An 'Unseen' Struggle: Addressing Hoarding Disorder in Rural Communities

by Gretel Kauffman

On television, a cluttered house is often portrayed as a problem quickly solved with a professional cleaning crew — but the realities of hoarding disorder and its treatments are more complex, and people living with the condition in rural areas may face additional challenges.

Hoarding disorder is a relatively new condition in the Diagnostic and Statistical Manual of Mental Disorders (DSM), having been officially added to the manual in 2013. But many people with the diagnosis have struggled for much longer than that to declutter their homes, with their challenges compounding over time, experts say.

Left untreated, the disorder can lead to health risks and a hazardous home environment, and may exacerbate other conditions such as depression and anxiety. In rural settings, identifying and reaching people struggling to part with their possessions can be extra difficult — and for those who do seek help, resources are often not as readily available as they might be in urban areas.

There are still those same underlying urges to save items and difficulty getting rid of things, but the motivating factors that lead someone to seek out treatment are going to be very different.

"There are still those same underlying urges to save items and difficulty getting rid of things, but the motivating factors that lead someone to seek out treatment are going to be very different," said Mary Dozier, PhD, a professor of clinical psychology at Mississippi State University who studies hoarding disorder in rural populations.

Aging in a Cluttered Place

Hoarding disorder is defined in the DSM as "persistent difficulty discarding or parting with possessions, regardless of their actual value…due to a perceived need to save the items and to the distress associated with discarding them." This difficulty "causes clinically significant distress or impairment in social, occupational, or other important areas of functioning," the manual states, "including maintaining a safe environment for oneself or others."

"It's not that [people with hoarding disorder] are lazy, and it's not that they're messy even," said Tara Ferrante, LMHC, a private practice counselor specializing in the treatment of hoarding disorder in Amherst, Massachusetts. "It's really an attachment to things. A lot of times, they want their homes to look better, too. They just don't quite know how to get there."

…[people with hoarding disorder] want their homes to look better, too. They just don't quite know how to get there.

About 2% percent of the general population experiences hoarding disorder. Among older adults over 55, the prevalence rate jumps up to more than 6%, making people increasingly vulnerable to the disorder as they age.

"Hoarding disorder is something we need to pay attention to with the aging process because, besides dementia, it's the only disorder that we know to increase in prevalence and severity" as people get older, said Catherine Ayers, PhD, a professor of psychiatry at the University of California San Diego.

Ayers, who has studied hoarding tendencies in older adults for the past two decades, said she first became interested in the topic after noticing a "trend of older people suffering from having too many possessions and not being able to use their space in the way they intended."

"A lot of people were not able to age in place, which is a very important thing in the aging process," Ayers said. "People's free will to choose where to live was being compromised due to the hoarding."

A few different factors may contribute to these increases in the prevalence and severity of hoarding disorder later in life, according to Ayers and Dozier, including some natural consequences of aging.

As we get older, there's a natural accumulation of stuff.

"As we get older, there's a natural accumulation of stuff," Dozier said. "Think about every time you bring a pile of mail into your home, or you get a Christmas present from your aunt and you say, 'Oh, I don't really like this clock, but my aunt gave it to me so I'm just going to put it in the closet.'" For someone who isn't in the habit of decluttering, "things will just keep piling on."

Aging brings "normal decreases in executive functioning," Dozier noted, making it more difficult to make decisions about which items to discard. Age-related changes in strength and flexibility also make it harder to physically move things around.

"Somebody who maybe always had a little bit of clutter might suddenly really struggle to make those decisions," Dozier said. "They come home with a stack of papers from the doctor and say, 'I don't know if I'm supposed to keep this or not,' or they aren't able to move objects off their bed to sleep on it. There's an increase in the dysfunction of what used to be a tolerable level of clutter."

Among older adults, especially those in rural areas, Dozier said she also sees a hesitation to let go of family heirlooms or other items with sentimental value.

"Culturally, I think we have more folks [in rural areas] that have lived for generations in the same area and might have more items of sentimental value around the home," Dozier said. "Here in Mississippi, a lot of folks will say things like, 'I can't ever get rid of this fancy china because my kids don't want it, but it needs to stay in the family, so I'm going to hold onto it.'"

The health risks associated with excessive clutter — including an increased risk of falling, fire hazards, food contamination, poor sanitary and hygienic conditions, trouble keeping track of medications, and infestations of mold, insects, or rodents — are well-documented. But some medical problems may also contribute to hoarding tendencies.

A study co-authored by Ayers found that older adults with hoarding disorder reported "significantly more" health conditions than their peers without hoarding disorder, with 9 out of 10 people with hoarding disorder reporting at least one medical condition compared to half of those without the disorder. Head injuries, arthritic conditions, diabetes, seizures, lung conditions, hematological conditions, and sleep apnea were especially common among the hoarding disorder group, the study found.

Figuring out the reasons for this relationship between hoarding disorder and medical conditions will require further study, Ayers and her co-authors concluded. But they had a few ideas about why the correlation might exist: For one, the study notes, people with hoarding disorder tend to be less likely to visit their primary care doctor regularly. And in some cases, medical conditions might make it more difficult for people to physically declutter their homes.

"Even if somebody is in treatment and able to make decisions about discarding and letting those possessions go, physically sometimes people are not able to do those things," Ayers said.

