Well before Marie Kondo proselytized about the necessity of storing tee shirts in precise little rolls in her top-selling manifesto, The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing, a bounty of books had been published about the virtues of pruning possessions and neatening homes, complete with suggested systems for how to do it.

That preoccupation may help highlight why it’s so hard to find fitting help for people on the other end of the neatnik spectrum: those dubbed “hoarders.” The label fits at least 6{d0e74b8a3596e4326b45924d39792f257a1f9983beed4201831d386befd3d18e} of the adults in the U.S., most of them seniors.

Hoarding Defined

There’s often an age-related element to acquiring and hanging on to material possessions: Those who lived through the Depression and WWII may be reluctant to throw things away for fear of being wasteful. For some people, items such as a deceased spouse’s books or old home movies may be imbued with memories. And others in their later years view the possessions they leave behind at death as their legacies, hoping that their children or beneficiaries will help keep their memories alive.

There’s a real difference — a clinical difference — between being a collector, even a messy collector, and being a compulsive hoarder. The American Psychiatric Association (APA) first recognized and officially defined Hoarding Disorder in 2013, noting it involves “distinct abnormalities of brain function and neuropsychological performance difficulty parting with possessions, clutter that interferes with normal functioning and marked distress and impairment.” More simply put: It’s a need to acquire random items coupled with an inability to discard them that makes life more difficult.

This underscores a common frustration for both hoarders and those who want to help them: Though many true hoarders may try to organize their possessions, they simply cannot do it.

A clinical diagnosis of Hoarding Disorder requires that:

• A person must collect and keep a lot of items, even things that appear useless or of little value to most people
• The items collected must clutter the living spaces and keep the person from using the rooms as they were intended, and
• The items must cause distress or problems in day-to-day activities.

Research has shown that the areas of the brain controlling memory, categorization and decision-making activate differently in those who hoard compared to non-hoarders.

A self-labeled hoarder receiving treatment recently explained this perceived reality in a conference on “Older Adults Who Hoard” sponsored by the Mental Health Association of San Francisco: “If there was an empty candy wrapper and a bar of gold sitting in front of me, I would need to keep them both,” he said. “And I would need them both equally.”

According to researchers at the Mayo Clinic, people with hoarding disorder typically save items because:

• They believe these items will be needed or have value in the future
• The items have important emotional significance — serving as a reminder of happier times or representing beloved people or pets, and
• They feel safer when surrounded by the things they save.

Genetics often plays a role in determining who will be affected by the disorder — and so does age. Although symptoms of hoarding may set in as early as 10 years old, the APA also estimates they are almost three times more common in adults who are 55 to 94 years old. Factors associated with aging such as living alone, inheriting property of deceased loved ones, lacking space, and having depression, dementia, and personality disorders generally contribute to worsening of hoarding behaviors.

In a related disorder, loosely dubbed “animal hoarding,” people keep a large number of animals without the ability to properly feed and care for them, while denying they are unable to provide these basics.

The Harm of Hoarding

Hoarders’ homes often become unsafe, as walls, floorboards, and supports buckle under the weight of accumulated items stored inside and doorways become blocked. Floors and passages may become so cluttered that fire and police personnel find it difficult or impossible to respond. In many cases, hoarding may also affect neighbors nestled near homes that have become fire hazards and breeding grounds for disease and vermin.

But the most profound harm happens to the hoarders themselves, whose health and hygiene often take a hit as beds, stoves, refrigerators, and bathrooms become inaccessible. And while many hoarders live with the genuine belief there is nothing aberrational about their behavior, a great many fret daily — feeling that they “should” pare down and neaten up their belongings, despairing when they’re not up to the task, and often panicking when things get lost or difficult to locate. As the condition persists, they refuse to admit visitors, becoming isolated. In fact, a common term bandied about among hoarders and those who live with them is Doorbell Dread — roughly defined as “an anxious, panicked reaction to the arrival of an unexpected visitor to the location of the hoard.”

‘The Tip of the Stuffberg’

The public seems to have a voyeuristic fascination with hoarding behavior, which has even spawned a number of reality TV shows, including “Hoarders,” “Hoarding: Buried Alive,” and “Confessions: Animal Hoarding.”

