Running head: HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
HOARDING: THROW ME A LIFE PRESERVER,
I’M DROWNING
Betty Lacine
A Capstone Project submitted in partial fulfillment of the
requirements for the Master of Science Degree in
Counselor Education at
Winona State University
Fall, 2011
i HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
ii Winona State University
College of Education
Counselor Education Department
CERTIFICATE OF APPROVAL
__________________________
CAPSTONE PROJECT
___________________
Hoarding: Throw Me a Preserver, I’m Drowning
This is to certify that the Capstone Project of
Betty Lacine
Has been approved by the faculty advisor and the CE 695 – Capstone Project
Course Instructor in partial fulfillment of the requirements for the
Master of Science Degree in
Counselor Education
Capstone Project Supervisor: Dr. Veronica Johnson
Approval Date:
November 30, 2011
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
iii Abstract
Hoarding afflicts up to 5% of the American population. Hoarding is so widespread, yet has only
been researched for the last twenty years. Problems include low response to treatment. The
disorder is not even clearly defined in the Diagnostic and Statistical Manual of Mental DisordersFourth Edition-Text Revision (2000). A working definition has been devised to use for research
purposes. The question of whether hoarding belongs as a symptom of obsessive-compulsive
disorder or should be a separate diagnosis and the implications for DSM-V are explored. The
characteristics and progression of the disorder are considered. Treatments, both promising and
not as successful will be discussed. Today help is available to the hoarder who desires to change
and is willing to work on it.
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
iv Contents
Introduction ……………………………………………………………………………………….1
Review of Literature ……………………………………………………………………………...4
Distinguishing Characteristics …………………....………………………........………...4
Disease Characteristics …………………………………………………........…….........8
Treatments ……............………………………………………………………........…...............16
Conclusion ........................………………………………………………………………………26
Author’s Note .......................................................………………………………………………28
References ……………………………………………………………………………………….29
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
1 Introduction
What do Collyer’s mansion, packer house, and habitrail house have in common? All
three are terms used by rescue personnel on the East Coast, Midwest, and West Coast
respectively to describe a hoarded house that is so full of stuff that they cannot bring in needed
equipment (Scholl, 2011). Hoarding is widespread, affecting 5 % of the total population (Gilliam
& Tolin, 2010), yet the people who hoard try to keep it secret for as long as possible so therefore
these estimates are likely too low, rather than too high (Steketee & Frost, 2007). Compulsive
hoarding has only been researched for the last twenty years, so much more research is needed
(Frost & Steketee, 2010). Hoarding is listed in the DSM-IV-TR as a symptom under Obsessive
Compulsive Personality Disorder (OCPD, American Psychological Association, 2000).
Currently there is much discussion that compulsive hoarding is a unique disorder, deserving its
own diagnostic definition in the DSM-V (Mataix-Cols, et al., 2010). Treatments that are
effective with OCD patients often do not work with patients who hoard, so ongoing research is
studying what treatments are effective with this population (Saxena & Maidment, 2004). The
problem with compulsive hoarding is that it is widespread, with little research on comprehensive,
effective treatments.
Disease characteristics include hereditary links and early onset, with a worsening
progression as people age (Saxena & Maidment, 2004). There are hoarding sub-groups, such as
animal hoarders, not covered in this discussion. Abnormal brain chemistry unique to those who
hoard has been discovered and current research continues to study these deficits (Rufer, Fricke,
Moritz, Kloss, & Hand, 2005). People who hoard exhibit many cognitive deficits, such as an
inability to make decisions and poor insight about their problem. Categorizing and organizing are
both difficult for them leading them to see each item as unique and special and worthy of being
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
2 saved (Frost, Steketee, 2010). Objects are saved for their sentimental, instrumental, and intrinsic
values and are often given human characteristics (Sholl, 2011). Motivational difficulties are
common and co-morbidity with depression decreases motivation even further (Mataix-Cols, et
al., 2010). Personality traits of perfectionism and dependency are often present (Mataix-Cols, et
al., 2010). Many who hoard derive pleasure from acquiring things, but letting go of an object
throws them into anxiety and distress, so items come in, but do not go out (Frost & Steketee,
2010).
Currently there is one treatment that is showing promise. Previous treatments met with
very low success rates. Pharmacology and Cognitive-Behavioral Therapy (CBT) alone have not
proven effective (Rufer et al, 2005). Forced clean-outs and others cleaning for the person with
the hoarding issue do not work and often cause trauma to the client (Frost & Steketee, 2010).
Combinations of Motivational Interviewing (MI), exposure therapy, and certain aspects of CBT
have shown promise. Support groups have also been leading to greater success (Gilliam & Tolin,
2010). Intensive treatment has been more successful than regular weekly sessions (Saxena &
Maidment, 2004). Clinicians working with clients in the office and at the client’s home also have
higher success rates. Co-morbid conditions need to be treated, often with pharmacology.
Collaboration with clients and long-term therapy have shown promise (Gilliam & Tolin, 2010).
People who hoard rarely seek help, as they do not see hoarding as a problem, but those
who live with them urge them to get help (Wilbram, Kellett & Beail, 2008). The majority of
people with hoarding tendencies never marry and live alone (Steketee & Frost, 2007). Unless
their hoard takes over the yard leading to neighbors reporting them to authorities, most live in
isolation, fearful of having anyone visit and seeing how they live (Frost & Steketee, 2010).
Health and safety issues loom for the elderly who hoard, who often barricade entrances (Frost &
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
Steketee, 2010). Hoarding is a silent and shameful secret for the person who hoards (Gilliam &
Tolin, 2010). The purpose of this paper is to explore the definitions of hoarding, both as part of
OCD and also as a separate disorder. The disease characteristics and treatments will also be
explored.
3 HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
4 Review of Literature
Distinguishing Characteristics
Definitions of hoarding fall into two categories. There is the definition that is used to
define hoarding for research purposes. Then there is the DSM-IV-TR (2000) definition, which is
part of OCPD characteristics. As DSM-V is in the discussion phase, study groups examine
whether hoarding should be a separate category or whether it would still fall under the OCD
category or be part of Impulse Control Disorders (ICD; Mataix-Cols, et al., 2010).
