How to Help a Hoarder

Rose Edmunds knew something was wrong, but she didn't know what.

The 10-year-old in Leeds, England, lived in a home cluttered with piles of old newspapers, stacks of books, heaps of clothes, overflowing dishes, decaying food and garbage. Her gut told her that wasn't normal, and she made excuses when friends wanted to come over.

"I felt so ashamed like it was all my fault," remembers Edmunds, now a 53-year-old author in Brighton, England, whose childhood house "descended into squalor" after her father died in the 1970s. For years, she tried to curb her mother's mess, hoping each clean would be the turning point to a tidy home. But each time, the chaos came back. "It was a draining cycle of hope and despair," Edmunds remembers. "In the end, I gave up."

Today, Edmunds knows she wasn't to blame. She also knows her mother's behavior has a name: hoarding. It even has a psychiatric diagnosis: hoarding disorder, a condition in which people acquire and keep things in such excess that it causes significant distress or impairment in their lives, says Dr. Sanjaya Saxena, director of the University of California--San Diego's Obsessive-Compulsive Disorders Program who treats people with the condition.

[See: Hoarding, ADHD, Narcissism: Inside the Minds of History's Great Personalities.]

While hoarding disorder was historically categorized as a subtype or symptom of obsessive-compulsive disorder in the American Psychiatric Association's Diagnostic and Statistical Manual, it earned its own diagnosis in 2013, in part because genetic, diagnostic and brain imaging studies show only partial overlap between the two conditions, and medications used to treat OCD don't help many of the people who hoard, says Saxena, who is also a professor of psychiatry in the UCSD School of Medicine.

"Hoarding disorder is a true neuropsychiatric disorder that is based in abnormal brain function," he says. "It's not just laziness or a moral failing or someone just not trying hard enough. People really can't just snap out of it and start cleaning up."

Unless they get professional help, hoarders and their families suffer. They may be embarrassed to invite people over, alienate loved ones and are perpetually late because they can't locate what they need before departing. In severe cases, people with the condition risk falling or even eviction because their homes are fire hazards or inaccessible to first responders.

For Edmunds, the consequences of her mother's hoarding, which went untreated, cut deep. "[My mother's] problems affected every area of my life," says Edmunds, whose latest thriller, "Concealment," draws from her experiences as a child. Today, her 90-year-old mom has dementia and lives in a long-term care facility, where her newspaper is thrown away each day upon Edmunds' instructions. "I will never know the person I might have become if my mother hadn't been a hoarder," she says.

" Outwardly, Everything Is Fine."

Hoarding disorder affects 2 to 4 percent of people worldwide, according to the International OCD Foundation, and its rates seem to be consistent across cultures and races, Saxena and others say. However, culture does play a role in what's considered appropriate to keep and throw away, points out Katie Kilroy-Marac, an assistant professor in the University of Toronto Scarborough's department of anthropology who studies people's relationships with material goods. "One of the things that's so weird about this is you can't diagnose someone with hoarding disorder in the absence of stuff," she says.

While hoarding can be more visible among older adults, that's simply because they've had a lifetime to accumulate stuff, Saxena says. Typically, characteristics of the condition, such as feeling anxious when throwing things away or holding on to items that most people would toss, emerge in teenage years. And, while a loss like a death in the family can make those traits "a whole lot worse," as was the case with Edmunds's mom, trauma doesn't seem to cause the condition, despite what many people think, Saxena says.

There are plenty of other misconceptions about hoarders -- namely, that they're "cut off from social ties; they're not high-functioning social people; they're not people who manage lives outside of the home," Kilroy-Marac says. "I'm floored by the number of really high-functioning and very socially valued individuals who have extreme clutter issues."

[See: How Your Personality Affects Your Health.]

