Advocates for those with hoarding disorder say the help they need goes beyond clearing clutter
An elderly Port Orchard woman who had filled her house with stuff was living in a car in her backyard. In Centralia, a man who had amassed acres of junk cars and scrap metal prompted Lewis County to foreclose on his property. In Bremerton, animal rescuers forced a couple to give up the more than 70 cats they had in their camping trailer. The reality TV show “Hoarders” depicts stories of people who can’t control their impulse to collect stuff, but real-life hoarding stories are all around us.
Beyond the sensational storyline, hoarding is a complex mental health concern that affects millions of Americans, their families and the communities in which they live. In May, the American Psychiatric Association recognized hoarding as a psychiatric disorder by adding it to the Diagnostic and Statistical Manual of Mental Disorders (DSM).
Between 2 to 5 percent of the U.S. population may be affected with hoarding disorder. Symptoms include excessive collection of items and persistent difficulty and anxiety related to parting with those items.
In Washington, as many 345,000 people could meet clinical criteria for hoarding disorder. Gov. Jay Inslee declared Oct. 8-15 Hoarding Disorder Awareness Week, and while this may have raised the profile, experts say hoarding disorder is still widely misunderstood.
‘Not just about stuff’
Often rooted in trauma, grief or loss from early childhood, hoarding disorder is “not just about ‘stuff,’” said Jennifer Sampson, president and co-founder of The Hoarding Project, a Tacoma nonprofit that offers awareness and support for those affected by the malady.
Sampson, a licensed marriage and family therapist who completed her PhD dissertation on hoarding, said hoarding may begin with difficulty discarding items, but can include a spectrum of behaviors.
In extreme cases, people may fill their homes with shopping purchases, food, trash or animals. These cramped living conditions, with only narrow pathways winding through stacks of clutter, make it hard for them to use areas of the home for their intended purposes. For example, kitchens can become so cluttered that people with hoarding disorder can no longer cook in them.
Public health concerns such as unsanitary living conditions and fire hazards often bring people with hoarding disorder to light, but Sampson said these examples should not define the disorder.
“These are really extreme cases,” she said.
Even for those with visible symptoms, help can be difficult to come by. Lacking training and education about the disorder, social service providers who come into contact with those with hoarding disorder may be unable to identify and address their symptoms. And since people who hoard often don’t see their hoarding as a problem, they may not seek help on their own.
As a result, responses to hoarding tend to emphasize the symptoms of hoarding — clearing the abundant piles of clutter — rather than preventing and intervening in the disorder.
For those subjected to them, these one-time clean-outs can be traumatic, and they rarely address the underlying mental health problems, Sampson said.
After their items are cleaned up and cleared away, individuals who hoard often relapse, she said.
Clean-outs are also expensive, costing the individual or local government from several thousand dollars to $150,000, Sampson said.
As part of her ongoing research on hoarding, Sampson is now recruiting people who have undergone a forced clean-out. Their stories may inform more ethical and empowering ways of addressing this disorder long-term, she said.
Risk of eviction
Low-income people who hoard could be more likely to face penalties for their behavior. Residents of public housing are required to submit to an annual inspection, and those with hoarding disorder are often unable to conform to the standards for their housing unit, increasing their risk for eviction and homelessness.
Terina M. Bainter, a professional organizer in Pierce County, said hoarding can have a ripple effect.
“Hoarding doesn’t just affect the person with the disorder; it affects the family, the friends and the community.”
Emotional, medical, social, legal and financial problems can accompany hoarding disorder, but Bainter believes the way out often starts from within.
“The biggest thing with individuals with hoarding disorder, they have to get to the point where they want to change,” she said.
Given the social stigma surrounding it, hoarding disorder can be isolating, Bainter said. She tries to break through these barriers: “We’re not there to judge, we’re there to help.”
More help is on the way. In 2013, Sampson initiated The King/Pierce County Hoarding Task Force to help service providers and community members come up with ways to address hoarding that will allow families to remain in their homes.
Representatives from public housing are among the task force members, and they are charged with finding ways to avoid forced clean-outs and evictions.
Fire departments have also changed their approach. Previously, when hoarding was discovered as a result of a 911 call, there was no avenue to address the issue, said Tami Kapule, an incident prevention coordinator for Fire Department Community Assistance Referral and Education Services (FDCARES) at the Kent Fire Department/Regional Fire Authority.
“Fire crews have an awareness of the safety concerns related to this disorder but are not trained to deal with hoarding,” she said.
Kapule accepts referrals from the community, including firefighters who have recently responded to a 911 call, and acts as a liaison/advocate for those who are affected by hoarding.
“Now with FDCARES, the crews have a process to report the findings and request follow-up,” Kapule said.
Fire crews recognize that addressing hoarding disorder is a shared responsibility.
“It is a community problem that truly takes a supportive team approach to address and get those that need help the assistance they need,” Kapule said.
The King/Pierce County Hoarding Task Force comes together monthly to talk, provide educational sessions, connect communities with resources and work on ongoing projects.
Their meetings are open to the public every third Tuesday morning of the month from 9:30-11:30 a.m.
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