Compulsive hoarding is not listed in the DSM-IV-TR (APA, 2000) as a separate
diagnosis, so researchers have formulated a definition (Frost & Steketee, 2010). This allows
accumulated research findings to be combined (Mataix-Cols, et al., 2010). Compulsive hoarding,
for research purposes, is defined as accumulating large amounts of objects and refusing to
discard them, that other people consider worthless, useless, or of limited value. Living spaces are
so packed that the resident cannot use them for their intended purposes. Functioning in the
residence is impaired and the amount of stuff leads to enough distress to be significant to the
occupants(Steketee & Frost, 2007). Using these criteria several rating scales have been produced.
One is the Clutter Image Rating Scale for the kitchen, living room, and bedroom that consists of
photos of increasingly cluttered spaces that the client and clinician can use to rate on a scale of 1,
fairly clean, to 9, piled nearly to the ceiling, to describe the amount of clutter the client is dealing
with (Steketee & Frost, 2010). The Saving Inventory Revised is a written assessment, which
yields a numeric score in three areas, the amount of clutter , difficulty discarding, and acquisition
subscales, so the three components of hoarding can be analyzed separately (Frost & Steketee,
2007). The National Study Group on Chronic Disorganization (NSGCD) has a five point clutter
rating scale. These range from 1, a normal home to 5, one so cluttered that it is unlivable and the
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
5 client was compelled to move out (Bergfeld, 2007). These inventories provide a measurement so
the success of treatments can be rated in a way that can be compared between studies.
Current definitions include that the clutter has been a problem for more than six months
and has not come about because of a recent move, or the inheritance of a household of things
from the death of a family member (Steketee & Frost, 2007). Also distinctions are made
between the clutter of a hoard and a collection, since a collector might have thousands of items,
but they are arranged and cared for, not piled on the floor (Tolin, Frost, & Steketee, 2007) The
physical danger to the occupant also distinguishes hoarding from collecting, since people living
in a hoarded home are at risk in case of fire, or injury trying to navigate through the clutter,
respiratory problems, and even infestations of vermin (Tolin, Frost, & Steketee, 2007). In case
of a medical emergency, medical personnel cannot get through the home with a stretcher, since
many hoarded homes have goat paths, narrow paths used to get through a room, and often the
doors and windows are blocked with stacks of things, leaving only one usable entrance (Frost &
Steketee, 2010).
Under DSM-IV-TR (APA, 2000) hoarding is not specifically listed as a possible
symptom of OCD, but under OCPD it is noted that “when hoarding is extreme” (APA, p. 728)
then OCD rather than OCPD is diagnosed. Hoarding is not even listed in the index. As hoarding
has been studied as a stand-alone diagnosis, researchers believe that the prevalence of hoarding
is between 2 and 5% of the population as a whole (Frost & Steketee, 2010). Those who hoard try
to keep their affliction hidden, so that explains the estimated range (Frost & Steketee, 2010).
Among people diagnosed with OCD, 30% hoard. High levels of anxiety are common to people
who hoard and those with OCD (Timpano, Buckner, Richey, Murphy, & Schmidt, 2009). The
continual checking that people suffering from compulsive hoarding do compares to OCD
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
6 symptoms. Doubting and seeking reassurance also tie in to both OCD and hoarding.
Perfectionism and uncertainty are traits common to both disorders (Mataix-Cols, et al., 2010).
Until recently hoarding was always considered a symptom of OCD, but now that research has
been done on just hoarding, rather than OCD patients, who also hoard, some significant
differences have come to light (Steketee & Frost, 2007).
Frost proposes a new category in the DSM-V of hoarding syndrome rather than
compulsive hoarding, which leaves it tied to OCD by the word compulsive (Frost & Steketee,
2010). OCD does not have any positive emotions, since both obsessions and compulsions are
anxiety driven and negative (Frost & Steketee, 2010). In contrast, hoarding, in the acquiring
stage, has positive aspects for the person who engages in it. Each time they obtain an item
inexpensively or find something for free is cause for excitement. Their unique perspective allows
them to imagine myriad uses for each object. Each object presents an opportunity to obtain
something they perceive as valuable (Frost & Steketee, 2010). The acquiring is a joyful activity,
but trying to discard an item is anxiety provoking (Frost & Steketee, 2010).
Poor insight is another difference between people with OCD and those who hoard. Those
with OCD usually realize they have a problem that is reducing their quality of life and are
willing to receive treatment (Gilliam & Tolin, 2010). People with hoarding issues lack the insight
that they have a problem and thus are more resistant to treatment. They underestimate the
amount of stuff they have and have very low insight into the way it affects their quality of life
(Sholl, 2011). In research studies, if the clinician cannot physically visit the residence, they
require the client to take photos of each room in the home from various angles. That way the
clinicians have a baseline to gauge if a treatment has been successful or not, rather than relying
on self-report from the clients, who often don’t believe they have a problem (Saxena &
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
7 Maidment, 2004). They also let the clients rate the home and then compare the client versus
therapist ratings (Saxena & Maidment, 2004). Sholl (2011), a daughter who grew up in a hoarded
home, expresses frustration that her mother just cannot see the mess and keeps declaring that her
house is fine the way it is, even though the broken refrigerator cannot be removed and repairmen
cannot enter. The inability to do household repairs or to have repairman enter a home contributes
to the danger to the occupants, as when a furnace breaks and they live without heat, since the
basement is too cluttered for anyone to enter (Sholl, 2011). The shame at the condition of the
home and fears of being reported and the house being condemned adds to this reticence (Steketee
& Frost, 2007).
