Hoarding: One Man’s Trash is
Another Man’s Treasure
Marcia Monroe, LCSW, MBA
Vice President of Network Development & Clinical Service
PERCEPTION
DEFINITION & CHECKLIST
Definition
Hoarding is the name given to behavior that is characterized by:
• The acquisition and failure to discard a large number of possessions
that appear to be useless or of limited values
• Accumulation of belongings to such a degree that they impact
functions and/or preclude the activity for which the space was
designed; for example, when a bed cannot be slept upon or a tub
that cannot be used for bathing because they are used for storage
• When the quantity of items creates a potential hazard or puts people
at risk
Checklist
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The “stuff” in your house is more than clutter
You are unable to throw away possessions
Your possessions have taken over your living space
You cant use your appliances or plumbing fixtures anymore
You feel embarrassed by your possessions
Your suspicious of other people touching your possessions
You cant pass up a bargain
You are sure there is a treasure buried under piles of stuff
You move stuff from pile to pile, but you don’t throw it away
Your house smells bad and is dirty, but you cannot clean it up
CRITERIA
Diagnostic Criteria DSM-V
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Persistent difficulty discarding or parting with possessions, regardless of their actual
value.
This difficulty is due to a perceived need to save the items and to distress associated
with discarding them
The difficulty discarding possessions results in the accumulation of possessions that
congest and clutter active living areas and substantially compromises their intended
use. If living areas are uncluttered, it is only because of the interventions of third party
(e.g. family members, cleaners, authorities).
The hoarding causes clinically significant distress or impairment if social, occupational,
or other important areas of functioning (including maintaining a safe environment of
self and others)/
The hoarding is not attributable to another medical condition (e.g. brain injury,
cerebrovascular disease, Prader-Willi syndrome).
The hoarding is not better explained by the symptoms of another mental disorder 9e.g.
obsessions in obsessive-compulsive disorder, deceased energy in major depressive
disorder, delusions in schizophrenia or another psychiatric disorder, cognitive deficits
in major neurocognitive disorder, restricted interests in autism spectrum disorder).
PRESENTING PROBLEMS
Related Presenting Problems
Pending eviction
Landlord harassment
Problems with neighbors
Complaints from the health or fire department
Rejection by a home care agency because the need for heavy duty
cleaning that the client refuses
• Referred by neighbor, family, clergy.
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DIAGNOSTIC FEATURES
Diagnostic Features
According to an article published in the Journal of Clinical Psychiatry,
people who hoard have obsessive-compulsive disorder, other people
who hoard do not.
The frequent theme on hoarder reality shows is that the individual does
not realize that their lifestyle has spiraled out of control.
Those with the disorder are frequently characterized by poor insight
about the severity of their condition, leading to resistance of attempt by
others to intervene. As the Mayo Clinic notes, even if hoarders
collections are disassembled, they often begin acquiring more items
right away because their underlying condition has not been addressed.
Contributing Factors
Overestimate the need to remember or keep records…”I need….to
remember”
Catastrophic assessment of consequences of forgetting information…”I
just know once I get rid of …..I will need it to….”
Fear of making wrong decision…..”If I only knew for sure….”
ASSOCIATED FEATURES
SUPPORTING DIAGNOSIS
Associated Features
Supporting Diagnosis
• Sentimental hoarders – collecting things that signify their life like a
personal history or testimony
• “Keep everything Steptoe's” whose collecting reflects varying needs
including attachment, identify, worthwhile or helpful to others,
impulsivity or compulsivity.
• Keeping “just in case” hoarders just cannot leave anything or throw
anything away
• Hoarding of specific things – newspapers, books, animals, clothing –
info, attachment, waste not, memory links
• Those whose hoarding reflects cognitive decline, delusional
symptoms and other dysfunctional behaviors
PREVALENCE
Prevalence – Age of Onset, Course
• Chronic & insidious course becoming overwhelming. Single traumatic event
can lead to hoarding.
• Age of onset in childhood/early adolescence as young as 10, mild
symptoms at 17, moderate in mid-20’s, extreme by mid-30’s
• Hoarding more burdensome with age – 3 times more frequent age 55 and
older than in 34-44 age. Help not generally sought until middle age.
• Samuels (2008) estimated prevalence 5%, twice OCD, 5 times Panic
Disorder & Schizophrenia
• It is estimated that slightly less than 1% of the population hoards –
approximately 3 million people in the US.
• Hoarding is private and is in all likelihood underreported. Researchers
believe that fewer than 5% of hoarders ever come to the attention of
authorities.
Prevalence – the Elderly
Hoarding does not begin suddenly. It takes years for items to
accumulate to such a degree that they constitute hoarding. Some
experts believe that hoarding increases among older adults as
compensation for accumulated human losses. Other believe that
hoarding only seems to be a bigger problem among the elderly because
they have had more time to accumulate. As more and more cases of
extreme hoarding in older adults are revealed, hoarding among the
elderly is being recognized as a significant problem.
