For two years, a team of code enforcers, therapists, insurers and disaster response groups has traded ideas and expertise on a largely hidden problem in Allegheny County: hoarding.
The Allegheny County Office of Behavioral Health is looking to adding support groups, increasing awareness of the problem and beginning training to formalize and expand the work of its hoarding task force.
"We are starting to implement some of it at this point and hopefully get people educated that hoarding is a mental illness," said Lucille Underwood, assistant disaster coordinator for the office of behavioral health.
There are about 18,950 cases of hoarding in Allegheny County involving people 18 or older, according to Kihra Kohler, Pittsburgh Mercy Health System representative on the task force.
She said a goal of the task force is to better determine the level of hoarding in the county. Due to the clandestine nature of the disorder, most cases go unreported but it is estimated to affect 2 percent to 5 percent of the population.
"With hoarding, there hasn't been an increase in cases but an increase in awareness," Ms. Kohler said.
Hoarding was not considered its own condition until May 2013, when it was taken off the list of diagnosable criteria for obsessive-compulsive disorder and placed in its own category in most recent version of the mental health bible, the "Diagnostic and Statistical Manual of Mental Disorders."
"The frustration among the task force is that there needs to be funding. This is not a disorder people have a lot of compassion for; the outpouring isn't there," said Adele Maher, a social worker contact for the Pittsburgh OCD Support and GOAL group, the county's only one for hoarding.
Hoarding disorder involves a persistent difficulty discarding or parting with possessions because of a perceived need to save them, according to the Mayo Clinic. The condition can create such cramped living conditions that homes might be filled to capacity, with only narrow pathways through rooms or hallways. Some people collect dozens or hundreds of pets, keeping them in unsanitary conditions because they can't care for them properly.
"Not all clutter is hoarding," said Robert Hudak, associate professor of psychiatry at University of Pittsburgh. "Hoarding causes severe incapacitation that makes living spaces unusable," he said.
The accumulation of hoarded items can impede public safety response or create a fire risk. Alvin Henderson, chief of Emergency Services of Allegheny County, said hoarding fires are common and can "inhibit the work of firefighters because there is so much debris."
"People who hoard don't see trash; they see treasure and attach very special meaning to objects," Dr. Hudak said. Children can be hoarders but often do not have control of their own environments, so it does not manifest as severely as in older adults.
"A lot of people use items as tangible memories. They feel like if they get rid of that item they will be getting rid of that memory," Ms. Kohler added.
Although she does not believe there has been a rise in the number of local cases, Craig Delaney, owner of clean-up business D.A.S.H. Bio-Recovery, said he is getting called out more often to clean out homes. "With the baby boomer generation starting to reach the upper 60s, we are seeing an increase."
Ms. Maher agreed. "People reach their 50s and 60s and the mass has accumulated and then gets out of hand," she said. "I knew a wonderful, educated woman whose husband passed and she lost her home to hoarding. Now she is left with nothing."
Raising awareness is the key, said Ms. Underwood. "We need the support and education to help people understand that this is a mental disorder, not laziness. These people should not be treated in a disgusted or unkind way."
She asked anyone concerned about themselves or another to call the resolve crisis hotline 888-796-8226.
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