Compulsive hoarding: Unclutter lives and homes by breaking anxiety’s grip
Fear about making ‘wrong’ decisions may underlie hoarders’ pathologic saving and collecting behaviors. Here’s a strategy to help them
Compulsive hoarding behavior is considered notoriously difficult to treat, but targeting its characteristic symptoms with medication and psychotherapy can be successful. This article provides a guide for the psychiatrist—alone or with a cognitive-behavioral therapist—to diagnose compulsive hoarding syndrome and help patients overcome the anxieties that fuel its symptoms.
WHAT IS COMPULSIVE HOARDING?
Hoarders acquire and are unable to discard items that others consider of little use or value.1 They most often save newspapers, magazines, old clothing, bags, books, mail, notes, and lists. Hoarding and saving behaviors occur in nonclinical populations and with other neuropsychiatric disorders—schizophrenia, dementia, eating disorders, mental retardation—but are most often found in persons with obsessive-compulsive disorder (OCD).
- aggressive, sexual, and religious obsessions with checking compulsions
- symmetry/order obsessions with ordering, arranging, and repeating compulsions
- contamination obsessions with washing and cleaning compulsions
- hoarding and saving symptoms.
What causes compulsive hoarding?
Genetics. Compulsive hoarding may have a different pattern of inheritance and comorbidity than other OCD symptom factors. Hoarding/saving symptoms show a recessive inheritance pattern, whereas aggressive/checking and symmetry/order symptoms show a dominant pattern.9 The hoarding phenotype has been significantly associated with genetic markers on chromosomes 4, 5, and 17.14 In other studies:
- Among 20 OCD patients with prominent hoarding, 84% had first-degree relatives with hoarding behaviors and only 37% had first-degree relatives who met DSM-IV criteria for OCD.11
- Among 126 OCD patients, social phobia, personality disorders, and pathologic grooming disorders were more common in hoarders than in nonhoarders. Hoarding and tics were more common in first-degree relatives of hoarders than in those of nonhoarders.12
Neurobiology. Using positron emission tomography (PET) brain imaging, our group13 compared glucose metabolism in patients with compulsive hoarding syndrome with that of nonhoarding OCD patients and normal controls. Compulsive hoarders had unique brain activity, with significantly lower metabolism:
- in the posterior cingulate gyrus and occipital cortex than controls
- in the dorsal anterior cingulate gyrus (AC) and thalamus than nonhoarding OCD patients.
Hoarding severity was significantly correlated with lower activity in the dorsal AC across all OCD patients.
Discussion. Genetic and neurobiologic data suggest that compulsive hoarding syndrome may be a neurobiologically distinct variant of OCD14 and may help explain its clinical symptoms and poor treatment response. Low AC activity may mediate compulsive hoarders’ decision-making and attentional problems, whereas low posterior cingulate activity may be responsible for visuospatial and memory deficits. Moreover:
Among OCD patients, 18% to 42% have hoarding and saving compulsions.4,5 Hoarding and saving can be part of a broader clinical syndrome that includes indecisiveness, perfectionism, procrastination, difficulty organizing tasks, and avoiding routine daily activities.6,7 The 1 to 2 million Americans whose most prominent and distressing OCD symptom is hoarding and saving and who show these other associated symptoms are considered to have “compulsive hoarding syndrome.”7,8 Evidence suggests that this syndrome may be a neurobiologically distinct OCD variant (Box).9-16
ASSESSMENT AND TREATMENT PLANNING
To manage compulsive hoarding syndrome, begin with a thorough neuropsychiatric evaluation:
- Rule out primary psychotic disorders, dementia, and other cognitive impairments and neurologic disorders.
- Rule out primary major depression, as clutter and self-neglect may be caused by amotivation, low energy, or hopelessness.
- Determine if the patient has OCD.
Amount of clutter. Living areas may be so cluttered that sleeping in a bed, sitting on chairs, or preparing food on a kitchen counter are impossible. How much of the home is cluttered? How much floor and counter space is usable? Are rooms unusable or inaccessible because of clutter? Can the patient use the laundry, prepare food in the kitchen, use the shower, toilet, etc.?
Health or safety hazards. Huge piles of papers can be a fire hazard. Clutter may be blocking the exits. Collected items may extend beyond patients’ homes to their cars, garages, storage lockers, and even storage areas owned by friends and family.
Beliefs about possessions. Compulsive hoarders often have distorted feelings about their possessions. They may over-buy or impulsively purchase items they feel have emotional or monetary value. They may consider the items extensions of themselves and suffer grief-like loss when discarding things.7
Some collect free items—flyers, coupons, newspapers, discarded goods—hoping to save money or be prepared “just in case” the item is ever needed. This may represent unattainable expectations of perfection, needing to maintain preparedness for every possible contingency. Hoarders often believe they have poor memory and have catastrophic fears of what might happen if they forget something. Thus, their desire to keep their possessions in sight is strong.17
Information processing deficits. Because of anxieties about making mistakes, most hoarders have great difficulty making decisions.18 It is easier to not decide than to suffer the consequences of a “wrong” decision. To gauge this behavior, ask patients how long routine decisions take them and which decisions they procrastinate or avoid.
Proposed criteria to diagnose obsessive-compulsive hoarding*
Patient acquires and fails to discard a large number of possessions that appear useless or of limited value
Clutter prevents patient from using living or work spaces for activities for which they were designed
Hoarding behavior causes significant distress or functional impairment
* Proposed by Frost and Hartl, reference 6.