“Those shows are sensationalistic and unrealistic,” says John Franklin, program manager at the Institute on Compulsive Hoarding and Cluttering. “But they’re OK, because they make our phones ring.”

In fact, part of what makes it hard to help with the disorder is that hoarders are often closeted — able to keep the condition hidden, even from close friends and family members, perhaps meeting with them away from home or becoming progressively more reclusive. A landlord, property manager, neighbor, or health service professional concerned about a patient’s unkempt condition is often the one who brings the situation to light.

Attempts to help often go badly. Well-meaning and frustrated family members usually make the biggest bungle: clearing out, or transforming a cluttered home to a pristine one, often without the resident’s knowledge or input. And hoarders commonly meet such “fixes” with sadness, terror, defensiveness, anger, shame, and anxiety.

Experts say that targeted “clear-outs” deal only with the “product” of the disorder, not the disorder itself, and rarely end the behavior by failing to recognize it as a behavioral condition instead of a lapse in judgment.

“It’s not about the stuff,” says Franklin. “Clutter is just the tip of the stuffberg.”

Psychologist Michael A. Tompkins, co-author of Digging Out: Helping Your Loved One Manage Clutter, Hoarding, and Compulsive Acquiring, agrees. “‘Curing’ hoarders means asking them to lose some of the ways they feel helpful and effective,” he says. “People who hoard believe their possessions or their hoarding behavior bestows on them an important role or represents an important personal value.”

Help for Hoarders

He says that there may be some ways for outsiders to help, but cautions that sensitivity and patience are prerequisites.

Franklin emphasizes there is currently no “magic pill” known to target Hoarding Disorders, though medications may help alleviate other conditions — such as depression — that make it more difficult to work on hoarding issues; an estimated 69{d0e74b8a3596e4326b45924d39792f257a1f9983beed4201831d386befd3d18e} of all hoarders also have a major depression disorder. For hoarders open to help, he says the most effective treatment is cognitive behavior therapy that incorporates skills training in organizing and practicing discarding as well as challenging thoughts and beliefs to help prevent relapses.

In dealing with the actual neatening of the premises, Franklin says many hoarders are more open to working with a professional organizer than a family member or mental health professional. Be sure any one you consult has experience in hoarding issues.

For hoarders who are not open to help, he encourages focusing on “harm reduction”— targeting a potential danger and following a strategy to achieve it. For example, if a hoarder has a particular problem with accumulating paper, limit magazine subscriptions to two per year and book purchases to one per month. If the problem is a hazardous accumulation of items on the stovetop, strive to maintain a 24-inch clutter-free clearance around the stovetop at all times.

“The good news is that there are now a growing number of resources available, including treatments and support groups focusing on hoarders,” Franklin says. “Make the effort to connect the hoarder to them.”

Where to Turn for Help

While available resources vary greatly according to locale, mental health associations in many cities offer de-cluttering classes and support groups. And a growing number of communities have established task forces, usually composed of various experts: social workers specializing in treating older adults, pest control, police and fire department personnel, professional organizers, and family members.

Some task forces and separate organizations also incorporate former hoarders, who may be less judgmental and more understanding in working with their peers than those who have not been affected by it.

Organization to turn to for help include:

• Clutterers Anonymous, a 12-step fellowship program operating internationally, offers support and resources to clutterers and those who want to help them, as well as running meetings in person, by Skype, and phone;
• The Institute for Challenging Disorganization provides education, research, and strategies to benefit people challenged by “chronic disorganization,” and
• The National Association of Professional Organizers offers a database of trained organizers, searchable by locale.

And a few publications also offer targeted guidance, including:

• Digging Out: Helping Your Loved One Manage Clutter, Hoarding, and Compulsive Acquiring, by Michael A. Tompkins, Tamara L. Hartl, and Randy Frost
• Buried in Treasures: Help for Compulsive Acquiring, Saving, and Hoarding by David Tolin, Randy O. Frost, and Gail Steketee, and
• “Beyond Overwhelmed.” Published in 2013 by the New South Wales Hoarding and Squalor Taskforce, this 100-page paper is lauded internationally as a definitive primer on hoarding, its causes and effects, and possible interventions.