The thoughts of those who hoard are not intrusive or repetitive, like obsessions for
someone with OCD, but are experienced as normal. Some label people who hoard as
preoccupied, rather than obsessed (Mataix-Cols, et al., 2010). Hoarding is seen as passive, since
it only causes distress when the person attempts to discard items, rather than the continual
distress obsessions and compulsions cause (Mataix-Cols, et al, 2010). Hoarding can be classified
as an environmental problem, as the chaos and clutter remain in the persons home, yard, and car
(Kellett, 2007). Kellett (2007) proposes that human hoarding is an adaptation of the site-security
larder model, seen in many animals. Many animals store up food or hoard, but some animals also
hoard objects. Larder hoarding is collecting food and objects and maintaining them in a secure
site, safe from other predators. In the same way humans who hoard collect things and often
information, which leads to piles of newspapers and magazines (Kellett, 2007).
Brain scans of patients who hoard are different than scans of people with OCD. In those
who hoard the fronto-limbic circuits in the prefrontal cortex, the part of the brain responsible for
decisions, making plans, organizing, and setting goals, shows lower metabolism (Frost &
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
8 Steketee, 2010). OCD patient’s brains do not show this abnormality. The brains of people who
hoard also showed lower metabolism rates in the anterior cingulate cortex, which is responsible
for motivation and decision-making among others (Frost & Steketee, 2010). Studies of brain
circuitry are too new to draw definite conclusions, but these differences are another area that
needs to be studied (Frost & Steketee, 2010).
Comparison studies have given evidence that hoarding can be co-morbid with OCD,
depression, anxiety, and social phobia (Pertusa, Fullana, Singh, Alonso, et al., 2008).
Comparison studies have attempted to divide people who hoard into separate categories of those
whose only OCD symptom is hoarding and those who have OCD plus hoarding (Pertusa,
Fullana, Singh, Alonso, et.al, 2008). Hereditary patterns of hoarding are different than the
patterns for OCD. Frost and Steketee (2010) report that one study they conducted had 80% of
people who hoard reporting a first-degree relative who also hoarded. The OCD Collaborative
Genetics Study showed stronger genetic links among those who hoarded, than OCD people who
did not hoard (Frost & Steketee, 2010). Chromosome studies indicated chromosome 14 was
different in clients who hoard, than OCD clients who did not hoard, strengthening the possibility
of a genetic link (Frost & Steketee, 2010).
Pharmacology treatments that are effective for OCD patients are not effective for patients
who hoard (Mataix-Cols, et al., 2010). Cognitive Behavioral Therapy (CBT) and Exposure
Therapy that assisted OCD patients was not effective with hoarding patients, and when studies
were done, those who hoarded tended to drop out of treatment and had low completion rates
(Rufer, Fricke, Moritz, Kloss, & Hand, 2005). The brain circuitry differences and low motivation
could lead to these results.
There are several advantages to hoarding disorder being listed in the DSM-V separately
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
9 from OCD. Currently hoarding studies usually solicit participants from OCD groups rather than
the population as a whole. If the latter was done, then OCD studies, minus clients who only
hoard, could show stronger correlations (Mataix-Cols, et al., 2010). Mixing the people who
hoard in with OCD clients could be skewing the results (Mataix-Cols, et al., 2010). Listing
hoarding as its own syndrome could also improve the outcome of treatment studies for hoarding
(Mataix-Cols, et al , 2010). Clients who hoard, but do not have any other OCD symptoms could
receive a diagnosis and third party payers would help cover the cost of their treatment (MataixCols, et al., 2010)
One problem with the current research is that many of the studies used small populations
(Mataix-Cols et al., 2010). The studies on hoarding, separate from OCD had only been
conducted for twenty years, so the research is of short duration (Frost & Steketee, 2010). The
question of what category to put hoarding under remains whether to leave it as part of OCPD
where it currently resides, or to include it under Impulse Control Disorders (ICD), since the
acquiring aspect seems to fall in this area (Mataix-Cols, et al., 2010). While the DSM-V Anxiety,
Obsessive-compulsive Spectrum, Posttraumatic, and Dissociative Disorder Work Group is
requesting recommendations, adding a new classification is a major change and they might
determine that more research is needed before such a change is supported (Mataix-Cols, et al.,
2010).
Disease Characteristics
The age of onset of hoarding is often in question, most assuming that people who hoard
are elderly. Research has targeted people with houses full of clutter, who tend to be older (Frost
& Steketee, 2010). When questioned, these participants reveal hoarding tendencies starting in
childhood or early adolescence (Gilliam & Tolin, 2010). Sixty percent of study participants had
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
10 hoarding symptoms by age twelve and 80% had symptoms by age 18 (Gilliam & Tolin, 2010).
Those who had a later onset attributed their hoarding to a traumatic event (Gilliam & Tolin,
2010). Hoarding does get progressively worse over a lifespan (Frost & Steketee, 2010). As Frost
and Steketee (2010) continue to study hoarding, less that 1% of their subjects report that
hoarding became less of a problem over time. Hoarding is physically dangerous to 81% of the
elderly, with the hoard creating a fire hazard, with blocked exits and only paths to navigate
rooms (Saxena & Maidment, 2004). Falling is an ever present danger along with unsanitary
conditions and the inability to prepare food (Saxena & Maidment, 2004).
Low insight is a major issue for people who hoard leading to motivational difficulties
(Tolin, Frost, & Steketee, 2007). Some are ashamed of the mess and acknowledge that they have
a problem, but do not know how to address it (Tolin, Frost, & Steketee, 2007). Others do not
believe they have a problem and can climb over piles of stuff and consider it normal (Frost &
Steketee, 2010). Frost and Steketee (2010) have clients take photos of their homes and many
clients are so shocked they do not believe it is even their house, even though they took the
photos. Living in the clutter feels normal to them, so habituation is a possible explanation for the
clients’ inability to see the clutter (Steketee & Frost, 2007). This belief that they do not have a
problem because their stuff makes them feel safe and protected, contributes to few people with
hoarding issues seeking help and nearly all being resistant in treatment (Frost & Steketee, 2007).
