By Sarah Boden, KFF Health News

A dozen people seated around folding tables clap heartily for a beaming woman: She’s donated two 13-gallon garbage bags full of clothes, including several Christmas sweaters and a couple of pantsuits, to a Presbyterian church.

A closet cleanout might not seem a significant accomplishment. But as the people in this Sunday night class can attest, getting rid of stuff is agonizing for those with hoarding disorder.

People with the diagnosis accumulate an excessive volume of things, such as household goods, craft supplies, even pets. In extreme cases, their homes become so crammed that moving between rooms is possible only via narrow pathways.

These unsafe conditions can also lead to strained relationships.

“I’ve had a few relatives and friends that have condemned me, and it doesn’t help,” said Bernadette, a Pennsylvania woman in her early 70s who has struggled with hoarding since retiring and no longer allows guests in her home.

People who hoard are often stigmatized as lazy or dirty. NPR, Spotlight PA and KFF Health News agreed to use only the first names of people with hoarding disorder interviewed for this article because they fear personal and professional repercussions if their condition is made public.

As baby boomers age into the group most affected by hoarding disorder, the psychiatric condition is a growing public health concern. Effective treatments are scarce. And because hoarding can require expensive interventions that drain municipal resources, more funding and expertise is needed to support those with the diagnosis before the issue grows into a crisis.

For Bernadette, the 16-week course is helping her turn over a new leaf.

The program doubles as a support group and is provided through Fight the Blight. The Westmoreland County, Pennsylvania, organization started offering the course at a local Masonic temple after founder Matt Williams realized the area lacked hoarding-specific mental health services.

Fight the Blight uses a curriculum based on cognitive behavioral therapy to help participants build awareness of what fuels their hoarding. People learn to be more thoughtful about what they purchase and save, and they create strategies so that decluttering doesn’t become overwhelming.

Perhaps more importantly, attendees say they’ve formed a community knitted together through the shared experience of a psychiatric illness that comes with high rates of social isolation and depression.

“You get friendship,” said Sanford, a classmate of Bernadette’s.

After a lifetime of judgment, these friendships have become an integral part of the changes that might help participants eventually clear out the clutter.

Clutter catches up to baby boomers

Studies have estimated that hoarding disorder affects around 2.5% of the general population — a higher rate than schizophrenia.

The mental illness was previously considered a subtype of obsessive-compulsive disorder, but in 2013 it was given its own diagnostic criteria in the “Diagnostic and Statistical Manual of Mental Disorders,” the DSM-5.

The biological and environmental factors that may drive hoarding are not well understood. Symptoms usually appear during the teenage years and tend to be more severe among older adults with the disorder. That’s partly because they have had more time to acquire things, said Kiara Timpano, a University of Miami psychology professor.

“All of a sudden you have to downsize this huge home with all the stuff and so it puts pressures on individuals,” she said.

In Bernadette’s case, her clutter includes a collection of VHS tapes, and spices in her kitchen that she said date back to the Clinton administration.

But it’s more than just having decades to stockpile possessions; the urge to accumulate strengthens with age, according to Catherine Ayers, a psychiatry professor at UC San Diego.

Researchers are working to discern why. Ayers and Timpano theorize that age-related cognitive changes — particularly in the frontal lobe, which regulates impulsivity and problem-solving — might exacerbate the disorder.

“It is the only mental health disorder, besides dementia, that increases in prevalence and severity with age,” Ayers said.

As the U.S. population ages, hoarding presents a growing public health concern: Some 1 in 5 U.S. residents are baby boomers, all of whom will be 65 or older by 2030.

This population shift will require the federal government to address hoarding disorder, among other age-related issues that it has not previously prioritized, according to a July report by the Democratic staff of the U.S. Senate Special Committee on Aging, chaired then by former Sen. Bob Casey,D-Pennsylvania.

Health hazards of hoarding

Clutter creates physical risks. A cramped and disorderly home is especially dangerous for older adults because the risk of falling and breaking a bone increases with age. And having too many things in one space can be a fire hazard.

