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Treating Hoarding Disorder Egersdorf 2016
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Treating Hoarding Disorder: Should Hoarders Lose Their Homes?
Nicholas Egersdorf1
“Multiple sources describe the feelings of hoarders, to whom the discarding of unnecessary
items is equivalent to a part of oneself dying or abandoning a loved one” (Ligatti, 2012).
1
Undergraduate, Macalester College, Saint Paul, Minnesota. 2016.
Treating Hoarding Disorder Egersdorf 2016
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Abstract
Hoarding Disorder (HD) is a set of behaviors tied to maladaptive neurological and
cognitive processes that typically result in accumulations of clutter that are problematic to the
self and others. With more than 12 million Americans exhibiting HD symptoms, prevalence is
strikingly disproportionate to the level of cultural awareness. The purpose of this project was to
provide an unbiased account of the current scientific and legal literature surrounding hoarding as
a disorder and as a disability. The second part of the project provides a thorough philosophical
argument that HD is a disability that warrants reasonable accommodation, and then considers the
nature of reasonable accommodation for hoarders. Ultimately, I came to the conclusion that HD
warrants reasonable accommodation insofar as it promotes healing on an individual and societal
level. In general, hoarders should not have to lose their houses, however when symptoms are
persistently problematic, commitment to a facility is the best possible option.
Treating Hoarding Disorder Egersdorf 2016
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Contents
Introduction 4
Part 1: Hoarding Disorder Overview 6
Symptomology 6
Distinguishing features 9
HD versus OCD 10
Prevalence: Hoarding Epidemiology 13
Development and Course 13
Gender 14
Physiology 16
Treatment 19
Stigma 25
Law and Policy 28
Americans with Disabilities Act 29
Fair Housing Amendments Act 31
Federal Parity Law 34
Recap 36
Part 2: Warranting Reasonable Accommodation 37
P1) Hoarding is a mental disorder 37
P2) HD is a disability 42
P3) HD warrants reasonable accommodation 47
C) Hoarders should not typically lose their homes 64
Personal Accounts and Reflections 68
References 75
Appendix 78
Treating Hoarding Disorder Egersdorf 2016
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Introduction2
Compulsive Hoarding3
is a behavior characterized by severe difficulties discarding clutter
and habits of compulsive or excessive acquiring. In general, hoarding is a cluster of behaviors
and cognitive processes that produce distorted, diminished, and unsafe living spaces. Although it
is not a new set of behaviors4
, in recent years, hoarding has erupted into the mainstream5
and
medical spheres of literature. Recently, the 2013 Diagnostic Statistical Manual of Mental
Disorders (DSM-5), recognized compulsive hoarding as its own disorder. Clinically significant
hoarding disorder (HD) is prevalent in 2-6% of a given population as observed in communities in
the United States and Europe6
(American Psychiatric Association, 2013). That is, the lives of
approximately 14 million Americans, plus those of neighbors, family members, and pets are
affected daily by the devastation of hoarding. Those who suffer from HD are prone to eviction,
social isolation, and lawful seizure of their property. Due to the debilitating nature of HD, special
consideration must be given to the current legal policies that harm hoarders without
acknowledging the need for healing, or that HD is a disability.
2
For a pictorial summary of this article, see generally: Figures 1-4 of the Appendix on page 78.
3
Not including animal hoarding which has symptomology as well as legal implications that extend beyond the scope
of this project. For an overview of animal hoarding and a legislative discussion, see Megan L. Renwick, Animal
Hoarding: A Legislative Solution, 47 University of Louisville Law Review. 585 (2009).
4
Reference to excessive accumulation or hoarding of items is noted in early texts from Dante’s Inferno to works by
Charles Dickens, Honoré de Balzac, and Nikolai Gogol (Frost & Steketee, 2010). For a detailed anthropological
account of hoarding, refer to Susan Lepselter, The Disorder of Things: Hoarding Narratives in Popular Media. The
author describes the condition’s narrative in America as “the discourse of addiction and its management bleed[ing]
into a story of phantasmagoric consumption in neoliberal capitalism, offering a nightmare image of normative
consumption and a grotesque shadow of ordinary, unmarked commodity fetishism” (Lepselter, 2011).
5
Mainstream articles come from a wide array of perspectives, including articles that range from land-lord forums
(Hoarder tenants: Risks, prevention and avoiding fair housing trip-ups, Davis. 2014), news articles (Texas officials
unclear on methods of enforcing new hoarding law, Fraser. 2014), to health columns in national media (Hoarding is
a serious disorder - and it's only getting worse in the U.S, Solovich. 2016; Homeless and hoarding, Sottile. 2015)
6
Though prevalence studies and most research has been conducted in western industrialized and urban areas, the
evidence available from non-western and developing nations suggests that hoarding is a “universal phenomenon
with consistent clinical features.” (APA, 2013).
Treating Hoarding Disorder Egersdorf 2016
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Part 1 of this article will be a discussion of hoarding as a disorder, and as a disability
defined by the Americans with Disabilities Act (ADA, 2009). It will examine the behavioral,
neurological, and anthropological features of HD, and discuss the potential role of the ADA, the
Fair Housing Amendments Act, and the Mental Health Parity Act in providing accommodations
for hoarders.
Part 2 will be a discussion of policy, as well as a philosophical consideration of disorders
versus disabilities and of rehabilitation versus punishment. Ultimately, I conclude that there is
sufficient evidence to support a policy plan that provides accommodations for hoarders who are
facing eviction or other public action in regards to their hoard. These accommodations would
most likely be a time extension hinging on the condition that the individual receives treatment
and demonstrates a remission of hoarding symptoms. Finally, there is evidence that under the
federal parity law, this treatment ought to be covered by health insurance.
To begin, I will discuss what is meant when discussing hoarding as a disorder. That is,
what makes hoarding a mental disorder, and how it is unique from other disorders.
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Part 1: Hoarding Disorder Overview
Hoarding Disorder is classified in the DSM-5 by six Diagnostic Criteria (A-F) which I
will describe in turn:
Symptomology (Criteria A-D):
(A.) “persistent difficulty discarding or parting with possessions, regardless of their
actual value”7
(American Psychiatric Association, 2013). One point of contention with this
definition is the meaning of “actual value”; this term can be confusing because these possessions
have “actual” value as perceived by the hoarder. Thus ‘actual value’ as it is used in the DSM-5 is
measured in terms of the objects’ outwardly perceived utility.8
This distinction is important
because the objects do serve a purpose to the hoarder – that is, they serve as an emotional crutch.
Thus, it is important to note that simply removing the hoard (cleaning-up) is not a cure for
hoarding, but instead can be very traumatizing (Frost & Steketee, 2010).
The term “persistent” is also important, because it distinguishes HD from other cases
where the accumulation is temporary (American Psychiatric Association, 2013). Every hoarder
has a severe difficulty parting with objects, but their motives may be very different. Generally, it
is the objects’ perceived value, but many may “feel responsible for the fate of their possessions”
or feel very strongly about not being wasteful.
7
While this is the entirety of the first diagnostic criteria, it is discussed in more depth in the Diagnostic Features
section of “Hoarding Disorder” in the DSM-5 (APA, 2013).
8
‘Actual value’ is actually a difficult concept for to establish; for this purpose, outwardly perceived utility refers to
an objective-as-possible measure of monetary and sentimental value in terms of usefulness. For example, a
photograph or letter may have low monetary value but it is generally considered a useful object of sentimental value.
In comparison, a thrift-store buy at the bottom of a pile may be outwardly perceived as having both low monetary
value and low usefulness as a sentimental object. It is apparent however, that even non-hoarders would have
difficulties making decisions about the actual value of an object, because sentimental value is so subjective. Here, I
acknowledge the insight of Professor Joy Laine.
Treating Hoarding Disorder Egersdorf 2016
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(B.) Hoarding behavior is the result of a compulsion to save items as well as distress
associated with discarding them (APA, 2013). The term compulsion is important because the act
of accumulating is intentional; passive accumulation may indicate the prevalence of a different
disorder. That is, similar to other conditions involving compulsions such as OCD and addiction,
HD patients – if they have insight into the destructive effects of their behavior – will want to
discard items, but will feel compelled to do otherwise. This compulsory aspect of the disorder
makes it both addictive9
and very difficult for hoarders to seek the treatment they might need.
(C.) HD results in the accumulation of clutter that “substantially compromises [active
living spaces’] intended use” (APA, 2013) According to the DSM-5, clutter is defined as “a large
group of usually unrelated or marginally related objects piled together in a disorganized fashion
in spaces designed for other purposes (e.g. tabletops, floor, hallway)” (Ibid.). For example, the
clutter may impede use of the kitchen, furniture such as the bed, and even the toilet. This
diminished utility of the active living spaces can lead to very unhealthy, unsanitary, and
outwardly disturbing conditions. Thus, HD is hazardous to the individual’s physical health
despite its classification as a mental disorder.10
This is the primary difference between hoarding
and some very vast collections: a hoard is disorganized, and debilitating, “normative collecting
does not produce the clutter, distress, or impairment” (Ibid.).11
9
For a diagram of the addictive cycle of hoarding, see Fig. 3 of the appendix on page 78.
10
Like many other mental disorders such as depression, schizophrenia, eating disorders, and drug and alcohol
addiction – HD has very physical impacts on the affected individual. The dichotomy of mental versus physical is
complicated because indeed, all mental diseases are physical at their core. I make this point because it is important
to note that HD symptoms have negative impacts on the hoarder’s physical world that cause impairments in major
life functions.
11
However, this does not mean that a neat hoarder cannot be diagnosed. If a person’s hoarding tendencies have
never impinged on the normal function of their active living spaces, then they are either 1) a hoarder who’s
symptoms are being managed by family or friends, or 2) not a hoarder who may seem to have too much stuff. The
difference is not overly difficult to parse out.
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(D.) The symptoms of HD must result in “clinically significant distress or impairment in
social, occupational, or other important areas of functioning (including maintaining a safe
environment for self and others)” (APA, 2013). Some individuals may not believe they are
impaired, but it will be apparent to co-workers, friends, and family. Also, hoarders will always
exhibit distress when third parties attempt to discard the possessions.
In addition to the above criteria, hoarders will also display some degree of ambivalence,
or “indecisiveness, procrastination, avoidance, difficulty planning and organizing tasks, and
distractibility” – especially when in regards to their hoarding behaviors (Ibid.). Ambivalence is a
prominent trait of HD and is often observed in the immediate relatives of hoarders. Therefore, by
“hoarding behaviors,” it is meant the physical act of collecting and accumulating, but also the
cognitive symptoms, the severe distress associated with threats to possessions, the
indecisiveness, attention deficit, delusional thoughts and beliefs, and so on. Similarly, “hoarding
symptoms” refers to the physical mass of clutter as well as the distress and impairment that arises
from the hoarder’s ambivalent cognitive state.
Furthermore, HD is usually accompanied with excessive acquiring. This combination is
what leads to dangerous accumulations of objects. “Approximately 80%-90% of individuals with
hoarding disorder display excessive acquisition” (APA, 2013). Excessive acquisition, or
acquisition-related impulse control problems, include three subtypes: compulsive buying,
scavenging (acquiring free things), and kleptomania. Hoarders are more likely to exhibit one
type of excessive acquisition versus multiple ones (Frost, Steketee, & Tolin, 2010, p. 880).
These acquisitions include unnecessary, excessive purchases, multiple copies of a
possession, perceived ‘bargains’ such as garage sale and thrift-store finds, free or stolen items,
and generally, items that there may not be space for in the hoarder’s space. Anything can be
Treating Hoarding Disorder Egersdorf 2016
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accumulated but the most common items are books, paperwork, print material of any kind, and
clothing (Ibid.). Hoarding often involves collecting objects that may lack an outwardly perceived
value, but some items may actually be very valuable (from an outsider’s view) as well. Items of
varying value often comingle in the clutter, demonstrating the hoarders distorted perception and
assignment of value as well as diminished organizational skills. Excessive acquiring is also
characterized by distress associated with being prevented from acquiring items (American
Psychiatric Association, 2013).
The above criteria comprise the symptomology of HD. According to the DSM-5,
hoarders can have varying degrees of insight, ranging from good insight, where the individual
recognizes their problematic situation to no insight, where the individual has very delusional
beliefs about the importance and non-problematic nature of their behavior. Additionally, HD
may be diagnosed in the absence of clutter if it is the effect of third party intervention such as
that of a public health department or family member. This is important because a person can still
be a hoarder in the absence of an accumulation of clutter – the hoard is not the cause of the
disorder, but rather the effect.
Distinguishing Criteria (E-F):
The following criteria and statistics are important for distinguishing HD from other
disorders that may not need treatment or would respond to other treatment plans that haven’t
shown clinically significant results in HD patients:
(E.-F.) Hoarding behaviors are often “attributable to another medical condition.” (APA,
2013). These medical conditions include major brain damage, neurodevelopmental and
cognitive disorders, major depressive episodes, and Obsessive Compulsive Disorder. Hoarding
Treating Hoarding Disorder Egersdorf 2016
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behaviors (specifically, accumulating clutter) that are attributed to other medical conditions are
not diagnosed as HD. Typically, in these situations the hoarding behaviors are side-effects of a
different condition than the difficulty and distress associated with discarding personal
possessions. For example, an individual with OCD might have an aversion to touching trash that
results in an accumulation of clutter that is actually very distressing to the individual. Often, the
removal of accumulated clutter is welcome in these situations, as opposed to cases of HD, where
removal of the hoard is very disturbing to the patient and may even intensify symptoms.
Non-HD related hording behaviors often result in more unusual accumulations, such as
that of trash, human excrement, food, or obsessive note-taking and documentation (APA, 2013).
On the other hand, persons with HD tend to accumulate materials that have household uses, such
as books, purchases, second-hand items, and objects that may be associated with a personal
memory, feeling, or relationship. Furthermore, HD is considered to be a chronic illness so cyclic
patterns of hoarding behavior may be evidence that another disorder is prevalent.
HD versus OCD:
The following section will be a discussion of Hoarding Disorder compared to Obsessive
Compulsive Disorder (OCD). This is a primary distinction when considering diagnosis of HD,
because hoarding was classified as a subtype or symptom of OCD up until the release of the
DSM-5 in 2013. There is sufficient evidence that patients with hoarding symptoms require
treatments that are focused on mitigating hoarding behaviors in order to address other underlying
disorders.12
12
Treatment of HD, especially in contrast to that of OCD, will be discussed in more detail in a later section. The
purpose of this section is provide an in-depth analysis of the factors that distinguish HD from OCD.
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In cases of HD, 75% “have a comorbid mood or anxiety disorder” (APA2013; Fullana,
2013). For example, about 50% of hoarders also exhibit major depressive disorder (MDD), and
18% meet diagnostic criteria for OCD (Frost, Steketee, & Tolin, 2010, p. 880). Hoarders are
more likely to have MDD than OCD patients. Other common comorbid disorders are social
phobia (23.5%), generalized anxiety disorder, or GAD (24.4%), and the Inattentive subtype of
ADHD (observed in 28% of HD patients versus 3.2% of OCD patients). Hoarders did not differ
from OCD patients in terms of anxiety disorders except for that of panic disorder; it appears
hoarders are relatively less prone to panicking. HD patients were also more likely to have
experienced traumatic events and/or traumatic childhoods, although no difference was observed
in terms of PTSD comorbidity (Ibid.).
The study rated hoarders against OCD patients on the Saving Inventory-Revised (SI-R)
test13
and found that HD patients score significantly higher than OCD patients (Ibid.). These
results demonstrate the unique mental impairments associated with HD. It is important to note
comorbidities because hoarders are not likely to self-report their hoarding symptoms, and
increased cognizance of these associations can lead to inclusion of HD consideration in clinical
interviews. This consideration would most likely yield diagnoses that help mitigate hazardous
living conditions that might be compounding other symptoms.
It is important to note the difference between people with HD, OCD, or both for
diagnostic reasons and to maximize the efficacy of treatment plans. For example, an analysis of
21 studies showed a significant correlation between the presence of hoarding behaviors and a
poor response to regular OCD treatment methods (Bloch, M. H., et al., 2014, p. 1028).
13
The SI – R test is a twenty-three point questionnaire asking patients to rate themselves in each question from 0-4.
The questions rate individuals on clutter, difficulty discarding, and excessive acquisition (Muroff, Underwood &
Steketee, 2014). The cutoff level for the total score, that is, the lowest score that indicates HD, is 41. The average
score of individuals with HD is 62.0; for those without HD, 23.7 (ibid.).
Treating Hoarding Disorder Egersdorf 2016
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Compared to patients with OCD alone, OCD patients with hoarding behaviors are 50% more
likely to respond poorly to OCD treatments across all modalities (behavioral therapy,
pharmacotherapy, and combination) (Ibid.). This means that a diagnosis of OCD in a case where
hoarding behaviors are also present, is essentially a misdiagnosis. It suggests that HD must be
treated separate from OCD, yet simultaneously: comorbid conditions (especially HD) can
obstruct both the mental and physical health standards that are necessary for effectively treating
the other condition. That is, a hoarder needs a treatment plan to address hoarding, an OCD
patient needs care to address OCD, and an OCD patient who hoards needs a treatment plan that
addresses OCD and HD. Therefore, hoarding behaviors must be identified if the patient wishes
to see healing.14
14
These comments are partially speculative, however, similar attitudes about comorbid conditions are widely held.
For example, in cases where obesity is comorbid with depression, it is typically thought that diet and exercise is
effective as a treatment for obesity only insofar as therapy and/or medication addresses the depression
simultaneously. Conversely, treatment plans that address the depression can be obstructed by mental and physical
health implications of obesity. Furthermore, it is very common to see problematic mental disorders that are
comorbid with substance abuse problems. The mental instability obstruct substance abuse treatment methods, and
the substance abuse obstructs mental health efforts. Thus, in these cases, it is necessary to address the mental
disorder and the substance abuse simultaneously. Finally, given the chronic, addictive, and problematic (physical
and mental) nature of hoarding, it is apparent that HD will obstruct most efforts to treat comorbid disorders.
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Prevalence: Hoarding Epidemiology
Development and Course (Age):
“The severity of hoarding increases with each decade of life” (American Psychiatric
Association, 2013). Thus severe hoarding symptoms are usually observed in individuals in their
fifties. Furthermore, there is evidence that pathological hoarding can be distinguished in children
(Ibid.). This means that, although outward symptoms of hoarding may not be present at a young
age, the underlying cognitive behaviors of hoarding may already be developing. This might
make intuitive sense, because the cognitive disorders that actually cause hoarding symptoms
seem to affect individuals largely on a subconscious level. And, the adaptive unconscious begins
developing and formulating constructs earlier in childhood than the conscious self (Wilson, T.,
2002, p. 49).15
Typically, hoarding symptoms begin to emerge in the teens and begin being problematic
in the twenties (American Psychiatric Association, 2013). Hoarding symptoms may be
suppressed during adolescence, but as the individual gains autonomy, the symptoms become
increasingly subversive. Clinically significant impairment usually emerges in the thirties and
continues to worsen. Therefore HD can be considered a chronic illness. Hoarding symptoms are
observed three times more frequently in patients aged 55-94 years old than in adults aged 24-54
years old. This is likely due to the low occurrence of self-reporting among hoarders: symptoms
are usually not identified until the living conditions become very hazardous or outwardly
disturbing. It also highlights the fact that most people do not have the time, independence, or
financial means to become a severe hoarder until later in life. Increased awareness of HD
15
The adaptive unconscious (AU) refers to powerful subconscious behavior-driving brain processes. Wilson
explains how the AU can learn and process information that the consciousness may have missed, how it can develop
goals and rigid schemas, and how it can have a strong deterministic role in producing behavior that may often
supersede the will of the conscious mind (Wilson, 2002).
Treating Hoarding Disorder Egersdorf 2016
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however, might encourage people to address their hoarding behaviors before the symptoms
become severe.
Furthermore, a sample of 217 people meeting HD diagnostic criteria had a mean age of
52-53 years old with a standard deviation of 10.3 years (Frost, Steketee, & Tolin, 2010, p. 879).
