This story first appeared in How We Care, a weekly newsletter by Spotlight PA featuring original reporting and perspectives on how we care for one another at all stages of life. Sign up for free here.
Cindy’s home has so much stuff that she can’t use certain areas. Boxes form an archipelago through her living and dining rooms. Papers blanket a large wooden table.
Near a collection of scented candles, there’s a half-used roll of gingham-patterned contact paper. Cindy has three more unopened rolls in her office, which is so packed with craft supplies she’s unable to walk across the room.
“I know that it would be good for someone,” Cindy said as she unspooled some of the shiny blue and white paper. Like many people with hoarding disorder, Cindy tends to buy impulsively, but also struggles to throw things away because she dislikes being wasteful.
Spotlight PA is using only Cindy’s first name because of the stigma that surrounds hoarding disorder. People who spoke to Spotlight PA for this story said they are sometimes viewed as lazy, dirty or strange.
Matt Williams, founder of Fight the Blight, said he encountered this prejudice on social media when a news story discussed a free course his organization offers to adults in Westmoreland County who struggle with hoarding.
“Somebody said, ‘What’s the point? They don’t even know that they have the issue,’” recalled Williams, who co-facilitates the course.
Hoarding disorder is a psychiatric illness that causes people to accumulate an excessive amount of things that create clutter. In severe cases, homes can be so crammed that people can only move between rooms through narrow pathways.
Individuals with the disorder also have a hard time parting with their objects, often due to emotional attachments. Cindy, for instance, for decades kept calendars from the 1970s that belonged to her late mother, who died when Cindy was 17.
The disorder is a common diagnosis that affects between 2% and 6% of the U.S. population — a higher rate than schizophrenia.
Though hoarding behaviors tend to first appear during the teenage years, the disorder is more extreme among older adults (partly because they’ve had more time to collect things). And due to demographic shifts, hoarding disorder is 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.
The urge to acquire also strengthens as people age, explained researcher Catherine Ayers, a professor with the University of California San Diego’s department of psychiatry.
“It is the only mental health disorder besides dementia that increases in prevalence and severity with age,” Ayers said.
Researchers are still working to understand the biological and environmental factors that drive hoarding. Ayers theorizes that age-related cognitive changes — particularly those in the frontal lobe that regulate impulsivity and problem-solving — might exacerbate hoarding disorder.
What is known is that individuals with this diagnosis often experience depression and social isolation. A 2020 study found that hoarding correlates with homelessness, possibly because people with the disorder are more likely to be evicted.
Clutter also creates physical risks. Having too many things in one space is a fire hazard. And it’s difficult to move around a disorderly home, which is especially dangerous for older adults because falling-related health problems increase with age.
Some people with hoarding disorder struggle to keep their homes sanitary, which can affect community health. Earlier this year, Bucks County commissioners wrote to U.S. Sen. Bob Casey (D., Pa.) about communal mold, insect and waste hazards that can result from hoarding affecting neighboring households.
As outlined in a July report on the disorder from a congressional committee that Casey chairs, people with this disorder can also have strained family relationships. This has implications for caregiving. Adults whose parents have the disorder might distance themselves out of frustration — leaving the person further isolated.
Unfortunately, hoarding disorder tends to be treatment-resistant. As a 2018 study that was led by Ayers notes, people need to be highly motivated and often require substantial support to remain engaged with their therapy. Attrition rates are high.
But progress is possible, as Cindy’s home shows. In her bedroom, everything has its place: The vacuumed floor is free of clutter, her bed is made and carefully placed trinkets and bibelots decorate the nightstands and dresser. Cindy’s bathrooms and kitchen are also clean. She said the order is calming.
Cindy attributes her success to Fight the Blight, which teaches exercises based on cognitive behavioral therapy to help people better understand their desire to acquire so many things. Since completing the course, Cindy said she has shopped less and become more thoughtful about her possessions.
She even parted with most of her mother’s calendars, reading through every page one last time.
“I could remember some of those days so clearly that she wrote on the calendar … like she wrote down which day she washed her hair,” she said.
Cindy’s daughter told Spotlight PA that she’s also seen a change in her mom. Clutter and cleanliness were not issues at a recent family game night held at Cindy’s apartment.
“It felt comforting,” said Cindy’s daughter. “It felt like home.”
Cindy said it’s been healing to spend time with others who have hoarding disorder, and she has kept in touch with some of her classmates.
Williams suspects that part of the camaraderie also stems from the class encouraging people to consider the positive traits that contribute to their hoarding. Many individuals with the disorder that he’s met are artists or crafters.
“They’re typically very creative people that can find a use for almost anything and can visualize something that they can make with it,” said Williams, who adds that this reframing helps people understand what fuels their disorder.
When someone reaches the point where they want to declutter their home, Fight the Blight helps them start the process of cleaning, removing and organizing. People earning up to 150% of the federal poverty level receive this assistance for free. Those earning above this threshold pay on a sliding scale, though costs vary depending on the size of a property and severity of clutter.
Supporting organizations like Fight the Blight is an excellent first step in systemically responding to hoarding, said Christiana Bratiotis, who studies community-based interventions.
Bratiotis — an associate professor with the University of British Columbia School of Social Work — told Spotlight PA that helping someone with hoarding disorder can be a complex operation. Landlords, first responders, code enforcement officers, public health workers and veterinarians are among the specialists and stakeholders who might have to rally to assist one person.
Given this, simply emptying peoples’ homes in one fell swoop might appear to be the best option. But that is a bad idea, said Kiara Timpano, a University of Miami psychology professor. This approach fails to address people’s underlying issues and can be traumatic.
“Imagine if I had you pick your five most valued treasures in your home, and then I just came and I toss them out,” she said.
Ultimately, the home of someone with the disorder might always contain clutter, and that’s OK. The goal of treatment is to make their space healthy and safe, Timpano said, not to earn Marie Kondo’s approval.
Cindy’s home appears safe — save for a few tripping hazards. But she plans to keep working on managing her illness because she doesn’t want to leave a mess for her adult daughters when she dies.
It’s hard. Cindy likens it to moving a mountain of salt with a teaspoon.
“And you have to be OK with doing it day, after day, after day,” she said.
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