Last year, the National Fallen Firefighters Foundation wrote to the Senate committee’s leadership that “hoarding conditions are among the most dangerous conditions the fire service can encounter.”

The group also said that cluttered homes delay emergency care and increase the likelihood of a first responder being injured on a call.

The Bucks County Board of Commissioners in Pennsylvania told Casey that hoarding-related mold and insects can spread to adjacent households — endangering the health of neighbors.

Due to these safety concerns, it might be tempting for a family member or public health agency to quickly empty someone’s home in one fell swoop.

That can backfire, Timpano said, as it fails to address people’s underlying issues and can be traumatic.

“It can really disrupt the trust,” she said, “and make it even less likely that the individual is willing to seek help in the future.”

It’s more effective, Timpano said, to help people build internal motivation to change and help them identify goals to manage their hoarding.

At the Fight the Blight class, for example, a woman named Diane told the group she wanted a cleaner home so she could invite people over and not feel embarrassed.

Sanford said he is learning to keep his documents and record collection more organized.

Bernadette wants to declutter her bedroom so she can start sleeping in it again. She’s also glad she cleared enough space on the first floor for her cat to play.

“Because now he’s got all this room,” she said, “he goes after his tail like a crazy person.”

Ultimately, the home of someone with hoarding disorder might always be a bit cluttered — and that’s OK. The goal of treatment is to make the space healthy and safe, Timpano said, not to earn Marie Kondo’s approval.

Lack of treatment leaves few options

A 2020 study found that hoarding correlates with homelessness, and those with the disorder are more likely to be evicted.

Housing advocates argue that under the Fair Housing Act, tenants with the diagnosis are entitled to reasonable accommodation. This might include allowing someone time to declutter a home and seek therapy before forcing them to leave their home.

But as outlined in the Senate aging committee’s report, a lack of resources limits efforts to carry out these accommodations.

Hoarding is difficult to treat. In a 2018 study led by Ayers, the UCSD psychiatrist, researchers found that people coping with hoarding need to be highly motivated and often require substantial support to remain engaged with their therapy.

The challenge of sticking with a treatment plan is exacerbated by a shortage of clinicians with necessary expertise, said Janet Spinelli, the co-chair of Rhode Island’s hoarding task force.

Could changes to federal policy help?

Casey, the former Pennsylvania senator, advocated for more education and technical assistance for hoarding disorder.

In September, he called for the Substance Abuse and Mental Health Services Administration to develop training, assistance and guidance for communities and clinicians. He also said the Centers for Medicare & Medicaid Services should explore ways to cover evidence-based treatments and services for hoarding.

This might include increased Medicare funding for mobile crisis services to go to people’s homes, which is one way to connect someone to therapy, Spinelli said.

Another strategy would involve allowing Medicaid and Medicare to reimburse community health workers who assist patients with light cleaning and organizing; research has found that many who hoard struggle with categorization tasks.

Williams, of Fight the Blight, agrees that in addition to more mental health support, taxpayer-funded services are needed to help people address their clutter.

When someone in the group reaches a point of wanting to declutter their home, Fight the Blight helps them start the process of cleaning, removing and organizing.

The service is free to those making less than 150% of the federal poverty level. People making above that threshold can pay for assistance on a sliding scale; the cost varies also depending on the size of a property and severity of the hoarding.

Spinelli also said she thinks Medicaid and Medicare should fund more peer-support specialists for hoarding disorder. These mental health workers draw on their own life experiences to help people with similar diagnoses. Peer counselors, for example, could lead classes like Fight the Blight’s.

Bernadette and Sanford said courses like the one they enrolled in should be available all over the U.S.

To those just starting to address their own hoarding, Sanford advises patience and persistence.

“Even if it’s a little job here, a little job there,” he said, “that all adds up.”

This article is from a partnership that includes Spotlight PA, NPR and KFF Health News.

Spotlight PA is an independent, nonpartisan, and nonprofit newsroom producing investigative and public-service journalism that holds power to account and drives positive change in Pennsylvania. Sign up for its free newsletters.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism.