TV shows such as Hoarding: Buried Alive and Hoarders have brought hoarding disorder (HD) to a new level of public consciousness. The shows provide portraits of people who hoard, typically at a moment of crisis when they are on the brink of being evicted or having their houses condemned. Years of collecting “stuff” — much of which often has no monetary value — has narrowed their living space to a single room, part of a room or even just a place to sit.

Often, the living conditions are almost unimaginable. In many instances, kitchens have become unusable and utilities, including running water, have been cut off. Food has been left to rot, garbage is everywhere, and in the case of those who hoard animals, the resident lives among animal feces and even dead and dying animals.

Because these shows typically provide only a snapshot of the more sensational aspects of the lives of those who hoard, however, viewers rarely receive insights into the mental health disorder behind the chaos. Viewers are also unlikely to understand that the dramatic assisted cleanups that conclude the shows are not truly the end of the story; unless the person’s behavior is treated, all the “tidying up” will be for naught, because the same problematic actions and habits will reemerge. In fact, say counselors who work with those who hoard, treating the hoarding behavior is a difficult and often yearslong process.

Hoarding as a distinct disorder

In the past, hoarding was classified as a symptom of obsessive-compulsive disorder (OCD) or obsessive-compulsive personality disorder. However, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders classified hoarding as a distinct disorder related to OCD. This is because OCD and HD may share certain characteristics, but they also feature significant differences, says Victoria Kress, an American Counseling Association member and past president of the Ohio Counseling Association who studies hoarding.

“Individuals with OCD and HD both have obsessive thoughts, rational or irrational, that affect their daily lives. These obsessions link certain behaviors with grave and undesirable consequences,” she explains. “For example, those with OCD might obsessively believe that they will get into an automobile accident if they do not lock their front door three times before leaving the house. On the other hand, those with HD might believe that they will suffer great sadness and loss if they discard an item of sentimental value. A fear of discarding items is one of the most notable features of HD, and those with this disorder often fear that they will accidentally discard an item that is valuable or will become valuable.”

Experts estimate that approximately 2 to 6 percent of the U.S. population has HD. Although often associated with those older than 50 — the average age at which those with HD seek help — in most cases the behavior begins during adolescence or young adulthood.

As a person with HD gets older, symptoms increase. Hoarding behavior may become more pronounced by a person’s mid-30s but often does not become truly debilitating until one’s 50s, Kress says. “This is due to a number of reasons,” she explains. “Primarily, individuals with this disorder do not experience debilitating consequences as the result of hoarding until the behaviors have increased and material items have collected over time.”

In addition, those who are younger often live with others — parents, roommates, partners or spouses — which can help keep the behavior in check, notes Nicole Stargell, an ACA member who also studies HD and has co-authored several studies with Kress. In fact, in some cases, the death of a spouse or partner contributes to the disorder spiraling out of control, she says.

Even when individuals with HD are not keeping the behavior in check, they can often hide it from friends and family simply by never letting anyone else enter their homes, says Kress, a national certified counselor who has experience working with this client population. However, as hoarding symptoms become more severe over time, the behavior begins to create significant social isolation, financial difficulty and hazardous living conditions, she says.

Hoarding behavior

As is the case with many other mental health disorders, researchers have not been able to pinpoint what causes HD. According to Kress, HD is characterized by a client’s desire to obtain and accumulate possessions but does not seem to be associated with poverty-related factors such as lack of food, shelter, clothing or money. She adds that the disorder can be exacerbated by — but is not caused by — trauma.

Hoarding is also not the same as, or even a natural progression of, allowing clutter to accumulate, experts say. Although the behaviors may share a superficial resemblance, they are quite different, says Mark Chidley, a licensed mental health counselor in Fort Myers, Florida, who works with clients struggling with HD. “The difference lies in the compulsive nature of acquiring [objects and possessions inherent with HD] and the distress when faced with discarding [them],” he explains.

