Benoise “Frank” Franklin, co-owner of BioOne of Daytona Beach, Fla., handles up to five hoarding disorder (HD) cleanup calls per month. The situation, as he describes it, is bleak and likely to worsen.

“This is a big up-and-coming problem,” he notes, “especially for areas like Florida, where people come to retire, leaving family in other states.” All too often, the out-of-state children and grandchildren don’t stay in touch or visit, and “by the time the family finds out there is a problem, the person needs to be removed from the situation, because they’re unable to care for themselves.”

Recognized by the American Psychiatric Association (APA) as a disorder in the 2013 publication of the Diagnostic and Statistical Manual, Fifth Edition (DSM-5), HD affects between 1.5 and 6 percent of Americans. Noting that the chance of having the condition increases with age – and observing the increasing age of America’s largest cohort, the Baby Boomers – U.S. Sen. Bob Casey (D-PA) has asked the federal departments of Health and Human Services and Housing and Urban Development to increase the resources they devote to HD-related issues.

Most HD calls to BioOne come from family members of people with HD, rather than the residents themselves.

“The embarrassment level of the person is high,” Franklin says, “even when the [clutter] problem in the home is at a lower level, and they don’t want anyone in the house.”

BioOne operates discreetly, using unmarked vehicles, and encourages families to color-code items of value to be retained, or provide a list of to-be-located valuable items.

The company treats every resident with compassion. Franklin notes that his company will not force a resident to do something the resident is not ready to do. In cases in which the situation is so severe that crucial areas of the home cannot be accessed, but the resident refuses to throw away the accumulated clutter, his company clears a single room, boxes the clutter, and stores it there to be revisited at a later date.

Diagnostic features

Before the DSM-5, psychiatrists considered hoarding behavior a hallmark of some cases of obsessive-compulsive disorder (OCD). However, clinicians and researchers have observed that HD has more in common with attention deficit/hyperactivity disorder (ADHD) than with OCD. For example, David Mataix-Cols, Ph.D., observed in a 2014 piece in the New England Journal of Medicine (NEJM) that inattentiveness and impulsivity/compulsivity are two key features of HD – features it has in common with ADHD.

What separates HD from non-pathological collecting behavior? Is your friend with the Philly sports-themed man cave soon to be featured on a reality TV show? The DSM-5 defines HD as “persistent difficulty discarding or parting with possessions, regardless of their actual value, as a result of a strong perceived need to save the items and the distress associated with discarding them.” Spending a lot of money on Phillies rookie cards, which are kept neatly in binders on a bookshelf, is not the same as being unable to part with anything associated with the Phillies, and keeping these items piled around the house.

“The key characteristic,” Daria Piacentino and colleagues explain in a 2019 paper, “that differentiates hoarding as behavior from hoarding as a clinical entity is that the latter results in the accumulation of a large number of possessions that cover and clutter the living areas of the house, impairing their use.” Piacentino points out three “domains” of HD: acquiring, clutter and difficulty discarding.

Serious consequences,

treatment challenges

HD can result in serious problems. Affected individuals may fill their homes with so much clutter that it is impossible to clean them properly, or to access key portions of the home, such as cooking areas. If accumulated clutter blocks the way, needed repairs may not be possible, and utilities may be shut off if staff cannot access and read meters. Although – as Casey notes in his letters to HHS and HUD – people with HD are a protected class, due to their recognized disability, landlords may initiate eviction proceedings due to fire safety and sanitary issues.

Piacento and colleagues note that HD is “a fairly treatment-resistant disorder,” without any recognized treatment guidelines. Given its historical links with OCD and its overlap with depression, HD has been treated pharmacologically with venlafaxine (branded version: Effexor), a serotonin-noradrenaline reuptake inhibitor; methylphenidate (branded versions include Concerta and Ritalin), a psychostimulant; and atomoxetine (branded version: Strattera), a noradrenaline reuptake inhibitor). However, Piacentino cautions, “the evidence level of [positive] studies is low,” because the studies have been small, and not blinded.