Clutter blindness is the term used by Frost & Steketee (2007) to convey how the resident can
look at a room and see it as normal rather than see the four foot stacks of stuff. This clutter
blindness or selective seeing decreases their emotional turmoil (Frost & Steketee, 2007). One
client, when asked to draw the rooms in her home, did not include the cluttered spaces and even
left out one whole room that was filled with clutter (Frost & Steketee, 2007). To her these spaces
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
11 and rooms did not exist. Low motivation and insight contribute to the high dropout rate of people
who hoard from studies, even when they do initially agree to participate (Steketee, Frost, Tolin,
et al., 2010). Steketee, Frost, Tolin, Rasmussen, and Brown (2010) conducted a hoarding study
that indicated 73 clients who met criteria, but 37% declined to participate at the outset, and then
a further 21% dropped out of the waitlist group and 17% dropped out of the CBT group, leaving
only 51% of the original sample completing the study, providing further evidence that people
who hoard are difficult to engage in treatment..
Strong hereditary links exist for hoarding. Even in early studies 80% of those who hoard
reported a first-degree relative who was also a pack rat (Frost & Steketee, 2010). Brain scans
have shown that the frontal lobes of the brain are low carbohydrate metabolizers in those who
hoard (Mataix-Cols, et al., 2010). Identical twin studies confirm the hereditary component of
hoarding (Frost & Steketee, 2010). People with brain injuries to the frontal lobes of the brain
have suddenly become hoarders, while brain injuries to other parts of the brain have not
precipitated hoarding behavior (Frost & Steketee, 2010). Saxena (as cited in Frost & Steketee,
2010) reported that the frontal lobes are important in decision making, motivation, detecting
mistakes, and remaining attentive, all problems for the person who hoards.
People who hoard view an object’s value as broken down into three categories: the
sentimental, instrumental and intrinsic value (Kellett, 2007). Distortions are common in all three
areas. Sentimental value ties to the memories one associates with an object. Most people have
sentimental items they save, but the problem for those who hoards is that they suffer from
“object-affect fusion, whereby affect is ‘projected’ into objects rather than owned and contained
by the individual (Kellett, 2007, p. 417-418). They are unable to distinguish the importance of a
wedding photo from a two year old newspaper, both are equally important to them (Tolin, Frost,
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
12 & Steketee, 2007). This projected value hinders discarding, because throwing away something
feels like losing part of themselves (Tolin, Frost, & Steketee, 2007). Emotional attachment also
falls in this category. Those who hoard view items they own as part of their identity (Gilliam &
Tolin, 2010). A non-hoarder would consider craft supplies as what they own so they can produce
crafts (Gilliam & Tolin, 2010). Possessing the supplies themselves means the person who hoards
is a craftsperson, even if nothing is ever produced (Gilliam & Tolin, 2010). They often define
themselves by what they own, so discarding feels like losing part of themselves (Tolin, Frost, &
Steketee, 2007). Items are often treated as if they are alive and have feelings and need rescuing
(Tolin, Frost, & Steketee, 2007). An overabundance of creativity is a problem for people with
hoarding issues (Tolin, Frost, & Steketee, 2007). Many people would see a broken item and
either leave it by the side of the road or discard it. A person who hoards sees that item and
immediately comes up with ideas about how it could be refurbished and sold, or fixed up and
given as a gift (Tolin, Frost, & Steketee, 2007). Although no projects are undertaken, just owning
the object and having plans for it are reason enough for that item to remain in the home (Tolin,
Frost, & Steketee, 2007). Joy in acquiring is a high, that a bargain was found and many plans are
made for its renovation and resale (Tolin, Frost, & Steketee, 2007). The high they get from
acquiring resembles impulse disorders, such as compulsive gambling. People with hoarding
problems who acquire by shopping often suffer from the same financial problems as compulsive
gamblers (Mataix-Cols, et al., 2010). Instrumental value deals with information. Many people
who hoard claim to have poor memories, so anything they want to remember, they put out where
they can see it (Frost & Steketee, 2010). One client claimed that if she put her clothes away in
the empty dresser drawers she would not remember that she owned them, yet for each item she
picked up in her home she could relate an elaborate detailed history of it (Frost & Steketee,
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
13 2010). The desire to retain the information contained in magazines and newspapers leads many
to save every piece of paper that enters the home (Frost & Steketee, 2010). Studies show that
people who hoard are more visual/spatial, meaning they remember where an item is located by
picturing where they placed it, rather than by category, such as all files are in the file cabinet
(Frost & Steketee, 2010). The newest items to be remembered are placed on top, but as more
items enter the home, the piles get higher and previous items get buried (Frost & Steketee, 2010).
Those who hoard do not consider that information is time sensitive and becomes outdated
(Kellett, 2007). Telling a person who hoards that the same information is available on the
internet does not lead to discard, because he/she needs to see the sources of information in front
of him/her and fears losing information (Kellett, 2007). The ever growing piles make discard
difficult, since a pile may contain very important papers or even cash, interspersed among the
clutter (Frost & Steketee, 2010).
Intrinsic value ascribes each item as “personifying virtues of perfection” (Kellett, 2007,
p. 417), meaning even if it serves no useful purpose, it is seen as unique and beautiful, and
deserves to be preserved. The exclusive resource viewpoint precludes discarding, because there
is no other object like it, so how can it be discarded (Kellett, 2007)? As piles of objects
accumulate, the person who hoards loses track of each item’s intrinsic value, but if he/she
attempts to discard and picks up an item, then it is again viewed as an exclusive resource
(Kellett, 2007). Low insight again comes into play. People who hoard have a difficult time
determining what is valuable, so that combined with exclusive resource makes any discard
difficult (Kellett, 2007).
Compounding the difficulty of discard are the decision making, categorizing, and
organizing deficits with which people who hoard struggle (Gilliam & Tolin, 2010). Decision
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
14 making leads to anxiety, as they fear making a wrong decision (Timpano, et al., 2009). On the
acquiring side, if they see an item and try not to acquire it, they agonize over the possible missed
opportunity of not owning it (Frost & Steketee, 2010). Some people who hoard are so
perfectionistic, that they do nothing rather than facing the possibility of doing something wrong
(Frost & Steketee, 2010). So inactivity wins over an action that could be less than perfect or
wrong (Frost & Steketee, 2010). Some people who hoard encounter difficulty in deciding about
items they own, but others experience indecisiveness in every area of life from what to wear, to
what to eat, to where to go, making their whole day an ordeal of decisions (Tolin, Frost, &
Steketee, 2007).