This means that with 99% certainty (P-value .001), 50% of HD patients are between the ages 42
and 63.16
This is unique from OCD which shows a mean age of about 35.
Hoarders usually report traumatic experiences that may have onset or exacerbated the
hoarding symptoms. This means that the development and course of HD may depend to an extent
on the individual’s experiences and environment. This would make sense, because many mental
disorders such as schizophrenia and bipolar disorder tend to be triggered by major stressors. On a
similar note, hoarders tend to be of average income, with 50% of people meeting HD criteria
earning between $10,000 and $63,000 per year (Ibid.). This might suggest that severe poverty
and affluence both have features that limit the expression of hoarding symptoms.17
However, in
general, psychiatric disabilities typically lead to very low income and worst-case housing needs,
and hoarders are often prone to homelessness due to evictions and because HD symptoms violate
quality codes of “last-chance” subsidized housing options (Ligatti, 2012; Cobb, et al., 2007).
Gender:
Some epidemiological studies find hoarding to be more prevalent in males, however,
clinical samples are predominantly female (American Psychiatric Association, 2013). This
16
This confidence interval was presented in the Frost, Steketee, & Tolin (2010) study.
17
Someone who is very poor might simply not have the means to accumulate a hoard, and hoarding behaviors in
homeless individuals would likely be very difficult to identify and often go unreported. On the other hand, hoarders
with sufficient means will be able to afford increased storage space such as large estates, or rented storage garages,
and might also be more likely to have stable social support such as a spouse or a housekeeper. Still, both homeless
and rich persons can be hoarders, so these are merely modulating factors.
Treating Hoarding Disorder Egersdorf 2016
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contradiction suggests one of two options: either a) females are more likely to report their
hoarding behaviors due to gender-based normative attitudes,18
or b) females tend to exhibit more
severe hoarding symptoms that lead to increased reporting rates.
The study by Frost et al. finds 79% of individuals meeting HD criteria to be female. This
is in comparison to OCD patients being 47% female (2010, p.879). The study found that women
were more likely to meet the criteria for compulsive buying (55.3% prevalence compared to 27%
in males) (Frost, Steketee, & Tolin, 2010, p. 880). This might be due to social norms and gender-
based stigmas about shopping for leisure. Because compulsive buying can lead to very rapid
accumulation, the discrepancies noted in the DSM-5 (that HD is reported in females more often
than males, but not necessarily more prevcalent in females) could be due to gender-based norms
about shopping, an accessible method of excessive acquisition.
Finally, the proportion of men with both HD and OCD was greater than that of men with
HD alone (Ibid.). This might be evidence that men are more likely to be treated as OCD patients
than as hoarders, however, there was still fewer men with both disorders than there was women.
This evidence may reflect the fact that initially, more female subjects were included in the study
than males, but regardless, it appears that hoarding is more prevalent in females than males. That
is, evidence suggests females are more prone to being identified as compulsive hoarders than
males.19
18
This might be a possibility because the studies looked at data gathered from pre-existing clinical reports.
19
Note that the difference between “more prevalent” and “more prone to being identified” is important. Gender-
based stereotypes may actually play a large role here; for women typically feel less stigma about seeking help than
males.
Treating Hoarding Disorder Egersdorf 2016
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Physiology20
:
A few studies have examined the neural underpinnings of the cognitive impairments that
contribute to HD symptoms.
Positron emission tomography (PET) demonstrated an association between the presence
of hoarding symptoms and diminished resting-state glucose metabolism in the dorsal anterior
cingulate cortex (dACC) (Saxena, et al., 2004). The dACC is thought to be involved in reward-
based decision-making (Williams, et al., 2004), monitoring conflicting cognitive responses
(Botvinick, et al., 1999), and predicting the difficulty of a task (Brown and Braver, 2005).
Additionally, one study’s results show that the dACC is involved in metering response time in
accordance with the difficulty of a given cognitive demand. That is, in addition to predicting the
cognitive demand of a task, the dACC promotes efficiency and accuracy by either hastening or
prolonging response times accordingly. Therefore, decreased activity of the dACC in hoarders
may contribute to their prolonged difficulty in making decisions about possessions. It may also
in part explain the distress associated with discarding possessions, because the dACC is not
adequately creating heuristics for decisions about discarding, and possibly, misinterpreting these
tasks as cognitively demanding, or very important decisions. Finally, decreased activity of the
dACC might also contribute to the hoarder’s difficulty prioritizing conflicting responses. For
example, the hoarder might recognize that they have to discard items, but they still feel
incapacitated; their sluggish dACC might be the partial cause of this cognitive block.
A functional magnetic resonance imaging (fMRI) study shows that HD symptoms seem
to be associated with increased activity in the ventromedial prefrontal cortex (vmPFC) when
subjects are asked to imagine discarding an item (An, et al., 2009). That is, hoarders’ brains react
20
For visual reference to the particular brain-regions described in this section, see generally: Fig. 2 of the appendix
on page 78.
Treating Hoarding Disorder Egersdorf 2016
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to the abstract thought of discarding an item much more strongly than the brains of healthy
control (HC) subjects. The vmPFC plays a role in the emotional aspects of decision-making
(Damasio, 1994). Furthermore, studies using gambling tests to simulate emotionally significant
decisions (or, risk-sensitive decision-making) show that the vmPFC is involved in inhibiting
risky decisions (Studer, et al., 2015). Therefore, increased vmPFC activity may explain the
strong emotional response to discarding possessions observed in hoarders. Furthermore, it
appears that the hyperactive vmPFC may also be a factor contributing to the hoarder’s difficulty
making those decisions because the vmPFC has mistakenly identified the task as very risky
behavior.
Similarly, when they are making real-time decisions about actual possessions, hoarders
have been shown to exhibit greater activity in the left lateral orbitofrontal lobe (LOFC) than
healthy controls (Tolin, et al., 2009). The LOFC has been tied to post-facto regret, that is,
patients with damage to the LOFC make better choices in gambling tests than patients with
damage to the vmPFC, but they report significantly less regret after a wrong move than do
vmPFC patients and healthy controls (Levens, et al., 2014). This suggests that the LOFC is
involved in emotional reactions to choices, which can contribute to future behavioral change. For
example, if one feels very poorly about a particular choice, they may be less likely to make that
choice again, or they may avoid that decision making situation entirely next time. Therefore,
hyperactivity of the LOFC may play an important role in hoarding symptoms because it leads
hoarders to avoid confronting their accumulations of clutter. That is, as a result of abnormally
high levels of regret, hoarders avoid future situations where they will have to make very
emotionally stressful decisions about their possessions. This emotional block, then, might
Treating Hoarding Disorder Egersdorf 2016
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contribute to the increasing severity of a HD symptoms, as well as the hoarder’s level of denial
and justifications for the problems that arise from those conditions.
Additionally, further fMRI study shows that compared to patients with OCD and healthy
controls (HC’s), patients with HD exhibit lower activity in the ACC and insula (including
vmPFC and LOFC) when making decisions about items that do not belong to them (Tolin, et al.,
2012). Also in accordance, hoarders show greater activity in these regions compared to the other
two groups when decisions about personal belongings are involved (Ibid.). Finally, the degree of
abnormal neural activity in HD patients correlates significantly with the severity of their
hoarding symptoms (Ibid.). These results strongly suggest that abnormal functioning in the ACC
and insula of HD patients contributes to difficulties in identifying the “actual” value of items, in
producing appropriate emotional responses to them, and in regulating affect when making
decisions about them.
A study comparing neural activity in HD patients, OCD patients, and HC’s observed a
relative hypoactivity (decreased activity) of emotional response to hoarding-unrelated decisions
in hoarders (Tolin, Witt, & Stevens, 2014). That is, in response to decision-based failures, the
LOFC in hoarders was significantly less active because the task did not concern the hoarders’
personal belongings. So, while hyperactivity in the LOFC produces abnormally high post-facto
emotional responsivity (regret) in regards to decisions about personal possessions, hypoactivity
in the LOFC of hoarders produces abnormally low amounts of regret in regards to decisions that
do not concern personal possessions.
As a final note, a recent study has confirmed that rumination is a significant predictor of
HD symptom severity (Portero, et al., 2015). Rumination, defined as “repetitive negative
cognitions of upsetting symptoms in response to distress,” was measured in a large sample (N =
Treating Hoarding Disorder Egersdorf 2016
19
381), and controlled against the general level of depression overall. This observation makes
intuitive sense because hoarders display increased emotional stress associated with both
imaginary discarding and actual situations of discarding personal possessions. Hence, hoarders
experience emotional trauma during the process of loss, and they experience traumatic emotions
of guilt, regret, and remorse in immediate response to making the decision (this typically results
in increased hoarding severity); then, they experience prolonged emotional angst that enforces
their desire to avoid future situations that require decisions about discarding (Ibid.). This
combination of emotional responses seems to be in conflict because worsening symptoms make
it more difficult for hoarders to avoid future problems that generate loss. Therefore, rumination is
a major contributing factor to the addictive nature of HD that makes the condition so debilitating.
These studies support the DSM-5’s classification of HD as a unique disorder. HD
symptoms appear to be in part dependent on underlying neurological abnormalities that are
distinct from those exhibited in HC’s and patients with OCD.
Treatment:
Not surprisingly, HD patients respond to OCD treatment methods poorly (Bloch, et al.,
2014). A study examining the efficacy of a 26-session individual cognitive behavioral therapy
(CBT) specialized for hoarders found that the treatment significantly reduced HD symptoms
(Steketee, et al., 2010). By ‘specialized for hoarders’, it is meant that the CBT sessions focus on
addressing and correcting the maladaptive cognitive and emotional processes that results in
hoarding behavior. For example, CBT sessions typically include a) efforts to motivate patients to
change and pursue treatment, b) exercises that develop discarding abilities and resistance to
urges for acquiring, c) cognitive restructuring that challenges decision-making, maladaptive
Treating Hoarding Disorder Egersdorf 2016
20
beliefs, and thought patterns, and d) training in organizational and decluttering strategies (Tolin,
et al., 2015).
A follow-up study reports that the significant improvements observed at post-treatment
were generally well-sustained after twelve months (Muroff, et al., 2014). Clinical global
impression-improvement (CGI-I) ratings showed 79% of subjects to be ‘much improved’
including 62% being ‘very much improved’ at follow-up. The CGI-I is a general 7-point rating
scale that can be applied to clinical judgement as well as personal judgement, and assesses
overall improvement from baseline conditions to current conditions (both cognitive and
behavioral) (Busner &Targum).
According to the study, the most commonly observed response to the CBT treatment is
characterized by an initial improvement followed by slow but steady improvements across time
(Muroff, et al., 2014). The study also found that baseline HD severity levels, gender, and levels
of perfectionism and social anxiety might contribute to decreased efficacy of the CBT treatment
(Ibid.). Not surprisingly, subjects with worse initial symptoms have a harder time adapting. This
might suggest that the necessary duration of treatment ought to be determined, at least in part,
based on the severity of pre-treatment HD symptoms. Finally, the results seem to suggest that the
male gender is associated with decreased improvements (Ibid.). Again, this might suggest that
gender ought to be considered when prescribing an effective treatment. These results show that
individual CBT is a plausible, durable treatment for hoarding, however, it does not reach the
degree of efficacy observed in comparable treatments for OCD and anxiety disorders (Ibid.).
Therefore, more research is needed to develop strategies that address perfectionism and anxiety,
gender differences, comorbid conditions such as depression and OCD, as well as the older mean
Treating Hoarding Disorder Egersdorf 2016
21
age of hoarders, which contributes to deeply engrained cognitive schematics as well as generally
degraded physical health.
A meta-analysis of reported CBT efforts for hoarders conducted by the same group of
researchers comes to similar conclusions. This study reports that HD severity consistently
decreases across studies with a large effect size (Tolin, et al., 2015). Large effect size refers to a
statistically significant difference between means, that is, the study showed a significant
difference between the average symptom severity before and after. The study observes reliable
improvement in discarding ability, and in regulating excessive acquiring, however, much less
improvement was observed in terms of functional impairments such as indecisiveness, anxiety,
and perfectionism (Ibid.). This evidence suggests that while CBT may promise improvement in
terms of HD symptoms, it does not functionally cure HD. This also supports the idea that HD is
best treated across multiple modalities – CBT might be able to address behavioral problems, but
overall treatment efficacy might be improved if medication were able to address underlying
neurological and cognitive problems.
According to the same study, the group that yielded the strongest results from CBT were
younger females, supporting past observations that male patients and older patients tend to
respond worse to CBT (Ibid.). Additionally, the level of improvement was correlated to the
number of CBT sessions and home visits conducted (Ibid.). Due to the addictive nature of HD,
hoarders are prone to relapse (Solovich, 2016). Therefore, it would make sense that sustained
monitoring and social support/reinforcement is conducive to better treatment results overall. The
role of family and/or community in non-invasive monitoring of the hoarder then, is important to
their success (Kress, 2016).
Treating Hoarding Disorder Egersdorf 2016
22
While the improvements observed in the meta-analysis study were significant (that is, the
improvements made in symptom severity were not attributable to chance), the actual change was
generally not enough (Tolin, et al., 2015). For example, the post-treatment scores placed most
patients, albeit quite improved, closer on the range to hoarding behavior versus normal behavior
(Ibid.). Again, this suggests that CBT as a treatment for hoarding is currently not sufficient for
curing the disorder. CBT strategies will need to be improved and other treatment methods such
as pharmaceuticals will need to be developed for curing HD.
An important result of this study on CBT is the observation that neither a) the presence of
professional therapists versus peer group-leaders, nor b) individual versus group sessions, nor c)
pre-treatment levels of depression impacted the overall efficacy of CBT on HD symptoms
(Tolin, et al., 2015). Therefore, a relatively cost-effective system of setting up group therapy
sessions that help hoarders manage their symptoms might be feasible (Muroff, et al., 2011).
Group CBT might also be preferable as it addresses the social impairment/anxiety, withdrawal,
and depressive components of most hoarders’ symptoms (Muroff, et al., 2012). Furthermore,
group sessions – similar to that of AA meetings – can become self-sustaining by constantly
training program-based treatment strategies to new-comers. Also, group sessions offer sustained
therapy that may be more conducive to healing, as noted by Tolin et al. 2015 (Muroff,
Underwood & Steketee, 2014).
Another cost-effective system of treating HD that should be mentioned is the possibility
of increasing parental awareness. Based on observations of clinical case studies, an altered CBT
approach through family-based treatment may be able ‘nip it in the bud’ (Ale, et al., 2014).21
21
As we have discussed, HD symptoms may not be prevalent in children because their parents are managing their
items. However, the study also describes HD in its latent form, which may still be fairly easy to identify. For
example, children who are susceptible to becoming hoarders later in life might show strong emotional ties to
Treating Hoarding Disorder Egersdorf 2016
23
Parents would have to be trained on how to not give into their child’s hoarding behaviors, but a
system of positive and negative reinforcement would be a very cost-effective solution. It is
thought that younger people are more receptive to cognitive restructuring, however, the efficacy
of family-based treatment on mitigating HD symptoms has not been studied, so the proposal is
largely speculative.
No formal clinical trials exist for observing the efficacy of pharmaceutical agents on HD
(Kress, et al., 2016). However, due to high comorbidity (APA, 2013; Fullana, 2013),
pharmacological treatments would likely help mitigate hoarding symptoms, at least in part, by
treating other comorbid conditions such as anxiety, ADD/ADHD, depression, and OCD (Ibid.).
Furthermore, two possible drugs have been identified in smaller studies. 1) Serotonin and
norepinephrine reuptake inhibitor, extended-release venlafaxine (Effexor XR; Saxena, 2011),
and 2) selective serotonin reuptake inhibitor (SSRI) paroxetine (Paxil; Saxena, et al., 2007) have
both demonstrated efficacy in reducing HD symptoms. Both drugs utilize reuptake inhibition
which essentially increases the amount of activity serotonin and norepinephrine have in the
brain.
One reason these and similar drugs might help hoarders is that serotonin and
norepinephrine are both excitatory neurotransmitters, that is, the presence of these chemicals in
the brain generally elicit behaviors as opposed to inhibiting them. This may seem
counterintuitive, because hoarding behaviors are something we want to suppress. However,
similar to how SSRI’s work in depressive patients to help them ‘break the cycle’, reuptake
inhibitors may be able to help HD patients get past the cognitive blocks that inhibit their ability
to address the problem of hoarding in their lives. In other words, by increasing the likelihood of
disorganized collections of “junk” such as scavenged objects. They might show poor organizational skills. They
might become very possessive and distraught when the parents attempt to get rid of old or outgrown toys.
Treating Hoarding Disorder Egersdorf 2016
24
eliciting behavior, drugs may be able to help hoarders proceed with clean-up efforts more
effectively, thus mitigating symptoms while facilitating cognitive restructuring by reinforcing
positive behavior.
Drawing from the discussion on physiology, another explanation for the efficacy of
SSRI’s is the ability of neural stimulation to help regulate abnormal functioning. For example,
serotonin is linked to mood alteration, and may help to improve the generally negative emotions
hoarders associate with discarding. The drug might also elicit improved emotional sensitivity to
non-hoarding based decision in hoarders, which would help to normalize the HD patient’s
approach to decision-making and value-assignment in general. Serotonin is also thought to help
depression symptoms by altering social behavior, therefore, part of the drug’s efficacy may lie in
its ability to mitigate underlying anti-social habits/anxieties that contribute to HD severity.
As a final note on treatment, one psychologist has suggested that a weakness of CBT is
its failure to address the hoarder’s wounded soul (Winters, 2015). Indeed, hoarders often report
stressful or traumatic experiences as suspected triggers of the onset or exacerbation of the
disorder (APA, 2013; Landau, et al., 2011). A ‘depth psychological’ approach would examine
the root of the behavior: the cause of what made objects become a part of the hoarder’s identity.
This alternative therapy strategy ultimately aims to answer the question, ‘what does the soul (or
unconscious) want with this clutter?’ (Ibid.). It focuses on the individual as a person and how
their stories can shed light on their situation. Depth psychology does not aim to replace CBT, but
rather to “illuminate what is missing in clinical research” on HD (Ibid, p. 117). Depth
perspectives may help strengthen clinical CBT strategies by helping individuals understand their
processes, value-systems, and difficulties with interpersonal relationships that may contribute to
their deep cravings for what the objects have come to represent.
Treating Hoarding Disorder Egersdorf 2016
25
In conclusion, the most efficacious treatment plan for hoarding is, in theory, a
combination of modalities (Kress, et al., 2016). Counselors, psychiatrists, and clinicians should
address HD symptoms with personalized therapy plans, and pharmacological treatments should
be considered as supplemental, especially in lieu of any comorbid conditions. Family and
community should be prepared to help, especially post-treatment in order to maintain
improvements and manage urges (Muroff, et al. 2012), but also during treatment, if necessary, in
the form of organizational teams and clean-up task-forces (Bratoitis, et al., 2013). Finally,
counselors must be prepared to temper their expectations, and be patient. Due to the typically
older age of those who report HD symptoms, and the resulting deeply-engrained behaviors and
beliefs, HD patients can be particularly difficult to work with (Tolin, Frost, & Steketee, 2012).
However, maintaining a supportive relationship that enforces prosocial behavior as well as
reduces rumination is crucial to the success of therapeutic efforts (Ibid.). Therefore, it is
important for counselors to focus more on their relationship with the hoarder as a person, as
opposed to their expectations of clinical results.
Stigma:
One major problem with HD is that it often goes unreported. Interestingly, individuals
with HD symptoms are five times more likely to seek medical attention22
than the general
population (Tolin, et al., 2008). The problem is that hoarders usually seek mental health services
for comorbid condition with less stigma associated to them, while HD symptoms go unreported
or undiagnosed. As mentioned earlier, around 75% of hoarders have one or more comorbid
22
For other, ‘unrelated’ conditions. This might suggest that hoarders typically recognize that they need help – that
their livesand living conditions are indeed in disarray. This finding also correlates with the observation that HD
symptoms typically lead to diminished physical health.
