroimaging Lower cerebral glucose metabolism in dorsal anterior cingulate gyrus 12 hoarding vs 33 nonhoarding OCD; PET; (p<0.001) (Saxena et al., 2004)

Anterior cingulate motivation executive control focused attention assigning emotional valence to stimuli problem solving detecting errors selecting responses decision-making

Traumatic life events Childhood adversities Ever in lifetime Excessive physical discipline Psychiatric symptoms in parent Home breakins Ever in lifetime Physically handled roughly Forced sexual activity Something taken by force

(Steketee, Frost, & Kyrios, 2003) Reasons for Saving Emotional Attachment: “This item is part of who I am. It represents my life.” Responsibility: “I might need this. It would be wasteful to get rid of it because someone could use it.” Control: “People have no right to touch my possessions.” Memory: “If I get rid of this, I will forget it.” (Steketee, Frost, & Kyrios, 2003)

Treatment

(Muroff, Bratiotis, & Steketee, 2011) Quick Summary In general, disappointing research evidence for psychopharmacological treatment for hoarding Standard psychotherapy, including standard cognitive-behavior therapy (CBT), has also yielded disappointing research evidence BUT, one specific manualized treatment called CBT for Hoarding (Steketee & Frost, 2014) has received some evidence is currently the gold-standard treatment (Steketee et al., 2010) This manualized treatment is not your standard CBT approach…. (Muroff, Bratiotis, & Steketee, 2011) Problems: Not an RCT, rule out placebo effect OCD severity and comorbidity confounds results—we know paxil is helpful for OCD—might not generalize to hoarding without OCD Hoarding reduction measured with a unvalidated instrument Large number of patients could not tolerate doses; dropout

CBT for Hoarding Protocol Problems: Not an RCT, rule out placebo effect OCD severity and comorbidity confounds results—we know paxil is helpful for OCD—might not generalize to hoarding without OCD Hoarding reduction measured with a unvalidated instrument Large number of patients could not tolerate doses; dropout

FAM Training Sometimes family members are the most vocal, so I have created a program to leverage this family-member energy My research lab is conducting a waitlist controlled trial of a family-based approach called Family-As-Motivators Training (FAM Training) FAM Training is designed to teach family members of loved ones with hoarding 1) how to cope with the hoarding and 2) how to help motivate the loved one to seek treatment A family member of the loved on with hoarding participates in 10 twice-weekly 50-minute sessions at Towson University Problems: Not an RCT, rule out placebo effect OCD severity and comorbidity confounds results—we know paxil is helpful for OCD—might not generalize to hoarding without OCD Hoarding reduction measured with a unvalidated instrument Large number of patients could not tolerate doses; dropout

FAM Training Pilot A pilot study of FAM Training yielded highly encouraging results (Chasson et al., in press) Family members improved in the use of certain coping strategies and in the application of motivational interviewing techniques They also exhibited increased hopefulness, reported a reduced negative impact of HD on the family, rated a reduction in family enabling of HD behaviors, and displayed boosts in HD and motivational interviewing knowledge. Problems: Not an RCT, rule out placebo effect OCD severity and comorbidity confounds results—we know paxil is helpful for OCD—might not generalize to hoarding without OCD Hoarding reduction measured with a unvalidated instrument Large number of patients could not tolerate doses; dropout

Visit us online at www.soartu.org FAM Training FAM Training is free of charge for the family member Loved one with hoarding must participate in some assessment, but gets $105 for the time and commitment For more information about the study, please contact Dr. Chasson at (410) 704-3261 or gchasson@towson.edu. Visit us online at www.soartu.org   Problems: Not an RCT, rule out placebo effect OCD severity and comorbidity confounds results—we know paxil is helpful for OCD—might not generalize to hoarding without OCD Hoarding reduction measured with a unvalidated instrument Large number of patients could not tolerate doses; dropout

Thank you!!! Gregory S. Chasson, Ph.D. Licensed Psychologist Assistant Professor Department of Psychology Towson University (410) 704-3261 www.SOARTU.org gchasson@towson.edu Co-Owner and Clinical Director CBT Solutions of Baltimore (443) 470-9815 www.CBTBaltimore.com