Timpano and colleagues (2009) studied anxiety sensitivity (AS) and distress tolerance
(DT) as factors that could lead to hoarding behavior. Anxiety sensitivity is the fear of being
afraid. As it relates to those who hoard, some collect objects because then they do not have to
decide what to collect and what to leave. By collecting everything, no decision needs to be
made, thus avoiding anxiety. The desire to avoid distressing situations precludes sorting and
discarding, since that leads to stress, as the person tries to decide what is important and what is
not. Anxiety leads to acquiring and makes discarding unlikely. Low distress tolerance is the
belief that feeling any distress is intolerable. Distress is perceived as “unbearable, unacceptable,
and uncontrollable” (Timpano, et al., 2009, p. 344). Neither AS nor DT alone led to hoarding,
but the combination of high AS and low DT had a synergistic effect that was a significant
indicator of a person with hoarding tendencies. The anxiety of deciding and the fear of that
anxiety encouraged acquiring and discouraged discarding. The only positive aspect of this
combination is that both AS and DT can be modified with Dialectical Behavior Therapy (DBT)
(Timpano, et al., 2009).
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
15 Categorizing is a skill that is compromised in people who hoard (Gilliam & Tolin, 2010).
Each item is seen as so unique, that it cannot be combined with any other item (Gilliam & Tolin,
2010). They tend to see the details and not the whole of each item, so when asked to create
categories, those who hoard cannot define and sort into broad categories (Gilliam & Tolin,
2010). When asked to categorize possessions that are not theirs, they do better at categorizing, so
their emotions are hindering their ability to categorize (Tolin, Frost, & Steketee, 2007). The
reason this categorizing deficit is a problem, is that with fewer categories, sorting items is an
easier task (Tolin, Frost, & Steketee, 2007). For example, a non-hoarder could have food as a
category, but a person who hoards “might have vegetables, fruits, tuna fish, oatmeal,
condiments, and so on” (Tolin, Frost, & Steketee, 2007, p. 33) as separate categories so when
trying to sort a series of decisions needs to be made, rather than answering one question: is this a
food item (Tolin, Frost, & Steketee, 2007)?
Organizing poses problems for people with hoarding issues due to their inability to create
meaningful, simple categories and the anxiety of making decisions. The National Association of
Professional Organizers (NAPO) gives its members access to specialized training to help clients
who hoard. Kristin Bergfeld (2007) presented a summary of her twenty years of experience in
helping people who hoard in New York City. Bergfeld warns that not all organizers should
attempt this work, since these clients are difficult to work with. The clean out may be mandated,
in which case the organizing team may include attorneys, social workers, other family members,
and building supervisors. The added issues of infestations of animals and insects and the
unsanitary conditions also need to be addressed. Bergfeld warns that only non-toxic cleaners be
used, since bleach and ammonia release a toxic gas when in contact with vermin or insect feces.
Expect to be accused of stealing and breakage while working, warns Bergfeld. She recommends
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
16 empathy, since the clients have experienced exposure of their home and the violation of having
outsiders touch their things (Bergfeld, 2007). Kellett (2007) affirms that someone touching or
discarding any of a person’s hoarded stuff is a violation. Many who hoard view their possessions
“as linking objects to previous losses” and these objects have great emotional significance that
does not fade over time (Kellett. 2007, p. 419).
A final characteristic is that people who hoard marry significantly less often than OCD
people who do not hoard (Steketee & Frost, 2007). High levels of social phobia may contribute
to this population choosing to stay single (Steketee & Frost, 2007). Wilbram, Kellett, and Beail
(2008) conducted a study of caregivers, most of whom no longer lived with the person with the
hoarding issue. They all attempted to separate the hoarding behavior from the person who
hoards. One wife, still in the home said, “it feels like emptying a leaking boat with a teaspoon
(Wilbram, Kellett, & Beail, 2008, p. 66). The caregivers were angered by the hoarder’s disregard
for the needs of others. Social relationships suffered, as social invitations were declined, since
they were unable to reciprocate. Relationships with neighbors deteriorated as the hoard overtook
the yard and the home fell into disrepair, since repairmen could not enter to do the work. Many
caregivers blamed themselves for being unable to control the hoarding behavior (Wilbram,
Kellett, & Beail, 2008). Now that the distinguishing characteristics of hoarding syndrome and the
specific ramifications are enumerated, treatments will be explored.
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
17 Treatments
The treatment of hoarding is a relatively new area (Frost & Steketee, 2010). Early
methods of forced clean-outs did not work. Many clients completed suicide after a forced cleanout and many elderly clients died soon afterwards (Frost & Steketee, 2010). Talk therapy is not
effective for hoarding nor is pharmacology alone (Tolin, Frost, & Steketee, 2007). Standard
OCD treatments do not work well with the 30% of OCD clients who hoard (Mataix-Cols, et al.,
2010).
As Frost and Steketee (2010) studied this issue, they designed a program that specifically
addresses the low motivation and cognitive deficits that people who hoard face. Motivational
interviewing (MI) techniques, originally used with people with addictions, are employed to
increase motivation (Tolin, Frost, & Steketee, 2007). Those who hoard usually do not choose
treatment, but are forced or coerced into treatment by spouses, caregivers, and even government
officials, similar to substance abusers so MI is often a good fit (Tolin, Frost, & Steketee, 2007).
With MI the therapist does not confront, but attempts to educate and come alongside each client
to see the challenges and issues from the client’s perspective (Tolin, Frost, & Steketee, 2007).
Clients determine their own goal and what area they want to tackle first, such as being able to
have family home for Thanksgiving, or retaining custody of their children (Tolin, Frost, &
Steketee, 2007). In a collaborative manner client and therapist work towards that goal (Tolin,
Frost, & Steketee, 2007).