DEVELOPMENT & COURSE
Development & Course
Hoarding appears to begin early in life and spans will into the late
stages. Hoarding symptoms may first emerge around ages 11-15 years,
start interfering with the individuals everyday functioning by the mid20’s, and cause clinically significant impairment by the mid-30’s.
participants in clinical research studies are usually in their 50’s.
http://www.youtube.com/watch?v=TSaxn0a1Cbk
RISK & PROGNOSTIC FACTORS
Risk & Prognostic Factors
• Temperamental: Indecisiveness is a prominent feature of individuals
with hoarding disorder and their first degree relatives
• Environmental: Individuals with hoarding disorder often
retrospectively report stressful and traumatic life events preceding
the onset of the disorder or causing an exacerbation
• Genetic and Physiological: Hoarding behavior is familial, with about
50% of individuals who hoard reporting having a relative who also
hoards. Twin studies indicate that approximately 50% of the
variability in hoarding is attributable to addictive genetic factors.
CULTURE RELATED
DIAGNOSTIC ISSUES
Culture Related
Diagnostic issues
While most of the research has been done in Western, industrialized
countries and urban communities, the available data from non-Western
and developing countries suggest that hoarding is a universal
phenomenon with consistent clinical features.
GENDER RELATED DIAGNOSTIC
ISSUES
Gender Related Diagnostic issues
Listed below is the set of characteristics that experts believe define
hoarders. It should be noted that hoarding situations that defy each of
these characteristics are common. Hoarders are typically;
• Female; unmarried
• Living alone; socially isolated
• Related to other hoarders
• Suffering from anxiety, depression and or personality disorder
• Lacking insight into the problem or in denial
• More entrenched in hoarding as they age
FUNCTIONAL CONSEQUENCES
OF HOARDING DISORDER
Functional Consequences of
Hoarding Disorder
Clutter impairs basic activities, such as moving through the house,
cooking, cleaning, personal hygiene, and even sleeping. Appliances my
be broken and utilities such as water and electricity may be
disconnected, as access for repair work my be difficult. Quality of life is
often considerably impaired. Family relationships are frequently under
great strain. Conflict with neighbors and local authorities is common and
a substantial proportion of individuals with sever hoarding disorder have
been involved in legal eviction proceedings and some have a history of
eviction.
DIFFERENTIAL DIAGNOSIS
Differential Diagnosis
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Other medical conditions
Neurodevelopmental disorders
Schizophrenia spectrum and other psychotic disorders
Major depressive episode
Obsessive-compulsive disorder
COMORBIDITY
Comorbidity
Approximately 75% of individuals with hoarding disorder have a
comorbid mood or anxiety disorder. The most common disorder is Major
depressive disorder (up to 50% of the cases), social anxiety disorder
(social phobia), and generalized anxiety disorder. Approximately 20%
have symptoms of OCD, and substance related disorders are also
common.
HOARDING VS. SQUALOR
Hoarding vs. Squalor
• Not all hoarders have squalor in the sense of appliances not working,
rotting floors & other maintenance risks. Frost suggests 10%
• Everyone living in squalor has hoarding as in clutter, disorganization,
not knowing where things are
• Squalor associated with personal health – physical & mental
including cognitive decline, drugs – and social issues – poverty,
homelessness, neglect. When memory goes, hard to distinguish
trash from non-trash or how to avoid eating spoiled food.
Squalor Model
• Dementia and other deteriorating models emphasize loss , self care
and perceptual gaps. Study of hospitalized Dementia patients show
22% had hoarding disorder
• Secretive, isolated, uncooperative, decayed food, animal waste, pest
infestation. Services cut-off, deteriorated state of amenities….rotting
floors, blocked toilets, no kitchen.
• Personality traits can contribute as can social circumstances,
homelessness, disempowerment, drug addiction, trauma.
• Dementia brings a sudden deterioration to hoarding situations.
Require attention, psychiatric assessment/medication, protective
intervention & limited goals.
BRAIN ACTIVITY
Brain Activity
According to investigators, the study’s findings suggest that hyperactivity
in the anterior cingulate cortex (ACC) – insula network during decision
making is characteristic of hoarding disorder “and may contribute to
subjective indecisiveness and decisions to save”. Compared with the
individuals who had OCD and healthy individuals, patients with hoarding
disorder exhibited abnormal activity in the ACC and insula.
“We have found in our clinical work that people who hoard frequently
seem to get “stuck” in the decision making process, which makes them
less able or less willing to decide whether to keep or discard things”, first
author David F. Tolin, PhD from Yale University School of Medicine told
Medscape Medical News. (published in August issue Archives of General
Psychiatry)
Brain Activity
Those with hoarding disorder showed key differences in the fMRI
readings in both the anterior cigular cortex, associated with detecting
mistakes during uncertain conditions, and the mid to anterior insula,
linked to risk assessment, importance of stimuli and emotional
decisions.
Interestingly, hoarders showed lower brain activity in these regions when
they were deciding about other people items. But when faced they were
faced with their own items, these areas of the brain showed much
higher rates of signaling than those in either people with OCD or the
healthy controls.
