As a professional organizer, I have worked with people suffering from hoarding disorder and would like to share my hoarding disorder insights and a couple things to avoid. I hope they motivate you to seek help for yourself or your loved one. Hoarding disorder (HD) requires psychiatric care. This level of care is far beyond what professional organizers like myself can offer. Consequently, cleaning out a home, at best, buys time when facing authorities and, at worst, sets back recovery by pushing the individual deeper into dysfunction. Hoarding disorder may create an unsafe living situation that could become life-threatening. That’s why it is critically important to seek help. If you or a loved one is dealing with hoarding disorder, please read through my hoarding disorder insights and PLEASE seek professional help immediately.  

DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE
This website is for informational purposes only. I do not intend for the material on this site to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health care provider regarding treatment. Above all, never disregard professional medical advice or delay seeking it because of something you have read on this website.

1 – Hoarding disorder was officially recognized in 2012

In 2012 the American Psychiatric Association officially recognized hoarding disorder as a mental disorder separate from obsessive-compulsive disorder (OCD) when they released version five of the Diagnostic and Statistical Manual of Mental Disorders (DSM-V). Most hoarders (up to 80%) do not meet the diagnostic criteria for OCD and do not have clinically significant OCD symptoms. Clinicians and patients met hoarding disorder’s inclusion in the DSM with tremendous support, partly because evidence-based treatments for OCD are less effective for hoarding.

2 – There are specific criteria to support the diagnosis of hoarding disorder

The DSM-V indicates the presence of the below criteria for proper diagnosis: 

1. Persistent difficulty discarding possessions regardless of value.
2. This difficulty is due to a perceived need to save the items and to the distress associated with discarding them.
3. The accumulated possessions congest or clutter active living areas so that they can no longer be utilized for their intended purpose. If living areas are uncluttered, it is only because of the interventions of third parties.
4. The person suffers significant distress and impairment around daily functions (which may be perceived or not) as a result of their hoarding behavior.
5. The hoarding is not attributable to another medical condition or psychological disorder.

If the above conditions are met: 

• Specify if difficulty discarding possessions is accompanied by excessive acquisition of items that are not needed or for which there is no available space. (Approximately 80 to 90 percent of individuals with hoarding disorder display this trait.)
• Specify the person’s level of insight – With good/fair insight: Sees and accepts the situation as problematic. With poor insight: Mostly convinced their beliefs and behaviors are not problematic. With absent insight/delusional beliefs: Completely convinced behaviors are not problematic. 

3 – Insight into their condition is critical to their recovery

The level of insight into their condition is critical to their recovery. A good first-line intervention from a loved one is to raise awareness and understanding of the disorder and to express genuine concern. Have compassionate, non-judgmental conversations about hoarding and express your honest concern for their safety. Any movement towards good or fair insight is progress. Notice and comment on their strengths/progress. The majority of people with HD only enter treatment because of external forces. Studies indicate only 3% of those seeking treatment are self-referred. Additional studies have shown individuals dropping out of treatment had significantly higher baseline levels of denial about their behaviors being problematic. 

4 – Understanding associated factors can help you find compassion and patience

People with HD have difficulty with the following cognitive functions. This understanding fosters better communication and patience when working to reduce their possessions. Helping them understand that these limitations are not their fault and are part of this condition may raise their insight. The challenges belong to the disorder, not to the individual. I recommend you never directly call someone a hoarder. Instead, say they suffer from hoarding disorder. Establish a clear line between them and their condition.

Associated factors:

• Indecision – Not knowing how to decide what to keep or discard significantly slows decision making and leads to decision avoidance.
• Perfectionism – The need to make only the right decisions about their belongings leads to decision avoidance.
• Procrastination – The uncomfortable distress and anxiety involved with making decisions can lead to decision avoidance.
• Executive functioning – Difficulty planning and organizing tasks hinders the decision process.
• Distractibility – Difficulty focusing on a goal or specific steps hinders the decision process.

5 – Standardized assessments are available to measure the severity and impact of hoarding disorder

The International OCD Foundation offers three rating scales that help track the progression of hoarding disorder; however, treatment remains problematic. The files are available for download at the bottom of this post.

• Saving Inventory Scale Revised (SIR) – A 23-item questionnaire designed to measure three features of hoarding (excessive acquisition, difficulty discarding, and clutter.) The authors included scoring instructions and a table that rates the significance of the hoarding problem.
• Hoarding Rating Scale (HRS) – A 5-item tool that includes questions about clutter, difficulty discarding, excessive acquisition, and the resulting distress and impairment. Initial studies suggest that a score of 14 or higher on the HRS indicates a probable hoarding problem.
• Clutter Image Rating (CIR) – The Clutter Image Rating tool helps standardize the level of clutter through a series of images depicting rooms in various stages of clutter accumulation. Observers select the image on the scale that best corresponds with the state of the room in question. Generally, rooms rated as picture #4 or higher indicate a probable hoarding problem.