Treating Hoarding Disorder Egersdorf 2016
26
mental problems (APA, 2013; Fullana, et al., 2013). Hoarders usually seek treatment as a last
resort due to social pressures from friends, family members, or external threats such as eviction
or condemnation (Tolin, et al., 2010). The problem with non-proactive treatment is that the
average age of HD patient is much older than in comparable disorders,23
which results in
increased difficulty breaking cognitive blocks and successfully treating HD symptoms.
The most obvious reason that HD symptoms often go unaddressed is the social abjuration
of excessive and compulsive consumption and messiness. Popular media24
has not portrayed
hoarding in a favorable light either; portraying HD behavior as a “voyeuristic freakshow”
(Ligatti, 2012), and “marked by disgust in contemporary popular culture” (Lepselter, 2011).
Another contributing factor to low reporting rates is the hoarder’s own rumination and
efforts to avoid confronting their situation. Many hoarders might not even think their behavior is
a problem (APA. 2013). The issue of non-reporting is compounded by the fact that males appear
to both report HD symptoms less than females, and respond to treatment worse than females
(Bloch, et al., 2014). Thus, males with HD symptoms might be at an increased risk of developing
severe hoarding tendencies. This discordance may be attributable to gender-related attitudes
about seeking and receiving treatment, but at any rate, hoarders should be encouraged to identify
and report their hoarding behaviors.
The stigma is perpetuated because HD is not necessarily screened for in mental health
surveys. Increasing awareness of HD and its diagnostic cues should be the number one priority
of medical professionals concerned with treating hoarding.
23
With this statement, I am also saying that HD patients are less likely to report their hoarding symptoms because of
the high level of stigma, or shame, associated with hoarding. This is in comparison to that of conditions like OCD or
even addiction, where seeking help is generally encouraged in society.
24
Hoarders, A&E; Hoarding: Buried Alive, TLC; Extreme Clutter, OWN; A Life of Grime and Gutted, BBC;
hoarders have also been featured on the talk-shows Oprah and Dr. Phil (Lepselter, 2011).
Treating Hoarding Disorder Egersdorf 2016
27
For example, although group CBT sessions may be a positive treatment solution, in order
to make group CBT sessions effective, there would have to be groups of hoarders that are
comfortable opening up about their issues.25
This means breaking down social stigmas and in
turn, increasing report/diagnosis rates. Additionally, increasing awareness and cultural
understanding of hoarding as a disorder, and encouraging hoarders to seek treatment for their
hoarding symptoms (that is, reducing stigma) would pave the way for a system of recognizing
hoarding symptoms in children and younger adults. Confronting hoarding behaviors at an early
age may be the most effective and efficient way to reduce the prevalence of HD in the United
States, but is not possible if social stigma causes parents to be uninformed, or closed off to the
possibility despite tell-tale behavioral cues.
25
The fact that group sessions for hoarders are almost non-existent suggests that HD symptoms are actually more
heavily stigmatized and undertreated than that of addiction and alcoholism.
Treating Hoarding Disorder Egersdorf 2016
28
Law and Policy
The following section will discuss three laws that might be important to individuals who
are diagnosed with hoarding disorder. Typically, the best way for non-medical professionals –
such as family-members, Child Protective Service (CPS) agents, and land-lords – to help a
hoarder is to seek legal and medical attention for the individual. Therefore, a professional
diagnosis of HD is an important criteria for talking about HD as it is affected by the law.
Problematic symptoms including increased fire and accident hazards, diminished air
quality that affects physical health, and infestations usually call for outside intervention. Whether
this intervention comes from concerned family members or from government/community
sanctions, it almost always will involve loss for the hoarder. The most common losses include
the loss of a child through CPS, loss of possessions through forced clean-outs, and loss of a
home through evictions and condemnations (Sottile, 2015). Due to preexisting cognitive
impairments, hoarders are not equipped to deal with these types of loss appropriately, and due to
the addictive nature of HD, these types of loss typically lead to more pronounced symptom
severity in hoarders. Frost and Steketee describe the problems with this situation in the book
Stuff: Complulsive Hoarding and the Meaning of Things.
“One of the worst experiences for someone with a hoarding problem occurs when
another person or crew arrives to clear out the home, usually at the order of the
public health department or a frustrated family member … These scenarios almost
always leave the hoarder feeling as if his or her most valued possessions have
been taken away, which in fact may be the case. Beyond this, most hoarders have
a sense of where things are amid the clutter. When someone else moves or
discards even a portion of it, this sense of “order” is destroyed. We know of
several cases in which hoarders have committed suicide following a forced
cleanout.
The time, expense, and trauma of a forced cleanout are not worth the effort if any
other alternatives are possible. Although conditions in the home may improve
temporarily, the behavior leading to those conditions will not have changed.
Moreover, the likelihood of obtaining any future cooperation after such trauma is
slim. One Massachusetts town in our survey of health departments conducted a
Treating Hoarding Disorder Egersdorf 2016
29
forced cleanout costing $16,000 (most of the town’s health department budget).
Just over a year later, the cluttered home was worse than ever.”
Because loss-inducing interventions on problematic HD symptoms can be so
traumatizing and destructive to treatment efforts, it is important that hoarders are aware of their
rights under the law.
Americans with Disabilities Act (ADA) of 1990, As Amended:
According to the ADA, “physical or mental disabilities in no way diminish a person’s
right to fully participate in all aspects of society” (ADA, 2009).26
Furthermore, the act aims to
provide law that eliminates discrimination against people with disabilities. Therefore, the status
of HD as a disability may be crucial to individuals who are faced with evictions or
condemnations because it is possible they are being discriminated against due to the general
stigma associated with HD symptoms. This discrimination is a major contributing factor to the
overall hinderance of big-picture HD treatment efforts. When hoarding symptoms become an
annoyance or a problem for community members and neighbors, they might not be sensitive to
the fact that it is very difficult for hoarders to overcome cognitive blocks and pursue treatment.
When the actual solution to the problem might be an enforced enrollment in a therapy program,
or a visit with a doctor, it is often assumed that the best option is to physically and forcibly
remove the undesirable clutter.
26
This is actually a difficult clause to defend because it would seem that someone with a cognitive disability, for
example, is actually not able to participate in many aspects of society, such as becoming a mathematics professor.
What is important about this statement here, is the dichotomy between disability and society. For some have argued
that no-one is disabled, rather society is merely insufficiently equipped to accommodate for some people’s
conditions. Thus, I believe the ADA is making a proactive statement about the importance of a society’s
commitment to making itself equally accessible. And given a fair, equal opportunity, then we may still allow for the
reality of some situations. That a blind person can’t be a bus driver, or a paralyzed person can’t be a construction
worker: they ought to have equal access to the opportunities, but they may or may not meet the eligibility
requirements.
Treating Hoarding Disorder Egersdorf 2016
30
It seems there is a discordance between the perceived and the actual effect of
intervention; the task-force may believe they are doing the hoarder a service by cleaning up their
mess for them. But on the other hand, the hoarder does not perceive the accumulation as a mess,
and their inability to mitigate the circumstances does not lend itself to physical assistance so
much as mental assessment. For example, we can imagine a situation where an individual
suddenly can’t walk and his dog becomes a noisy disturbance that won’t stop barking because its
master isn’t taking it on walks: we wouldn’t forcibly remove the dog, instead we would seek to
solve the cause of the problem by helping the owner regain mobility, or by walking the dog for
him.
The ADA defines a disability as follows:
1. A physical or mental impairment that substantially limits one or more major life activities
2. Major life activities include but are not limited to caring for oneself, seeing, hearing,
speaking, learning, working, etc.
3. This definition should be construed in favor of broad coverage of individuals (ADA,
2009)
At first glance, it would appear that under this criteria, HD ought to be classified as a
disability. For example, the fourth diagnostic criteria of HD is that symptoms result in an
impairment in one or more areas of functioning. Also, the inability to maintain safe living
conditions is very comparable to the substantial limitation of one’s ability to take care of
themselves. Although the discussion of disorder versus disability is much more complex and will
be discussed later, for now, I will assume that HD ought to be considered a disability.
Treating Hoarding Disorder Egersdorf 2016
31
Fair Housing Amendments Act (FHAA), 1989:
“Both housing providers and mental health advocates have struggled with precisely how
to satisfactorily balance the housing needs of the mentally ill with the needs of neighbors and
landlords.” (Ligatti, 2012) The FHAA refers to disabilities as “handicapping conditions”,
however it adopts the same definition used in the ADA (United Spinal Association, 2004).
Therefore, individuals protected by the ADA are also protected by the FHAA. The FHAA
protects individuals from being discouraged from living in a community or neighborhood based
on race, sex, disability, etc. (Ibid). Most importantly, the FHAA prohibits discrimination, defined
as the "refusal to make reasonable accommodations in rules, policies, practices, or services,
when such accommodations are necessary to afford [handicapped persons an] equal opportunity
to use and enjoy a dwelling." (FHAA, 1989).
It appears that under this definition, hoarders are protected from losing their homes under
the FHAA. It might be argued that the eviction would be a discrimination against the clutter but
not against the hoarder, however, the previous discussion of HD shows how hoarders and their
objects are inextricably connected. Thus, to remove a person from their house on the basis of
excessive clutter as a result of HD behaviors, would be classified as a discrimination on the basis
of a disability. Furthermore, provided that HD is a disability, eviction on the basis of HD-
contrived clutter would be considered the denial of an equal opportunity to enjoy a dwelling. Or
more generally, to say that hoarders are not allowed to live as hoarders, would be to infringe
upon several of their capabilities necessary to flourish. According to Martha Nussbaum, rights
promote these capabilities; so it seems that legal intervention, while often unavoidable, also
typically act as a violation of the hoarder’s human rights.
Treating Hoarding Disorder Egersdorf 2016
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Thus, it seems that the law would have some exceptions be made so that hoarders are
allowed to live as hoarders. This should hold, at least to the extent that the hoarder’s stay of
eviction is not an unreasonable accommodation. It does not seem unreasonable to for the hoarder
to ask for an extension of time that accommodates for enrollment in a treatment program that
would be expected to conscientiously mitigate the immediate concerns while helping the hoarder
develop skills for managing their disorder. Accommodation as contingent upon the pursuit of
treatment is crucial because requests for accommodation must meet the necessity clause which
entails “showing that the desired accommodation will affirmatively enhance a disabled plaintiff’s
quality of life by ameliorating the effects of the disability.”27
For example, a time extension does
not help mitigate the problems at all, but a time extension granted in the interest of promoting
efficacious treatment, on the other hand, fulfills the necessity clause.
Requests for accommodation, which can be made in writing or orally, are treated on a
case-by-case basis, and must also meet the reasonableness clause (Ligatti, 2012). The FHAA
does not explicitly define reasonable accommodation, but in the case of Oxford House v. Town of
Babylon, the court found that the “accommodation is reasonable if it does not impose a
substantial administrative or financial burden on a municipality or create any fundamental
change in the neighborhood.” (United Spinal Association, 2004). In the case of renting, the same
definition can be applied (Ligatti, 2012); for example, a request for accommodation that requires
the provision of a ride service would be considered unreasonable because it imposes the
“fundamental change” of bringing transportation to housing. Financial and administrative
burdens are also considered on a case-by-case basis.
27
Based on the court-ruling in the case of Bronk vs. Ineichen, 54 F.3d 425, 429 (7th
Cir. 1995)
Treating Hoarding Disorder Egersdorf 2016
33
Thus, if a hoarder wishes to be protected by the FHAA from eviction, they need to be
prepared to mitigate any problems that harm the neighborhood, such as clutter that over-flows
past property lines. This is important because unsafe living conditions for children might be
considered a harm to the community and thus provide grounds for expediting the drastic
measures needed to relieve a potentially dire situation. In other words, the hoarder’s protection
under the FHAA should not over-rule a community’s concern for a child’s well-being. Finally,
based on this definition, the contingent treatment plan that the hoarder is granted extended time
to complete, should not impose a substantial financial or administrative burden. Thankfully, most
of the medical expenses might be covered by health insurance, therefore, the only administrative
burden on the municipality would be in establishing a system for connecting hoarders with CBT
treatment plans. Because group CBT sessions have been observed to help hoarders manage their
symptoms, I believe that setting up group programs that serve a number of individuals in the
community would not constitute a substantial burden. Prevalence of hoarding is estimated to be
between 2-6% depending on the population, so realistically, increased awareness and social
appropriation of group therapy sessions could attract a fairly strong support network for hoarders
trying to confront their issues.
A final consideration on the FHAA, is the question of whether or not it protects against
legal seizure of personal property, as would be the case in forced cleanouts. In line with the
thinking that the hoard is really a part of the hoarder, there is a strong argument for why the
FHAA should protect against forced cleanouts. It would appear that a forced cleanout is the same
as an eviction in that it is an action based on the discrimination against HD, and not solely
against the negligent living conditions. That being said, if hoarders hope to see some protection
Treating Hoarding Disorder Egersdorf 2016
34
from legal seizure of property, they must be prepared to mitigate any ‘harms’ to the community,
which may include visible clutter that has accumulated outside of the house.
Now let’s turn to the consideration of health-care coverage.
Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (federal
parity law), 2008:
This law mandates that insurance companies treat mental health coverage equal to or
better than physical health care. In other words, there should be the same deductibles or
copayments applied to either mental or physical treatments. It protects people from limits on
number of mental health visits allowed per year, requiring insurance companies to impose limits
on the basis of “medical necessity” (American Psychological Association, 2015). The federal
parity law does not apply to all health-care plans. The ones it does apply to are a) employer-
sponsored programs (for companies with 50 or more employees), b) any plan purchased through
an insurance exchange under the Affordable Care Act, c) Children’s Health Insurance Program
(CHIP), and d) most Medicaid programs (APA, 2015). Medicare, on the other hand, is one
program not affected by the federal parity law (Ibid.).
This law does not require insurers to cover mental health benefits, however, if they do,
the law requires that these benefits are provided for and covered equally in comparison to
physical health-care. Luckily, most large-group plans do provide mental health care coverage
and the Affordable Care Act requires that plans on the health insurance exchanges cover mental
health services (Ibid.). The federal parity law applies to treatment for all mental health diagnoses
(Ibid.). Thus, HD-specialized treatment programs are included.
Treating Hoarding Disorder Egersdorf 2016
35
One problem with this law is that it does not require insurers to equally reimburse
practitioners. Mental health providers have the right to accept or decline a patient based on
insurance. Consequentially, some people who are covered might have a difficult time finding
services that are participating in their insurance plan’s network. The federal parity law provides
framework that might help hoarders and their communities mitigate some of the problems arising
from severe hoarding, but it is not a perfect fix. The most important thing the hoarder can do is to
ask and become familiar with the details of their health-insurance plan. For example, a person’s
plan may or may not cover out-of-network providers, which would be important to know when
seeking mental health providers that accept their insurance.
Treating Hoarding Disorder Egersdorf 2016
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Recapitulation
Thus far, I have conducted an in-depth analysis of the characteristics and distinguishing
features of hoarding disorder. I heavily considered the treatment options that are currently
available to hoarders seeking remission or help managing their symptoms. I found that cost-
effective and efficacious treatment plans are within the realm of possibilities and further research
– in tandem with dispelling social stigma and raising awareness in general – could promise
improved clinical results overall. Then, I considered the laws that might play a part in the process
of mitigating problems associated with severe hoarding. Based on these two discussions, I came
to the conclusion that HD most likely ought to be classified as a disability that warrants
reasonable accommodations in terms of fair housing and health-care coverage of treatment costs.
The next section will address the assumptions made, any objections that may arise, and
the philosophical discussions that follow.
Treating Hoarding Disorder Egersdorf 2016
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Part 2: Warranting Reasonable Accommodation
This section will proceed in the following order: I will state the premise, and then address
any philosophical objections surrounding it.
PREMISE 1) Hoarding is a mental disorder (HD):
Despite concrete scientific evidence, as well as specific legal language, it is important to
be mindful of the issues of disorder vs. non-disorder, and mental vs. physical: 1) if hoarding isn’t
a disorder, it poses a considerable risk of undue discrimination, and 2) because the distinction
between mental and physical may hold some bearing on this discussion.
The first, more general objection to premise one above rests on the idea that
mental somehow does not equate to physical, or a disorder can only be a physical one and mental
ones do not count. The reasoning behind this argument is that mental problems are entirely
within the sphere of agent causality, or free-will. In other words, some might argue that a mental
problem is a fault that the individual is morally responsible for, whereas a physical ailment, like
cancer or blindness, is out of their control – poor them. These objections do not want anything
mental to be a disorder, and seem to draw from thoroughly discredited notions of dualism.
In reality, mental afflictions are physical afflictions, so the argument is easily dismissed.
Furthermore, we can’t just say that a mental disorder precludes physical treatment, medical
attention, and/or accommodation. Every mental disorder is a physical disorder – those who
object to this statement would probably argue something to the effect of “hoarders are merely
weak-willed.” To the contrary though, most hoarders are actually fairly strong-willed. Although
Treating Hoarding Disorder Egersdorf 2016
38
HD patients are often very set in their ways, and may seem stubborn, it is because they know that
de-accumulation causes the significant distress that they are so firmly committed to avoiding.
One might support the claim that mental does not equate to physical by citing low
responsivity to pharmaceutical agents and the lack of concrete physiological explanations for the
disorder.28
However, according to the DSM-5, “Since a complete description of the underlying
pathological processes is not possible for most mental disorders, it is important to emphasize that
the current diagnostic criteria are the best available description of how mental disorders are
expressed” (APA 2013). Therefore, when considering a disorder, it is important to look at the
symptoms. HD, like most mental disorders, has an array of physical manifestations that result in
behaviors that are well outside of societal norms. Hoarders show observable cognitive
difficulties, they have observable hoards that evoke distress in ‘rational’ subjects, and they
experience physical health problems as a result of their hoarding tendencies. Furthermore, a
contemporary scientific world view cannot tolerate a separation in kind between the mental and
physical. Rather than a world of mental and physical, or abstract and concrete, there is merely a
material world governed by natural laws.29
The second argument against hoarding as a disorder arises largely from the axiom, “it’s
all in your head.” The argument challenges the legitimacy of psychological causes. Supporters of
this reasoning might accept that mental can be physical, however, they believe the psychological
causes of hoarding in particular are questionable. They would maintain that the status of a cluster
of behaviors as a disorder depends on their arising from legitimate causes. In part, this is correct;
28
Indeed, the earlier discussion of the physiological features and treatment studies (including pharmaceutical
considerations) could be sufficient to dismiss this claim. However, for argument’s sake, it appears that mental
afflictions typically respond to pharmaceutics in much less linear or predictable fashions than most physical
conditions. Also, while medication may be able to help hoarders, it is typically rather ineffective, and the benefits of
medication on hoarders might be primarily derived from mitigating contributing symptoms from comorbid
conditions that may or may not be “more” physical then HD itself.
29
Here I acknowledge the specific contribution of Professor Joy Laine, Macalester College, 2016.
Treating Hoarding Disorder Egersdorf 2016
39
for example, we don’t want to say there’s something wrong with a person if there isn’t.30
Certainly, almost everybody seems to hoard something to some degree. Similarly, many would
agree that collecting is a fairly ‘normal’ behavior. Yet, collections show some parallels to the
addictive patterns of hoarding.
Like most mental disorders, HD is a spectrum disorder. That is, we expect to observe
hoarding symptoms over a range of severities, but at some point, the behaviors cross over into
the realm of ‘abnormal’ and become a disorder. Still, one could go so far as to argue that HD
patients are ‘just being lazy.’31
Statements of this type – just being lazy, messy, resourceful, etc.
– seem to suppose that it is normal to want to act in a way that severely degrades living
conditions. Whereas in reality, it seems that most people do not merely feel obligated to maintain
a minimum standard of living conditions, but that they would want to. Therefore, the hoarder’s
desires that conflict with their ability to take care of themselves, ought to be considered
abnormal. Laziness seems to imply some level of convenience and normalcy, however, hoarders
are rarely convenienced by their behaviors. The ‘just being’ arguments imply that hoarders
explicitly want to be hoarders. By nature of their condition, they may want to acquire and hoard
objects and avoid changing their behavior, but on a more meta-level, hoarders rarely want to be
hoarders. In this sense, hoarders are not free in terms of their condition (Frankfurt, 1982); not
like a person who can turn their laziness on and off whenever convenient. Therefore, hoarding is
an illegitimate condition originating in poor volition, but rather HD is a set of involuntary
afflictions with negative side effects, no different from schizophrenia or cancer.
