Tag Archives: Hoarding

Help for those who hoard

By Laurie Meyers February 29, 2016

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

To have and to hold

Mark A. Chidley April 1, 2011

Local law enforcement, code enforcement and animal control experts have known about the problems of animal hoarding and object hoarding for a long time. But excepting the sporadic attention given to the issue here and there in the professional literature, the mental health community is relatively new on the scene. As such, it is still investigating and catching up on why people hoard.

Hoarding was initially regarded as an exotic subtype of obsessive-compulsive disorder (OCD). But given that it contains parts of several other Axis I conditions without clearly fitting within any of them, plus has features all its own, there is growing consensus that hoarding might be a distinct disorder.

The psychological study of animal hoarding in particular is a fairly recent development. Gary Patronek initiated this study through his work at Tufts University in 1997, completing a groundbreaking initial data collection from participating animal control agencies nationwide. He used a convenience, non-randomized sample and analyzed submitted inspector reports collected from agencies that cooperated with him. About the same time, the Hoarding of Animals Research Consortium (HARC) formed in Massachusetts. It brought together an interdisciplinary group from psychiatry, social work, veterinary medicine and law enforcement, as well as others dedicated to “exploring the problem of animal hoarding to find more effective and humane solutions for this very problematic and poorly understood behavior.” The group collaborated over a 10-year period and eventually published a community intervention manual after a major symposium in 2006. The group’s website (tufts.edu/vet/hoarding/index.html) remains its primary means of communication. Today, HARC’s goals are to eliminate stereotypes, raise awareness and stimulate research among all concerned parties.

The mental health team involved with HARC put forth a working model of the relationships between a broad array of early childhood issues and genetic and environmental factors that produce disordered attachment patterns and/or Axis II traits that further impair relationships. Together, these inadequate attachments and faulty structures of personality form such a massive deficit in resilience that as the person reaches adulthood, he or she is ill equipped to handle life stressors. This situation eventually gives rise to hoarding behaviors. HARC posits that hoarders attempt to repair the self via their relationships with animals, but these individuals are ultimately foiled by some crisis or trauma that causes them to become even more overwhelmed. Their coping deteriorates further, including their ability to care for themselves and the animals (see model attufts.edu/vet/hoarding/abthoard.htm#A3).

Although this model is good so far as it goes, it only considers animal hoarding, and much more needs to be fleshed out. For instance, what are the intermediary steps in turning away from human attachments and turning toward animals? Does the behavior start to manifest early and, if so, how? What accounts for some hoarders retaining social ties as their collecting worsens? What is the role of trauma or loss in a hoarder’s life?

The loss connection

My opinion is that the roles of unresolved loss in general and traumatic loss in particular need further inspection in connection with hoarding. The mismanagement of a single major loss or clustered losses along life’s way could represent a turning point that makes either object hoarding or animal hoarding go active. This is not to say that loss is omnipresent in all cases, but it is present in enough instances to merit further attention. A recent interview I conducted with Kathleen, a recovering hoarder, speaks to this point.

The woman shared that her first and second husbands died nine years apart, both of natural causes. She had remarried knowing about her second husband’s health problems. Still, she wasn’t prepared when she came in one day to find him dead on the floor. She could tell now, looking back from nine years’ distance, that symptoms of depression had settled in shortly after the second loss. She walked around like a zombie most of the time. She started neglecting routine cleaning and stopped taking out the trash. As things piled up, she just left them there, lacking the energy to deal with them.

During that time frame, her sister also died, and the woman’s hoarding patterns escalated to more serious levels. Friends and neighbors told her she needed to clean up her place, but she turned a deaf ear. By that point, she admitted, well-meaning interventions without any administrative force were easy to turn aside. Still working, she was already good at maintaining a public front while restricting access to her private life. Unchallenged, she discovered the self-medicating effects of buying things for herself. Yard sales, dumpsters and dollar stores became her unholy trinity.

“Thirteen pairs of pajamas make no sense except to someone who is feeling abandoned, empty and in dire need of an emotional boost,” she said. Each purchase or acquisition provided her that much-needed boost. “That’s the way a hoarder thinks,” she explained. “It just generalizes to all sorts of other things.” Recalling all the accumulating piles, she thoughtfully reflected, “I guess when you think you have nothing else, you think at least you have your stuff.”

Normal grief is a hard enough process for a healthy person to navigate. According to George Bonanno in The Other Side of Sadness, grief is an oscillation between loss-centered thinking/feeling (reminiscence, longing for the loved one, reviewing memories) and forward-centered thinking/feeling (planning for a changed life, forming new relationships, moving). Most people oscillate to varying degrees throughout the first year or so, then gradually taper into less intense and less frequent oscillations. Bonanno notes this alternation is good because unremitting loss-centered thinking and feeling would be too much for anyone to bear.

With this in mind, I speculate that some people, perhaps because of the resilience deficits noted earlier or perhaps through the simple misfortune of being hammered by several major losses, go through one loss too many, causing something to go wrong with how losses are processed in the mind. They can neither integrate painful life experiences nor easily oscillate between pain and more pleasant states. All of this happens in a more destabilizing way than occurs with other complicated grief patterns — a way that disrupts multiple areas of functioning such as memory, attention, planning, categorization, judgment and reality testing. They experience a slowing of cognitive processing, which impedes decision making.