An initial assessment gauges the most problematic area which is addressed first (Steketee
& Frost, 2007). For some clients it is the discard and for others it is the continual acquiring
(Steketee & Frost, 2007). Photos are taken of each room from several angles by the client, or the
therapist can do an initial home visit to take the photos (Steketee & Frost, 2007). These before
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
18 pictures are helpful during the course of treatment so progress can be assessed (Tolin, Frost, &
Steketee, 2007). One caution to be discussed with the client, is that if during a home visit the
conditions are too dangerous or children or elderly people share the home, mandatory reporting
might have to be done (Steketee & Frost, 2007).
The effective treatment for hoarding is “active and solution-focused” (Tolin, Frost, &
Steketee, 2007, p. 43). The client and therapist work in collaboration to set goals, learn how to
categorize and sort, how to discard by learning to see possessions from a different perspective
and to reduce acquiring (Tolin, Frost, & Steketee, 2007). Hands on practice is part of treatment,
where clients bring a box of stuff to the therapists office to learn to sort and discard (Steketee &
Frost, 2007). Therapists also do home visits to work with clients there -often every fourth visit is
in the client’s home (Tolin, Frost, & Steketee, 2007). Many people do improve, but it is not a
quick process (Tolin, Frost, & Steketee, 2007). Long-term follow up is necessary to encourage
clients to continue with the work (Tolin, Frost, & Steketee, 2007).
A teamwork approach is recommended. First the client and therapist work together to
develop motivation for change and do psycho-educational work about hoarding (Tolin, Frost, &
Steketee, 2007). If a client has co-morbid conditions, such as depression, anxiety, or others, a
psychiatrist could prescribe medication. As the client feels more comfortable letting others touch
their stuff a professional organizer can be helpful (Tolin, Frost, & Steketee, 2007). A friend who
is trained to act as a coach can also be part of the treatment team. The coach is instructed to
allow the client to make all decisions and simply encourages and helps the client to stay focused
and on task. The coach does not argue with the client or touch things without permission (Tolin,
Frost, & Steketee, 2007). Coaches have to remain aware of their own level of stress and set limits
to keep themselves healthy. Usually family members are too close to the problem to act as
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
19 coaches. The client chooses one room or area as a starting point, often the kitchen, so meals can
be prepared at home (Tolin, Frost, & Steketee, 2007).
Steketee and Frost (2007) begin by having clients rate, on a scale from 1-10 with one
being “at ease” and 10 being “extremely anxious,” how they feel in the presently cluttered room.
The clients record this number along with their thoughts and feelings. Next clients imagine the
room without any clutter and again record the number plus their thoughts and feelings. Then
they take it one step further and make a list of what they can do in that room when it is
uncluttered and how they think and feel about that room. At each step the client also rates his/her
discomfort. Any photos that were taken can also be discussed and again the discomfort level is
noted. Acquiring is handled the same way, with the clients imagining themselves in a situation
where they would normally acquire, but this time they picture themselves not getting anything.
They write down their thoughts, beliefs, and feelings and rate their discomfort. With this
information recorded, the Cognitive/Behavioral work can begin. Now the therapist and client can
determine what faulty thinking is hindering the client and help the client come up with a plan to
tackle the hoarding. A chart is created listing the emotional components to their hoarding.
Emotional attachments and unhelpful beliefs are listed. Next is a list of processing deficits the
client struggles with, what reinforces the hoarding behavior, and which behavior patterns
contribute to the hoarding (Tolin, Frost, & Steketee, 2007). All this work is done in conjunction
with the client (Tolin, Frost, & Steketee, 2007). This attempts to make the problem concrete and
give the client somewhere to start and a strategy to tackle the work (Tolin, Frost, & Steketee,
2007).
Next motivational techniques are employed. The client can write up a matrix listing
reasons to change on one side and reasons not to change on the other (Tolin, Frost, & Steketee,
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
20 2007). Change is unlikely to occur until the reasons to change outweigh reasons to stay the same
(Tolin, Frost, & Steketee, 2007). Motivational interviewing proceeds, helping clients with low
insight and ambivalence decide that they are ready to tackle the clean up (Steketee & Frost,
2007). Clients are encouraged in their strengths and the therapist listens for any change talk
(Steketee & Frost, 2007). In MI the client never has to admit to a problem, just be willing to
change (Steketee & Frost, 2007). The therapist can even take the negative side, and ask client
why they would want to change, since they so enjoy buying things (Steketee & Frost, 2007).
This tactic pushes the client to argue for change instead of against it (Steketee & Frost, 2007).
Problem solving solutions are proposed by the client. These experiments are accepted and tried
to see if they work. If they do not work, the client comes up with something else to try (Steketee
& Frost, 2007). There is no right or wrong method, just varying attempts with the clients
recording their distress levels. This approach means the client is never a failure, the experiment
he/she tried might fail, but he/she can then try something else (Steketee & Frost, 2007). The
therapist is not passive and contributes education and ideas that have worked for others (Steketee
& Frost, 2007).
Before sorting starts, the therapist works with the client to determine what time of day is
best for him/her to concentrate (Tolin, Frost, & Steketee, 2007). A category list is composed, to
deal with the issue of too many categories. As problems and doubts arise the client and therapist
brainstorm a list of possible solutions and the client chooses one or two to try. Again, possible
solutions are framed as experiments for the client to try (Tolin, Frost, & Steketee, 2007).
Thoughts about possessions are discussed and faulty thinking is identified (Tolin, Frost,
& Steketee, 2007). A downward arrow strategy is used, where the client learns to ask
himself/herself questions to challenge his/her beliefs and get to the root of the fear (Tolin, Frost,
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
21 & Steketee, 2007). Examples of questions are: when considering discarding an object, what
thoughts come, such as “I might need it someday” then “what would be bad about that?” “I will
feel stupid if I need it and do not have it.” “How bad would that be?” until the client realizes how
far-fetched these fears are and that these catastrophes are unlikely to happen (Tolin, Frost, &
Steketee, 2007, p. 63). With practice the client learns to ask himself/herself these questions
(Tolin, Frost, & Steketee, 2007). The therapist can discuss the origin of these beliefs with the
client so he/she clearly verbalizes his/her fears and realize that the belief was taught in his/her
family or resulted from a trauma (Steketee & Frost, 2007).