Those with HD also don’t seem to recognize that being unable to use a room for its intended purpose — for instance, using a bathroom instead as a storage locker — is indicative of a significant problem, continues Chidley, who is also the author of Helping Hoarders: A Guide for Families, Counselors and First Responders.

“Lots of folks get a bit messy for a time, but [they] will act to clean up before they lose use of a space and do not show … compulsivity and distress when they go to clean up,” he says. “Cleaning up a cluttered space remains just a pain in the derriere for most of us, not something to be avoided at all costs.”

People who hoard find it nearly impossible to discard items because they attach significant emotional value to those objects, say Stargell and Kress. Although the objects sometimes have monetary value, they are just as likely to be items that are normally discarded as trash, such as napkins, cups or straws, says Stargell, an assistant professor of counseling and the field placement and testing coordinator at the University of North Carolina at Pembroke. Regardless, clients who hoard will consider the items to be tremendously valuable.

“The value that individuals with HD place on hoarded objects is often not monetary. They are valuable due to their usefulness or sentimental qualities,” says Kress, who is the community counseling clinic director, clinical mental health counseling program coordinator and addiction counseling program coordinator at Youngstown State University in Ohio. “Individuals with HD place unjustified value on objects and fear harmful, often unrealistic consequences if they are discarded.”

For example, someone who collects napkins might cite a particular napkin as having value because it was used at an anniversary dinner with a spouse, Stargell says. “However, it’s not just that napkin — it’s every napkin from every dinner ever,” she stresses. Another example of misplaced value would be someone who collects cups from a fast-food restaurant because the cups may be “useful” someday. In the process, however, the person gathers and keeps hundreds of cups, Stargell says.

But for those with HD, it’s never just one item, and it’s never enough, experts say.

Health risks

As hoarding behavior progresses, it can pose significant risks to both physical and mental health. “The functional impairment associated with HD is often compared to [that of] schizophrenia and bipolar disorders,” Kress points out.

The conditions under which people who hoard live are frequently unsafe and unsanitary, compromising their well-being. “Medically, this can run the full gamut of conditions that are created or pre-existing conditions that are worsened by being in close proximity to decaying materials, coupled with an increasingly sedentary lifestyle,” Chidley explains. Decaying matter and the potential for accompanying pest infestations can exacerbate these individuals’ respiratory conditions, increase their likelihood of contracting an infectious disease or even expose them to toxic materials, he says. The flammable detritus around them can pose a fire hazard, while the lack of clear walking space increases the risk of injuries from tripping and falling, he adds.

“If a hoarder has a chronic condition such as diabetes, self-care is usually limited or nonexistent, and the disease trajectory is accelerated,” Chidley concludes.

Hoarding can be life-threatening not just because of the attendant health risks, but also due to the person’s reluctance to let outsiders in. “[One client] fell and injured herself in her home and, after making it to her bed, she lay in her own feces without food or water for four days before realizing she was going to die if she didn’t call for help,” says Polly Kahl, a licensed professional counselor in West Lawn, Pennsylvania, who specializes in treating clients with HD.

“Shaming reactions from those around them make hoarders less likely to call for help,” Kahl explains. “[They sometimes choose] unsanitary and unsafe living conditions without plumbing or electricity rather than risk being embarrassed and shamed.”

Some of the most horrific living conditions involve those who hoard animals. Although these individuals believe they are saving the animals, the truth is that they are not able to care for them properly. Those who hoard animals often have an almost unimaginable number of animals living in the home with them. Stargell knows of one case in which the person had collected 200 dogs. Because those who hoard take on so many animals, they are often surrounded by feces and the bodies of the animals that have died due to neglect. Those who hoard animals also have a tendency to bring in sick animals, thus introducing extra health risks to themselves and the animals they already have, Stargell says.

Kress and Stargell say animal hoarding is characterized not just by the denial or lack of insight that accompanies object hoarding, but also by delusional thinking. “They are convinced that they are helping the animals, that they are loving them,” Stargell says. These individuals may even believe that this is their calling in life — to help animals that would not have a good life without them (or so they think), she adds.

