It’s a word that can evoke feelings of shame and frustration. The negative associations are so deep, people who struggle with it often do not seek help. We’re talking about hoarding.
According to the International OCD Foundation, about 2%-6% of the population suffers from hoarding disorder. It’s defined as ongoing difficulty letting go of possessions because of the belief they need to be saved. We talked to James Westphal, M.D., psychiatrist and consulting mental health medical director to HMSA from Carelon Behavioral HealthSM, to find out more about this disorder and how to help our loved ones (or ourselves) when it comes to this sensitive topic.
The hoarding continuum
“Hoarding is a continuum,” says Dr. Westphal. “First, you have ‘collecting,’ which is a normal and enriching leisure activity. Next, you have ‘hoarding,’ which is caused when collections congest and clutter the living environment. And finally, there’s ‘domestic squalor,’ when collections cause safety and health concerns.”
Collectors can still think rationally. Their items are organized and have financial or personal value, and they have insight about their behavior. However, when it comes to hoarding, a person still thinks rationally but might be impaired. “Items are disorganized, have low financial or personal value, and there’s minimal insight,” says Dr. Westphal. “And for those living in domestic squalor, they have seriously impaired rational thinking, items are chaotically disorganized and have minimal financial or personal value, and they may have a delusional lack of insight.”
Diagnosing hoarding
In the U.S., the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) is the universal authority of diagnoses. The 2013 update made hoarding an official diagnosis. “This is significant because treatment recommendations and health care coverage are often determined by DSM classifications,” says Dr. Westphal. “Diagnostic criteria for hoarding include persistent difficulty discarding or parting with possessions. The difficulty is due to the perceived need to save and the distress associated with discarding. This leads to accumulating possessions that congest and clutter the living area.”
The Mayo Clinic lists the following as symptoms of hoarding disorder:
- Obtaining and keeping too many items you may not need or don’t have space for.
- Ongoing difficulty getting rid of things regardless of their value.
- Needing to save items and feeling upset by the thought of getting rid of them.
- Accumulating clutter to the point where rooms don’t function as they should. For example, not being able to sleep in a bedroom or cook in a kitchen.
Not being able to part with items can result in:
- Piles and stacks of items that are disorganized. This can include newspapers, clothes, paperwork, books, or sentimental items.
- Crowded and cluttered walking spaces and living areas.
- Unsanitary levels of food or trash.
- Conflict with others who try to help remove items from home.
A hoarding disorder can cause people to save items because:
- They think the items are unique or that they’ll use them in the future.
- They feel emotionally connected to items that remind them of happier times.
- They feel comforted and safe when they’re surrounded by their things.
- They don’t want to be wasteful.
Complicated causes
The causes of hoarding disorder are unknown but can be associated with other mental health issues. “It can be caused by psychiatric disorders such as obsessive-compulsive disorder, major depressive disorder, or schizophrenia,” says Dr. Westphal. “Or it could be a result of cognitive deficits from dementia, restricted interests in autism spectrum disorder, or food storing in Prader-Willi syndrome.”
According to the American Psychiatric Association, hoarding behavior can begin relatively early in life and increase in severity as the person gets older. Risk factors include:
- Personality. People with hoarding disorder tend to have a behavior style that includes difficulty making decisions, staying focused, and solving problems.
- Family history. Those who have a family member with hoarding disorder are more likely to have the disorder as well.
- Stressful life events. Some may develop hoarding disorder after a stressful or traumatic event that they had difficulty coping with, such as the death of a loved one.
Road to wellness
If someone with hoarding disorder finds comfort in their belongings, they may not realize the negative impact it has on their life. “While challenging, treatment is available and can be effective,” says Dr. Westphal. “Treatment can include cognitive behavior therapy, medication, cognitive remediation, and interventions.” A mental health specialist may also recommend a combination of treatments.
How to seek help for hoarding disorder
If you think you may have hoarding disorder, talk to your primary care provider. They can help you figure out next steps and recommend resources and/or treatment.
How to help your loved ones
If you think someone you know may have hoarding disorder, Dr. Westphal has a few steps you can take:
- Intervene early, before the domestic squalor phase.
- Involve family if possible.
- Encourage them to seek help from professionals.
Also, everyone can do their part to help destigmatize hoarding.
Carelon Behavioral HealthSM is an independent company providing behavioral health utilization management and quality improvement services on behalf of HMSA.
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