Even at work, hoarders' problems can go undetected, especially if they're in highly structured settings, says Saxena, adding that people with the condition also often exhibit perfectionism, procrastination and indecisiveness -- all traits related to avoiding actions that might be anxiety-provoking. "Their friends may not even know they have a serious diagnosable hoarding problem because they hide it," Saxena says, "and outwardly, everything is fine."

But people with hoarding disorder can benefit from professional mental health help, although many don't seek it because they don't think they have a problem, Kilroy-Marac says. "They tend to see the problem instead coming from all the people who are trying to invite themselves into their lives," she says. "That makes intervening very difficult."

Still, if you suspect a loved one has a hoarding problem, all hope's not lost. Here's what experts and children of hoarders recommend you do:

1. Know the difference between hoarding and sentimentality.

Keeping, say, an old postcard from a deceased relative is normal. Refusing to toss grandma's used tissue for fear that you'll lose part of yourself, disrespect her or wake up one day and regret throwing it away is not. Hoarders, Saxena says, have "the same reasons that other people have for not throwing something out, but a huge amount in excess."

2. Know the difference between hoarding disorder and another cause.

People with messy homes may travel too much to keep tidy; suffer from a mood disorder like depression that depletes their motivation to do anything, let alone clean; or have a cognitive or physical disability that makes lifting, shifting, dusting and mopping too difficult. "Not all clutter is due to hoarding disorder," Saxena says. That's why mental health professionals who treat hoarding disorder first rule out other possible explanations, including medical conditions such as a brain injury or Prader-Willi Syndrome, according to the DSM-5. They may find multiple diagnoses since more often than not, hoarding disorder co-occurs with other psychiatric illnesses such as anxiety, depression, attention deficit hyperactivity disorder and obsessive-compulsive disorder, Saxena says.

3. Seek support.

Edmunds' self-blame and lifelong distress caused by her mom's behavior is common. "Children of hoarders ... tend to feel like parents have prioritized their stuff over their relationships with them," Kilroy-Marac says. But virtual or in-person support can help. Children of Hoarders, an organization aiming to increase awareness of and support for children of hoarders' challenges, and your community's hoarding task force or coalition are good places to start, experts say. "Hoarders, like many other addicts, will try to suck you into their web to avoid the consequences of their own life choices," Edmunds says. "Set healthy boundaries and look after your own mental health first and foremost."

4. Approach with caution.

After establishing your own support system, talk to your loved one in terms that emphasize how you feel about his or her health and safety -- not that judge him or her for aesthetically displeasing or unsanitary living conditions, Kilroy-Marac suggests. What not to do? What reality TV shows featuring hoarders do and execute an "extreme clean" behind his or her back. "That can destroy relationships and can make the person who has the problem less inclined [to] seek assistance or accept help the future," Kilroy-Marac says. Edmunds, who once "seized the opportunity " to clear out her mother's house when she was in the hospital, puts it this way: "Cleaning out a hoarder's hoard is like pouring an alcoholic's drinks down the drain."

5. Know that treatment works.

The more researchers and clinicians approach hoarding disorder as a unique mental health condition, the more they're learning how to treat it. For about two-thirds of people with the condition, medications used for obsessive-compulsive disorder are effective. About the same fraction responds well to cognitive behavioral therapy, which challenges their unrealistic fears about throwing things out and gradually exposes them to doing so. The best solution for most, however, is some combination of the two approaches, says Saxena, whose research has found that exposure therapy combined with "cognitive rehabilitation," or training that boosts executive functioning skills like planning, decision-making and problem solving, works better than standard CBT among older adults with hoarding disorder. He and a colleague are now testing the method among younger populations.

[See: How to Find the Best Mental Health Professional for You.]

"When treatment really works, it really works well," says Saxena, who recommends using the International OCD Foundation's database to find a clinician with expertise in the area, as well as support groups and other resources. While most people who seek treatment only partially recover, he says, it's possible to recover fully. "We have seen people where ... there's virtually no hoarding and saving behavior," he says, "and they can remain free of clutter for the rest of their lives."