When ready to begin sorting the client is asked to bring in one box of things selected at
random from the room he/she has chosen to start with (Steketee & Frost, 2007). The client
reaches into the box and must take out the first item his/her hand touches and decide what to do
with it, keep it or discard it. The discards can be throw away, donated or sold, with definite plans
for how each will be accomplished. The client can use the downward arrow technique to discuss
what feelings come up and what thinking is involved (Steketee & Frost, 2007). Sometimes a
behavioral experiment is helpful. If a client wants to keep everything, the therapist can challenge
his/her thinking that something bad will happen is he/she gets rid of an item, or that the distress
will never go away (Steketee & Frost, 2007). The therapist is given one item to put in his/her car
and keep for a week. The client rates his/her level of discomfort at the moment he/she hands it
over, then at timed intervals to illustrate that giving up that item in not as traumatic in the long
run as he/she had feared (Steketee & Frost, 2007).
Paperwork tends to be very problematic for those who hoard. Setting up a filing system
for papers early on, often with the therapist providing a list of categories and the client
purchasing a filing cabinet, ensures that important papers that are uncovered can be immediately
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
22 filed (Tolin, Frost, & Steketee, 2007). A printed list of how long each type of paper must be
saved is useful (Tolin, Frost & Steketee, 2007). This work can be done during one of the
therapist’s in-home sessions, after the client has the proper supplies purchased.
Establishing a staging area is helpful. This is an area that is cleared enough to bring boxes
of items to be sorted (Tolin, Frost, & Steketee, 2007). Supplies for the sorting are gathered or
purchased, such as black garbage bags for trash, bins, boxes, labels, tape, and markers (Tolin,
Frost, & Steketee, 2007). Sometimes a staging area will be outside the home if no suitable space
is available inside. Inside is better, as the weather cannot be used as an excuse to not sort. A
realistic time schedule is worked out with the client (Tolin, Frost, & Steketee, 2007). How much
time each day will be devoted to sorting? A calendar is consulted, so the sorting times can be
written down and looked at realistically. A hoarded house will take hours to clean, but by
scheduling two hours per day, the client can feel successful in reaching that daily goal, even if
the amount of clutter is not noticeably less (Tolin, Frost, & Steketee, 2007).
Cognitive distortions, such as all or nothing thinking, catastrophizing,
overgeneralizations, jumping to conclusions, discounting the positive, emotional reasoning, and
over and underestimating are discussed (Steketee & Frost, 2007). These patterns are reframed as
Problematic Thinking Styles, which have solutions (Steketee & Frost, 2007). Once clients
understand these distortions, the next step is to become aware of them as they occur during
sorting sessions (Steketee & Frost, 2007). The actual category is less important than clients’
realization that their thinking is illogical (Steketee & Frost, 2007). A support group can help
them with this step. It can be much easier to see the illogic in someone else’s reasoning than in
oneself. Yet seeing it in that other person can lead to insight into one’s own faulty thinking
(Saxena & Maidment, 2004).
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
23 Clients are encouraged to establish sorting rules and write them down (Tolin, Frost, &
Steketee, 2007). If the rule is any item not used in the last year is discarded or that only one of
each item will be retained, then sorting becomes easier (Tolin, Frost, & Steketee, 2007).The
client can ask himself/herself the two questions about when the item was last used and if he/she
has more than one and answer (Tolin, Frost, & Steketee, 2007). This is idealized, as clients want
to talk about each item rather than decide (Tolin, Frost, & Steketee, 2007). OHIO is another
idealistic rule, which is an acronym for Only Handle It Once. This is often not possible, but it
does give the client a goal to strive for, and even if each item is handled twice, this reduces
churning (Tolin, Frost, & Steketee, 2007). Churning is picking up an item and talking about it,
then reaching for another item to talk about without ever making any decisions about discarding
or keeping the item (Frost & Steketee, 2010). Saxena and Maidment (2004), in the UCLA
program, had the rule that the client reached into his/her box of stuff and the first item his/her
hand touched, had to be removed from the box and a decision made about whether to keep or
discard the item.
Clients write their goals down and refer to them often. Cleaning out a hoarded home is a
long-range project, so while sorting, it helps to keep the long-range goal in mind and to compare
it to the short term pleasure of keeping every item (Frost & Steketee, 2010). Again, the group
approach can be useful here, as clients can encourage each other to evaluate their beliefs (Saxena
& Maidment, 2004).
Acquiring is analyzed and exposure therapy is helpful, to learn to resist the impulse to
acquire (Steketee & Frost, 2007). At the beginning some clients find it helpful to avoid places
where they usually acquire, such as staying home on Saturday morning rather than driving
around and seeing all the garage sales (Frost & Steketee, 2010). Eventually clients need to learn
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
24 to resist acquiring and after discussion of useful techniques non-acquiring trips are undertaken
with the therapist, and possibly later with the coach, to go to the places they normally acquire
and learn to resist (Frost & Steketee, 2010). Cognitive Behavioral techniques are used to
question their faulty thinking (Steketee & Frost, 2007). The client’s goals are reviewed to remind
them what their goals are and how not acquiring helps them reach those goals (Steketee & Frost,
2007). Saxena and Maidment (2004) have their patients keep a log of any item acquired or
purchased, so clients become aware of their triggers. Also, since acquiring is the pleasurable side
of hoarding, other activities are explored, so other enjoyable activities are undertaken to replace
the acquiring (Saxena & Maidment, 2004).
Saxena and Maidment (2004) report on the UCLA Partial Hospitalization Program (PHP)
designed to help people who hoard based on the work of Frost and colleagues. Patients attend
sessions five days a week for four hours daily for six weeks, with follow-up sessions afterwards.