Many hoarders also report marked distractibility and inattention, jumping from one task to the next without completing any of them. Their communication style is often as cluttered and disorganized as their homes, with tangential, circumstantial, and over-inclusive descriptions.
Avoidance behaviors are a hallmark of the compulsive hoarding syndrome. To avoid deciding to discard items, they put them in a box, garage, rented storage facility, etc. They may also avoid routine decision-making tasks that could lead to making a mistake.
Daily functioning. Hoarders may take a long time to do even small chores, such as taking an hour to pay one bill. An inordinate amount of time may be spent “churning”—moving items from one pile to another but never discarding any item or establishing a consistent system or organization.
Medication compliance. Compulsive hoarders often forget to take medications or take them at inappropriate times. They may lose their medications in the clutter.
Insight. Hoarders often have little awareness of how their behavior and clutter affect their lives.19 They minimize the clutter in their homes and its health and safety risks. Insight can fluctuate over time and needs to be assessed repeatedly during treatment.
Assessing a patient with compulsive hoarding symptoms
Useful questions or strategies
Amount of clutter
Visit home and/or see pictures
Hazards relating to clutter
Ask: What precautions do you take to reduce risk of fire? Have you ever had a problem with rodent or insect infestation as a result of the clutter? Have neighbors complained about the risks of fire or infestation that the clutter might impose on their homes?
Beliefs about loss of possessions
Ask: What is the worst thing that would happen if you threw this item away? If you did not have this, what do you think would happen?
Ask: How long do routine decisions take you? Which decisions do you procrastinate or avoid?
Decision-making and organizational skills
Ask: How do you pay and store your bills?
Ask: Do you avoid other things (sorting mail, returning calls, doing dishes, or paying bills, rent, or taxes)?
Ask: Do you get everything done that you want to do? Are you often late? Do you have difficulty starting or finishing tasks? Describe a typical day.
Ask: Do you think this amount of clutter is normal? Do you think having this clutter has caused problems in your life?
Motivation for treatment
Ask: What brings you into therapy now? Do you think you have a problem with excessive hoarding/saving? If it was not for your family, would you come for help?
Social and occupational functioning
Ask: How has your clutter affected your personal relationships? When was the last time you had someone come to your home? What prevents you from working right now? Are you working to your full potential?
Support from friends and family
Ask: What does your family say about your clutter? Do your friends or family understand what is going on?
Ask: How long does it typically take before you renew your prescriptions when you run out of medications?
Cognitive behavioral therapy for compulsive hoarding
Methods and goals
Educate patient about hoarding
Help improve insight and motivation
Set up treatment
With patient, select target area of clutter
Assess items together, creating a hierarchy of least to most difficult areas to sort and items to discard
Create realistic categories and a storage system
Patient must decide to keep or discard each item and permanently remove it from pile
Patient must store saved items appropriately
Continue until area is clear, then move to next area
Plan and implement appropriate use of space
Stop incoming clutter
Address compulsive buying and acquisition
Provide organization training
Organize possessions, time, tasks, etc.
Replace hoarding with healthier behaviors to prevent clutter from re-accumulating
Source: Adapted from reference 23.
Social and occupational functioning. Many compulsive hoarders have very little family or social support. They frequently are too embarrassed by their clutter to have people come to their homes, sometimes for years. The syndrome frequently impairs work performance.20
Motivation. Like insight, motivation can fluctuate over time. Patients usually must work tremendously hard to adhere to treatment. To support these efforts, we periodically review with patients compulsive hoarding’s negative effects and the activities they would enjoy—such as improved relationships, greater work capacity, hobbies—if overcoming this behavior allowed them more time and space.
Rating scales. The symptom checklist of the Yale-Brown Obsessive-Compulsive Scale (YBOCS)21 contains two items for hoarding obsessions and compulsions but none for avoidance behaviors, which are prominent with compulsive hoarding. The Saving Inventory-Revised22 is a validated, 23-item self-report measure of clutter, difficulty discarding, and excessive acquisition, which distinguishes compulsive hoarders, nonhoarding OCD patients, and normal controls.
The compulsive hoarder’s problems will not be solved by someone else throwing away or organizing his or her possessions. These actions often anger patients, who see them as intrusive and a loss of control.
In our experience, family members’ attempts to intervene can disrupt relationships and worsen hoarders’ social withdrawal. “Taking over” also does not help the patient create a sustainable system for keeping clutter-free.
Medication treatment for compulsive hoarding*
Start with SSRIs, as for nonhoarding OCD (citalopram, escitalopram, fluoxetine, fluvoxamine, paroxetine, sertraline)
Treat comorbid conditions
Mood disorders, other anxiety disorders, ADHD, psychotic disorders, etc.
Use adjunctive medications if SSRIs give only partial response
* Combine medication treatment with cognitive-behavioral therapy
SSRI: selective serotonin reuptake inhibitor
OCD: obsessive-compulsive disorder
ADHD: attention-deficit/hyperactivity disorder
We find that combining cognitive-behavioral therapy (CBT) and medication is optimal treatment for compulsive hoarding,23 although no controlled studies have compared this combination with each treatment alone. One controlled trial24 and three uncontrolled trials8,25,26 have shown some benefit of CBT for compulsive hoarding, although with poorer response and higher dropout rates than for nonhoarding OCD patients.