Hoarding affects not only the individual with the problematic behavior but also his or her loved ones and the community, Kress says. “The unsanitary condition of their homes presents a hazard to surrounding homes in the form of increased rodent populations, bug infestations and fire hazards,” she explains. “Cluttered living spaces present significant challenges to medical first responders in reacting to emergency situations, which may be more likely to occur due to the fire hazards and chronic health conditions that are associated with HD.”

Treatment challenges

Because HD is more treatment resistant than many other mental health disorders, treatment is slow, sometimes taking as long as three to five years, Stargell says. Part of the problem is that those who hoard are rarely motivated to change.

“Hoarders are traditionally in … denial about their own conditions and, when confronted, usually become very defensive, even verbally attacking, toward those who want to help them,” Kahl says. “The longer the condition has gone on, the more in denial and defensive the hoarder will be.”

Kahl likens hoarding to addiction in that both involve denial and a strong sense of shame. Another similarity is that, as with addiction, those living with the person who hoards may reinforce the hoarding behaviors and their attendant emotional distress, she says.

“There is a synergy between hoarders and those who live with them which can go a couple of different ways,” Kahl explains. “Many roomies [or family members] respond by trying to intentionally shame or embarrass the hoarder into cleaning up their act. This further solidifies the hoarding behavior by intensifying the hoarder’s defensiveness. The other common response to the hoarder is to avoid confronting them because of their [negative] behavior when confronted. As with addictions, this serves to enable further hoarding.”

“Occasionally, partners or housemates of hoarders gradually acclimate to their hoarded surroundings, developing their own ‘clutter blindness,’ and they become hoarders as well,” she adds.

Although those close to someone who hoards may enable or exacerbate the condition (even if unintentionally), they are also often the key to the person finally getting help. In another similarity to addiction cases, those who hoard often refuse to seek treatment until family members or other loved ones force the issue, say the counselors interviewed for this article.

Treatment suggestions

Even so, clients with HD may initially present in a counselor’s office with other issues such as depression or attention-deficit/hyperactive disorder, both of which are frequently comorbid with HD, say Kress and Stargell.

Stargell says clues to the underlying HD often turn up in clients’ descriptions of their families, social relationships and daily lives. For instance, clients might mention not socializing much because of their reluctance to let friends into their house or discuss family members refusing to visit because of the condition of their home. If clients bring up losing a job or being “forced” into therapy by family, counselors should be sure to explore all of the underlying factors because problems related to hoarding may be involved, Stargell says.

“Oftentimes, people with hoarding disorder have poor overall physical health,” says Stargell, citing another red flag for which counselors should be on the lookout. Indicators of hoarding might be hidden in the underlying causes of the client’s bad health, such as not going to the doctor because the person is avoiding the world or being unable to eat properly because the kitchen or eating areas are inaccessible, she explains.

Clients who hoard may also incur frequent injuries because they regularly trip and fall over accumulated clutter, Chidley says, or they may have respiratory problems caused by exposure to mold or toxic substances in their homes.

For treatment to be successful, clients with HD will eventually need in-home support, if not with a counselor, then with case managers or others trained in working with those who hoard, Kress says. However, it is possible to begin treatment in the counseling office. Kress and Stargell say that cognitive behavior therapy techniques such as thought stopping and cognitive restructuring have been shown to be effective when treating HD.

Counselors also need to help these clients understand the thinking that forms the foundations of their behavior. This might involve asking them to maintain a “thought journal” that tracks what they collect and why, Stargell suggests. For instance, clients might note that yesterday they went to a fast-food restaurant, purchased a drink and saved the cup and straw for future use. Counselors then encourage clients to consider the reasons why they might not need to save the cup and straw, such as “I already have 700 cups and straws,” or “I will only ever use five cups and straws,” Stargell explains.

Even speaking hypothetically about disposing of items can be extremely stressful for these clients, Kress points out. For that reason, it can be helpful for counselors to introduce emotional regulation and distress tolerance skills.

