Clara called for an appointment after the Board of Health threatened to condemn her house if she didn’t get it cleaned up. Someone told her a therapist might be able to get them to back off. I asked to visit so I could understand what the problem was. Stuff was piled everywhere. There was no way to access the back door or most of the windows. She could sleep only on a small space at the end of her bed. The rest of the bed was piled with clothing, empty pizza boxes, and parts of electronics.
A man called me one day about his neighbor, asking if maybe I could help. “The woman next door has too many animals. There are at least five dogs over there and maybe 20 cats. She even has a miniature donkey and a small goat. Her place frankly stinks! She doesn’t agree that many of the animals look starved or sick and should see a vet. Can you think of a way to get her to come to see you?”
Ms. Chu’s adult daughter came in for a consultation about her 80-year-old mother. “My mother is filling her apartment with junk,” she said. Stuff is piled everywhere. Sometimes it’s even dangerous. When I dropped in the other day, I found a stack of newspapers sitting on the stove! What should I do?”
When I was in graduate school to become a psychologist many years ago, the only time I ever heard of hoarding as a mental illness was a brief mention in an abnormal psychology class. We were all fascinated by the story of the Collyers, two brothers who, in 1947, were found dead in their Brooklyn apartment surrounded by 140 tons of stuff. It seemed merely a curiosity, not something we’d see in practice.
But in fact, Hoarding Disorder (HD) is another one of those things that we often don’t know about unless we ask – or unless a family or community member makes the call.
It’s now estimated that between two and five percent of U.S. adults meet the criteria for clinical hoarding. That’s somewhere between 400,000 and one million Americans who are likely to have hoarding problems that interfere with the normal functioning in life.
It often begins when an individual is a teen and becomes a lifelong struggle. As it worsens, the clutter can become a threat to health and safety because of unsanitary conditions or the blocking of fire exits or stacks of paper too near the stove. Eventually, it can become the basis of conflict with family and neighbors.
In some cases, it leads to drastic intervention by community agencies (like the Board of Health or fire department) or eviction.
What do people collect? Anything and everything – from newspapers, advertising flyers and brochures to anything they can pick up for free or cheap (like on the roadside or at garage sales) to things they think can still be useful (like empty food containers) to things they think they can repair but never get around to fixing to even animals (the “cat lady” is often a hoarder.)
The sheer volume of stuff can take over their home, make doors and windows inaccessible and make it impossible to find important papers or money or bills.
The person is often in denial that their accumulated stuff is out of control or interfering with his or her life. On the contrary, they often experience strong positive feelings of excitement, soothing, or pleasure while collecting or buying new things and strong negative feelings of anxiety, anger, fear or guilt when they even consider disposing of anything.
The DSM 5 now classifies hoarding as a disorder separate from obsessive-compulsive disorder. Dr. Randy Frost, a professor at Smith College in Massachusetts has made a career of studying hoarding disorder (HD) and how best to treat it.
In several of his writings, he clarifies the distinction between hoarding disorder (HD) and obsessive compulsive disorder (OCD). The two diagnoses do share some characteristics: The fear of making mistakes in what to keep or throw away, or fear of losing potentially important or valuable items common in HD seems similar to “obsessions.”
The urge to save or acquire new items seems similar to “compulsions.”
But there are some important differences.
People with OCD have some insight that their compulsive behavior is problematic. They usually understand that their rituals, though unwanted, do help them eliminate equally unwanted and, often, unpleasant thoughts.
People with HD rarely have such rituals and they usually experience their collecting and hoarding as pleasurable, not distressing. In fact, their distress often comes from any effort to discard items, not from collecting or having them. Further, distress is often a result of the interventions of others, not an outcome of internal discomfort or concern.
Where the symptoms of OCD come and go over time, symptoms of HD tend to get worse by the year.
What To Do
Let’s start with what not to do: Often well-meaning relatives or the local Board of Health come swooping in to “clean up” by cleaning out. This approach is traumatizing to the individual and highly unsuccessful. Often enough, these individuals will only refill their space as quickly as possible in an attempt to deal with their anxiety and feelings of loss.
Psychodynamic insight-oriented therapy that looks at the client’s response to their family of origin is usually not helpful. Family therapy may be a good adjunctive approach if it helps family members be more patient and compassionate. But direct help for the individual will also be needed.
Medications used to treat OCD are often ineffective for treating HD.
There are currently no medications approved by the Food and Drug Administration (FDA) to treat hoarding disorder. Sometimes SSRIs (selective serotonin reuptake inhibitors) medications are prescribed to treat concurrent anxiety and/or depression.
In cases where the root cause of hoarding is dementia, the focus needs to be on empathetic management of the hoarding, not therapy.
Successful strategies include the following:
- Cognitive Behavior Therapy that focuses on exposure and response prevention to address the anxiety provoked by interventions to reduce the client’s hoard can be helpful when coupled with cognitive restructuring of beliefs related to the hoarding behavior. CBT programs that include “homework” to be completed between sessions have been found to be more successful than those that don’t.
- Hoarding-Specific CBT protocol: Dr. Frost and his colleagues have developed a cognitive behavioral protocol that enlists the full participation of the individual in gradually deciding what to save and what to discard. Exercises help the individual develop distress tolerance and better decision-making skills. Treatment often includes home visits by a coach as well as individual and group counseling. One of their books has become the basis for peer support groups and workshops in several major cities. See: David Tolin and Randy Frost, Buried in Treasures: Help for Compulsive Acquiring, Saving and Hoarding (Treatments That Work.
- EMDR (Eye Movement Desensitization and Reprocessing): The evidence for the effectiveness of EMDR for hoarding isn’t as clear as it is for the treatment of OCD. Though further study is needed, there is an EMDR protocol. See: Priscilla Marquis,and Christi Sprowls, EMDR therapy and hoarding: The hoarding protocol in Marilyn Luber (Ed.), EMDR therapy: Scripted protocols and summary sheets:
- Motivational Interviewing can help those patients who are ambivalent about the need for change. Those who are anxious about discarding possessions but who are also aware that their stuff is making it difficult to carry on with their life can benefit.
Hoarding Disorder is difficult but not impossible to treat. With estimates that perhaps as many as one in 20 Americans struggle with hoarding, it is important that our assessments include queries about how well our clients manage their possessions and whether their homes are organized enough to ensure safety.
When their accumulation of stuff is dysfunctional, distressing, or dangerous, we need to have developed the competencies that are required to be both supportive and helpful.