30
Homicide, for example, is typically considered abnormal and might reflect disordered cognition. However, the act
might arise from a relatively ‘normal’ conception of anger. The cause then, not being of a disordered origin, might
be considered an illegitimate claim to the behavior’s status of being a disorder. On the other hand, if the cause was a
psychopathic lack of empathy and affinity for sadism, then the behavior might be legitimately labeled a disorder.
31
Or they are ‘just being thrifty,’ or they are ‘just being overly cautious,’ overly sentimental, resourceful, messy,
bored, lonely, ridiculous, etc. That is, any ‘just being’ type of rationale is applicable here. What is important is the
generic statement supposes that normal traits, when taken too far, lead to
Treating Hoarding Disorder Egersdorf 2016
40
Also, hoarders might be actively accumulating clutter and taking their hoard quite
seriously. These people might not consider themselves very lazy. Often, constantly sifting
through the clutter and picking out random ‘treasures’ to fret over makes the hoarder feel very
busy, often overwhelmingly so. This fretful agonizing over every item is what causes hoarders’
attempts at clean-outs to be very difficult. It is likely derived from some level of perfectionism,
which is a common trait in HD patients that is not typically associated with laziness. Finally, if
we did chalk it up to laziness, it seems that such a level of severity – to the point of not being
able to take care of one’s self – would lend itself to the suspicion that another disorder such as
depression was involved. In other words, even if hoarding is mere laziness, it is an abnormal type
of laziness. An abnormality that suggests disordered cognitive processes.
Therefore, on the spectrum of clutter accumulation, hoarding behaviors ought to be
considered a disorder when they become abnormal, which we can take to mean both
inconvenient and detrimental to well-being.32
For example, never exercising might be
detrimental to the health but it is tied to a notion of convenience having to do with conflicting
desires and a distaste for exercise. On the other hand, if the person became morbidly obese, we
might say that it has become both unhealthy and inconvenient, then we might look to other
factors that explain the apparent abnormality, such as an eating disorder, hypothyroidism, or
depression.
To reiterate, it seems to be a slippery-slope to argue that chronic, compulsive hoarding is
not a disorder; that is, we can’t say hoarding is not a disorder without also abandoning any
32
I do not wish to argue here that anything that is both inconvenient and detrimental to health (such as
homelessness) ought to be considered a disorder. However, it would be a compelling argument: 1) Studies show a
high prevalence of mental disorder among homeless populations (Fazel et al.). 2) this notion would strengthen the
idea that we ought to factor in possible medical considerations when confronting issues of homelessness, and 3), it
would be a more cost-effective option to treat hoarders and allow them to keep their homes than to evict them and
put undue burden on social-workers (as cases of hoarding can be very difficult to handle for non-specialists).
Treating Hoarding Disorder Egersdorf 2016
41
justification for attempting to correct it or even acknowledging it as abnormal behavior. One
might object to this statement by citing criminal activity. For we seek to correct criminal activity
but we do not typically dismiss it on the basis of mental disorder.33
However, this
counterargument rests on the assumption that there is indeed some vestige of normalcy tied to
criminal behavior. So, drawing from the criteria of normalcy described above, it would have to
be that criminal behavior is either convenient or conducive to well-being, or both. As before, HD
does not fit this criteria, so it remains true that the condition is best regarded as a disorder in the
interest of mitigating problems that arise from severe symptoms on a societal level. Thus, it is
important to consider: should hoarders be criminalized, or treated?34
I believe HD shouldn’t typically be criminalized. While there are many occasions when
HD symptoms violate federal, state, or local laws (Ligatti, 2012),35
hoarding symptoms seem to
be both inconvenient and detrimental to the health of the affected individual, while criminal
activity seems to be related to some notion of either convenience or well-being. It could be
argued that hoarding is chosen as a source of comfort, and thus prosecution pushes hoarders “out
of their comfort zone.” However, the physiological features of HD suggest that hoarding as a
coping mechanism is relatively involuntary, or subconscious. Furthermore, for a hoarder, “out of
the comfort zone” is tantamount to the “increased HD severity zone,” which suggests that
hoarding behaviors are not classically ‘comforting.’ Instead, the effect of HD behaviors is quite
33
The best example here is pedophilia, which is in the DSM-5, but rarely is accommodated for in criminal courts. In
terms of normalcy, pedophilia is tied to the satisfaction of sexual desires which equates to a pursuit of well-being
that is much more apparent than that of hoarders, who typically experience consistent worsening of mental and
physical well-being as a result of their condition.
34
It is important to consider: if criminal behaviors are correctable, oughtn’t we as a society to do something? In this
sense, it seems reasonable to support rehabilitative over retributive justice. According to Eccher and Mohr in the
May 9, 2016 issue of Pioneer Press, “Jails have become ‘de facto warehouses’ for many with mental issues.” The
main concern in terms of HD in society is, to what extent and to what end should law-enforcement intervene upon
problematic hoarding symptoms?
35
These occasions can lead to evictions, fines, and condemnation.
Treating Hoarding Disorder Egersdorf 2016
42
akin to the ‘comfort’ derived from an addict using hard drugs: Both addicts and hoarders
typically have mixed emotions about their coping mechanisms as they come to identify feelings
of comfort and relief, but also worries about their health associated with the addictive behavior.
There is no fine line between disordered and criminal behaviors, on the contrary, they
seem to overlap.36
Indeed, the very nature of criminal activity reflects a slightly disordered or
distorted view of morality, rights, and dignity. Often however, criminals might sacrifice health in
the interest of a wealth that promises comfort and longevity. Hoarders seem to have no such
intentions. Again, the difference here is well highlighted by the distinction of first and second
order desires provided by Frankfurt. Typically criminalized behaviors seem to be free; the agent
wanted to commit a crime for the perceived benefits because they are a criminal, and they
wanted to be a criminal because it was a perceivably more accessible profession than other, more
legitimate, wealth-building enterprises. On the other hand the hoarder and the addict seem less
free about their actions; they may at the surface want to hoard or to use again because they are
addicted to that behavior, but they usually loath being addicted as such, that is, they do not want
to want to hoard or use. They would feel freer if they didn’t have these urges altogether
(Frankfurt, 1982).
PREMISE 2) HD is a disability:
The discussion of premise two will proceed based on the assumption that we can accept
premise one as true; hoarding is a disorder.
The first important objection is that many disorders (as per the DSM-5) are not and
should not be considered disabilities. For example, Pedophilic Disorder (PD) is classified in the
36
For a visualization of where HD is poised in the spheres of disordered, criminalized, disabling, and normal
behaviors, see Fig. 1 of the appendix on page 78.
Treating Hoarding Disorder Egersdorf 2016
43
DSM-5 (APA, 2013. Pg. 697), yet pedophilia is treated as a heinous crime by law enforcers. This
supports the idea that criminalization acknowledges wrong behaviors as abnormal and may point
to the disordered nature of the offender, which is a strong argument for a rehabilitative versus
purely punitive justice system. It also supports the idea that the classification of something as a
disorder, does not exclude it from being treated as a criminal act. However, criminalizing HD
contributes to the problem at large because it discourages self-reporting and preemptive
treatment. Therefore, it is important to understand HD as a disability in terms of decriminalizing
the behavior so as to promote treatment versus punishment.
The main difference between disorders that are disabilities and those that are not, is the
involvement and/or directionality of harm. Disorders that fit the criteria for a disability tend to
receive more sympathy if the resulting harm is directed at the self rather than at others. For
example, PD almost necessarily involves harm to another and is very unlikely to ever be
considered a disability. Alcohol Use Disorder (also classified by the DSM-5; APA, 2013. Pg.
490) on the other hand, is more complicated. Alcoholism seems to fit the ADA criteria for
disability; affected individuals are limited in several areas of life activity as a direct result of their
disorder. Usually, the harm of being a drunk is self-deprecating, and communities often make
reasonable accommodations for their disabled alcoholic population. However, when drunk-
driving, or domestic/non-domestic abuse is involved, the harm is directed at others. In these
cases, no such accommodations are made. Even if the acts are symptoms of alcohol use disorder,
they are treated as criminal.
Another difference is that criminalized disorders such as Pedophilic disorder typically do
not fit the criteria set by the ADA, insofar as they do not substantially limit any major life
activity. We could argue that satisfying sexual desires is a major life activity, however I dismiss
Treating Hoarding Disorder Egersdorf 2016
44
this as a slippery-slope argument that leads to more negative side-effects than we can assume any
legislator would ever find agreeable.37
We could also say that pedophilia limits one’s ability to
take care of themselves based on the fact that symptoms of PD are acts or intentions that warrant
incarceration. However, this argument hinges on the fact that PD is criminalized. Therefore,
unlike with hoarders, there does not seem to be an instance where pedophiles are legitimately
disabled by their disorder while still within the confines of the law.
These examples translate to HD in the following way: hoarding symptoms typically do
not necessarily harm others, though they do necessarily harm the hoarder.38
Therefore, HD
typically fits the criteria for a disability while also not threatening any members of the
community. That being said, hoarders must recognize that some of their behaviors might indeed
harm others, and that in these cases, the outward harm might sacrifice their protections as
disabled individuals. For example, hoarders should not expect disability status to take precedent
over the well-being of animals or family members whose health is put at risk due to the nature of
the hoard. They should also expect to be accountable for conditions that risk the health of
neighbors. They must also be cognizant of renter’s rights to avoid major financial harms, and
should expect to abide by legally-binding lease agreement contracts.
The second argument against HD as a disability, comes from the fact that the disorder is
treatable; that is, the disabling aspects of HD are not necessarily permanent. Consider blindness:
blind individuals are impaired on a physical level that results in the loss of conscious eyesight,
37
A few of these negative side-effects that come to mind include claiming disability on the basis of sexual
frustration, legalizing prostitution, and justifying rape and/or sexual misconduct. Additionally, not all forms of
satisfying sexual desires are not sanctioned by the law and therefore fail to meet legitimate criteria for “major life
activities. Some of these unqualified modes of life-activity include polygamy, child marriage, prostitution, and
nonconsensual sex.
38
With this statement, I mean that the potential harm that HD presents to the community is not necessary diagnostic
criteria, whereas the impairments and clinically significant distress that hoarders experience personally are
necessary diagnostic criteria.
Treating Hoarding Disorder Egersdorf 2016
45
thus limiting several major life activities. However, this impairment, unlike that of HD
symptoms, cannot be treated, nor is it clear that it ought to be treated.39
In contrast, it is clear that
HD can and ought to be treated. For both cases however, problems that arise from the disability
reflect a failure on the behalf of society. For blindness, the problem is a failure to make
sightedness a non-factor in enjoying major life activities. For hoarding however, the problem is a
failure of society to promote treatment.
On the other hand, we want hoarders to associate the problems they face with their own
problematic behaviors. We want to encourage hoarders to seek treatment, we don’t want them to
blame all their problems on society’s inability to sufficiently accommodate for their perceived
needs. So, how do we say that HD is a disability if it is possible to treat, if we want to treat it,
and if, once treated, it is no longer disabling? Well, I believe that the presumable ‘possibility of
treatment’ actually rests heavily on the supposition of accommodation. In other words, HD must
be considered a disability in order to make most successful treatment plans possible.
Furthermore, based on the typical low self-reporting rates of hoarders, and the cultural
structures that stigmatize and inhibit proactive diagnoses, it appears that hoarding is usually quite
disabling by the time circumstances are conducive to effective treatment. Therefore, while the
best way to mitigate the disability of being blind is total accommodation, the best way to
mitigate the disability of HD is partial accommodation in the interest of making effective
treatment possible. However, by this reasoning, hoarders should expect that any claims to
39
For, accounts have been given of the less than optimal feelings toward newfound sightedness in previously blind
individuals: moreover, people who are blind, in lieu of systematic and infrastructural accommodations, do not
present any burdens on society, nor do they feel persecuted or burdened themselves. In comparison, HD symptoms
usually present persistent problems to society, regardless of accommodation, and hoarders are usually burdened as a
result of those problems.
Treating Hoarding Disorder Egersdorf 2016
46
disability accommodations will hinge on the expectation that the severe HD symptoms are
ultimately mitigated by way of accessible treatment.
The third objection to HD as a disability is that disabilities might actually be entirely
contextual, therefore a specific diagnosis might not necessarily lay claim to a disability. For
example, it is possible that an individual be diagnosed with HD, yet due to the constant vigilance
and care of loved ones and co-workers, they may not appear to be disabled in the slightest. Why
should hoarders in this situation expect any reasonable accommodation?
Upon closer examination of this objection, it appears that hoarders in the “taken care of”
situation are actually receiving a great deal of accommodation. Therefore, based on this as well
as the diagnostic criteria for HD, it seems that to be a hoarder means to require, to some extent,
assistance in managing symptoms. Whether this assistance comes from personal support
systems, accommodative treatment plans, or both, a hoarder is still a hoarder. And to be
diagnosed as a hoarder seems to assert that unmanaged symptoms will ultimately become
disabling.
In addition, HD symptoms are largely tied to events of social loss/trauma that causes
many hoarders to be both alone and antisocial, which are circumstances that typically increase
the severity of hoarding symptoms.40
Thus, social influence and the existence of a support
system has a huge effect on the severity of HD symptoms. However, the fact that a hoarder’s
lack of limitations arises from assistances that they rely upon, and that hoarders typically lack
this crucial tool for managing symptoms, only strengthens the notion that an HD diagnosis
implicate a disability – that is, a disability that requires assistance. If we assume that an HD
40
Antisocial traits in hoarders worsens symptoms doubly: 1) decreased social consequences of hoarding behaviors
and decreased management assistance, and 2) withdrawal from society that strengthens the hoarder’s need to replace
lost or missing interpersonal relationships with objects and emotional relationships to those objects.
Treating Hoarding Disorder Egersdorf 2016
47
diagnosis does not necessarily translate to a disability, we would also be assuming, for the most
part, that an HD diagnosis is not necessarily disabling. This is simply not true. Without help,
hoarding symptoms become disabling. Again, for the question of HD as a disability, whether or
not the particular case is managed by pre-existing conditions (which is not typical) should be a
non-issue.
PREMISE 3) HD warrants reasonable accommodation
The purpose of this section will be to explain 1) why hoarders have a legitimate claim to
reasonable accommodation (RA), 2) to respond to objections to premise three, as well as 3) to
clearly define RA in terms of how HD ultimately ought to be handled assuming premises one
and two are true – that compulsive hoarding is a disorder and a disability.
To begin, the reason hoarders may be seeking accommodation is based on the general
notion of justice, which calls for societies to accommodate “as wide as possible a range of
human variation” (Wasserman, et al., 2015). For this model of justice, reasonable
accommodation includes physical and social changes to the environment (Ibid.). As is the case
with hoarding, these changes often “require little more than flexibility and imagination” (Ibid.).
Therefore, hoarders might have a legitimate claim that it is reasonable to make societal changes
and or exceptions that accommodate for their particular type of human variation (that is,
hoarding disorder).
Now, the term “accommodate for” can be construed as a general protection or recognition
of human rights. According to Martha Nussbaum, human rights are derived from the Socratic
concept of Eudaimonia. Essentially, human rights promote human flourishing by making it
possible for individuals to possess the capabilities that are necessary for flourishing (Nussbaum,
Treating Hoarding Disorder Egersdorf 2016
48
1999). Some of these capabilities include bodily integrity, emotion, and control over one’s
material environment (Ibid., pg. 78-80).
For hoarders, the accumulation of clutter is a part of their identity that has replaced other
incredibly important social and emotional supports. Therefore, it seems fair to say that separating
a hoarder from their items is comparable to separating a layperson from their friends and family.
The person might argue that they are unable or unwilling to live without these relationships in
their life. So, just as denying a person all interpersonal relations might translate to an obstruction
of their emotional capabilities, HD patients might argue that disallowing HD behaviors equates
to the same violation of human rights.
The legitimate claim that hoarders are making then, is that they should be allowed the
accommodations that are reasonable for them to flourish in society – within the parameters of life
as a hoarder. This claim is based on the observation that separating hoarders from their
possessions (the most common result of problematic HD symptoms), can be construed as
infringing upon capabilities of bodily integrity, emotions, and control over the material
environment. That is, in the absence of accommodation, a hoarder’s bodily integrity is
jeopardized in the sense that possessions are an extension of the individual’s physical self; in lieu
of social and legal pressures, they do not feel that their bodily boundaries are “treated as
sovereign,” and they do not feel protected from assault (Nussbaum, 1999). A hoarder’s
emotional capabilities may be infringed in the sense that their attachments to things are under
attack; they may feel pressured to conform their emotions of love, longing, and justifiable anger
or resentment; and they may feel unduly subjected to “overwhelming fear and anxiety,” as well
as trauma (Ibid.). Finally, their control over personal environments might be threatened as they
Treating Hoarding Disorder Egersdorf 2016
49
are not able to possess movable goods on an equal basis with others, and they may feel subjected
to unwarranted search and seizure (Ibid.).41
Now, given the legitimate claim of hoarders for RA, I will consider the actual limits of
which. The proceeding discussion will attempt to answer this question by addressing important
concerns.
The first concern I’d like to discuss is how HD should be approached as it violates the
rights of others. This is different from many disabilities such as blindness, where symptoms do
not typically result in a violation of anybody’s rights. Many municipalities impose a duty on their
residents to maintain a certain level of waste management on their outdoor property. That is, the
‘normal’ person may be expected to uphold certain “curb-appeal laws”. Furthermore, citizens
who fail to comply face seizure of the problematic items, as well as steep fines for the cost of
removal. In terms of the relationship between rights and duties, “a duty of A to B implies a right
of B against A.” Therefore, if person A has a ‘curb-appeal duty’ to community B, then we would
also say that community B has a right to expect person A to uphold their curb-appeal duties. In
this sense, a hoarder’s clutter could easily be construed as impinging on the rights of others.
However, this is precisely the type of situation where reasonable accommodation seems fitting.
That is, even though in this case, HD symptoms seem to violate the rights of other community
members, it does not seem unreasonable to ask for an exception. Provided that the infraction is a
direct result of HD, it seems an exception ought to be made that arranges for the hoarder to seek
treatment versus being persecuted.
41
This final claim for reasonable accommodation on the basis of human rights may not be legitimate because search
and seizure might typically be warranted by law, and possession of items might only be restricted as it becomes
unequal to that of other community members. However, insofar as these problems are perceived as a result of the
hoarding demographic being unaccommodated for in terms of human rights, it is important at least to consider.
Treating Hoarding Disorder Egersdorf 2016
50
On the other hand symptoms of hoarding often result in much more serious infractions.
The increased surface area and typically very stagnant state of clutter accumulations lends itself
to a number of concerns such as increased fire hazard, increased levels of mold and dust in the
air, and infestations. All of these conditions can be construed as a violation of others’ human
rights, especially in rental situations where neighbors are only a wall away. For example, if
anyone is living in unsafe conditions as the result of a hoarder’s behavior, we would say their
health is threatened, which equates to a violation of their bodily health capabilities which are
necessary for flourishing (Nussbaum, 1999).42
This violation can be extended to children, other
family members, and even pets that live with the hoarder, as well as neighbors, who are
perturbed by fire hazards, increased vermin populations, and constant odors. In these cases, it
may not be reasonable to make an accommodation for the hoarder; it seems we must prioritize
the right to life of community bystanders over that of the hoarder.
It is important to note that these instances (where HD symptoms seem to violate human
rights necessary for flourishing) are worst case scenarios that describe the “fundamental changes
in a neighborhood” (FHAA) that should be avoided when offering reasonable accommodation.