Initial assessments include photos of their homes, as well as written tests. Psycho-education
about hoarding and individual and group therapy occur each day of treatment. Patients bring
boxes of stuff from home to practice discarding, so clients have to make decisions and deal with
their anxiety and thoughts about discarding. Patients learn that nothing terrible happens when
items are discarded. The four areas covered are: discard, organization, prevention of acquiring
and learning alternate pleasurable behaviors. Clients spend two to three hours a day in treatment
sorting clutter brought from home. The amount of time to sort one box and the percentage of
items discarded are noted and recorded. Thus clients can see their progress from one box per
hour to four boxes and from discarding 60% to 80%. Family therapy is also incorporated,
especially if the client has many items from grown children (Saxena & Maidment, 2004).
The skills learned help the clients de-clutter while in the program, but follow-up is
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
25 established, to help clients continue to work with a therapist and be held accountable for their
continued progress. The skills learned aid in preventing relapse (Saxena & Maidment, 2004).
Pogosian (2010) completed a case study of one participant in the UCLA PHP, Dee. She
was highly motivated to change, and made great strides during the program. The therapist’s role
was to help Dee learn to make decisions, provide psycho-education about what is normal saving,
and help Dee identify and challenge faulty beliefs about her possessions. At the end of six weeks
Dee had cleared two rooms and her aftercare consisted of weekly visits with her therapist to
continue practicing sorting/discarding and two visits per week from interns (Pogosian, 2010).
Steketee and Frost (2007) have written a therapist and client guide to help hoarding
clients. These methods were effective in the UCLA program (Saxena & Maidment, 2004). Their
combination of Motivational Interviewing and targeted CBT and ERP (Exposure and Response
Prevention) interventions, plus medication for any co-morbid conditions has shown promise.
Larger samples and follow-up over time will show if the gains are maintained (Saxena &
Maidment, 2004). This is exciting news for people who hoard, who previously had no treatment
that had helped. As further research is done and these techniques are refined possibly even higher
percentages of clients with hoarding issues will make progress (Steketee & Frost, 2007).`
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
26 Conclusion
Hoarding is an issue that is finally receiving attention. In psychological circles, the
implications of hoarding syndrome or hoarding disorder being a distinct entity within the DSMV is eliciting much discussion and hopefully continued research. Those currently working with
people who hoard agree that it should be a separate category, leading to ease of diagnosing and
possibly less stigma for their clients, who will no longer have to be classified with OCD as part
of a hoarding diagnosis (Pertusa, Fullana, Singh, Alonso, et al., 2008). Better research can be
designed and executed without dividing participants into categories, such as only hoarding, OCD
with hoarding, OCD without hoarding, and community controls, so the results can be more
accurate (Mataix-Cols, et al., 2010).
The formulation of a treatment plan that can lead to significant improvement for many is
an exciting development. Steketee and Frost (2007) have manualized their strategies with one
book for therapists and a workbook for clients. The formulation of several inventories to rate
hoarding qualities in clients helps quantify gains for treatments. These include the Clutter Image
Rating Scale (Steketee & Frost, 2004), the Saving Inventory-Revised (Frost, Steketee, &
Grisham, 2004), which includes sub-scales for clutter, difficulty discarding, and acquisition, the
Savings Cognitions Inventory (Steketee & Frost, 2004) with subscales for emotional attachment,
control, responsibility, and memory, the Activities of Daily Living-Hoarding (ADL-H) inventory
(Steketee & Frost, 2004) with three subscales, Activities of daily living, living conditions, and
safety issues, and the Obsessive-Compulsive Inventory Revised (Foa, et al., 2002) with subscales
for checking, hoarding, neutralizing, obsessing, ordering and washing (Steketee & Frost, 2007).
Researchers can compare research based on these scales. Therapists can administer these scales
at the beginning and conclusion of treatment to quantify the gains the client has made. These
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
27 scales are also helpful for the client as he/she formulates a plan of attack to be aware of the areas
of faulty beliefs that will need to be countered as he/she works toward reducing clutter (Steketee
& Frost, 2007).
Now there is hope for people who hoard (Steketee & Frost, 2007). Previous attempts to
assist them often consisted of forced clean outs. With Steketee and Frost’s (2007) systematic
manual and the success of the UCLA Partial hospitalization program, based on the same
research, those who hoard who want to change have a method to help them achieve their goals
(Steketee & Frost, 2007).
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
28 Author’s Note
I became interested in hoarding while trying to help a friend de-clutter her home. Seeing
her distress at my offer of “I’ll just throw away the junk mail” clued me in to larger issues. I
would help her for two hours at a time, but she rarely let me touch anything and she would refold
any garments I folded. Every time I arrived the single bed in the guest room was again covered
in a two foot high stack of clothing-most of it new with the tags still attached. None of it fit her,
but my suggestions that we donate these items were met with hostility. I decided to read a few
books and discover more. Her hoarding is still moderate, one can walk through her rooms, but
there is nowhere to sit and she cannot prepare meals in her kitchen or eat at the table. She feels
embarrassed and ashamed, but she does have insight that it is a problem and not normal.
I also have a brother-in-law who hoards and is currently overtaking his mother’s house
with his stuff. He also shows typical hoarding behavior, in that he has a plan for each item and he
does sell some items on e-Bay, but the inflow is exceeding the out-flow. His siblings are irate
and I believe he inherits her house once she’s gone, so there is nothing anyone can do right now,
except his mother, who has been unable to set boundaries for his stuff.
As I have studied the fascinating subject of hoarding and have increased empathy and
insights into the difficulties clients encounter, I hope to be able to assist clients in the future with
this issue. Now there is hope for the person who hoards to tackle their faulty thinking and
overcome the deficits so they can declutter and find relief in this difficult area. I look forward to
working with these clients and also to see continued research in the area of hoarding.
HOARDING: THROW ME A LIFE PRESERVER, I’M DROWNING
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