For seniors with hoarding disorder, a support group helps confront stigma and isolation

For seniors with hoarding disorder, a support group helps confront stigma and isolation

A dozen people gathered around folding tables clapped heartily for a beaming woman: She donated two 13-gallon trash bags full of clothing, including several Christmas sweaters and a few pantsuits, to a Presbyterian church.

A closet cleanout doesn't seem like an essential service. But as the people in this Sunday Night class can attest, getting rid of things is excruciating for those with hoarding disorder.

People with the diagnosis accumulate an excessive volume of things like household goods, craft supplies, and even pets. In extreme cases, their houses become so full that moving between rooms is only possible via narrow paths.

These uncertain conditions can also lead to strained relationships.

"I've had a few relatives and friends judge 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 becomes public.

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

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

The program serves as a support group and is delivered through Fight the Cloding. Westmoreland County, Pennsylvania, began offering the course at a local Masonic temple after founder Matt Williams realized a lack of after-school-specific mental health services in the area.

Fight the Blight uses a curriculum based on cognitive behavioral therapy to create awareness among participants about what fuels their hoarding. People are learning to be more thoughtful about what they buy and save, and they are creating strategies so disappointment doesn't become overwhelming.

Perhaps more importantly, participants say they have formed a community bonded by shared experiences of psychiatric illness with high rates of social isolation and depression.

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

After a lifetime of discernment, these friendships have become an essential part of the changes that could help participants eventually clear the clutter.

Clutter is catching up with 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 considered to have 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 in older adults with the disorder. That's partly because they 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 this stuff, and so it starts to put pressure on people,” she said. In Bernadette's case, her clutter includes a collection of VHS tapes and condiments in her kitchen that she said went out to the Clinton administration.

But it's more than just storing possessions for decades. According to Catherine Ayers, a professor at the University of California-San Diego, the urge to collect strengthens with age.

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

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

As the U.S. population ages, hoarding is a growing public health problem: about 1 in 5 U.S. residents are baby boomers, all of whom will age by 2030.

In this population shift, the federal government will address hoarding disorder, including not after age-related issues that it has not previously made a priority, according to a July report by the Democratic staff of the U.S. Senate Special Committee on Aging, chaired by former Sen. Bob Casey (D-Pa).

Health Dangers of Hoarding

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

Last year, the National Fallen Firefighters Foundation wrote to Senate committee leadership that “hoarding conditions are among the most dangerous conditions the fire service can encounter.” The group also said crowded homes delay emergency care and increase the likelihood that a first responder will be injured on a call.

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

Because of these safety concerns, it might be tempting for a family member or public health authority to quickly empty someone's home in one fell swoop.

That can backfire, Timpano said, because it doesn't address people's underlying issues and can be traumatic.

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

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

For example, at The Fight the Blight class, a woman named Diane told the group that she wanted a cleaner home so she could invite people in and not feel embarrassed.

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

Bernadette wants to free up her bedroom so she can sleep in it again. She is also happy that she has enough space on the first floor for her cat to play.

“Because now he has all the room,” she said, “he goes after his cock like a crazy person.”

Ultimately, the home of someone with hoarding disorder might always be a bit crowded, and that's okay. The goal of the treatment is to make the space healthy and safe, Pimpano said, not to seek Marie Kondo's approval.

Lack of treatment leaves few options

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

Housing attorneys argue that tenants with the diagnosis are entitled to reasonable housing under the Fair Housing Act. This could help give someone time to declare a home and seek therapy before being forced to leave home.

But as the Senate Aging Committee report outlined, a lack of resources limits efforts to implement these accommodations.

Hoarding is difficult to treat. In a 2018 study led by Ayers, the UCSD psychiatrist, those who engage in hoarding must be highly motivated and often require significant support to remain engaged in their therapy.

The challenge of sticking to a treatment plan is compounded by a lack of clinicians with necessary expertise, said Janet Spinelli, co-chair of the Rhode Island Hoarding Task Force.

Could changes to federal policy help?

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

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

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

Another strategy involves having Medicaid and Medicare reimburse community health workers who assist patients with light cleaning and organization. Research shows that many who hoard struggle with categorization tasks.

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

When someone in the group reaches a point to declare their home, fighting the mis-snake will help them begin the process of cleaning, removing and organizing.

The service is free for those earning less than 150% of the federal poverty level. People who come above this threshold can pay for the Schiebetkala for support. Costs also vary depending on the size of a property and the severity of the hoarding.

Additionally, Spinelli believes Medicaid and Medicare should fund more hoarding disorder peer support specialists. These mental health workers draw on their own life experiences to help people with similar diagnoses. For example, peer counselors could lead classes like Fight the Blight's.

Bernadette and Sanford say courses like the ones they are enrolled in should be available in the United States

For 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, “it adds up.”

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