In these instances, drastic measures might be unavoidable. Either the problems will be mitigated
by removing the clutter, or the harmed individuals – typically animals and children who cannot
advocate for themselves – are removed from the hoarder. If the problematic clutter is removed,
the severe distress caused by the perception of such a majorly traumatic event will likely result in
rumination that causes the hoarder’s symptoms to merely increase in severity. This would
42
Here, I want to be clear that this does not apply solely to human flourishing, because although I do not want to go
into the discussion of animal rights, I would like to leave the possibility open. Even if we do not allow the same
‘right to life’ for animals as we do for humans, it still seems that the slow death of an animal as a result of hoarding
is inhumane and unnecessary. Whereas some might argue that raising and killing animals for food (while often
inhumane) bears some semblance of necessity tied to the utility of livestock. It is my opinion that in cases like this,
the animal’s flourishing ought to be prioritized over that of the hoarder’s.
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Treating Hoarding Disorder

  • 1. Treating Hoarding Disorder Egersdorf 2016 1 Treating Hoarding Disorder: Should Hoarders Lose Their Homes? Nicholas Egersdorf1 “Multiple sources describe the feelings of hoarders, to whom the discarding of unnecessary items is equivalent to a part of oneself dying or abandoning a loved one” (Ligatti, 2012). 1 Undergraduate, Macalester College, Saint Paul, Minnesota. 2016.
  • 2. Treating Hoarding Disorder Egersdorf 2016 2 Abstract Hoarding Disorder (HD) is a set of behaviors tied to maladaptive neurological and cognitive processes that typically result in accumulations of clutter that are problematic to the self and others. With more than 12 million Americans exhibiting HD symptoms, prevalence is strikingly disproportionate to the level of cultural awareness. The purpose of this project was to provide an unbiased account of the current scientific and legal literature surrounding hoarding as a disorder and as a disability. The second part of the project provides a thorough philosophical argument that HD is a disability that warrants reasonable accommodation, and then considers the nature of reasonable accommodation for hoarders. Ultimately, I came to the conclusion that HD warrants reasonable accommodation insofar as it promotes healing on an individual and societal level. In general, hoarders should not have to lose their houses, however when symptoms are persistently problematic, commitment to a facility is the best possible option.
  • 3. Treating Hoarding Disorder Egersdorf 2016 3 Contents Introduction 4 Part 1: Hoarding Disorder Overview 6 Symptomology 6 Distinguishing features 9 HD versus OCD 10 Prevalence: Hoarding Epidemiology 13 Development and Course 13 Gender 14 Physiology 16 Treatment 19 Stigma 25 Law and Policy 28 Americans with Disabilities Act 29 Fair Housing Amendments Act 31 Federal Parity Law 34 Recap 36 Part 2: Warranting Reasonable Accommodation 37 P1) Hoarding is a mental disorder 37 P2) HD is a disability 42 P3) HD warrants reasonable accommodation 47 C) Hoarders should not typically lose their homes 64 Personal Accounts and Reflections 68 References 75 Appendix 78
  • 4. Treating Hoarding Disorder Egersdorf 2016 4 Introduction2 Compulsive Hoarding3 is a behavior characterized by severe difficulties discarding clutter and habits of compulsive or excessive acquiring. In general, hoarding is a cluster of behaviors and cognitive processes that produce distorted, diminished, and unsafe living spaces. Although it is not a new set of behaviors4 , in recent years, hoarding has erupted into the mainstream5 and medical spheres of literature. Recently, the 2013 Diagnostic Statistical Manual of Mental Disorders (DSM-5), recognized compulsive hoarding as its own disorder. Clinically significant hoarding disorder (HD) is prevalent in 2-6% of a given population as observed in communities in the United States and Europe6 (American Psychiatric Association, 2013). That is, the lives of approximately 14 million Americans, plus those of neighbors, family members, and pets are affected daily by the devastation of hoarding. Those who suffer from HD are prone to eviction, social isolation, and lawful seizure of their property. Due to the debilitating nature of HD, special consideration must be given to the current legal policies that harm hoarders without acknowledging the need for healing, or that HD is a disability. 2 For a pictorial summary of this article, see generally: Figures 1-4 of the Appendix on page 78. 3 Not including animal hoarding which has symptomology as well as legal implications that extend beyond the scope of this project. For an overview of animal hoarding and a legislative discussion, see Megan L. Renwick, Animal Hoarding: A Legislative Solution, 47 University of Louisville Law Review. 585 (2009). 4 Reference to excessive accumulation or hoarding of items is noted in early texts from Dante’s Inferno to works by Charles Dickens, Honoré de Balzac, and Nikolai Gogol (Frost & Steketee, 2010). For a detailed anthropological account of hoarding, refer to Susan Lepselter, The Disorder of Things: Hoarding Narratives in Popular Media. The author describes the condition’s narrative in America as “the discourse of addiction and its management bleed[ing] into a story of phantasmagoric consumption in neoliberal capitalism, offering a nightmare image of normative consumption and a grotesque shadow of ordinary, unmarked commodity fetishism” (Lepselter, 2011). 5 Mainstream articles come from a wide array of perspectives, including articles that range from land-lord forums (Hoarder tenants: Risks, prevention and avoiding fair housing trip-ups, Davis. 2014), news articles (Texas officials unclear on methods of enforcing new hoarding law, Fraser. 2014), to health columns in national media (Hoarding is a serious disorder - and it's only getting worse in the U.S, Solovich. 2016; Homeless and hoarding, Sottile. 2015) 6 Though prevalence studies and most research has been conducted in western industrialized and urban areas, the evidence available from non-western and developing nations suggests that hoarding is a “universal phenomenon with consistent clinical features.” (APA, 2013).
  • 5. Treating Hoarding Disorder Egersdorf 2016 5 Part 1 of this article will be a discussion of hoarding as a disorder, and as a disability defined by the Americans with Disabilities Act (ADA, 2009). It will examine the behavioral, neurological, and anthropological features of HD, and discuss the potential role of the ADA, the Fair Housing Amendments Act, and the Mental Health Parity Act in providing accommodations for hoarders. Part 2 will be a discussion of policy, as well as a philosophical consideration of disorders versus disabilities and of rehabilitation versus punishment. Ultimately, I conclude that there is sufficient evidence to support a policy plan that provides accommodations for hoarders who are facing eviction or other public action in regards to their hoard. These accommodations would most likely be a time extension hinging on the condition that the individual receives treatment and demonstrates a remission of hoarding symptoms. Finally, there is evidence that under the federal parity law, this treatment ought to be covered by health insurance. To begin, I will discuss what is meant when discussing hoarding as a disorder. That is, what makes hoarding a mental disorder, and how it is unique from other disorders.
  • 6. Treating Hoarding Disorder Egersdorf 2016 6 Part 1: Hoarding Disorder Overview Hoarding Disorder is classified in the DSM-5 by six Diagnostic Criteria (A-F) which I will describe in turn: Symptomology (Criteria A-D): (A.) “persistent difficulty discarding or parting with possessions, regardless of their actual value”7 (American Psychiatric Association, 2013). One point of contention with this definition is the meaning of “actual value”; this term can be confusing because these possessions have “actual” value as perceived by the hoarder. Thus ‘actual value’ as it is used in the DSM-5 is measured in terms of the objects’ outwardly perceived utility.8 This distinction is important because the objects do serve a purpose to the hoarder – that is, they serve as an emotional crutch. Thus, it is important to note that simply removing the hoard (cleaning-up) is not a cure for hoarding, but instead can be very traumatizing (Frost & Steketee, 2010). The term “persistent” is also important, because it distinguishes HD from other cases where the accumulation is temporary (American Psychiatric Association, 2013). Every hoarder has a severe difficulty parting with objects, but their motives may be very different. Generally, it is the objects’ perceived value, but many may “feel responsible for the fate of their possessions” or feel very strongly about not being wasteful. 7 While this is the entirety of the first diagnostic criteria, it is discussed in more depth in the Diagnostic Features section of “Hoarding Disorder” in the DSM-5 (APA, 2013). 8 ‘Actual value’ is actually a difficult concept for to establish; for this purpose, outwardly perceived utility refers to an objective-as-possible measure of monetary and sentimental value in terms of usefulness. For example, a photograph or letter may have low monetary value but it is generally considered a useful object of sentimental value. In comparison, a thrift-store buy at the bottom of a pile may be outwardly perceived as having both low monetary value and low usefulness as a sentimental object. It is apparent however, that even non-hoarders would have difficulties making decisions about the actual value of an object, because sentimental value is so subjective. Here, I acknowledge the insight of Professor Joy Laine.
  • 7. Treating Hoarding Disorder Egersdorf 2016 7 (B.) Hoarding behavior is the result of a compulsion to save items as well as distress associated with discarding them (APA, 2013). The term compulsion is important because the act of accumulating is intentional; passive accumulation may indicate the prevalence of a different disorder. That is, similar to other conditions involving compulsions such as OCD and addiction, HD patients – if they have insight into the destructive effects of their behavior – will want to discard items, but will feel compelled to do otherwise. This compulsory aspect of the disorder makes it both addictive9 and very difficult for hoarders to seek the treatment they might need. (C.) HD results in the accumulation of clutter that “substantially compromises [active living spaces’] intended use” (APA, 2013) According to the DSM-5, clutter is defined as “a large group of usually unrelated or marginally related objects piled together in a disorganized fashion in spaces designed for other purposes (e.g. tabletops, floor, hallway)” (Ibid.). For example, the clutter may impede use of the kitchen, furniture such as the bed, and even the toilet. This diminished utility of the active living spaces can lead to very unhealthy, unsanitary, and outwardly disturbing conditions. Thus, HD is hazardous to the individual’s physical health despite its classification as a mental disorder.10 This is the primary difference between hoarding and some very vast collections: a hoard is disorganized, and debilitating, “normative collecting does not produce the clutter, distress, or impairment” (Ibid.).11 9 For a diagram of the addictive cycle of hoarding, see Fig. 3 of the appendix on page 78. 10 Like many other mental disorders such as depression, schizophrenia, eating disorders, and drug and alcohol addiction – HD has very physical impacts on the affected individual. The dichotomy of mental versus physical is complicated because indeed, all mental diseases are physical at their core. I make this point because it is important to note that HD symptoms have negative impacts on the hoarder’s physical world that cause impairments in major life functions. 11 However, this does not mean that a neat hoarder cannot be diagnosed. If a person’s hoarding tendencies have never impinged on the normal function of their active living spaces, then they are either 1) a hoarder who’s symptoms are being managed by family or friends, or 2) not a hoarder who may seem to have too much stuff. The difference is not overly difficult to parse out.
  • 8. Treating Hoarding Disorder Egersdorf 2016 8 (D.) The symptoms of HD must result in “clinically significant distress or impairment in social, occupational, or other important areas of functioning (including maintaining a safe environment for self and others)” (APA, 2013). Some individuals may not believe they are impaired, but it will be apparent to co-workers, friends, and family. Also, hoarders will always exhibit distress when third parties attempt to discard the possessions. In addition to the above criteria, hoarders will also display some degree of ambivalence, or “indecisiveness, procrastination, avoidance, difficulty planning and organizing tasks, and distractibility” – especially when in regards to their hoarding behaviors (Ibid.). Ambivalence is a prominent trait of HD and is often observed in the immediate relatives of hoarders. Therefore, by “hoarding behaviors,” it is meant the physical act of collecting and accumulating, but also the cognitive symptoms, the severe distress associated with threats to possessions, the indecisiveness, attention deficit, delusional thoughts and beliefs, and so on. Similarly, “hoarding symptoms” refers to the physical mass of clutter as well as the distress and impairment that arises from the hoarder’s ambivalent cognitive state. Furthermore, HD is usually accompanied with excessive acquiring. This combination is what leads to dangerous accumulations of objects. “Approximately 80%-90% of individuals with hoarding disorder display excessive acquisition” (APA, 2013). Excessive acquisition, or acquisition-related impulse control problems, include three subtypes: compulsive buying, scavenging (acquiring free things), and kleptomania. Hoarders are more likely to exhibit one type of excessive acquisition versus multiple ones (Frost, Steketee, & Tolin, 2010, p. 880). These acquisitions include unnecessary, excessive purchases, multiple copies of a possession, perceived ‘bargains’ such as garage sale and thrift-store finds, free or stolen items, and generally, items that there may not be space for in the hoarder’s space. Anything can be
  • 9. Treating Hoarding Disorder Egersdorf 2016 9 accumulated but the most common items are books, paperwork, print material of any kind, and clothing (Ibid.). Hoarding often involves collecting objects that may lack an outwardly perceived value, but some items may actually be very valuable (from an outsider’s view) as well. Items of varying value often comingle in the clutter, demonstrating the hoarders distorted perception and assignment of value as well as diminished organizational skills. Excessive acquiring is also characterized by distress associated with being prevented from acquiring items (American Psychiatric Association, 2013). The above criteria comprise the symptomology of HD. According to the DSM-5, hoarders can have varying degrees of insight, ranging from good insight, where the individual recognizes their problematic situation to no insight, where the individual has very delusional beliefs about the importance and non-problematic nature of their behavior. Additionally, HD may be diagnosed in the absence of clutter if it is the effect of third party intervention such as that of a public health department or family member. This is important because a person can still be a hoarder in the absence of an accumulation of clutter – the hoard is not the cause of the disorder, but rather the effect. Distinguishing Criteria (E-F): The following criteria and statistics are important for distinguishing HD from other disorders that may not need treatment or would respond to other treatment plans that haven’t shown clinically significant results in HD patients: (E.-F.) Hoarding behaviors are often “attributable to another medical condition.” (APA, 2013). These medical conditions include major brain damage, neurodevelopmental and cognitive disorders, major depressive episodes, and Obsessive Compulsive Disorder. Hoarding
  • 10. Treating Hoarding Disorder Egersdorf 2016 10 behaviors (specifically, accumulating clutter) that are attributed to other medical conditions are not diagnosed as HD. Typically, in these situations the hoarding behaviors are side-effects of a different condition than the difficulty and distress associated with discarding personal possessions. For example, an individual with OCD might have an aversion to touching trash that results in an accumulation of clutter that is actually very distressing to the individual. Often, the removal of accumulated clutter is welcome in these situations, as opposed to cases of HD, where removal of the hoard is very disturbing to the patient and may even intensify symptoms. Non-HD related hording behaviors often result in more unusual accumulations, such as that of trash, human excrement, food, or obsessive note-taking and documentation (APA, 2013). On the other hand, persons with HD tend to accumulate materials that have household uses, such as books, purchases, second-hand items, and objects that may be associated with a personal memory, feeling, or relationship. Furthermore, HD is considered to be a chronic illness so cyclic patterns of hoarding behavior may be evidence that another disorder is prevalent. HD versus OCD: The following section will be a discussion of Hoarding Disorder compared to Obsessive Compulsive Disorder (OCD). This is a primary distinction when considering diagnosis of HD, because hoarding was classified as a subtype or symptom of OCD up until the release of the DSM-5 in 2013. There is sufficient evidence that patients with hoarding symptoms require treatments that are focused on mitigating hoarding behaviors in order to address other underlying disorders.12 12 Treatment of HD, especially in contrast to that of OCD, will be discussed in more detail in a later section. The purpose of this section is provide an in-depth analysis of the factors that distinguish HD from OCD.
  • 11. Treating Hoarding Disorder Egersdorf 2016 11 In cases of HD, 75% “have a comorbid mood or anxiety disorder” (APA2013; Fullana, 2013). For example, about 50% of hoarders also exhibit major depressive disorder (MDD), and 18% meet diagnostic criteria for OCD (Frost, Steketee, & Tolin, 2010, p. 880). Hoarders are more likely to have MDD than OCD patients. Other common comorbid disorders are social phobia (23.5%), generalized anxiety disorder, or GAD (24.4%), and the Inattentive subtype of ADHD (observed in 28% of HD patients versus 3.2% of OCD patients). Hoarders did not differ from OCD patients in terms of anxiety disorders except for that of panic disorder; it appears hoarders are relatively less prone to panicking. HD patients were also more likely to have experienced traumatic events and/or traumatic childhoods, although no difference was observed in terms of PTSD comorbidity (Ibid.). The study rated hoarders against OCD patients on the Saving Inventory-Revised (SI-R) test13 and found that HD patients score significantly higher than OCD patients (Ibid.). These results demonstrate the unique mental impairments associated with HD. It is important to note comorbidities because hoarders are not likely to self-report their hoarding symptoms, and increased cognizance of these associations can lead to inclusion of HD consideration in clinical interviews. This consideration would most likely yield diagnoses that help mitigate hazardous living conditions that might be compounding other symptoms. It is important to note the difference between people with HD, OCD, or both for diagnostic reasons and to maximize the efficacy of treatment plans. For example, an analysis of 21 studies showed a significant correlation between the presence of hoarding behaviors and a poor response to regular OCD treatment methods (Bloch, M. H., et al., 2014, p. 1028). 13 The SI – R test is a twenty-three point questionnaire asking patients to rate themselves in each question from 0-4. The questions rate individuals on clutter, difficulty discarding, and excessive acquisition (Muroff, Underwood & Steketee, 2014). The cutoff level for the total score, that is, the lowest score that indicates HD, is 41. The average score of individuals with HD is 62.0; for those without HD, 23.7 (ibid.).
  • 12. Treating Hoarding Disorder Egersdorf 2016 12 Compared to patients with OCD alone, OCD patients with hoarding behaviors are 50% more likely to respond poorly to OCD treatments across all modalities (behavioral therapy, pharmacotherapy, and combination) (Ibid.). This means that a diagnosis of OCD in a case where hoarding behaviors are also present, is essentially a misdiagnosis. It suggests that HD must be treated separate from OCD, yet simultaneously: comorbid conditions (especially HD) can obstruct both the mental and physical health standards that are necessary for effectively treating the other condition. That is, a hoarder needs a treatment plan to address hoarding, an OCD patient needs care to address OCD, and an OCD patient who hoards needs a treatment plan that addresses OCD and HD. Therefore, hoarding behaviors must be identified if the patient wishes to see healing.14 14 These comments are partially speculative, however, similar attitudes about comorbid conditions are widely held. For example, in cases where obesity is comorbid with depression, it is typically thought that diet and exercise is effective as a treatment for obesity only insofar as therapy and/or medication addresses the depression simultaneously. Conversely, treatment plans that address the depression can be obstructed by mental and physical health implications of obesity. Furthermore, it is very common to see problematic mental disorders that are comorbid with substance abuse problems. The mental instability obstruct substance abuse treatment methods, and the substance abuse obstructs mental health efforts. Thus, in these cases, it is necessary to address the mental disorder and the substance abuse simultaneously. Finally, given the chronic, addictive, and problematic (physical and mental) nature of hoarding, it is apparent that HD will obstruct most efforts to treat comorbid disorders.
  • 13. Treating Hoarding Disorder Egersdorf 2016 13 Prevalence: Hoarding Epidemiology Development and Course (Age): “The severity of hoarding increases with each decade of life” (American Psychiatric Association, 2013). Thus severe hoarding symptoms are usually observed in individuals in their fifties. Furthermore, there is evidence that pathological hoarding can be distinguished in children (Ibid.). This means that, although outward symptoms of hoarding may not be present at a young age, the underlying cognitive behaviors of hoarding may already be developing. This might make intuitive sense, because the cognitive disorders that actually cause hoarding symptoms seem to affect individuals largely on a subconscious level. And, the adaptive unconscious begins developing and formulating constructs earlier in childhood than the conscious self (Wilson, T., 2002, p. 49).15 Typically, hoarding symptoms begin to emerge in the teens and begin being problematic in the twenties (American Psychiatric Association, 2013). Hoarding symptoms may be suppressed during adolescence, but as the individual gains autonomy, the symptoms become increasingly subversive. Clinically significant impairment usually emerges in the thirties and continues to worsen. Therefore HD can be considered a chronic illness. Hoarding symptoms are observed three times more frequently in patients aged 55-94 years old than in adults aged 24-54 years old. This is likely due to the low occurrence of self-reporting among hoarders: symptoms are usually not identified until the living conditions become very hazardous or outwardly disturbing. It also highlights the fact that most people do not have the time, independence, or financial means to become a severe hoarder until later in life. Increased awareness of HD 15 The adaptive unconscious (AU) refers to powerful subconscious behavior-driving brain processes. Wilson explains how the AU can learn and process information that the consciousness may have missed, how it can develop goals and rigid schemas, and how it can have a strong deterministic role in producing behavior that may often supersede the will of the conscious mind (Wilson, 2002).