Who is Dr. Chasson? Gregory S. Chasson, Ph.D., is an Assistant Professor in the Department of Psychology at Towson University and licensed psychologist specializing in the assessment and treatment of obsessive-compulsive disorder (OCD) and related conditions, including hoarding disorder. During his clinical psychology doctoral training at the University of Houston, he completed a two-year externship and research coordinator position at the OCD Treatment Program of the Menninger Clinic. He also completed three years of pre- and postdoctoral training at Harvard Medical School, where he worked at the OCD Institute at McLean Hospital and OCD and Related Disorders Program at Massachusetts General Hospital. Dr. Chasson currently serves as principal investigator in his research lab at Towson University—the Site for OCD & Autism Research (SOAR)—where he just published a promising pilot study of his Family-As-Motivator (FAM) Training for family members of a loved one with hoarding. He is currently the principal investigator on an externally-funded waitlist controlled trial of FAM Training. Dr. Chasson also co-owns and directs a group cognitive behavior therapy practice in Lutherville that specializes in the assessment and evidence-based treatment of OCD and related conditions, and patients with hoarding make up a significant percentage of the caseload. Other than FAM Training, his research on hoarding has included investigations of cross-cultural manifestations (e.g., China), as well as personality correlates of the condition. He is also contracted to co-author a book for training mental health professionals in the treatment of hoarding: Hoarding Disorder: Advances in Psychotherapy—Evidence Based Practice (Hogrefe Publishing, slated for 2015). Problems: Not an RCT, rule out placebo effect OCD severity and comorbidity confounds results—we know paxil is helpful for OCD—might not generalize to hoarding without OCD Hoarding reduction measured with a unvalidated instrument Large number of patients could not tolerate doses; dropout

References Problems: Not an RCT, rule out placebo effect American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders: Fifth edition. Washington, D.C.: American Psychiatric Publishing. Ayers, C. R., Saxena, S., Golshan, S., & Wetherell, J. (2010). Age at onset and clinical features of late life compulsive hoarding. International Journal Of Geriatric Psychiatry, 25(2), 142-149. Chasson, G. S., Carpenter, A., Ewing, J., Gibby, B., & Lee, N. (in press). Empowering families to help a loved one with hoarding disorder: Pilot study of family- as-motivators training. Behaviour Research and Therapy. Frost, R.O., Steketee, G., Tolin, D.F., Renaud, S. (2008). Development and validation of the clutter image rating. Journal of Psychopathology and Behavioral Assessment, 30,193-203. Grisham, J. R., Frost, R. O., Steketee, G., Kim, H., & Hood, S. (2006). Age of onset of compulsive hoarding. Journal Of Anxiety Disorders, 20(5), 675-686. Lucini, G., Monk, I., & Szlatenyi, C. (2009). An analysis of fire incidents involving hoarding households. [Interactive Qualifying Project, Worcester Polytechnic Institute] Muroff, J., Bratiotis, C., & Steketee, G. (2011). Treatment for hoarding behaviors: A review of the evidence. Clinical Social Work Journal, 39(4), 406-423. Nordsletten, A. E., Fernández de la Cruz, L., Billotti, D., & Mataix-Cols, D. (2012). Finders keepers: The features differentiating hoarding disorder from normative collecting. Comprehensive Psychiatry, 54, 229-237 . Samuels, J. F., Bienvenu, O., Grados, M. A., Cullen, B., Riddle, M. A., Liang, K., & ... Nestadt, G. (2008). Prevalence and correlates of hoarding behavior in community-based sample. Behaviour Research And Therapy, 46(7), 836-844. San Francisco Task Force on Compulsive Hoarding (2009) Beyond overwhelmed: The impact of compulsive hoarding and cluttering in San Francisco and recommendations to reduce negative impacts and improve care. San Francisco, CA: Mental Health Association of San Francisco. Saxena, S., Brody, A., Maidment, K., Smith, E., Zohrabi, N., Katz, E., & ... Baxter, L. (2004). Cerebral glucose metabolism in obsessive-compulsive hoarding. The American Journal Of Psychiatry, 161(6), 1038-1048. Steketee, G., & Frost, R. O. (2014). Compulsive hoarding and acquiring: Therapist guide (2nd ed.). New York, NY US: Oxford University Press. Steketee, G., Frost, R.O., & Kyrios, M. (2003). Cognitive aspects of compulsive hoarding. Cognitive Therapy and Research, 27, 463-479. Steketee, G., Frost, R. O., Tolin, D. F., Rasmussen, J., & Brown, T. A. (2010). Waitlist-controlled trial of cognitive behavior therapy for hoarding disorder. Depression And Anxiety, 27(5), 476-484. Timpano, K. R., Exner, C., Glaesmer, H., Rief, W., Keshaviah, A., Brahler, E., & Wilhelm, S. (2011). The epidemiology of the proposed DSM-5 hoarding disorder: Exploration of the acquisition specifier, associated features, and distress. Journal Of Clinical Psychiatry, 72(6), 780-786. Tolin, D. F., Frost, R. O., Steketee, G., Gray, K. D., & Fitch, K. E. (2008). The economic and social burden of compulsive hoarding. Psychiatry Research, 160(2), 200-211. Tolin, D. F., Meunier, S. A., Frost, R. O., & Steketee, G. (2010). Course of compulsive hoarding and its relationship to life events. Depression And Anxiety, 27(9), 829-838. Problems: Not an RCT, rule out placebo effect OCD severity and comorbidity confounds results—we know paxil is helpful for OCD—might not generalize to hoarding without OCD Hoarding reduction measured with a unvalidated instrument Large number of patients could not tolerate doses; dropout