Officials expected to take part in the task force include police and fire departments, code enforcement offices and animal welfare agencies.
WILMINGTON, Del. -- Hoarding isn't just about accumulating piles of stuff most of us would throw away. It's more than the ceiling-high mounds of newspapers, books and dolls as shown on reality television shows like A&E's "Hoarders" and TLC's "Buried Alive."
It's about people paralyzed by the thought of getting rid of personal belongings, no matter how much – or little – they are worth. It's about the social, physical and emotional isolation their hoarding behaviors cause. It's about safety, not just for the hoarder but for those who live near them as well.
Statistics are hard to come by – another sign of the stigma associated with the disorder, experts say – but it's estimated that about 5 percent of the population has a hoarding disorder. That works out to about 15 million Americans.
In Delaware, where as many as 45,000 people are estimated to have problems with hoarding, the problem has motivated the state to create a multidisciplinary task force to address the challenges these residents create. Last month, state officials and Christiana Care Health System teamed up for a daylong symposium for health professionals on hoarding. The event sold out soon after it was announced.
"There's no one of us who can solve the problem by ourselves. It goes across many facets of the community," said Kathleen Weiss, who helped organize the conference for the Delaware Department of Health and Social Services. "That's why we feel the task force is necessary."
One of the challenges is that unless the hoarding spills outdoors or somehow becomes public, those who suffer can keep their situation private.
"Many people have family members they don't know have a hoarding problem unless it gets completely out of control. It's behind closed doors," said psychologist Alan Schwartz, director of psychology for Christiana Care Health System. "The folks who have it live with shame, embarrassment, guilt. They're not inviting people over. It's really almost a secretive illness."
Initially, hoarding was considered a type of obsessive-compulsive disorder. More recently, researchers have found that only about 20 percent of people who hoard also have OCD. Depression is much more common, occurring in about 50 percent of those with hoarding disorder.
Earlier this year, the American Psychiatric Association included hoarding as a distinct disorder in its updated Diagnostic and Statistic Manual of Mental Disorders, known as the DSM.
Several factors influence the likelihood that a person may be affected by hoarding, Schwartz said. At least 50 percent of people diagnosed with hoarding disorder also have a first-degree relative – such as a parent or sibling – who also has the problem.
Trauma also can trigger hoarding behaviors, such as a death in the family or an adult child leaving for college. In some cases, people who had a tendency to accumulate items may have had someone who helped keep them from going overboard in their hoarding. When that person is no longer there – because of a death for instance – the hoarding may increase. People over age 55 are three times more likely to have a hoarding disorder, Schwartz said.
Cory Chalmers is a California-based biohazard specialist who works with people with hoarding disorders. He estimates his company, SteriClean Inc., works in about 20 to 40 homes per week. They see people of all races, genders and socioeconomic backgrounds who are struggling with the need to acquire more stuff, even when they can barely get through their own homes.
"This isn't just someone who is dirty and lazy. It's a mental disorder," said Chalmers, who has been featured as an expert on A&E's "Hoarders." "To a person who doesn't suffer, you may think why is that such a struggle to get rid of what you don't need. But to them, just to make a decision, their brain is complete chaos. They're not thinking clearly."
Hoarders don't just fill their homes with books, papers and knickknack collections. In some cases, well-meaning people wind up collecting animals as well. It becomes a problem when the person fails to provide minimum standards of care for these animals, causing them to suffer from neglect, starvation or other untreated medical problems, said Hetti Brown, executive director of the Office of Animal Welfare, part of the Division of Public Health.
"Whether or not it is hoarding is not about the number," Brown said. "It's more about the ability to provide adequate care for those animals. Or the lack of awareness there is to care for them. They don't see the animals are suffering."
Like the other types of hoarding, cases of animal hoarding are difficult to document. Brown said one animal agency reported it has handled 10 cases of hoarding so far this year.
But simply removing the piles of stuff from the home or taking animals to a shelter isn't going to fix a hoarder's problem, Schwartz said. Patients with hoarding disorders typically need to address the other issues in their lives that may be causing the hoarding.
Treatment may involve helping hoarders to understand their own behavior and connect with the emotions they're feeling. Although it may seem counterintuitive, the cleanup is actually one of the last steps people should take when dealing with a severe hoarding problem, said Chalmers, who runs a hoarding task force in San Bernadino, Calif.
"Without appropriate intervention, it will be a never-ending cycle of response," Brown said. "If that person is allowed to go back to their typical life and receives no ongoing support, the likelihood they will start hoarding again is very, very high. That's another reason we need this task force."
In advance of the hoarding task force, the state is creating an advisory panel to try to determine stakeholders who may be able to offer input into hoarding issues, Weiss said. Representatives from police and fire agencies, local hospitals, code enforcement, the Division of Substance Abuse and Mental Health and animal welfare are expected to be part of the panel, which should begin next month.