  • 14. Treating Hoarding Disorder Egersdorf 2016 14 however, might encourage people to address their hoarding behaviors before the symptoms become severe. Furthermore, a sample of 217 people meeting HD diagnostic criteria had a mean age of 52-53 years old with a standard deviation of 10.3 years (Frost, Steketee, & Tolin, 2010, p. 879). This means that with 99% certainty (P-value .001), 50% of HD patients are between the ages 42 and 63.16 This is unique from OCD which shows a mean age of about 35. Hoarders usually report traumatic experiences that may have onset or exacerbated the hoarding symptoms. This means that the development and course of HD may depend to an extent on the individual’s experiences and environment. This would make sense, because many mental disorders such as schizophrenia and bipolar disorder tend to be triggered by major stressors. On a similar note, hoarders tend to be of average income, with 50% of people meeting HD criteria earning between $10,000 and $63,000 per year (Ibid.). This might suggest that severe poverty and affluence both have features that limit the expression of hoarding symptoms.17 However, in general, psychiatric disabilities typically lead to very low income and worst-case housing needs, and hoarders are often prone to homelessness due to evictions and because HD symptoms violate quality codes of “last-chance” subsidized housing options (Ligatti, 2012; Cobb, et al., 2007). Gender: Some epidemiological studies find hoarding to be more prevalent in males, however, clinical samples are predominantly female (American Psychiatric Association, 2013). This 16 This confidence interval was presented in the Frost, Steketee, & Tolin (2010) study. 17 Someone who is very poor might simply not have the means to accumulate a hoard, and hoarding behaviors in homeless individuals would likely be very difficult to identify and often go unreported. On the other hand, hoarders with sufficient means will be able to afford increased storage space such as large estates, or rented storage garages, and might also be more likely to have stable social support such as a spouse or a housekeeper. Still, both homeless and rich persons can be hoarders, so these are merely modulating factors.
  • 15. Treating Hoarding Disorder Egersdorf 2016 15 contradiction suggests one of two options: either a) females are more likely to report their hoarding behaviors due to gender-based normative attitudes,18 or b) females tend to exhibit more severe hoarding symptoms that lead to increased reporting rates. The study by Frost et al. finds 79% of individuals meeting HD criteria to be female. This is in comparison to OCD patients being 47% female (2010, p.879). The study found that women were more likely to meet the criteria for compulsive buying (55.3% prevalence compared to 27% in males) (Frost, Steketee, & Tolin, 2010, p. 880). This might be due to social norms and gender- based stigmas about shopping for leisure. Because compulsive buying can lead to very rapid accumulation, the discrepancies noted in the DSM-5 (that HD is reported in females more often than males, but not necessarily more prevcalent in females) could be due to gender-based norms about shopping, an accessible method of excessive acquisition. Finally, the proportion of men with both HD and OCD was greater than that of men with HD alone (Ibid.). This might be evidence that men are more likely to be treated as OCD patients than as hoarders, however, there was still fewer men with both disorders than there was women. This evidence may reflect the fact that initially, more female subjects were included in the study than males, but regardless, it appears that hoarding is more prevalent in females than males. That is, evidence suggests females are more prone to being identified as compulsive hoarders than males.19 18 This might be a possibility because the studies looked at data gathered from pre-existing clinical reports. 19 Note that the difference between “more prevalent” and “more prone to being identified” is important. Gender- based stereotypes may actually play a large role here; for women typically feel less stigma about seeking help than males.
  • 16. Treating Hoarding Disorder Egersdorf 2016 16 Physiology20 : A few studies have examined the neural underpinnings of the cognitive impairments that contribute to HD symptoms. Positron emission tomography (PET) demonstrated an association between the presence of hoarding symptoms and diminished resting-state glucose metabolism in the dorsal anterior cingulate cortex (dACC) (Saxena, et al., 2004). The dACC is thought to be involved in reward- based decision-making (Williams, et al., 2004), monitoring conflicting cognitive responses (Botvinick, et al., 1999), and predicting the difficulty of a task (Brown and Braver, 2005). Additionally, one study’s results show that the dACC is involved in metering response time in accordance with the difficulty of a given cognitive demand. That is, in addition to predicting the cognitive demand of a task, the dACC promotes efficiency and accuracy by either hastening or prolonging response times accordingly. Therefore, decreased activity of the dACC in hoarders may contribute to their prolonged difficulty in making decisions about possessions. It may also in part explain the distress associated with discarding possessions, because the dACC is not adequately creating heuristics for decisions about discarding, and possibly, misinterpreting these tasks as cognitively demanding, or very important decisions. Finally, decreased activity of the dACC might also contribute to the hoarder’s difficulty prioritizing conflicting responses. For example, the hoarder might recognize that they have to discard items, but they still feel incapacitated; their sluggish dACC might be the partial cause of this cognitive block. A functional magnetic resonance imaging (fMRI) study shows that HD symptoms seem to be associated with increased activity in the ventromedial prefrontal cortex (vmPFC) when subjects are asked to imagine discarding an item (An, et al., 2009). That is, hoarders’ brains react 20 For visual reference to the particular brain-regions described in this section, see generally: Fig. 2 of the appendix on page 78.
  • 17. Treating Hoarding Disorder Egersdorf 2016 17 to the abstract thought of discarding an item much more strongly than the brains of healthy control (HC) subjects. The vmPFC plays a role in the emotional aspects of decision-making (Damasio, 1994). Furthermore, studies using gambling tests to simulate emotionally significant decisions (or, risk-sensitive decision-making) show that the vmPFC is involved in inhibiting risky decisions (Studer, et al., 2015). Therefore, increased vmPFC activity may explain the strong emotional response to discarding possessions observed in hoarders. Furthermore, it appears that the hyperactive vmPFC may also be a factor contributing to the hoarder’s difficulty making those decisions because the vmPFC has mistakenly identified the task as very risky behavior. Similarly, when they are making real-time decisions about actual possessions, hoarders have been shown to exhibit greater activity in the left lateral orbitofrontal lobe (LOFC) than healthy controls (Tolin, et al., 2009). The LOFC has been tied to post-facto regret, that is, patients with damage to the LOFC make better choices in gambling tests than patients with damage to the vmPFC, but they report significantly less regret after a wrong move than do vmPFC patients and healthy controls (Levens, et al., 2014). This suggests that the LOFC is involved in emotional reactions to choices, which can contribute to future behavioral change. For example, if one feels very poorly about a particular choice, they may be less likely to make that choice again, or they may avoid that decision making situation entirely next time. Therefore, hyperactivity of the LOFC may play an important role in hoarding symptoms because it leads hoarders to avoid confronting their accumulations of clutter. That is, as a result of abnormally high levels of regret, hoarders avoid future situations where they will have to make very emotionally stressful decisions about their possessions. This emotional block, then, might
  • 18. Treating Hoarding Disorder Egersdorf 2016 18 contribute to the increasing severity of a HD symptoms, as well as the hoarder’s level of denial and justifications for the problems that arise from those conditions. Additionally, further fMRI study shows that compared to patients with OCD and healthy controls (HC’s), patients with HD exhibit lower activity in the ACC and insula (including vmPFC and LOFC) when making decisions about items that do not belong to them (Tolin, et al., 2012). Also in accordance, hoarders show greater activity in these regions compared to the other two groups when decisions about personal belongings are involved (Ibid.). Finally, the degree of abnormal neural activity in HD patients correlates significantly with the severity of their hoarding symptoms (Ibid.). These results strongly suggest that abnormal functioning in the ACC and insula of HD patients contributes to difficulties in identifying the “actual” value of items, in producing appropriate emotional responses to them, and in regulating affect when making decisions about them. A study comparing neural activity in HD patients, OCD patients, and HC’s observed a relative hypoactivity (decreased activity) of emotional response to hoarding-unrelated decisions in hoarders (Tolin, Witt, & Stevens, 2014). That is, in response to decision-based failures, the LOFC in hoarders was significantly less active because the task did not concern the hoarders’ personal belongings. So, while hyperactivity in the LOFC produces abnormally high post-facto emotional responsivity (regret) in regards to decisions about personal possessions, hypoactivity in the LOFC of hoarders produces abnormally low amounts of regret in regards to decisions that do not concern personal possessions. As a final note, a recent study has confirmed that rumination is a significant predictor of HD symptom severity (Portero, et al., 2015). Rumination, defined as “repetitive negative cognitions of upsetting symptoms in response to distress,” was measured in a large sample (N =
  • 19. Treating Hoarding Disorder Egersdorf 2016 19 381), and controlled against the general level of depression overall. This observation makes intuitive sense because hoarders display increased emotional stress associated with both imaginary discarding and actual situations of discarding personal possessions. Hence, hoarders experience emotional trauma during the process of loss, and they experience traumatic emotions of guilt, regret, and remorse in immediate response to making the decision (this typically results in increased hoarding severity); then, they experience prolonged emotional angst that enforces their desire to avoid future situations that require decisions about discarding (Ibid.). This combination of emotional responses seems to be in conflict because worsening symptoms make it more difficult for hoarders to avoid future problems that generate loss. Therefore, rumination is a major contributing factor to the addictive nature of HD that makes the condition so debilitating. These studies support the DSM-5’s classification of HD as a unique disorder. HD symptoms appear to be in part dependent on underlying neurological abnormalities that are distinct from those exhibited in HC’s and patients with OCD. Treatment: Not surprisingly, HD patients respond to OCD treatment methods poorly (Bloch, et al., 2014). A study examining the efficacy of a 26-session individual cognitive behavioral therapy (CBT) specialized for hoarders found that the treatment significantly reduced HD symptoms (Steketee, et al., 2010). By ‘specialized for hoarders’, it is meant that the CBT sessions focus on addressing and correcting the maladaptive cognitive and emotional processes that results in hoarding behavior. For example, CBT sessions typically include a) efforts to motivate patients to change and pursue treatment, b) exercises that develop discarding abilities and resistance to urges for acquiring, c) cognitive restructuring that challenges decision-making, maladaptive
  • 20. Treating Hoarding Disorder Egersdorf 2016 20 beliefs, and thought patterns, and d) training in organizational and decluttering strategies (Tolin, et al., 2015). A follow-up study reports that the significant improvements observed at post-treatment were generally well-sustained after twelve months (Muroff, et al., 2014). Clinical global impression-improvement (CGI-I) ratings showed 79% of subjects to be ‘much improved’ including 62% being ‘very much improved’ at follow-up. The CGI-I is a general 7-point rating scale that can be applied to clinical judgement as well as personal judgement, and assesses overall improvement from baseline conditions to current conditions (both cognitive and behavioral) (Busner &Targum). According to the study, the most commonly observed response to the CBT treatment is characterized by an initial improvement followed by slow but steady improvements across time (Muroff, et al., 2014). The study also found that baseline HD severity levels, gender, and levels of perfectionism and social anxiety might contribute to decreased efficacy of the CBT treatment (Ibid.). Not surprisingly, subjects with worse initial symptoms have a harder time adapting. This might suggest that the necessary duration of treatment ought to be determined, at least in part, based on the severity of pre-treatment HD symptoms. Finally, the results seem to suggest that the male gender is associated with decreased improvements (Ibid.). Again, this might suggest that gender ought to be considered when prescribing an effective treatment. These results show that individual CBT is a plausible, durable treatment for hoarding, however, it does not reach the degree of efficacy observed in comparable treatments for OCD and anxiety disorders (Ibid.). Therefore, more research is needed to develop strategies that address perfectionism and anxiety, gender differences, comorbid conditions such as depression and OCD, as well as the older mean
  • 21. Treating Hoarding Disorder Egersdorf 2016 21 age of hoarders, which contributes to deeply engrained cognitive schematics as well as generally degraded physical health. A meta-analysis of reported CBT efforts for hoarders conducted by the same group of researchers comes to similar conclusions. This study reports that HD severity consistently decreases across studies with a large effect size (Tolin, et al., 2015). Large effect size refers to a statistically significant difference between means, that is, the study showed a significant difference between the average symptom severity before and after. The study observes reliable improvement in discarding ability, and in regulating excessive acquiring, however, much less improvement was observed in terms of functional impairments such as indecisiveness, anxiety, and perfectionism (Ibid.). This evidence suggests that while CBT may promise improvement in terms of HD symptoms, it does not functionally cure HD. This also supports the idea that HD is best treated across multiple modalities – CBT might be able to address behavioral problems, but overall treatment efficacy might be improved if medication were able to address underlying neurological and cognitive problems. According to the same study, the group that yielded the strongest results from CBT were younger females, supporting past observations that male patients and older patients tend to respond worse to CBT (Ibid.). Additionally, the level of improvement was correlated to the number of CBT sessions and home visits conducted (Ibid.). Due to the addictive nature of HD, hoarders are prone to relapse (Solovich, 2016). Therefore, it would make sense that sustained monitoring and social support/reinforcement is conducive to better treatment results overall. The role of family and/or community in non-invasive monitoring of the hoarder then, is important to their success (Kress, 2016).
  • 22. Treating Hoarding Disorder Egersdorf 2016 22 While the improvements observed in the meta-analysis study were significant (that is, the improvements made in symptom severity were not attributable to chance), the actual change was generally not enough (Tolin, et al., 2015). For example, the post-treatment scores placed most patients, albeit quite improved, closer on the range to hoarding behavior versus normal behavior (Ibid.). Again, this suggests that CBT as a treatment for hoarding is currently not sufficient for curing the disorder. CBT strategies will need to be improved and other treatment methods such as pharmaceuticals will need to be developed for curing HD. An important result of this study on CBT is the observation that neither a) the presence of professional therapists versus peer group-leaders, nor b) individual versus group sessions, nor c) pre-treatment levels of depression impacted the overall efficacy of CBT on HD symptoms (Tolin, et al., 2015). Therefore, a relatively cost-effective system of setting up group therapy sessions that help hoarders manage their symptoms might be feasible (Muroff, et al., 2011). Group CBT might also be preferable as it addresses the social impairment/anxiety, withdrawal, and depressive components of most hoarders’ symptoms (Muroff, et al., 2012). Furthermore, group sessions – similar to that of AA meetings – can become self-sustaining by constantly training program-based treatment strategies to new-comers. Also, group sessions offer sustained therapy that may be more conducive to healing, as noted by Tolin et al. 2015 (Muroff, Underwood & Steketee, 2014). Another cost-effective system of treating HD that should be mentioned is the possibility of increasing parental awareness. Based on observations of clinical case studies, an altered CBT approach through family-based treatment may be able ‘nip it in the bud’ (Ale, et al., 2014).21 21 As we have discussed, HD symptoms may not be prevalent in children because their parents are managing their items. However, the study also describes HD in its latent form, which may still be fairly easy to identify. For example, children who are susceptible to becoming hoarders later in life might show strong emotional ties to
  • 23. Treating Hoarding Disorder Egersdorf 2016 23 Parents would have to be trained on how to not give into their child’s hoarding behaviors, but a system of positive and negative reinforcement would be a very cost-effective solution. It is thought that younger people are more receptive to cognitive restructuring, however, the efficacy of family-based treatment on mitigating HD symptoms has not been studied, so the proposal is largely speculative. No formal clinical trials exist for observing the efficacy of pharmaceutical agents on HD (Kress, et al., 2016). However, due to high comorbidity (APA, 2013; Fullana, 2013), pharmacological treatments would likely help mitigate hoarding symptoms, at least in part, by treating other comorbid conditions such as anxiety, ADD/ADHD, depression, and OCD (Ibid.). Furthermore, two possible drugs have been identified in smaller studies. 1) Serotonin and norepinephrine reuptake inhibitor, extended-release venlafaxine (Effexor XR; Saxena, 2011), and 2) selective serotonin reuptake inhibitor (SSRI) paroxetine (Paxil; Saxena, et al., 2007) have both demonstrated efficacy in reducing HD symptoms. Both drugs utilize reuptake inhibition which essentially increases the amount of activity serotonin and norepinephrine have in the brain. One reason these and similar drugs might help hoarders is that serotonin and norepinephrine are both excitatory neurotransmitters, that is, the presence of these chemicals in the brain generally elicit behaviors as opposed to inhibiting them. This may seem counterintuitive, because hoarding behaviors are something we want to suppress. However, similar to how SSRI’s work in depressive patients to help them ‘break the cycle’, reuptake inhibitors may be able to help HD patients get past the cognitive blocks that inhibit their ability to address the problem of hoarding in their lives. In other words, by increasing the likelihood of disorganized collections of “junk” such as scavenged objects. They might show poor organizational skills. They might become very possessive and distraught when the parents attempt to get rid of old or outgrown toys.
  • 24. Treating Hoarding Disorder Egersdorf 2016 24 eliciting behavior, drugs may be able to help hoarders proceed with clean-up efforts more effectively, thus mitigating symptoms while facilitating cognitive restructuring by reinforcing positive behavior. Drawing from the discussion on physiology, another explanation for the efficacy of SSRI’s is the ability of neural stimulation to help regulate abnormal functioning. For example, serotonin is linked to mood alteration, and may help to improve the generally negative emotions hoarders associate with discarding. The drug might also elicit improved emotional sensitivity to non-hoarding based decision in hoarders, which would help to normalize the HD patient’s approach to decision-making and value-assignment in general. Serotonin is also thought to help depression symptoms by altering social behavior, therefore, part of the drug’s efficacy may lie in its ability to mitigate underlying anti-social habits/anxieties that contribute to HD severity. As a final note on treatment, one psychologist has suggested that a weakness of CBT is its failure to address the hoarder’s wounded soul (Winters, 2015). Indeed, hoarders often report stressful or traumatic experiences as suspected triggers of the onset or exacerbation of the disorder (APA, 2013; Landau, et al., 2011). A ‘depth psychological’ approach would examine the root of the behavior: the cause of what made objects become a part of the hoarder’s identity. This alternative therapy strategy ultimately aims to answer the question, ‘what does the soul (or unconscious) want with this clutter?’ (Ibid.). It focuses on the individual as a person and how their stories can shed light on their situation. Depth psychology does not aim to replace CBT, but rather to “illuminate what is missing in clinical research” on HD (Ibid, p. 117). Depth perspectives may help strengthen clinical CBT strategies by helping individuals understand their processes, value-systems, and difficulties with interpersonal relationships that may contribute to their deep cravings for what the objects have come to represent.
  • 25. Treating Hoarding Disorder Egersdorf 2016 25 In conclusion, the most efficacious treatment plan for hoarding is, in theory, a combination of modalities (Kress, et al., 2016). Counselors, psychiatrists, and clinicians should address HD symptoms with personalized therapy plans, and pharmacological treatments should be considered as supplemental, especially in lieu of any comorbid conditions. Family and community should be prepared to help, especially post-treatment in order to maintain improvements and manage urges (Muroff, et al. 2012), but also during treatment, if necessary, in the form of organizational teams and clean-up task-forces (Bratoitis, et al., 2013). Finally, counselors must be prepared to temper their expectations, and be patient. Due to the typically older age of those who report HD symptoms, and the resulting deeply-engrained behaviors and beliefs, HD patients can be particularly difficult to work with (Tolin, Frost, & Steketee, 2012). However, maintaining a supportive relationship that enforces prosocial behavior as well as reduces rumination is crucial to the success of therapeutic efforts (Ibid.). Therefore, it is important for counselors to focus more on their relationship with the hoarder as a person, as opposed to their expectations of clinical results. Stigma: One major problem with HD is that it often goes unreported. Interestingly, individuals with HD symptoms are five times more likely to seek medical attention22 than the general population (Tolin, et al., 2008). The problem is that hoarders usually seek mental health services for comorbid condition with less stigma associated to them, while HD symptoms go unreported or undiagnosed. As mentioned earlier, around 75% of hoarders have one or more comorbid 22 For other, ‘unrelated’ conditions. This might suggest that hoarders typically recognize that they need help – that their livesand living conditions are indeed in disarray. This finding also correlates with the observation that HD symptoms typically lead to diminished physical health.