Two major types of psychotherapy are currently in use for HD. Cognitive-behavioral therapy (CBT) is the more costly option, but results have been disappointing when compared with other psychiatric disorders. In their 2020 review of the literature, Veterans Affairs (VA) researchers Eliza Davidson and colleagues found that “across [CBT] studies, participants did not achieve full remission of HD symptoms, had high attrition rates, and had low motivation for treatment.”

The VA review also looked at group therapy, a group of psychotherapy modalities that are less costly than individual CBT sessions, and include bibliotherapy, group CBT, and online support groups. They found that group therapy is at least somewhat effective between 21 percent and 68 percent of the time, but the efficacy is not particularly high. In other words, participants are at least somewhat likely to achieve some symptom reduction, but are far from being cured.

A major barrier to treatment success is low treatment-seeking behavior. Davidson and colleagues provide a representative example from the Boston University Hoarding Research Team, which found that between 2008 and 2011, only 24.8 percent of callers were seeking treatment. In addition, many mental health care providers may not even know how to talk about HD and initiate treatment, if a 2018 Quebec study is any indication of the overall North American situation.

‘Unmet interpersonal needs’

A promising angle of HD treatment is to focus on providing interactions of genuine care and concern to people with what Oxford researchers term “unmet interpersonal needs.” In a paper published last year, a team led by Victoria Edwards evaluated the social networks of people with HD, people with OCD, and control participants without HD or OCD. Both groups with psychopathologies reported smaller social networks than the healthy control participants; however, the HD group also demonstrated “lower levels of perceived social support,” as well as “higher levels of loneliness and thwarted belonging.”

Although the Oxford team cautions that the question is not yet answered “whether feeling less social support is a cause or a consequence of HD,” they advise that “professionals should consider enabling individuals to access opportunities for support and connection.”

For individuals living in rental housing, building connections may start with municipal housing inspectors. A 2021 study from the Kennedy School of Government (KSG) at Harvard University provided special training on social services to city housing inspectors in Chelsea, Mass. The inspectors were trained to recognize issues, including hoarding behaviors, and refer residents for assistance.

Crucially, residents had to give their permission to be referred for help. Half of the residents who received referrals were not already receiving social services, leading the KSG team to conclude that “housing inspectors’ encounters with residents present a unique opportunity to expand the public health impact of housing code enforcement.”

Not only did the inspectors help residents by putting them in touch with mental health and other professionals, but they laid the groundwork for a higher-quality first interaction with social services. One case manager involved in the program noted, “I spend more time with [residents referred by inspectors …] It’s a more personal connection I have with the clients.”

The nature of the help that people with HD need is still being investigated. University of Bradford, UK, researcher Cathy Clarke takes an occupational therapy (OT) approach in her 2019 paper. She advocates for the use of an OT lens, including the domains of “doing, being, belonging, and becoming,” to view hoarding behavior and alternative daily occupations that can be encouraged.

Clarke notes that although people with HD recognize that their living environments are outside societal norms, they do not necessarily view their own belongings pathologically, and would not call them “clutter,” as psychiatrists do. Indeed, although the accumulated items may pose functional problems, e.g., difficulty in accessing the kitchen, Clarke cites studies showing that the presence of these items has a “positive effect on self-identity.”

Although the person with HD may view hoarding as the creation of a psychological refuge in the home, Clarke argues that OT-led therapy can “support the individual to find alternative activities and occupations which could structure their day and give them back meaning and purpose,” without the cold-turkey trauma of forced decluttering.

Perhaps the most important thing is personal involvement from someone who genuinely cares for the individual with HD, and will tailor the therapeutic approach to the individual. Without any intervention other than decluttering, HD is likely to result in a recurrence of clutter. Franklin of BioOne says he works with families to schedule post-cleanout welfare checks by local police departments, and sometimes social services notifies the family that the resident is again living in an unsafe situation, or has died. “If you don’t address the underlying issue,” Franklin says, “they’re going to do it again.”