Dianne Sandman, a senior paralegal with Community Legal Aid of Central Massachusetts, started seeing more people facing eviction because of hoarding a few years ago. So in 2009 she pulled together the Central Massachusetts Hoarding Task Force to help professionals understand the disorder.
Fire departments have faced dangerous situations when they enter a burning home piled high with clutter.
Boards of health find people in practically unlivable situations, with massive amounts of trash, food or animals stored in a dwelling.
Compulsive hoarding has grabbed the public’s attention, prompting a reality TV series and spinoffs. For people who work with those who suffer from the disorder, however, it’s a slow, difficult process to treat. And the health and safety hazards facing the person who hoards can be serious.
Carla Kenney is a cognitive-behavioral therapist from Uxbridge who works with people throughout the state who have obsessive-compulsive disorders including hoarding. She said hoarding was listed as its own disorder for the first time this year in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, or DSM-5.
“Hoarding is the excessive acquiring of all sorts of items. The person collecting these items believes that they all have value, quite a bit more than what the average person would think,” Ms. Kenney said. “A lot of people who hoard collect and collect and collect. Some are also shopaholics.”
Besides acquiring things, people who hoard have difficulty discarding items.
Ms. Kenney said: “Some people who hoard can’t even sleep in their beds, there’s so much stuff on it. They can’t use their kitchen because everything’s covered. The main function of rooms becomes non-existent.”
According to the International OCD Foundation, up to 5 percent of the world’s population displays clinical hoarding.
While fire officials couldn’t comment on individual cases, state Fire Marshal Stephen D. Coan said, “The Office of the State Fire Marshal has investigated several fires in which we have observed there are storage issues within the property.”
He said stored material can contribute to the cause of a fire by being too close to heaters or stoves, and fuel the spread of the fire by providing more material to burn. Further, the stored items can block exits, trapping inhabitants.
“Hoarding is one of the most dangerous things we deal with,” said Shrewsbury Fire Capt. Aaron Roy. “When you’re looking for somebody, when you can’t tell what’s the walls and what’s the stairwell, it’s so dangerous. And it’s more prevalent than you think.”
“It’s a big problem and it seems to have grown bigger in the last 10 to 15 years,” Ms. Sandman said.
She said the public is more aware of hoarding now. But she sees it stemming from people feeling less connected to their families and communities.
“Their belongings become more important to them because that’s all they have,” she said.
“I think housing authorities and boards of health are recognizing that it’s a mental health disorder,” she said. “Although the tenant can request reasonable accommodation because it’s a disability, they have to weigh that against the effect on other tenants.
“They could potentially end up on the street,” she added. “Sometimes, they don’t find the motivation (to seek help) until they’re facing the loss of their housing. Sometimes, if they have other severe mental health issues, the threat of eviction might not be enough.”
Ms. Kenney said that in cognitive-behavioral therapy, a predominant treatment for hoarding and OCD, the therapist helps the person understand distortions in their thinking and then works on behavioral tasks to retrain their brain to think differently.
For example, a counselor might accompany someone who hoards to a yard sale where the person might touch things he or she wants to buy, but then work with the person to put the items down and walk away.
Medication for depression or anxiety can help treat some symptoms but not the hoarding behavior itself, Ms. Kenney said.
Hoarding disorder, which generally begins during the teenage years, can become especially problematic for the elderly. The piles of clutter around the home can make it more dangerous for those with declining mobility and further isolate them from others.
Michael J. Nowicki, a clinical social worker with Community Healthlink, runs a hoarding support group in collaboration with Elder Services of Worcester Area Inc.
The “Buried in Treasures” work group for ages 60 and older runs for 15 or 16 weeks, starting in April. A new session begins next spring.
Mr. Nowicki said, “With the elderly, they’re reaching the phase of older age and a lot of it has to do with loss. You’re losing loved ones, your job, your ability to drive — it makes you more protective and want to hold onto things.”
Group members do homework to become more aware of their behavior, challenge their thinking about acquiring or not getting rid of items (“If I throw this out, what’s the worst thing that could happen to me?”) and work toward getting rid of things.
One participant has someone come in to help discard items for three hours a week.
“That has taken five to six years to get that far,” Mr. Nowicki said. “Most of the time it has to go piece by piece.”
He said finding funding for a trained person to help with cleanups is an issue for many moderate-income seniors, too.
Ms. Kenney agreed that the hoarding TV shows didn’t portray what a long and painful process it was to help someone clear out their home.
“The problem is maintaining it, and they don’t show that part,” she said. “Or they don’t show the emotional process of discarding that stuff.”
Dr. Lisa Price-Stevens, medical director for Fallon Total Care, a multidisciplinary program of Fallon Community Health Plan for people ages 21 to 64 with disabilities and low income, said that while safety is the first priority, the care team focuses on each member’s own goals to help them make progress.
Dr. Price-Stevens said during one initial home assessment, one person could only open the door halfway because of the clutter. The care team learned the person was threatened with eviction.
“You don’t approach a hoarder by saying, ‘This is not right,'” she said.
The team tried to connect with the person about goals including not losing the home or contact with a family member. Each time a therapist, nurse or case manager came in, the individual had cleared another pathway through the home.
“It showed the importance of relationships and bonds,” Dr. Price-Stevens said. “We had to take baby steps with this person because it’s a disorder.”
Dr. David A. Wilner, medical director for Fallon’s Summit Elder Care, which offers a multidisciplinary team and adult day health services for the elderly who are nursing-home eligible, said, “We do have participants that have some degree of hoarding. Once someone’s enrolled with us, we have to do what we can to make it safe for them to stay in the community.”
Local boards of health are often stymied when trying to find help for adults who aren’t eligible for elder services. Sturbridge Board of Health Chairwoman Linda M. Cocalis said, “If the person doesn’t want help, there’s not a lot you can do about it, frankly.”
She said towns have to go to court to gain entry to the home and prove that there is a danger.
“These are the people that fall through the cracks. Hoarding becomes a real issue when there’s children involved in homes,” she said.
“We need to address the mental health issues. The state needs to help because we don’t have resources.”
Contact Susan Spencer at firstname.lastname@example.org. Follow her on Twitter @SusanSpencerTG.