  • 26. Treating Hoarding Disorder Egersdorf 2016 26 mental problems (APA, 2013; Fullana, et al., 2013). Hoarders usually seek treatment as a last resort due to social pressures from friends, family members, or external threats such as eviction or condemnation (Tolin, et al., 2010). The problem with non-proactive treatment is that the average age of HD patient is much older than in comparable disorders,23 which results in increased difficulty breaking cognitive blocks and successfully treating HD symptoms. The most obvious reason that HD symptoms often go unaddressed is the social abjuration of excessive and compulsive consumption and messiness. Popular media24 has not portrayed hoarding in a favorable light either; portraying HD behavior as a “voyeuristic freakshow” (Ligatti, 2012), and “marked by disgust in contemporary popular culture” (Lepselter, 2011). Another contributing factor to low reporting rates is the hoarder’s own rumination and efforts to avoid confronting their situation. Many hoarders might not even think their behavior is a problem (APA. 2013). The issue of non-reporting is compounded by the fact that males appear to both report HD symptoms less than females, and respond to treatment worse than females (Bloch, et al., 2014). Thus, males with HD symptoms might be at an increased risk of developing severe hoarding tendencies. This discordance may be attributable to gender-related attitudes about seeking and receiving treatment, but at any rate, hoarders should be encouraged to identify and report their hoarding behaviors. The stigma is perpetuated because HD is not necessarily screened for in mental health surveys. Increasing awareness of HD and its diagnostic cues should be the number one priority of medical professionals concerned with treating hoarding. 23 With this statement, I am also saying that HD patients are less likely to report their hoarding symptoms because of the high level of stigma, or shame, associated with hoarding. This is in comparison to that of conditions like OCD or even addiction, where seeking help is generally encouraged in society. 24 Hoarders, A&E; Hoarding: Buried Alive, TLC; Extreme Clutter, OWN; A Life of Grime and Gutted, BBC; hoarders have also been featured on the talk-shows Oprah and Dr. Phil (Lepselter, 2011).
  • 27. Treating Hoarding Disorder Egersdorf 2016 27 For example, although group CBT sessions may be a positive treatment solution, in order to make group CBT sessions effective, there would have to be groups of hoarders that are comfortable opening up about their issues.25 This means breaking down social stigmas and in turn, increasing report/diagnosis rates. Additionally, increasing awareness and cultural understanding of hoarding as a disorder, and encouraging hoarders to seek treatment for their hoarding symptoms (that is, reducing stigma) would pave the way for a system of recognizing hoarding symptoms in children and younger adults. Confronting hoarding behaviors at an early age may be the most effective and efficient way to reduce the prevalence of HD in the United States, but is not possible if social stigma causes parents to be uninformed, or closed off to the possibility despite tell-tale behavioral cues. 25 The fact that group sessions for hoarders are almost non-existent suggests that HD symptoms are actually more heavily stigmatized and undertreated than that of addiction and alcoholism.
  • 28. Treating Hoarding Disorder Egersdorf 2016 28 Law and Policy The following section will discuss three laws that might be important to individuals who are diagnosed with hoarding disorder. Typically, the best way for non-medical professionals – such as family-members, Child Protective Service (CPS) agents, and land-lords – to help a hoarder is to seek legal and medical attention for the individual. Therefore, a professional diagnosis of HD is an important criteria for talking about HD as it is affected by the law. Problematic symptoms including increased fire and accident hazards, diminished air quality that affects physical health, and infestations usually call for outside intervention. Whether this intervention comes from concerned family members or from government/community sanctions, it almost always will involve loss for the hoarder. The most common losses include the loss of a child through CPS, loss of possessions through forced clean-outs, and loss of a home through evictions and condemnations (Sottile, 2015). Due to preexisting cognitive impairments, hoarders are not equipped to deal with these types of loss appropriately, and due to the addictive nature of HD, these types of loss typically lead to more pronounced symptom severity in hoarders. Frost and Steketee describe the problems with this situation in the book Stuff: Complulsive Hoarding and the Meaning of Things. “One of the worst experiences for someone with a hoarding problem occurs when another person or crew arrives to clear out the home, usually at the order of the public health department or a frustrated family member … These scenarios almost always leave the hoarder feeling as if his or her most valued possessions have been taken away, which in fact may be the case. Beyond this, most hoarders have a sense of where things are amid the clutter. When someone else moves or discards even a portion of it, this sense of “order” is destroyed. We know of several cases in which hoarders have committed suicide following a forced cleanout. The time, expense, and trauma of a forced cleanout are not worth the effort if any other alternatives are possible. Although conditions in the home may improve temporarily, the behavior leading to those conditions will not have changed. Moreover, the likelihood of obtaining any future cooperation after such trauma is slim. One Massachusetts town in our survey of health departments conducted a
  • 29. Treating Hoarding Disorder Egersdorf 2016 29 forced cleanout costing $16,000 (most of the town’s health department budget). Just over a year later, the cluttered home was worse than ever.” Because loss-inducing interventions on problematic HD symptoms can be so traumatizing and destructive to treatment efforts, it is important that hoarders are aware of their rights under the law. Americans with Disabilities Act (ADA) of 1990, As Amended: According to the ADA, “physical or mental disabilities in no way diminish a person’s right to fully participate in all aspects of society” (ADA, 2009).26 Furthermore, the act aims to provide law that eliminates discrimination against people with disabilities. Therefore, the status of HD as a disability may be crucial to individuals who are faced with evictions or condemnations because it is possible they are being discriminated against due to the general stigma associated with HD symptoms. This discrimination is a major contributing factor to the overall hinderance of big-picture HD treatment efforts. When hoarding symptoms become an annoyance or a problem for community members and neighbors, they might not be sensitive to the fact that it is very difficult for hoarders to overcome cognitive blocks and pursue treatment. When the actual solution to the problem might be an enforced enrollment in a therapy program, or a visit with a doctor, it is often assumed that the best option is to physically and forcibly remove the undesirable clutter. 26 This is actually a difficult clause to defend because it would seem that someone with a cognitive disability, for example, is actually not able to participate in many aspects of society, such as becoming a mathematics professor. What is important about this statement here, is the dichotomy between disability and society. For some have argued that no-one is disabled, rather society is merely insufficiently equipped to accommodate for some people’s conditions. Thus, I believe the ADA is making a proactive statement about the importance of a society’s commitment to making itself equally accessible. And given a fair, equal opportunity, then we may still allow for the reality of some situations. That a blind person can’t be a bus driver, or a paralyzed person can’t be a construction worker: they ought to have equal access to the opportunities, but they may or may not meet the eligibility requirements.
  • 30. Treating Hoarding Disorder Egersdorf 2016 30 It seems there is a discordance between the perceived and the actual effect of intervention; the task-force may believe they are doing the hoarder a service by cleaning up their mess for them. But on the other hand, the hoarder does not perceive the accumulation as a mess, and their inability to mitigate the circumstances does not lend itself to physical assistance so much as mental assessment. For example, we can imagine a situation where an individual suddenly can’t walk and his dog becomes a noisy disturbance that won’t stop barking because its master isn’t taking it on walks: we wouldn’t forcibly remove the dog, instead we would seek to solve the cause of the problem by helping the owner regain mobility, or by walking the dog for him. The ADA defines a disability as follows: 1. A physical or mental impairment that substantially limits one or more major life activities 2. Major life activities include but are not limited to caring for oneself, seeing, hearing, speaking, learning, working, etc. 3. This definition should be construed in favor of broad coverage of individuals (ADA, 2009) At first glance, it would appear that under this criteria, HD ought to be classified as a disability. For example, the fourth diagnostic criteria of HD is that symptoms result in an impairment in one or more areas of functioning. Also, the inability to maintain safe living conditions is very comparable to the substantial limitation of one’s ability to take care of themselves. Although the discussion of disorder versus disability is much more complex and will be discussed later, for now, I will assume that HD ought to be considered a disability.
  • 31. Treating Hoarding Disorder Egersdorf 2016 31 Fair Housing Amendments Act (FHAA), 1989: “Both housing providers and mental health advocates have struggled with precisely how to satisfactorily balance the housing needs of the mentally ill with the needs of neighbors and landlords.” (Ligatti, 2012) The FHAA refers to disabilities as “handicapping conditions”, however it adopts the same definition used in the ADA (United Spinal Association, 2004). Therefore, individuals protected by the ADA are also protected by the FHAA. The FHAA protects individuals from being discouraged from living in a community or neighborhood based on race, sex, disability, etc. (Ibid). Most importantly, the FHAA prohibits discrimination, defined as the "refusal to make reasonable accommodations in rules, policies, practices, or services, when such accommodations are necessary to afford [handicapped persons an] equal opportunity to use and enjoy a dwelling." (FHAA, 1989). It appears that under this definition, hoarders are protected from losing their homes under the FHAA. It might be argued that the eviction would be a discrimination against the clutter but not against the hoarder, however, the previous discussion of HD shows how hoarders and their objects are inextricably connected. Thus, to remove a person from their house on the basis of excessive clutter as a result of HD behaviors, would be classified as a discrimination on the basis of a disability. Furthermore, provided that HD is a disability, eviction on the basis of HD- contrived clutter would be considered the denial of an equal opportunity to enjoy a dwelling. Or more generally, to say that hoarders are not allowed to live as hoarders, would be to infringe upon several of their capabilities necessary to flourish. According to Martha Nussbaum, rights promote these capabilities; so it seems that legal intervention, while often unavoidable, also typically act as a violation of the hoarder’s human rights.
  • 32. Treating Hoarding Disorder Egersdorf 2016 32 Thus, it seems that the law would have some exceptions be made so that hoarders are allowed to live as hoarders. This should hold, at least to the extent that the hoarder’s stay of eviction is not an unreasonable accommodation. It does not seem unreasonable to for the hoarder to ask for an extension of time that accommodates for enrollment in a treatment program that would be expected to conscientiously mitigate the immediate concerns while helping the hoarder develop skills for managing their disorder. Accommodation as contingent upon the pursuit of treatment is crucial because requests for accommodation must meet the necessity clause which entails “showing that the desired accommodation will affirmatively enhance a disabled plaintiff’s quality of life by ameliorating the effects of the disability.”27 For example, a time extension does not help mitigate the problems at all, but a time extension granted in the interest of promoting efficacious treatment, on the other hand, fulfills the necessity clause. Requests for accommodation, which can be made in writing or orally, are treated on a case-by-case basis, and must also meet the reasonableness clause (Ligatti, 2012). The FHAA does not explicitly define reasonable accommodation, but in the case of Oxford House v. Town of Babylon, the court found that the “accommodation is reasonable if it does not impose a substantial administrative or financial burden on a municipality or create any fundamental change in the neighborhood.” (United Spinal Association, 2004). In the case of renting, the same definition can be applied (Ligatti, 2012); for example, a request for accommodation that requires the provision of a ride service would be considered unreasonable because it imposes the “fundamental change” of bringing transportation to housing. Financial and administrative burdens are also considered on a case-by-case basis. 27 Based on the court-ruling in the case of Bronk vs. Ineichen, 54 F.3d 425, 429 (7th Cir. 1995)
  • 33. Treating Hoarding Disorder Egersdorf 2016 33 Thus, if a hoarder wishes to be protected by the FHAA from eviction, they need to be prepared to mitigate any problems that harm the neighborhood, such as clutter that over-flows past property lines. This is important because unsafe living conditions for children might be considered a harm to the community and thus provide grounds for expediting the drastic measures needed to relieve a potentially dire situation. In other words, the hoarder’s protection under the FHAA should not over-rule a community’s concern for a child’s well-being. Finally, based on this definition, the contingent treatment plan that the hoarder is granted extended time to complete, should not impose a substantial financial or administrative burden. Thankfully, most of the medical expenses might be covered by health insurance, therefore, the only administrative burden on the municipality would be in establishing a system for connecting hoarders with CBT treatment plans. Because group CBT sessions have been observed to help hoarders manage their symptoms, I believe that setting up group programs that serve a number of individuals in the community would not constitute a substantial burden. Prevalence of hoarding is estimated to be between 2-6% depending on the population, so realistically, increased awareness and social appropriation of group therapy sessions could attract a fairly strong support network for hoarders trying to confront their issues. A final consideration on the FHAA, is the question of whether or not it protects against legal seizure of personal property, as would be the case in forced cleanouts. In line with the thinking that the hoard is really a part of the hoarder, there is a strong argument for why the FHAA should protect against forced cleanouts. It would appear that a forced cleanout is the same as an eviction in that it is an action based on the discrimination against HD, and not solely against the negligent living conditions. That being said, if hoarders hope to see some protection
  • 34. Treating Hoarding Disorder Egersdorf 2016 34 from legal seizure of property, they must be prepared to mitigate any ‘harms’ to the community, which may include visible clutter that has accumulated outside of the house. Now let’s turn to the consideration of health-care coverage. Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (federal parity law), 2008: This law mandates that insurance companies treat mental health coverage equal to or better than physical health care. In other words, there should be the same deductibles or copayments applied to either mental or physical treatments. It protects people from limits on number of mental health visits allowed per year, requiring insurance companies to impose limits on the basis of “medical necessity” (American Psychological Association, 2015). The federal parity law does not apply to all health-care plans. The ones it does apply to are a) employer- sponsored programs (for companies with 50 or more employees), b) any plan purchased through an insurance exchange under the Affordable Care Act, c) Children’s Health Insurance Program (CHIP), and d) most Medicaid programs (APA, 2015). Medicare, on the other hand, is one program not affected by the federal parity law (Ibid.). This law does not require insurers to cover mental health benefits, however, if they do, the law requires that these benefits are provided for and covered equally in comparison to physical health-care. Luckily, most large-group plans do provide mental health care coverage and the Affordable Care Act requires that plans on the health insurance exchanges cover mental health services (Ibid.). The federal parity law applies to treatment for all mental health diagnoses (Ibid.). Thus, HD-specialized treatment programs are included.
  • 35. Treating Hoarding Disorder Egersdorf 2016 35 One problem with this law is that it does not require insurers to equally reimburse practitioners. Mental health providers have the right to accept or decline a patient based on insurance. Consequentially, some people who are covered might have a difficult time finding services that are participating in their insurance plan’s network. The federal parity law provides framework that might help hoarders and their communities mitigate some of the problems arising from severe hoarding, but it is not a perfect fix. The most important thing the hoarder can do is to ask and become familiar with the details of their health-insurance plan. For example, a person’s plan may or may not cover out-of-network providers, which would be important to know when seeking mental health providers that accept their insurance.
  • 36. Treating Hoarding Disorder Egersdorf 2016 36 Recapitulation Thus far, I have conducted an in-depth analysis of the characteristics and distinguishing features of hoarding disorder. I heavily considered the treatment options that are currently available to hoarders seeking remission or help managing their symptoms. I found that cost- effective and efficacious treatment plans are within the realm of possibilities and further research – in tandem with dispelling social stigma and raising awareness in general – could promise improved clinical results overall. Then, I considered the laws that might play a part in the process of mitigating problems associated with severe hoarding. Based on these two discussions, I came to the conclusion that HD most likely ought to be classified as a disability that warrants reasonable accommodations in terms of fair housing and health-care coverage of treatment costs. The next section will address the assumptions made, any objections that may arise, and the philosophical discussions that follow.
  • 37. Treating Hoarding Disorder Egersdorf 2016 37 Part 2: Warranting Reasonable Accommodation This section will proceed in the following order: I will state the premise, and then address any philosophical objections surrounding it. PREMISE 1) Hoarding is a mental disorder (HD): Despite concrete scientific evidence, as well as specific legal language, it is important to be mindful of the issues of disorder vs. non-disorder, and mental vs. physical: 1) if hoarding isn’t a disorder, it poses a considerable risk of undue discrimination, and 2) because the distinction between mental and physical may hold some bearing on this discussion. The first, more general objection to premise one above rests on the idea that mental somehow does not equate to physical, or a disorder can only be a physical one and mental ones do not count. The reasoning behind this argument is that mental problems are entirely within the sphere of agent causality, or free-will. In other words, some might argue that a mental problem is a fault that the individual is morally responsible for, whereas a physical ailment, like cancer or blindness, is out of their control – poor them. These objections do not want anything mental to be a disorder, and seem to draw from thoroughly discredited notions of dualism. In reality, mental afflictions are physical afflictions, so the argument is easily dismissed. Furthermore, we can’t just say that a mental disorder precludes physical treatment, medical attention, and/or accommodation. Every mental disorder is a physical disorder – those who object to this statement would probably argue something to the effect of “hoarders are merely weak-willed.” To the contrary though, most hoarders are actually fairly strong-willed. Although
  • 38. Treating Hoarding Disorder Egersdorf 2016 38 HD patients are often very set in their ways, and may seem stubborn, it is because they know that de-accumulation causes the significant distress that they are so firmly committed to avoiding. One might support the claim that mental does not equate to physical by citing low responsivity to pharmaceutical agents and the lack of concrete physiological explanations for the disorder.28 However, according to the DSM-5, “Since a complete description of the underlying pathological processes is not possible for most mental disorders, it is important to emphasize that the current diagnostic criteria are the best available description of how mental disorders are expressed” (APA 2013). Therefore, when considering a disorder, it is important to look at the symptoms. HD, like most mental disorders, has an array of physical manifestations that result in behaviors that are well outside of societal norms. Hoarders show observable cognitive difficulties, they have observable hoards that evoke distress in ‘rational’ subjects, and they experience physical health problems as a result of their hoarding tendencies. Furthermore, a contemporary scientific world view cannot tolerate a separation in kind between the mental and physical. Rather than a world of mental and physical, or abstract and concrete, there is merely a material world governed by natural laws.29 The second argument against hoarding as a disorder arises largely from the axiom, “it’s all in your head.” The argument challenges the legitimacy of psychological causes. Supporters of this reasoning might accept that mental can be physical, however, they believe the psychological causes of hoarding in particular are questionable. They would maintain that the status of a cluster of behaviors as a disorder depends on their arising from legitimate causes. In part, this is correct; 28 Indeed, the earlier discussion of the physiological features and treatment studies (including pharmaceutical considerations) could be sufficient to dismiss this claim. However, for argument’s sake, it appears that mental afflictions typically respond to pharmaceutics in much less linear or predictable fashions than most physical conditions. Also, while medication may be able to help hoarders, it is typically rather ineffective, and the benefits of medication on hoarders might be primarily derived from mitigating contributing symptoms from comorbid conditions that may or may not be “more” physical then HD itself. 29 Here I acknowledge the specific contribution of Professor Joy Laine, Macalester College, 2016.