These instances often require outside help to physically assist with the decluttering process. In places without hoarding-specific resources available, this might mean seeking help from a local church, or even from a mail delivery person, Ayers said.

We do need to get creative, and we have gotten creative in many cases.

"We do need to get creative, and we have gotten creative in many cases," Ayers said.

An 'Unseen' Disorder

In rural areas, getting someone into treatment in the first place can be a challenge, as hoarding disorder is often less visible in less populated settings. Ayers describes the disorder as often "unseen" in rural environments: "It's not bothering other people, because there's so much space," she explained. "They don't have a neighbor that is having roaches or bedbugs come over, so there's no urgency yet."

A cluttered house far from neighbors is less likely to attract attention than a cluttered city apartment, Dozier noted. In a study of eight older adults with hoarding disorder living in rural areas, Dozier found that half of the participants had experienced at least one intervention from family members, with just one participant having experienced an intervention from a property manager or other source.

There isn't the same impetus to seek out treatment that you might have in a larger city.

"There isn't the same impetus to seek out treatment that you might have in a larger city, where your neighbor is knocking on your door or calling the police on you, or your property manager is trying to intervene because of issues with fire hazards," Dozier said. "You're going to be less likely to be noticed by the people who would do forced interventions than you would in an urban area."

Rural homes and properties are often larger than in cities, Dozier added, meaning that excessive clutter might not always be as apparent to visitors.

"You might walk into a home and it doesn't immediately seem like there's an issue with clutter, but then you turn a corner and find that a whole wing of the house is cluttered up, or the barn outside is cluttered to a point where they can't use it anymore," Dozier said.

To identify and treat hoarding disorder early on, Ayers recommends that primary care providers ask all of their patients a few simple, non-stigmatizing questions, such as, "Does the number of possessions you have in your home make it difficult to use the rooms in the way they're intended?" or "Have friends and family members complained that you have too many items in your home?"

For friends and family members of people with undiagnosed hoarding disorder — including those who may not visit their primary care provider regularly — she suggests inviting yourself over to the person's home.

…what I recommend for those remote or rural areas is truly reaching out, connecting, and trying to just be present in the living space.

"When you know that somebody's coming over, what do we all do? We run around and we pick things up," Ayers said. "And in those moments, for a person with hoarding disorder, it brings awareness that there's an issue here because you know that somebody else is going to see it. So what I recommend for those remote or rural areas is truly reaching out, connecting, and trying to just be present in the living space."

These visits can start an important conversation, Ayers continued.

"Going over to a person's home naturally creates space for discussions," she said. "'It looks like you have a number of these things. Are you having difficulty getting rid of them, or is there some way I could help you?' You want to open up the conversation in a way that normalizes hoarding, because it is quite prominent and prevalent, and then talk about it in a very nonjudgmental way. Finally, offer to provide some support around getting a person into treatment, because that is the ultimate goal."

Rural Resources

While larger cities often have task forces and other resources specifically for people with hoarding disorder, hoarding-specific resources tend to be fewer and farther between in rural areas. Ideally, Dozier says, a provider will be able to visit with a patient in the patient's home to better help them sort through and discuss their clutter, whether through in-person visits or via telehealth calls.

Ferrante says the growing popularity of telehealth post-2020 has made it easier for mental health providers in her region to connect with rural clients. The local mental health agency Ferrante previously worked for hadn't allowed for home visits, requiring patients with hoarding disorder to bring their possessions from home into the office to talk through with their provider.

Before the pandemic, no one from the [rural] Berkshires [region] was coming in to get this [hoarding disorder] treatment, and now they are.

"If people were living in rural areas and they didn't have access to public transportation, or they didn't have access to their own vehicle, they just weren't able to get the support," Ferrante said. "Now that we have telehealth as an option, we're able to be in people's homes. Before the pandemic, no one from the [rural] Berkshires [region] was coming in to get this [hoarding disorder] treatment, and now they are."

While Ferrante describes the support for people with hoarding disorder in her region as a "work in progress," largely-rural Western Massachusetts has more resources available than most non-urban areas. ServiceNet, the local nonprofit mental health agency, offers hoarding disorder treatment services, and a private consulting team made up of two people with lived experience with hoarding disorder provides in-home support to people going through treatment.

To better coordinate the resources available, Ferrante and others formed the Western Mass Hoarding Disorder Resource Network, a group of volunteers from various local agencies that meets once a month.

"It's a place people can come and say, 'Hey, I just encountered this individual with too much stuff in their home and they're facing eviction. What are the resources we can provide?'" Ferrante said. "And we do some brainstorming together."

The Network also hosts conferences and trainings, shares informational videos about hoarding disorder on social media, and has organized free, grant-funded workshops for local people with hoarding disorder. The Buried in Treasures Workshop, based on a book with the same name, lasts 16 weeks and is a curriculum-based support group where participants discuss, and learn new strategies for, their hoarding disorder treatment journey. After the 16 weeks have ended, participants have the option of continuing their own peer-led support group, called the Finders Keepers Group.

While the workshops used to be held in person, since 2020 they've been held over Zoom — a shift that has also made it easier for people in farther-flung rural communities to participate, Ferrante said.

"It helps to hold people accountable and helps them identify how to start to practice applying what they're learning," Ferrante said.