6 – The brains of those with hoarding disorder are different.

Studies have used neuroimaging technology to examine brain function associated with hoarding. Areas of the brain related to thinking and decision-making are over-activated in hoarders with regards to their possessions yet under-activated in other decision-making processes. A Yale study using functional magnetic resonance imaging (fMRI) showed unique patterns of brain activity in people with HD. The activity underlies problems in identifying the emotional significance of a possession, generating an appropriate emotional response to letting it go, and regulating their mood during decision-making. It is critically important to understand that someone with a hoarding disorder sees all their items as having meaning and emotional significance.

7 – They see all their possessions as important

Hoarders don’t see items as we do; to them, everything is unique and special in some way. They lose the ability to judge prominent and important features of a possession and they may focus on details, like shape, color, or texture, rather than an item’s purpose. People with HD are outside-the-box thinkers. The emotional attachments cross over a broad range of meanings for them. Understanding their unique way of seeing things can help re-direct focus when making decluttering decisions.

EMOTIONAL ATTACHMENTS TO/SPECIAL MEANING OF POSSESSIONS

Its beauty/aesthetics value	They see it as part of their identity
Its associations with a memory	They feel a sense of power and control by owning things
Its utility/or the opportunity for it be useful	They fear making a mistake and missing out
Its uniqueness, special, only one	They believe it is their responsibility to not be wasteful
Its sentimentality/the tendency to anthropomorphize	It is part of a collection and without it they lack completeness
Its comfort, like a warm blanket	It is a validation of their personal worth
The safety it provides like a protective barrier	Socialization – acquiring items connects them to others

8 – The goals of treatment are straightforward, but the steps involved are not

Treatment goals are simple. 

1. Decrease in acquisition.
2. Increase in discarding.
3. Ability for the home to function as intended.
4. Patient can manage the stress involved with the above goals.

Non-hoarders understand the need to create a plan and begin immediately, but hoarders have limited capacity for planning. Although the treatment goals are simple, the steps to achieve them are not. HD decreases executive functioning; don’t overwhelm them with information. Focus first on their safety and organization or on meeting the criteria demanded by the authorities. Find ways to take small achievable steps. Hold information back until there is progress. Separate tasks and talk about them individually. Gently redirect focus when they get distracted. You can cover unrelated piles of items in sheets to assist in staying on task. Avoid telling them what they “should” do.

9 – Leading experts have written a book to help break the hoarding cycle. BUY IT!

The exercises in the book help the individual break the maladaptive hoarding cycle. The aim is to insert adaptive coping skills that break the negative feedback loop. Adaptive strategies build tolerance to the discomfort and break down the predictive fear of letting go. So that over time the person is more accurate in their initial threat appraisal, with overall decreases in anxiety when considering discarding something. 

• Education about hoarding disorder
• Exposure to avoidance and safety behaviors to support discarding and combat acquiring
• Improving decision-making skills and restructuring their beliefs about possessions
• Developing an organization system for their possessions

The TWO things never to say or do to someone with hoarding disorder

There are two mistakes that even well-intentioned people make when they are trying to help someone with a hoarding disorder. 

The first mistake is to call their hoard junk, garbage, or even crap in front of them. Please never let your loved one hear you or anyone involved speak about their items this way. Remember,  they have limited abilities to distinguish values. So, to them, everything is precious. Instead, try to match their language about the hoard. If they call it their container collection, call it their container collection. If they say rescued street treasures, you say the same. 

The second mistake is touching their possessions without permission. Always speak with them and identify items they have less attachment to and would be ready to get rid of versus what they would have trouble getting rid of at first. Use your poker face and never let them see you grimace or roll your eyes.

I hope these hoarding disorder insights have helped to increase your knowledge, compassion, and understanding of this devastating mental illness. A short local resource guide follows to make the next step in getting proper care easier. Again, I urge you to seek professional support. The recommended book comes from some of the world’s most educated and experienced doctors. It is a safe and helpful way to start. Please know that you are not alone. When you are ready to begin the clean-out process, I hope you will consider contacting me at ALL Organized Now. Good luck and blessings. – Andy

RESOURCE GUIDE:

International OCD Foundation

Clutterers Anonymous

Alameda County Social Services

Crisis Support Services of Alameda County

ClutterLess East Bay

DOWNLOADS: