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Hoarding disorder: a review

Article · June 2018

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Bárbara Perdigão Stumpf Cláudia Hara


Instituto de Previdência dos Servidores do Estado de Minas Gerais Faculdade da Saude e Ecologia Humana
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REVIEW ARTICLE

Hoarding disorder: a review


Transtorno de acumulação: uma revisão
Bárbara Perdigão Stumpfa, Cláudia Harab, Fábio Lopes Rochaa

Hoarding disorder can be defined as a persistent difficulty in discarding items, due to distress associated with such disposal
or a perceived need to save items regardless of their actual value. Such behavior must result in the accumulation of clutter,
which significantly compromises living conditions, causing distress and/or functional impairment. The most frequently hoarded
items are objects and animals. The point prevalence of clinically significant hoarding was estimated to be 1.5 to 2.1% in the
ABSTRACT

general population, and may exceed 6% in the elderly. HD poses a range of health and safety hazards to individuals, especially
older adults, generating significant costs to society. The diagnosis of HD is clinical, and should only be established after general
medical conditions and other mental disorders that can lead to accumulating behavior have been ruled out. HD appears to
follow a chronic, progressive course, and is commonly associated with psychiatric comorbidities. Studies indicate that genetic,
familial, cognitive, and traumatic factors are implicated in the etiology of HD. To date, psychotherapies have been the most
widely studied therapeutic approaches, but the results of these studies show small effects. Research into pharmacological
approaches to HD is still incipient, precluding any conclusions of efficacy.
KEYWORDS: hoarding disorder; collecting; psychopathology.

O transtorno de acumulação (TA) pode ser definido como uma dificuldade persistente de desfazer-se de itens devido ao sofrimento
associado com o descarte ou uma necessidade percebida de guardar posses a despeito de seu valor real. Tal comportamento
pode resultar no acúmulo de objetos, o que compromete significativamente o uso da moradia, causando sofrimento e/ou
prejuízo funcional. Os itens acumulados mais frequentemente são objetos e animais. A prevalência do transtorno é de 1,5 a
2,1% na população em geral, podendo ser maior que 6% em idosos. O TA causa riscos à saúde e à segurança dos indivíduos,
RE SUM O

especialmente dos idosos, gerando um custo relevante para a sociedade. O diagnóstico de TA é clínico e só deve ser feito
após a exclusão de condições médicas gerais e outros transtornos mentais que podem levar ao acúmulo de objetos. O TA
parece ser um transtorno de curso crônico e progressivo, comumente associado a comorbidades psiquiátricas. Estudos indicam
a participação de fatores genéticos, familiares, cognitivos e de experiências traumáticas na etiologia do TA. A abordagem
terapêutica mais estudada até o momento foram as psicoterapias, mas os resultados mostram efeito pequeno. Os estudos
farmacológicos existentes são muito incipientes, não permitindo conclusões de eficácia.
PALAVRAS-CHAVE: transtorno de acumulação; colecionismo; psicopatologia.

Instituto de Previdência dos Servidores do Estado de Minas Gerais (IPSEMG) – Belo Horizonte (MG), Brazil.
a

Faculdade de Saúde e Ecologia Humana (FASEH) – Vespasiano (MG), Brazil.


b

Correspondence data
Bárbara Perdigão Stumpf – Rua Ceará, 195 – Santa Efigênia – CEP: 30150-310 – Belo Horizonte (MG), Brazil – E-mail: [email protected]
Received on: 01/13/2018. Accepted on: 03/12/2018
DOI: 10.5327/Z2447-211520181800005

54 Geriatr Gerontol Aging. 2018;12(1):54-64


Stumpf BP, Hara C, Rocha FL

INTRODUCTION a history of psychiatric treatment, HD is usually underdi-


The act of hoarding is not a behavior confined to agnosed and untreated. Thus, it is imperative that health
humans. No other species, however, fills their lives professionals, especially those who care for the elderly, be
with objects as human beings do. People are capable familiar with the symptoms of HD and evaluate properly
of creating attachments and even intimacy with inan- for this disorder.4.5
imate objects. 1 Within this context, the objective of this article is to
The concept of possession of objects as if “part of our- present a narrative review of HD.
selves” is established around the age of two. Throughout
childhood, intense relationships with one particular object History
can develop. In the first half of adolescence, possessions Interest in the phenomenon of hoarding began in the
start to become a sort of “crutch” for the self. During the 20th century, alongside the expansion of the psychoana-
second half, they become a reflection of who and what we lytic movement. In 1908, Freud detailed the so-called “anal
are, which persists into adulthood. In old age, our posses- character” as a combination of three peculiarities: order-
sions become mementos of life; an aid to reflection and liness, obstinacy, and parsimony (which could reach “the
nostalgia, as well as a source of comfort. Most of the time, point of avarice”). More specifically, Freud’s description
this is part of the healthy aging process. In a way, our rela- of parsimony was probably one of the earliest sketches of
tionships with objects can be defined as a reflection of our what would later be called hoarding. In 1912, Jones iden-
interpersonal relationships.1 tified two key aspects of Freud’s anal trait of parsimony:
Hoarding disorder (HD) can be defined as a persistent the “refusal to give” and “the desire to gather, collect, and
difficulty in discarding items, due to distress associated hoard.” Jones suggested that money, books, time, food, and
with such disposal or to a perceived need to save items other objects were fecal equivalents of the anal character.
regardless of their actual value. This difficulty in discard- Later, hoarded possessions were also conceptualized as
ing items can result in clutter, in which hoarded items phallic symbols, transitional objects, a pathological way
fill up living spaces and significantly jeopardize housing of relating, and as the last vestiges of patients’ object rela-
conditions. For accumulating behavior to be classified as tions, among others.6
hoarding, it must cause distress or functional impairment The term “hoarding” was introduced into the scientific
and cannot be attributable to another clinical illness or terminology to describe the food-collecting behavior of
psychiatric disorder.2 certain animals, especially rodents.6 It was first applied to
The items most often hoarded are objects (e.g., clothes, humans in a 1966 scientific paper, referring to the extreme
papers, books, empty food packaging) and animals. end of a continuum of accumulating behavior.7 Subsequently,
Difficulty organizing the home, the shame brought on hoarding has been reported in a number of psychiatric dis-
by messiness or clutter, and criticism from others makes orders, raising questions about how best to classify such
hoarders commonly isolate from social interaction. 3 behavior. In the late 1980s, Greenberg described several
This social withdrawal, in turn, facilitates increased hoard- psychopathological aspects seen in primary hoarding: early
ing. HD poses a wide range of risks to the health and onset (in the third decade of life), preoccupation with accu-
safety of individuals, especially older adults, as it leads mulation to the exclusion of work and family, poor insight,
to poor hygiene, animal infestation, and increased risk of little interest in receiving treatment, and no attempt to
falls, serious injury, and even death (by burial under “ava- curb the compulsion.6 In the following decade, Frost and
lanches” of collapsing piles of objects or in house fires). Hartl recognized HD as a disorder they called “compul-
In addition, the disorder causes distress to the affected sive hoarding”, a term no longer in use. Their criteria for
individual himself, his family, and the community in which compulsive hoarding were:
he lives. Hoarders also constitute a significant economic 1. the acquisition of, and difficulty discarding, large
burden, including expenses for fire and rescue services, numbers of possessions that appear to be useless or
health and social services, as well as unemployment and of limited value;
disability benefits.3 2. living spaces sufficiently cluttered so as to pre-
The clinical relevance of HD increases as individuals clude the activities for which those spaces were
age.4,5 Elderly individuals with hoarding behavior constitute designed; and
a highly vulnerable population, with a 5-year mortality rate 3. significant distress or functional impairment caused
of approximately 50%.5 However, even in older adults with by the hoarding.8

Geriatr Gerontol Aging. 2018;12(1):54-64 55


Hoarding disorder

Diagnosis chapter on OCD and related disorders, which is expected


Until the 4th revised edition of the Diagnostic and to include HD.6.7
Statistical Manual of Mental Disorders (DSM-IV-TR),
hoarding was classified as a symptom of Obsessive- Differential diagnosis
Compulsive Personality Disorder (OCPD), and indi- Cluttered living spaces are not always pathogno-
rectly related to Obsessive-Compulsive Disorder (OCD).7 monic of HD. A diagnosis of HD can only be estab-
In DSM-5, Hoarding Disorder was classified as an inde- lished after other clinical conditions (e.g., brain tumor,
pendent disorder. The DSM-5 diagnostic criteria 2 are cerebrovascular disease, Prader-Willi syndrome) and
described in Chart 1. mental disorders (e.g., OCD, autism, depression, schizo-
In the 10th revision of the International Classification phrenia) that can lead to accumulating behavior have
of Diseases (ICD-10), hoarding is not mentioned at all, been ruled out. The main differential diagnoses of HD
whether as symptom or as syndrome, dependent or inde- are described below.
pendent of other diagnoses.6 However, it is believed that,
like DSM-5, the 11th revision (ICD-11) will have a Normative collecting
HD must be differentiated from normative collect-
Chart 1 Diagnostic and Statistical Manual of Mental Disorders ing.7-10 The habit of acquiring and accumulating objects of
(DSM-5) diagnostic criteria for hoarding disorder. a specific type (e.g., stamps, coins, objets d’art) is commonly
A. Persistent difficulty discarding or parting with possessions, known as collecting. Collectors are usually methodical
regardless of their actual value. individuals who organize, clean, and catalog their items.
B. This difficulty is due to both a perceived need to save the More than 50% of school-age children keep collections,
items and to distress at the thought of discarding them. and many retain the habit into adulthood. Among adults,
C. The difficulty in discarding possessions results in the about 30% engage in collecting behavior. However, collect-
accumulation of possessions that congest and clutter active living ing tends to decrease over time, as opposed to hoarding,
areas and substantially compromises their intended use. If living
which tends to increase with advancing age.1,10 The main
areas are uncluttered, it is only because of the interventions of
third parties (e.g., family members, cleaners, authorities). differences between normative collecting and HD are
presented in Table 1.
D. The hoarding causes clinically significant distress or
impairment in social, occupational, or other important areas
of functioning (including maintaining a safe environment for “Organic” accumulation
self and others). Another differential diagnosis is so-called “organic” accu-
E. The hoarding is not attributable to another medical mulation, also known as “Diogenes syndrome” or “severe
condition (e.g., brain injury, cerebrovascular disease, Prader- domestic squalor”. This clinical condition, most common
Willi syndrome).
in the elderly, is characterized by a breakdown in and rejec-
F. The hoarding is not better explained by the symptoms
tion of social standards, reflected by severe self-neglect and
of another mental disorder (e.g., obsessions in obsessive-
compulsive disorder, decreased energy in major depressive squalor, progressive withdrawal from social contact, reduced
disorder, delusions in schizophrenia or another psychotic insight into the problem, and accumulating behavior focused
disorder, cognitive deficits in major neurocognitive disorder, on objects and trash.11,12
restricted interests in autism spectrum disorder).
A diagnosis of HD is sometimes suggested for hoard-
Specify if: With excessive acquisition: If difficulty discarding ers who live in severely unhealthy conditions, surrounded
possessions is accompanied by excessive acquisition of items that
by garbage, rotten food, and/or excreta. However, domestic
are not needed or for which there is no available space.
Specify if: With good or fair insight: The individual recognizes squalor is frequently associated with cases of acquisition/
that hoarding-related beliefs and behaviors (pertaining to difficulty accumulation secondary to organic pathology; in such cases,
discarding items, clutter, or excessive acquisition) are problematic. a diagnosis of HD should not be made.7,13 The phenomeno-
With poor insight: The individual is mostly convinced that hoarding-
logical differences between “organic” accumulation and HD
related beliefs and behaviors (pertaining to difficulty discarding
items, clutter, or excessive acquisition) are not problematic despite are summarized in Table 2.
evidence to the contrary. With absent insight/delusional beliefs:
The individual is completely convinced that hoarding-related OCD
beliefs and behaviors (pertaining to difficulty discarding items,
To the first psychoanalysts, “anal traits” (precursors of
clutter, or excessive acquisition) are not problematic despite
evidence to the contrary. what is now termed OCPD) and OCD were part of the
Source: APA, 2013.2 same spectrum, had common etiopathogenetic factors, and

56 Geriatr Gerontol Aging. 2018;12(1):54-64


Stumpf BP, Hara C, Rocha FL

shared a variety of symptoms. As parsimony (or, in recent 4. in OCD, thoughts trigger an urgent desire to get rid
parlance, hoarding) is one of the so-called anal traits, it of them and/or perform a ritual to relieve them, which
was believed that hoarding could represent a symptom of is uncommon in HD; and
OCD. To these first theorists, accumulation could take on 5. the reasons for accumulating are different in HD
the characteristics of a compulsion, defined as a behav- and OCD. In HD, hoarding results from the fear
ior that is recognized by the individual as his or her own, that items may be needed in future (intrinsic value)
irresistible, unpleasant, and repetitive. Perhaps as a conse- or from a strong emotional attachment to pos-
quence, hoarding obsessions and compulsions are reported sessions. In OCD, accumulation aims to alleviate
by almost 53% of patients with OCD.6 However, only a obsessions, prevent damage caused by aggressive
minority of these individuals (approximately 5%) have this obsessions or fears of contamination, relieve feelings
dimension as the most prominent clinical manifestation of of incompleteness, or simply serve as an avoidant
the disorder. There are several phenomenological differences behavior6,7 (Table 3).
between accumulating symptoms seen in OCD and those
of HD. For instance: Accumulation should only be seen as a symptom of OCD
1. HD-related thoughts differ from OCD-related when it is clearly secondary to typical obsessions. The relation-
thoughts insofar as the former are less intrusive, char- ship between obsessive thoughts and the resulting behavior
acterized by poorer insight, associated with pleasure (accumulation/hoarding) is the same as that between tradi-
and reward in most cases, and often unrelated to tional obsessions and compulsions. Nevertheless, HD and
other prototypical themes of OCD (obsessions with OCD can coexist in the same patient and be completely
aggressive, sexual, religious, contamination-related, independent conditions.7,9
or symmetry-related content);
2. in HD, symptoms are perceived as ego-syntonic, Epidemiology
unlike the obsessions/compulsions of OCD-related Ascertaining the prevalence of HD is no easy task,
accumulation, which are usually egodystonic; as hoarders tend to minimize and be ashamed of their
3. in HD, distress is brought on by clutter, whereas in problem. 1 Studies on the prevalence of HD performed
OCD, it is the result of intrusiveness; prior to the publication of DSM-5 reported rates around

Table 1 Differences between normative collecting and hoarding disorder.


Feature Normative collecting Hoarding disorder
Unfocused; objects lack a cohesive theme, and
Very focused; objects are bound by a cohesive
Content the accumulation contains a large number of
theme, with a narrow range of object categories
different object categories
Structured; planning, searching for items, Unstructured; lack of advance planning, focused
Acquisition process
organizing the collected items searching, or organization
Possible, but uncommon; items primarily Very common; >80% of items bought or
Excessive acquisition
acquired by purchasing collected for free
High; rooms are functional and collected items are Low; the functionality of rooms is compromised
Level of organization
organized, stored, or displayed in an orderly fashion by the presence of clutter
Rare; for the majority of collectors, the activity
Required for diagnosis; distress is often a
is pleasurable, although for a minority, collecting
Distress consequence of the presence of excessive
may result in distress due to factors other than
clutter, forced discarding, or inability to acquire
clutter (e.g., finances)
Minimal; collectors have high rates of marriage, Often severe; hoarding disorder is consistently
Social impairment and the majority report engaging in social associated with low rates of marriage and high
relationships as part of their collecting behavior rates of relationship conflict and social withdrawal
Rare; scores on objective measures indicate that Common; occupational impairment increases
Occupational interference collectors do not experience clinically significant with hoarding severity; high levels of impairment
impairment at work at work have been reported
Source: after Mataix-Cols, 2014.8

Geriatr Gerontol Aging. 2018;12(1):54-64 57


Hoarding disorder

2 to 4%, rising up to 6% in subjects over the age of 55.14-19 15,503 population, 7,390 men, 8,133 women, 1,753
Of these studies, only one was not conducted in the older adults (over 60 years), 716 elderly men, and 1,037
Western world. 19 In the first epidemiological study to elderly women. This rate is lower than those reported
follow the DSM-5 diagnostic criteria, conducted in the in international studies, probably because only hoard-
United Kingdom, the estimated prevalence was 1.5% in ers reported to government agencies were included in
both sexes, with the highest prevalence found in older the sample. The reduction in prevalence in studies con-
adults. 20 In a study conducted in the Netherlands, the ducted after publication of the DSM-5 is possibly due
prevalence of HD was 2.12% in both sexes, with a linear to the recent standardization of diagnostic criteria for
rise in prevalence of approximately 20% every 5 years.21 HD, especially with the exclusion of cases secondary to
In Brazil, a cross-sectional study carried out in Curitiba other conditions. In previous studies, authors used their
(PR) on the frequency of accumulating behavior showed a own definitions of clinically meaningful accumulating
rate of 6.45 hoarders per 100,000 population.22 This study behavior and identified members of populations that
estimated a rate of 1 case of compulsive hoarding per met those criteria. 7

Table 2 Phenomenological differences between accumulating behaviors secondary to macroscopic brain damage in patients
with brain injury or dementia and the accumulating behaviors of hoarding disorder.
“Organic” accumulation Hoarding disorder
Generally sudden in cases of brain damage. Can be Insidious. Usually starts in childhood/adolescence
Onset
more insidious if secondary to a dementing process and has a long natural history
Variable (some are able to discard their
Ability to discard Inability to discard hoarded items is a core
possessions easily or do not care if others
hoarded items feature of hoarding disorder
discard them, while others are very reluctant)
Generally indiscriminate, but can be more selective Items are always acquired/hoarded according to
Nature of
(acquisition of specific items, e.g., umbrellas, or their perceived intrinsic, practical, or emotional value,
acquiring behavior
according to their shape/color) in some cases but can be more indiscriminate in some cases
Often purposeless (individuals display little or More purposeful (items are hoarded for specific
Utility of hoarding behavior no interest in the accumulated items) and items emotional or practical reasons), although items
seldom used are often not used
Hoarded items Any item, including rotten food Any item, although hoarding of rotten food is rare
Thought to be relatively uncommon, although
Squalor and/or self-neglect Frequent (especially in cases of dementia)
more research is needed
Severe personality changes, as well as behaviors
commonly attributed to brain dysfunction such No severe personality changes or other
as pathological gambling, inappropriate sexual behaviors clearly attributable to brain
Associated features
behavior, compulsive shopping leading to dysfunction. Excessive acquisition, shopping, and
financial difficulties, theft, stereotyping, tics, and stealing may be present
self-injurious behaviors
a) Information processing deficits: decision
Hoarding apparently devoid of identifiable making, categorization, organization, and
Cognitive processes and
cognitive and emotional processes, although memory difficulties; b) emotional attachment
motivations for hoarding
more research is needed to possessions; c) behavioral avoidance;
d) erroneous beliefs about possessions
Insight ranges from good to poor or absent.
Initially, hoarding behavior can be ego-syntonic;
Insight and
Insight poor or absent. Patients seldom seek help it becomes increasingly distressing as clutter
help-seeking behavior
increases. Help-seeking is probably related to
the degree of insight
Prevalence Unknown (<1%) Approximately 2-5%
Unknown, but there are anecdotal reports of Yes. Hoarding disorder tends to run in families
Genetic
relatives independently living in squalor and appears to be moderately heritable
Source: after Snowdon et al., 2012.12

58 Geriatr Gerontol Aging. 2018;12(1):54-64


Stumpf BP, Hara C, Rocha FL

HD appears to follow a chronic, progressive course. Etiology


Accumulating behavior typically begins in adolescence, with The causes of HD are unknown, but some theories have
a mean age at onset between 11 and 15 years. Initially, symp- been proposed.
toms do not cause distress or impairment, but usually
become problematic around the fourth or fifth decade of Genetics
life.9,23,24 The mean age at treatment initiation is approxi- HD appears to have a strong genetic component.
mately 50 years.24 HD diagnosed later in life tends to be Familial studies conducted before 2013 showed that
more severe.5 hoarding was more common among first-degree relatives
HD is associated with psychiatric comorbidities, of compulsive hoarders compared to controls.25-28 The first
including high rates of depression, generalized anxiety study conducted after publication of the DSM-5 evalu-
disorder (GAD), social phobia, attention deficit/hyper- ated symptoms of hoarding among parents and siblings of
activity disorder (ADHD), and OCD. 5 In older adults patients with a diagnosis of HD, and compared them to
with HD, specifically, the most frequent comorbidities relatives of individuals with OCD and community con-
are depression (14–54%), anxiety disorders, personality trols. Participants in the three groups reported a higher
disorders, posttraumatic stress disorder, and substance use rate of hoarding symptoms among female relatives (moth-
disorders.5 In addition, individuals with HD have a worse ers and sisters) compared to males (fathers and broth-
overall health status compared to controls, especially in ers), and the rates found in relatives of individuals with
older populations.24 HD were higher than those found in the other groups.29

Table 3 Characteristics of hoarding in patients with hoarding disorder vs. hoarding secondary to obsessive-compulsive disorder.
Hoarding as a dimension of
Hoarding disorder
obsessive-compulsive disorder
Hoarding behavior is driven primarily by
Relationship between hoarding and Hoarding not related to
prototypical obsessions or is the result of
obsessive-compulsive symptoms obsessions/compulsions
persistent avoidance of onerous compulsions
Checking behavior associated with hoarding Rare and mild Frequent and severe
Obsessions related to hoarding
(e.g., catastrophic consequence No Yes
or magical thinking)
Mental compulsions related to hoarding No Yes
Usually ego-syntonic: hoarding thoughts are Usually ego-dystonic: intrusive or
Ego-syntonic/ego-dystonic
associated with pleasant feelings of safety unwanted, repetitive thoughts
Presence of obsessive-compulsive
No Yes
symptoms other than hoarding
Distress Comes from clutter (product of behavior) Comes from intrusion
Main reason for hoarding Intrinsic and/or sentimental value Other obsessional themes
Type of hoarding
Common items (old clothes, magazines,
Yes Yes
CDs, letters, pens, bills, newspapers, etc.)
Bizarre items (feces, urine, nails, hair,
No Yes
used diapers, rotten food, etc.)
Excessive acquisition Usually present Usually absent
Generally good, although
Insight Frequently poor or absent
poor insight may be present
Hoarding tends to increase in Hoarding does not increase in
Course of hoarding behavior
severity as the person ages severity as the person ages (usually)
Global severity/interference Usually moderate Usually severe
Source: After Albert et al., 2015.7

Geriatr Gerontol Aging. 2018;12(1):54-64 59


Hoarding disorder

Findings from genetic studies are consistent with those 3. and information processing deficits in attention,
of familial studies, suggesting that accumulating behav- categorization, memory, and decision-making 8
ior is heritable.30 However, specific genes predisposing to (Figure 1).
HD have not been consistently identified.5
Research and clinical observation suggest that accumu-
Trauma lating behavior in HD serves to avert distress and provide
Individuals with HD often report traumatic life events comfort, which probably perpetuates the disorder through
preceding or exacerbating the disorder. 9,31 Notably, in positive and negative reinforcement. Studies examining
elderly hoarders, reported rates of posttraumatic stress the associations between hoarding, emotion, and mood
disorder range from 3.5 to 18%.5 Studies have suggested have related poor emotional regulation, high comorbid-
that certain types of traumatic events have a stronger ity with depression, and low distress tolerance to excessive
association with HD. For instance, interpersonal trau- acquisition and difficulty discarding. While this evidence
mas (such as domestic violence, accidental or tragic loss supports the proposition that hoarding behaviors can be
of a loved one, or neglect in childhood) are the types of driven by emotional difficulties, the mechanisms whereby
traumatic event most commonly reported by patients some components of the current model contribute to such
with HD.32,33 The experience of interpersonal trauma can behaviors are unclear.36
result in strong emotional attachment to possessions or
belongings that provide a sense of security. This may be Clinical features
the reason why patients with HD experience difficulty As mentioned above, accumulating behaviors typ-
separating from their belongings and are prone to exces- ically begin in early adolescence and tend to become
sive acquisition.8,34 Furthermore, a perceived threat to their more severe over the years. 9,24,37,38 When HD is sub-
possessions (e.g., loss of belongings in a fire, forced dis- divided into its main symptoms of clutter, acquisition,
posal of objects) is commonly reported before the onset and difficulty discarding, acquisition (whether through
of accumulating symptoms.32,33 One study examined the purchase, “picking”/collecting, or even stealing) appears
relationship between trauma (including physical/sexual to start later than the other symptoms. One possible
abuse, crime, and disasters in general) and tendencies to explanation is the greater physical and financial inde-
acquisition and hoarding. The authors reported that the pendence of individuals as they reach adulthood. 37
development of HD is also related to the intensity of Symptoms begin to interfere with functioning around
the traumatic event, particularly physical/sexual abuse.34 the age of 25, and significant impairment is observed
However, there are no prospective studies confirming a around the age of 35 years. 9
causal relationship.7 Contrary to popular belief, there is HD is associated with significant functional impair-
no evidence to support that material deprivation in child- ment for both patients and families. One study showed
hood predisposes to HD.9 that the level of carer overload experienced by relatives of
patients with HD was comparable to or even higher than
Cognitive-behavioral model that reported in the literature by relatives of individuals
According to the cognitive-behavioral model pro- with dementia.39
posed by Steketee and Frost, HD develops as a result of Individuals can hoard objects, animals, and even
emotional responses associated with certain thoughts electronic information. Animal hoarding in particular
and beliefs about possessions. Individuals find it diffi- is characterized by accumulation of animals without
cult to discard possessions, seeking to avoid the anxiety providing proper care and an adequate environment, as
associated with discarding and decision making, while well as health and safety risks and impairment of occu-
positive emotions associated with belongings facilitate pational and social functioning. The houses of animal
their acquisition and storage. 35 Frost and Hartl pro- hoarders are cluttered, disorganized, and dysfunctional.
posed that three primary factors contribute to accumu- Squalor is frequent, urine and feces are commonly found
lating behavior: in living areas, and animal cadavers may be present.
1. beliefs related to possessions and excessive emotional These hoarders have great difficulty giving up their ani-
attachment; mals to people who are able to care for them properly,
2. behavioral avoidance, which develops as a result of and develop intense attachments that result in signifi-
emotional distress associated with discarding items; cant impairment. 40

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Stumpf BP, Hara C, Rocha FL

Assessment If a home visit is impossible, the use of photographs or


Individuals with HD usually present to health services even video footage to evaluate the extent of the prob-
brought by other persons or government agencies that have lem is advised. However, it bears stressing that neither a
identified the problem; spontaneous help-seeking is rare. home visit nor the use of photographs/video can replace
The diagnosis of HD is clinical. Tests are ordered solely a thorough psychopathological interview. In patients
to rule out organic diseases that may be responsible for with poor or even absent insight, which constitute the
accumulating behavior. Several diagnostic instruments can majority of cases, an interview should be conducted with
assist in the diagnosis of HD, such as the Saving Inventory reliable informants. 7,9 A study evaluating the accuracy
Revised (SI-R), UCLA Hoarding Severity Scale (UHSS), of reports of symptom severity and degree of insight in
Hoarding Rating Scale-Interview (HRS), and Structured HD showed good correspondence between the reports
Interview for Hoarding Disorder (SIHD).41-44 To the best of patients and those of informants regarding the sever-
of our knowledge, only the SI-R has been validated for ity of clutter, but informants reported higher degrees
use in Brazil.45 of squalor. Comparisons between reports of informants
During the interview, it is important to probe patients and professionals have shown that informants underes-
for symptoms of hoarding, as spontaneous reporting is timate the insight of individuals with HD. Patients with
unusual. Patients with HD display varying degrees of HD who refused to participate in the study had greater
insight. They are usually ashamed of their own homes symptom severity and less insight compared to those
due to clutter, and have probably received much criticism who participated. 46
over the years. The formal diagnosis requires an interview
conducted by a trained health professional, preferably at Treatment
the patient’s home, as the presence of clutter is neces- The unsatisfactory response of accumulating behav-
sary for diagnosis. The home visit allows the clinician to iors to standard treatments for OCD has led to the
objectively assess the proportion of the disorder, ascertain development of specific approaches to this problem.
the extent of the resulting clutter and impairment, and Early treatments were based on the cognitive-behavioral
determine whether health and safety risks are present. model of compulsive hoarding, and included training in

Vulnerability factors Beliefs/emotional attachment Emotional reactions Hoarding behaviors


Information processing
Perception
Attention
Clutter
Memory
Categorization
Decision-making

Early experiences Beliefs about possessions Positive emotions


Core beliefs Utility Pleasure Acquiring
Unworthy Intrinsic beauty Pride
Unlovable Sentimental value
Abandoned
Personality Beliefs about vulnerability Negative emotions
Perfectionism Safety/comfort Sadness Difficulty in
Dependency Loss Anxiety/fear discarding
Paranoia Beliefs about responsibility Guilt/shame
Mood Waste
Depression Lost opportunity
Anxiety Beliefs about memory
Comorbidity Mistake/misunderstanding
Social phobia Lost information
Trauma Beliefs about control

Source: Steketee & Frost (2006).35

Figure 1 Cognitive-behavioral model of hoarding disorder.

Geriatr Gerontol Aging. 2018;12(1):54-64 61


Hoarding disorder

decision-making and categorization, exposure to dis- Pharmacological treatment


carding, and cognitive restructuring of irrational beliefs To date, there has been little research into pharma-
associated with hoarding.47 cological treatment of HD. To our knowledge, there
Various protocols for individual cognitive-behav- are only four published studies on pharmacotherapy for
ioral therapy (CBT), group CBT, and self-help treat- this disorder, 42,54-56 only one of which included elderly
ments were developed for HD. More recently, other patients. 55 The first study evaluated the efficacy of par-
approaches have been tested, such as harm reduction oxetine in 79 subjects with OCD for 12 weeks (mean
(for individuals who are not motivated to change their dose 41.6 ± 12.8 mg/day). Of these, 32 were compul-
accumulating behavior), cognitive remediation ther- sive hoarders. Both compulsive hoarders and patients
apy directed at neurocognitive deficits, family-based with OCD without hoarding symptoms improved with
interventions to increase the motivation of individu- treatment. Accumulating behaviors improved, as did
als with HD and/or support the needs of relatives, and other symptoms of OCD (mean reduction, 24%), as
pharmacotherapy. 47-49 measured by the UHSS. However, paroxetine was poorly
tolerated. Only 16 of the 79 patients tolerated a dose
Psychotherapy of 60 mg/day. Less than half of the sample reached a
To the best of our knowledge, four reviews on the psy- dose of 40 mg/day, and 12 patients were unable to tol-
chotherapeutic treatment of hoarding difficulties have erate more than 30 mg/day. The most common adverse
been published. 47,50-52 In two, the authors found mod- effects were sedation, fatigue, constipation, headache,
est responses and high discontinuation rates with treat- and sexual dysfunction. 42
ments not specific for hoarding in patients with OCD Another study evaluated the efficacy of venlafaxine
and hoarding symptoms, compared to those without in the treatment of 24 subjects with HD for 12 weeks
hoarding symptoms.50,52 A meta-analysis by Tolin et al. (mean dose 204 ± 72 mg/day). The symptoms of hoard-
showed a significant reduction in the severity of hoard- ing improved, with a mean reduction in UHSS score of
ing after HD-specific CBT interventions. The largest 36%. Overall, 96% of participants (n=23/24) completed
effects were seen for difficulty discarding, followed by the study, and no patient discontinued treatment due to
clutter and acquisition. The rates of clinically signifi- adverse effects or lack of efficacy. Twelve of the 23 partici-
cant improvement, however, were low (24–43%), as was pants tolerated at least 150 mg/day of venlafaxine, 16 tol-
improvement in functional impairment.51 The most recent erated 225 mg/day, and four received the maximum dose
review included 20 studies and assessed the quality of evi- of 300 mg/day. However, the authors reported a significant
dence regarding treatments for HD symptoms and related negative correlation between age and treatment response,
problems. The treatment approaches evaluated were CBT, suggesting that older patients experienced fewer reductions
pharmacotherapy, cognitive rehabilitation, online support, in hoarding symptoms.55
and family interventions. Most of the included studies In a case series, four patients with HD without
(n=17/20) were of CBT-based interventions. Although the comorbid ADHD were treated with controlled-release
majority of the studies were of poor methodological qual- methylphenidate for 4 weeks (mean dose 50 ± 9 mg/
ity, the results obtained with CBT strategies (individual, day). Two participants displayed a modest reduction in
group, and bibliotherapy support groups) were compara- hoarding symptoms measured by the SI-R (25 and 32%),
ble. However, the reductions in symptom severity were especially regarding excessive acquisition. There were no
modest. Cognitive remediation, despite little research to treatment-emergent symptoms such as tics, psychosis,
support it, improved hoarding symptoms by up to 40%. mania, or depression. However, at the end of the study, no
The authors concluded that no psychosocial technique participant agreed to continue treatment, due to adverse
for HD is superior to others, although the most reliable effects (insomnia and palpitations).54 More recently, one
evidence to date is for individual or group CBT follow- study evaluated the efficacy of atomoxetine for 12 weeks
ing an HD-specific protocol.47 (40–80 mg/day) in the treatment of 12 patients with HD.
Studies of psychotherapeutic treatment of HD in the The mean reduction in hoarding symptoms was 41.3%
elderly are particularly scarce. Research on the use of (UHSS-measured).56
CBT for late-life hoarding is limited to case reports and Regarding the acceptability of treatments and services
open trials.53 available to individuals with HD, a recent study showed

62 Geriatr Gerontol Aging. 2018;12(1):54-64


Stumpf BP, Hara C, Rocha FL

that the treatments deemed most acceptable by patients significant costs to society, because of the risks it poses
were individual CBT, professional organizing services, to the health and safety of individuals, especially older
and self-help books. The least acceptable treatments were adults. Studies indicate that genetic, familial, cognitive,
medication, cleaning and removal services, and a court-ap- and traumatic factors are implicated in the etiology of
pointed guardian.57 HD. To date, psychotherapies have been the most widely
studied therapeutic approach, but the results of these
studies show small effects. Research into pharmacolog-
CONCLUSION ical approaches to HD is still incipient, precluding any
HD is a serious, under-researched mental disorder, conclusions of efficacy.
with a prevalence of 1.5 to 2.1% in the general popu-
lation, possibly rising to 6% in the elderly. Its course is
chronic and progressive. HD was recently included in the CONFLICT OF INTERESTS
DSM-5 as an independent nosological entity. It entails The authors declare no conflict of interests.

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