“Clients with hoarding disorder often have difficulties generalizing skills learned in sessions to real-life situations,” Kress says. “Practicing coping skills during hypothetical discussions may reinforce learning and the appropriate application of skills.”

Once clients start to understand the thoughts and feelings that underlie their hoarding behavior, counselors can then work on helping them restructure irrational thoughts into more logical and factual beliefs, Kress says. “For example, a client may work to replace the thought ‘If I throw away this newspaper, I may find out that it is of value and lose out on a fortune’ with ‘It is unlikely that if I throw away this newspaper, I will lose out on a fortune,’” she explains.

Counselors should move slowly with those who hoard in order to gain their trust. Because people with hoarding disorder are often experiencing shame and embarrassment and are typically sensitive to what they may perceive as rejection or judgment, they need to feel a strong sense of acceptance from the counselor, Kress says.

People who hoard typically lack self-awareness and insight. They are unable to accurately see and assess the destructive effect that hoarding has on their lives, Kahl says. For this reason, counselors must help these clients make the connection between their hoarding and its myriad unhealthy consequences.

“As with addiction, the best way to achieve this is by helping them see the consequences of their hoarding,” Kahl says. “In one case, a hoarder was … desiring [of] help because she realized her adult children had refused to enter her home for years. Now that she had grandchildren, she needed to clean out her home if she ever hoped to have them over to visit or come for family events like Thanksgiving dinners.”

Adds Kress, “Threats of eviction, loss of independent living, legal action and social isolation are some of the consequences that these clients face as a result of their behaviors. Because impaired insight is a facet of this disorder, interventions that focus specifically upon enhancing motivations, such as motivational interviewing, may be a helpful adjunct to other treatment approaches for this disorder.”

Once clients feel comfortable and open to change, it is important to incorporate family and other loved ones into treatment — with the client’s permission — so that they can help provide support and encouragement, Kress says.

Kress also suggests using exposure therapy to help clients. This process involves “practicing” disposing of items by discussing it hypothetically, either in the counseling office or in the client’s home. Once clients are ready to let go and discard, counselors can enlist the help of professional organizers or cleanup crews to remove discarded items, she says. But in some circumstances — such as impending eviction — counselors will not have enough time to slowly integrate exposure therapy.

“In this case, counselors should do their best to support the client and process mass cleanup events as a traumatic experience before working toward continued insight,” Kress says. “In situations that require immediate action, counselors should be prepared for the client to experience extreme emotional distress and may wish to include assessment for suicidal ideation.”

Because HD affects all aspects of these clients’ lives, practitioners should be prepared to provide referrals to other professionals such as physicians as well as to community resources such as vocational services, Kress notes. Although counseling those with HD does not require special training, Kress suggests that practitioners educate themselves by staying up to date on the literature and, if possible, attending training sessions.

Kress reiterates the challenges of working with clients who have HD. “They are deeply entrenched in their ideas and the importance of holding on to their items,” she says. “Also, they often don’t want to change. It is almost always someone else who is pushing them to make changes. Their ambivalence to change can be a real treatment barrier, so I like to focus on enhancing their motivation to want to change, because without that, you have nothing to work with.”

 

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If you’d like to learn more, ACA offers a Practice Brief on hoarding disorder, written by Nicole A. Adamson, Chelsey A. Zoldan and Victoria E. Kress, at counseling.org/knowledge-center/practice-briefs.

In addition, Kress, Nicole Stargell, Zoldan and Matthew J. Paylo wrote an article titled “Hoarding Disorder: Diagnosis, Assessment and Treatment” for the January 2016 Journal of Counseling & Development.

Stargell and Kress will be presenting an Education Session on hoarding disorder on April 1 at the ACA Conference & Expo in Montréal.

 

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Contact the following counselors interviewed for this article:

• Polly Kahl at kahlcounseling@hotmail.com
• Victoria Kress at victoriaEkress@gmail.com
• Nicole Stargell at nastargell@gmail.com

 

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Laurie Meyers is the senior writer for Counseling Today. Contact her at lmeyers@counseling.org.

Letters to the editor: ct@counseling.org