  • 39. Treating Hoarding Disorder Egersdorf 2016 39 for example, we don’t want to say there’s something wrong with a person if there isn’t.30 Certainly, almost everybody seems to hoard something to some degree. Similarly, many would agree that collecting is a fairly ‘normal’ behavior. Yet, collections show some parallels to the addictive patterns of hoarding. Like most mental disorders, HD is a spectrum disorder. That is, we expect to observe hoarding symptoms over a range of severities, but at some point, the behaviors cross over into the realm of ‘abnormal’ and become a disorder. Still, one could go so far as to argue that HD patients are ‘just being lazy.’31 Statements of this type – just being lazy, messy, resourceful, etc. – seem to suppose that it is normal to want to act in a way that severely degrades living conditions. Whereas in reality, it seems that most people do not merely feel obligated to maintain a minimum standard of living conditions, but that they would want to. Therefore, the hoarder’s desires that conflict with their ability to take care of themselves, ought to be considered abnormal. Laziness seems to imply some level of convenience and normalcy, however, hoarders are rarely convenienced by their behaviors. The ‘just being’ arguments imply that hoarders explicitly want to be hoarders. By nature of their condition, they may want to acquire and hoard objects and avoid changing their behavior, but on a more meta-level, hoarders rarely want to be hoarders. In this sense, hoarders are not free in terms of their condition (Frankfurt, 1982); not like a person who can turn their laziness on and off whenever convenient. Therefore, hoarding is an illegitimate condition originating in poor volition, but rather HD is a set of involuntary afflictions with negative side effects, no different from schizophrenia or cancer. 30 Homicide, for example, is typically considered abnormal and might reflect disordered cognition. However, the act might arise from a relatively ‘normal’ conception of anger. The cause then, not being of a disordered origin, might be considered an illegitimate claim to the behavior’s status of being a disorder. On the other hand, if the cause was a psychopathic lack of empathy and affinity for sadism, then the behavior might be legitimately labeled a disorder. 31 Or they are ‘just being thrifty,’ or they are ‘just being overly cautious,’ overly sentimental, resourceful, messy, bored, lonely, ridiculous, etc. That is, any ‘just being’ type of rationale is applicable here. What is important is the generic statement supposes that normal traits, when taken too far, lead to
  • 40. Treating Hoarding Disorder Egersdorf 2016 40 Also, hoarders might be actively accumulating clutter and taking their hoard quite seriously. These people might not consider themselves very lazy. Often, constantly sifting through the clutter and picking out random ‘treasures’ to fret over makes the hoarder feel very busy, often overwhelmingly so. This fretful agonizing over every item is what causes hoarders’ attempts at clean-outs to be very difficult. It is likely derived from some level of perfectionism, which is a common trait in HD patients that is not typically associated with laziness. Finally, if we did chalk it up to laziness, it seems that such a level of severity – to the point of not being able to take care of one’s self – would lend itself to the suspicion that another disorder such as depression was involved. In other words, even if hoarding is mere laziness, it is an abnormal type of laziness. An abnormality that suggests disordered cognitive processes. Therefore, on the spectrum of clutter accumulation, hoarding behaviors ought to be considered a disorder when they become abnormal, which we can take to mean both inconvenient and detrimental to well-being.32 For example, never exercising might be detrimental to the health but it is tied to a notion of convenience having to do with conflicting desires and a distaste for exercise. On the other hand, if the person became morbidly obese, we might say that it has become both unhealthy and inconvenient, then we might look to other factors that explain the apparent abnormality, such as an eating disorder, hypothyroidism, or depression. To reiterate, it seems to be a slippery-slope to argue that chronic, compulsive hoarding is not a disorder; that is, we can’t say hoarding is not a disorder without also abandoning any 32 I do not wish to argue here that anything that is both inconvenient and detrimental to health (such as homelessness) ought to be considered a disorder. However, it would be a compelling argument: 1) Studies show a high prevalence of mental disorder among homeless populations (Fazel et al.). 2) this notion would strengthen the idea that we ought to factor in possible medical considerations when confronting issues of homelessness, and 3), it would be a more cost-effective option to treat hoarders and allow them to keep their homes than to evict them and put undue burden on social-workers (as cases of hoarding can be very difficult to handle for non-specialists).
  • 41. Treating Hoarding Disorder Egersdorf 2016 41 justification for attempting to correct it or even acknowledging it as abnormal behavior. One might object to this statement by citing criminal activity. For we seek to correct criminal activity but we do not typically dismiss it on the basis of mental disorder.33 However, this counterargument rests on the assumption that there is indeed some vestige of normalcy tied to criminal behavior. So, drawing from the criteria of normalcy described above, it would have to be that criminal behavior is either convenient or conducive to well-being, or both. As before, HD does not fit this criteria, so it remains true that the condition is best regarded as a disorder in the interest of mitigating problems that arise from severe symptoms on a societal level. Thus, it is important to consider: should hoarders be criminalized, or treated?34 I believe HD shouldn’t typically be criminalized. While there are many occasions when HD symptoms violate federal, state, or local laws (Ligatti, 2012),35 hoarding symptoms seem to be both inconvenient and detrimental to the health of the affected individual, while criminal activity seems to be related to some notion of either convenience or well-being. It could be argued that hoarding is chosen as a source of comfort, and thus prosecution pushes hoarders “out of their comfort zone.” However, the physiological features of HD suggest that hoarding as a coping mechanism is relatively involuntary, or subconscious. Furthermore, for a hoarder, “out of the comfort zone” is tantamount to the “increased HD severity zone,” which suggests that hoarding behaviors are not classically ‘comforting.’ Instead, the effect of HD behaviors is quite 33 The best example here is pedophilia, which is in the DSM-5, but rarely is accommodated for in criminal courts. In terms of normalcy, pedophilia is tied to the satisfaction of sexual desires which equates to a pursuit of well-being that is much more apparent than that of hoarders, who typically experience consistent worsening of mental and physical well-being as a result of their condition. 34 It is important to consider: if criminal behaviors are correctable, oughtn’t we as a society to do something? In this sense, it seems reasonable to support rehabilitative over retributive justice. According to Eccher and Mohr in the May 9, 2016 issue of Pioneer Press, “Jails have become ‘de facto warehouses’ for many with mental issues.” The main concern in terms of HD in society is, to what extent and to what end should law-enforcement intervene upon problematic hoarding symptoms? 35 These occasions can lead to evictions, fines, and condemnation.
  • 42. Treating Hoarding Disorder Egersdorf 2016 42 akin to the ‘comfort’ derived from an addict using hard drugs: Both addicts and hoarders typically have mixed emotions about their coping mechanisms as they come to identify feelings of comfort and relief, but also worries about their health associated with the addictive behavior. There is no fine line between disordered and criminal behaviors, on the contrary, they seem to overlap.36 Indeed, the very nature of criminal activity reflects a slightly disordered or distorted view of morality, rights, and dignity. Often however, criminals might sacrifice health in the interest of a wealth that promises comfort and longevity. Hoarders seem to have no such intentions. Again, the difference here is well highlighted by the distinction of first and second order desires provided by Frankfurt. Typically criminalized behaviors seem to be free; the agent wanted to commit a crime for the perceived benefits because they are a criminal, and they wanted to be a criminal because it was a perceivably more accessible profession than other, more legitimate, wealth-building enterprises. On the other hand the hoarder and the addict seem less free about their actions; they may at the surface want to hoard or to use again because they are addicted to that behavior, but they usually loath being addicted as such, that is, they do not want to want to hoard or use. They would feel freer if they didn’t have these urges altogether (Frankfurt, 1982). PREMISE 2) HD is a disability: The discussion of premise two will proceed based on the assumption that we can accept premise one as true; hoarding is a disorder. The first important objection is that many disorders (as per the DSM-5) are not and should not be considered disabilities. For example, Pedophilic Disorder (PD) is classified in the 36 For a visualization of where HD is poised in the spheres of disordered, criminalized, disabling, and normal behaviors, see Fig. 1 of the appendix on page 78.
  • 43. Treating Hoarding Disorder Egersdorf 2016 43 DSM-5 (APA, 2013. Pg. 697), yet pedophilia is treated as a heinous crime by law enforcers. This supports the idea that criminalization acknowledges wrong behaviors as abnormal and may point to the disordered nature of the offender, which is a strong argument for a rehabilitative versus purely punitive justice system. It also supports the idea that the classification of something as a disorder, does not exclude it from being treated as a criminal act. However, criminalizing HD contributes to the problem at large because it discourages self-reporting and preemptive treatment. Therefore, it is important to understand HD as a disability in terms of decriminalizing the behavior so as to promote treatment versus punishment. The main difference between disorders that are disabilities and those that are not, is the involvement and/or directionality of harm. Disorders that fit the criteria for a disability tend to receive more sympathy if the resulting harm is directed at the self rather than at others. For example, PD almost necessarily involves harm to another and is very unlikely to ever be considered a disability. Alcohol Use Disorder (also classified by the DSM-5; APA, 2013. Pg. 490) on the other hand, is more complicated. Alcoholism seems to fit the ADA criteria for disability; affected individuals are limited in several areas of life activity as a direct result of their disorder. Usually, the harm of being a drunk is self-deprecating, and communities often make reasonable accommodations for their disabled alcoholic population. However, when drunk- driving, or domestic/non-domestic abuse is involved, the harm is directed at others. In these cases, no such accommodations are made. Even if the acts are symptoms of alcohol use disorder, they are treated as criminal. Another difference is that criminalized disorders such as Pedophilic disorder typically do not fit the criteria set by the ADA, insofar as they do not substantially limit any major life activity. We could argue that satisfying sexual desires is a major life activity, however I dismiss
  • 44. Treating Hoarding Disorder Egersdorf 2016 44 this as a slippery-slope argument that leads to more negative side-effects than we can assume any legislator would ever find agreeable.37 We could also say that pedophilia limits one’s ability to take care of themselves based on the fact that symptoms of PD are acts or intentions that warrant incarceration. However, this argument hinges on the fact that PD is criminalized. Therefore, unlike with hoarders, there does not seem to be an instance where pedophiles are legitimately disabled by their disorder while still within the confines of the law. These examples translate to HD in the following way: hoarding symptoms typically do not necessarily harm others, though they do necessarily harm the hoarder.38 Therefore, HD typically fits the criteria for a disability while also not threatening any members of the community. That being said, hoarders must recognize that some of their behaviors might indeed harm others, and that in these cases, the outward harm might sacrifice their protections as disabled individuals. For example, hoarders should not expect disability status to take precedent over the well-being of animals or family members whose health is put at risk due to the nature of the hoard. They should also expect to be accountable for conditions that risk the health of neighbors. They must also be cognizant of renter’s rights to avoid major financial harms, and should expect to abide by legally-binding lease agreement contracts. The second argument against HD as a disability, comes from the fact that the disorder is treatable; that is, the disabling aspects of HD are not necessarily permanent. Consider blindness: blind individuals are impaired on a physical level that results in the loss of conscious eyesight, 37 A few of these negative side-effects that come to mind include claiming disability on the basis of sexual frustration, legalizing prostitution, and justifying rape and/or sexual misconduct. Additionally, not all forms of satisfying sexual desires are not sanctioned by the law and therefore fail to meet legitimate criteria for “major life activities. Some of these unqualified modes of life-activity include polygamy, child marriage, prostitution, and nonconsensual sex. 38 With this statement, I mean that the potential harm that HD presents to the community is not necessary diagnostic criteria, whereas the impairments and clinically significant distress that hoarders experience personally are necessary diagnostic criteria.
  • 45. Treating Hoarding Disorder Egersdorf 2016 45 thus limiting several major life activities. However, this impairment, unlike that of HD symptoms, cannot be treated, nor is it clear that it ought to be treated.39 In contrast, it is clear that HD can and ought to be treated. For both cases however, problems that arise from the disability reflect a failure on the behalf of society. For blindness, the problem is a failure to make sightedness a non-factor in enjoying major life activities. For hoarding however, the problem is a failure of society to promote treatment. On the other hand, we want hoarders to associate the problems they face with their own problematic behaviors. We want to encourage hoarders to seek treatment, we don’t want them to blame all their problems on society’s inability to sufficiently accommodate for their perceived needs. So, how do we say that HD is a disability if it is possible to treat, if we want to treat it, and if, once treated, it is no longer disabling? Well, I believe that the presumable ‘possibility of treatment’ actually rests heavily on the supposition of accommodation. In other words, HD must be considered a disability in order to make most successful treatment plans possible. Furthermore, based on the typical low self-reporting rates of hoarders, and the cultural structures that stigmatize and inhibit proactive diagnoses, it appears that hoarding is usually quite disabling by the time circumstances are conducive to effective treatment. Therefore, while the best way to mitigate the disability of being blind is total accommodation, the best way to mitigate the disability of HD is partial accommodation in the interest of making effective treatment possible. However, by this reasoning, hoarders should expect that any claims to 39 For, accounts have been given of the less than optimal feelings toward newfound sightedness in previously blind individuals: moreover, people who are blind, in lieu of systematic and infrastructural accommodations, do not present any burdens on society, nor do they feel persecuted or burdened themselves. In comparison, HD symptoms usually present persistent problems to society, regardless of accommodation, and hoarders are usually burdened as a result of those problems.
  • 46. Treating Hoarding Disorder Egersdorf 2016 46 disability accommodations will hinge on the expectation that the severe HD symptoms are ultimately mitigated by way of accessible treatment. The third objection to HD as a disability is that disabilities might actually be entirely contextual, therefore a specific diagnosis might not necessarily lay claim to a disability. For example, it is possible that an individual be diagnosed with HD, yet due to the constant vigilance and care of loved ones and co-workers, they may not appear to be disabled in the slightest. Why should hoarders in this situation expect any reasonable accommodation? Upon closer examination of this objection, it appears that hoarders in the “taken care of” situation are actually receiving a great deal of accommodation. Therefore, based on this as well as the diagnostic criteria for HD, it seems that to be a hoarder means to require, to some extent, assistance in managing symptoms. Whether this assistance comes from personal support systems, accommodative treatment plans, or both, a hoarder is still a hoarder. And to be diagnosed as a hoarder seems to assert that unmanaged symptoms will ultimately become disabling. In addition, HD symptoms are largely tied to events of social loss/trauma that causes many hoarders to be both alone and antisocial, which are circumstances that typically increase the severity of hoarding symptoms.40 Thus, social influence and the existence of a support system has a huge effect on the severity of HD symptoms. However, the fact that a hoarder’s lack of limitations arises from assistances that they rely upon, and that hoarders typically lack this crucial tool for managing symptoms, only strengthens the notion that an HD diagnosis implicate a disability – that is, a disability that requires assistance. If we assume that an HD 40 Antisocial traits in hoarders worsens symptoms doubly: 1) decreased social consequences of hoarding behaviors and decreased management assistance, and 2) withdrawal from society that strengthens the hoarder’s need to replace lost or missing interpersonal relationships with objects and emotional relationships to those objects.
  • 47. Treating Hoarding Disorder Egersdorf 2016 47 diagnosis does not necessarily translate to a disability, we would also be assuming, for the most part, that an HD diagnosis is not necessarily disabling. This is simply not true. Without help, hoarding symptoms become disabling. Again, for the question of HD as a disability, whether or not the particular case is managed by pre-existing conditions (which is not typical) should be a non-issue. PREMISE 3) HD warrants reasonable accommodation The purpose of this section will be to explain 1) why hoarders have a legitimate claim to reasonable accommodation (RA), 2) to respond to objections to premise three, as well as 3) to clearly define RA in terms of how HD ultimately ought to be handled assuming premises one and two are true – that compulsive hoarding is a disorder and a disability. To begin, the reason hoarders may be seeking accommodation is based on the general notion of justice, which calls for societies to accommodate “as wide as possible a range of human variation” (Wasserman, et al., 2015). For this model of justice, reasonable accommodation includes physical and social changes to the environment (Ibid.). As is the case with hoarding, these changes often “require little more than flexibility and imagination” (Ibid.). Therefore, hoarders might have a legitimate claim that it is reasonable to make societal changes and or exceptions that accommodate for their particular type of human variation (that is, hoarding disorder). Now, the term “accommodate for” can be construed as a general protection or recognition of human rights. According to Martha Nussbaum, human rights are derived from the Socratic concept of Eudaimonia. Essentially, human rights promote human flourishing by making it possible for individuals to possess the capabilities that are necessary for flourishing (Nussbaum,
  • 48. Treating Hoarding Disorder Egersdorf 2016 48 1999). Some of these capabilities include bodily integrity, emotion, and control over one’s material environment (Ibid., pg. 78-80). For hoarders, the accumulation of clutter is a part of their identity that has replaced other incredibly important social and emotional supports. Therefore, it seems fair to say that separating a hoarder from their items is comparable to separating a layperson from their friends and family. The person might argue that they are unable or unwilling to live without these relationships in their life. So, just as denying a person all interpersonal relations might translate to an obstruction of their emotional capabilities, HD patients might argue that disallowing HD behaviors equates to the same violation of human rights. The legitimate claim that hoarders are making then, is that they should be allowed the accommodations that are reasonable for them to flourish in society – within the parameters of life as a hoarder. This claim is based on the observation that separating hoarders from their possessions (the most common result of problematic HD symptoms), can be construed as infringing upon capabilities of bodily integrity, emotions, and control over the material environment. That is, in the absence of accommodation, a hoarder’s bodily integrity is jeopardized in the sense that possessions are an extension of the individual’s physical self; in lieu of social and legal pressures, they do not feel that their bodily boundaries are “treated as sovereign,” and they do not feel protected from assault (Nussbaum, 1999). A hoarder’s emotional capabilities may be infringed in the sense that their attachments to things are under attack; they may feel pressured to conform their emotions of love, longing, and justifiable anger or resentment; and they may feel unduly subjected to “overwhelming fear and anxiety,” as well as trauma (Ibid.). Finally, their control over personal environments might be threatened as they
  • 49. Treating Hoarding Disorder Egersdorf 2016 49 are not able to possess movable goods on an equal basis with others, and they may feel subjected to unwarranted search and seizure (Ibid.).41 Now, given the legitimate claim of hoarders for RA, I will consider the actual limits of which. The proceeding discussion will attempt to answer this question by addressing important concerns. The first concern I’d like to discuss is how HD should be approached as it violates the rights of others. This is different from many disabilities such as blindness, where symptoms do not typically result in a violation of anybody’s rights. Many municipalities impose a duty on their residents to maintain a certain level of waste management on their outdoor property. That is, the ‘normal’ person may be expected to uphold certain “curb-appeal laws”. Furthermore, citizens who fail to comply face seizure of the problematic items, as well as steep fines for the cost of removal. In terms of the relationship between rights and duties, “a duty of A to B implies a right of B against A.” Therefore, if person A has a ‘curb-appeal duty’ to community B, then we would also say that community B has a right to expect person A to uphold their curb-appeal duties. In this sense, a hoarder’s clutter could easily be construed as impinging on the rights of others. However, this is precisely the type of situation where reasonable accommodation seems fitting. That is, even though in this case, HD symptoms seem to violate the rights of other community members, it does not seem unreasonable to ask for an exception. Provided that the infraction is a direct result of HD, it seems an exception ought to be made that arranges for the hoarder to seek treatment versus being persecuted. 41 This final claim for reasonable accommodation on the basis of human rights may not be legitimate because search and seizure might typically be warranted by law, and possession of items might only be restricted as it becomes unequal to that of other community members. However, insofar as these problems are perceived as a result of the hoarding demographic being unaccommodated for in terms of human rights, it is important at least to consider.
  • 50. Treating Hoarding Disorder Egersdorf 2016 50 On the other hand symptoms of hoarding often result in much more serious infractions. The increased surface area and typically very stagnant state of clutter accumulations lends itself to a number of concerns such as increased fire hazard, increased levels of mold and dust in the air, and infestations. All of these conditions can be construed as a violation of others’ human rights, especially in rental situations where neighbors are only a wall away. For example, if anyone is living in unsafe conditions as the result of a hoarder’s behavior, we would say their health is threatened, which equates to a violation of their bodily health capabilities which are necessary for flourishing (Nussbaum, 1999).42 This violation can be extended to children, other family members, and even pets that live with the hoarder, as well as neighbors, who are perturbed by fire hazards, increased vermin populations, and constant odors. In these cases, it may not be reasonable to make an accommodation for the hoarder; it seems we must prioritize the right to life of community bystanders over that of the hoarder. It is important to note that these instances (where HD symptoms seem to violate human rights necessary for flourishing) are worst case scenarios that describe the “fundamental changes in a neighborhood” (FHAA) that should be avoided when offering reasonable accommodation. In these instances, drastic measures might be unavoidable. Either the problems will be mitigated by removing the clutter, or the harmed individuals – typically animals and children who cannot advocate for themselves – are removed from the hoarder. If the problematic clutter is removed, the severe distress caused by the perception of such a majorly traumatic event will likely result in rumination that causes the hoarder’s symptoms to merely increase in severity. This would 42 Here, I want to be clear that this does not apply solely to human flourishing, because although I do not want to go into the discussion of animal rights, I would like to leave the possibility open. Even if we do not allow the same ‘right to life’ for animals as we do for humans, it still seems that the slow death of an animal as a result of hoarding is inhumane and unnecessary. Whereas some might argue that raising and killing animals for food (while often inhumane) bears some semblance of necessity tied to the utility of livestock. It is my opinion that in cases like this, the animal’s flourishing ought to be prioritized over that of the hoarder’s.