As hoarding develops, other changes take place, too. According to Randy O. Frost and Gail Steketee in Stuff: Compulsive Hoarding and the Meaning of Things, hoarders develop an elaborative processing style based on having maximal choices and preserving every imagined opportunity. They reify objects and animals. Reification is the error of regarding an abstraction as a material thing and attributing causal powers to it. Hoarders attribute safety, security, control or any other traits they find comforting or desirable to either inanimate objects or animals. Through repeated avoidance, they escape stress for the moment but reinforce inordinate fears of change and further loss concerning things most of us would consider everyday transactions. Certain other features, such as the aggressive acquiring mentioned previously, take on a life of their own, much like an addiction, particularly process addictions such as spending, gambling and food, some of which often are comorbid with hoarding. In any respect, what we are learning is that hoarders seem to manifest an intolerable existential pain, an abiding sadness, a sense of abandonment and, as their illness manifests into its active phase, a sense of perpetual defeat.

An extreme protest

The mind always has another card to play even in such dire circumstances, so it mounts an equally strong, equally extreme protest against this pain and the threat of future loss. By engaging in behavior that is the opposite of losing — having or hanging onto things — the individual is soothed. If nothing is thrown out, the individual reasons, then nothing will ever be lost again. Or, in the case of animals, especially if one has many of them, the person never has to face a loss leading to aloneness ever again. These inner tactics can be projected onto current relationships and used as a bargaining chip. Hoarders sometimes will resist change until they get an ironclad guarantee from others that they will help or stay with the hoarder, particularly in cases in which the person’s hoarding or other issues have driven relatives away.

One 69-year-old hospice patient had lost two husbands, one through a divorce and the other through death. She was estranged from her only daughter, who lived in a distant state and refused to come see her. The patient was dying of lung cancer that had spread to her chest. She lived alone in her mobile home, a recluse from her neighbors, and received visits only from her hospice workers. Well into the late stages of her illness, she continued to collect cats, regardless of her inability to care for them. As with many hoarders, she talked about them as “her life.” Her belief that the cats needed her was at least partially a delusion; many of them were neglected to the point of starvation and had learned to forage for themselves. But they gave her life meaning, which she frequently asserted.

I noticed this stayed at the level of an ideal in her mind. Curiously, she spent little time petting, holding or relating to any of the cats. She would dump food in their dish in a rather detached way, and only occasionally would she speak to any individual cat as it passed through the house. It was as if simply having them there was enough. At a deeper level, they were her insurance policy against having to part from anyone dear to her or having to suffer rejection ever again.

She recounted having once fallen to the floor with chest pains and said the cats had organized themselves to revive her, standing on her chest, licking her face, intuiting her needs. She fantasized they would be there like that for her until the end, seeing her off as she passed from this life. She straightforwardly asked her hospice caregivers to bury some of the cats with her, presumably dead or alive. She focused her loyalty and desire to be with these animals far more intensely than she had done with any person she had ever known.

Seen in this light, hoarding is the perfect solution. It is a tactic to have and to hold onto something forever. It is a strategy that effectively erects a buttress against frozen grief and further devastating loss. When someone finally forces the issue and the sheriff or animal control officer takes over, the whole house of cards comes tumbling down. The presence of delayed frozen grief, possible additional loss (through animal removal, necessary euthanasia or enforced cleanup), intense shame and existential panic all reassert themselves in an abrupt manner. It is a very tricky passage for first responders to manage because brittle hoarders may feel as though they have no remaining resources — that their life is, in effect, over.

More study needed

This is a very limited sketch of the possible role of frozen grief in the development of hoarding. This article has not dealt with other dynamics, such as the hypersensitivity to judgment, the distorted projections onto authorities, the continued problems with honesty and compliance, the anger related to thwarted control and the frank sociopathy and exploitive cruelty that can surface across a variety of these cases. These elements are just as important to investigate and illuminate. As the authors of the HARC project stated, we are just at the beginning when it comes to understanding hoarding. A rigorous scientific collection and study of cases is needed to more accurately identify important key variables and the relationships among them that begin to explain the continuum of hoarding phenomena. As the study of key variables proceeds, we may be able to fine-tune the effective and timely interventions currently taking place in some locales, thereby helping more hoarders earlier in their process.

We continue to face some significant obstacles in addressing hoarding, however, including widespread public stigma. At the same time, societal values concerning the sanctity of one’s home and our rights to privacy and self-determination combine to make this population very hard to identify until late in the progression of the illness. This fits the agenda of the hoarder and hoarding families very well because they become extremely adept at hiding their behavior. Typically, cases tend to come to light at their nadir, when the person and his or her lifestyle have deteriorated so severely that they demand attention. Consequently, very little is known about the onset and earlier phases of the disorder or its comorbidity with other disorders.

For every hoarding situation that comes to light, there may be an equal or greater number that go undetected because of uneven reporting procedures from community to community. As multidisciplinary teams such as the one at Tufts multiply across various communities, and specifically as they organize themselves to do research, there is great hope of learning more about, and therefore dealing with, the hoarding disorder more effectively.