Brain Activity
Dr David Tolin notes that hoarders are not necessarily eager to keep
everything they possess, but rather “the disorder is characterized by a
marked avoidance of decision making about possessions”
They also had trouble remembering the sequence of things (say, a
group of arrows and the direction they face) and performed poorly on
tests measuring attention and response time. The results show, in
essence , that people with hoarding disorders have the most trouble
when categorizing things.
These cognitive differences may eventually represent biomarkers for the
disorder.
TREATMENT/INTERVENTION
Treatment/Intervention
In study after study, some people who take medications for hoarding
improve while others did not. According to an article published by the
Mayo Clinic, some people who hoard see improvements when they
take medications such as Paxil. But the Mayo Clinic is quick to point
out that these medications don’t work for everyone who hoards.
In most cases, however, people with a hoarding disorder are given
medications to help ease their symptoms. At this point, its too difficult for
experts to separate those who would benefit from those who would not,
so its best to give the medication to all parties to be on the safe side.
Those with the disorder have had success with taking selective
serotonin reuptake inhibitors (SSRIs)
Treatment/Intervention
While cognitive behavior therapies have been useful for some people
who hoard, not everyone heals with this method, either. In fact,
according to a study published in the expert Review of Neuropathic,
cognitive therapies used alone have “fared badly” when it comes to
hoarding behaviors. This makes sense, as the hoarder could simply
emerge from the therapy sessions and return to a house full of clutter.
Nothing truly dynamic has happened to force a behavior change.
Quick Fix Clean Ups
• Imposing controls and cleaning up without respecting the needs of
the hoarder lead to rapid relapse and highly reinforced resumption of
hoarding
• Better to understand the personal context, rapport and motivation,
small improvements
Strategic Model
• Essentially want to show the person a different way of responding
• Try to change THINKING about things to more realistic and sensible
reasoning
• AFFECT MANAGEMENT – change is anxiety provoking – how to
deal with feelings
• Engaging life activity – try this!
Strategic Skills
• Learning of skills in managing paper items – categorizing, judging
worth, challenging keeping everything
• Increasing confidence in discarding sessions in clinic, systemic
practices in home increase attentional focus.
• Motivation for change (Rate from 0% to 100%)
• Respond to positive reinforcement, sense of achieving very specific
goals.
• Suggestions is very important change element. Encourage every
small step as chaining such steps shifts behavior.
• Do something daily about de-cluttering
Wheel of Change
Treatment
Routine to keep
changes going
Relapse
De-clutter &
related actions
Talking about plans
to address problems
about hoarding
Hoarding
might be an
issue
Hoarding not seen as
problem
Forcing a Change
One of the best ways to help someone is to put the person through a
form of “coaching”. Through this process the person clears out the
clutter in the home and learns how to sort items and make good
decisions about what to keep and discard.
Rules to Follow
• The person must pick up the first item that comes to hand at the top
of the pile. No sorting of clutter allowed.
• The person must make a decision about the item
• If the person chooses to discard the item, it must be done
immediately
• If they choose to keep the item, they must immediately decide where
to store it.
What blocks – hoarders say
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Enormity of task – not knowing where to start
Unrelenting criticism – family, friends, authorities
Mood shifts
Staying ON TASK, distraction
Pressure to change….Offers of help
Not being understood
Addictive, obsessed nature of CH – stuff takes precedence
“My things” provide stability, identity, me-ness
Not knowing why I started hoarding
What helps– hoarders say
• ACCHIEVABLE PLAN, SET TARGETS
• Strategies like Do Something Daily, small steps, the TAB model of
change, categories
• Shifting thinking re things – discard, reduce acquiring & clutter
• HARM REDUCTION MODEL – understanding my needs
• The learning not judging stance about self
• Presence of support – worker, prof organizer, helper
• Meaning of hoarding for ME, my personal context….”this is me!”
• Markers of progress – reviews and feedback
Summary of Treatment of Hoarding
• CBT Collaborative approach with specific goals
• Shift from impulsive “gut reactions” to thinking, affective, and
behavioral strategies
• Structured interventions – “think clearly”, “manage your feelings”,
“engage life actively”
• Treatment both of explicit symptoms and implicit causal links
• Treatment based on context of individuals life – elderly, functioning
family, multi-problem family, mental health and other disabilities
• Need for work towards policies that support the different stakeholders
Slow Change
Often this is slow process. The therapist visits the hoarder’s home
regularly and stands by as the sorting occurs. The therapist might
remind the person that discarding items is the goal, and the therapist
might coach the patient about what to keep and what to discard.
According to a study published in the journal Behavioral and Cognitive
Psychotherapy people who participated in this sort of therapy for 20
weeks showed improvement in hoarding.
Planning and Intervention
• Hoarding predictive of poor response to treatment, frequent dropouts, recidivism, resistance
• Lack of insight at very high levels – family members report more than
half are in denial or delusional
• Recidivism in animal hoarding almost 100%
• Intervention always driven by breach or related orders by authorities.
Treatment readiness is key
• These factors explain why hoarders do not seek treatment, resist &
interfere (do not do tasks, prioritize other issues) drop out of
treatment
Whether to Intervene?
Range of Tools
• Savings Inventory – Revised: savings actions, time spent,
emotional responses to saving & discarding, usefulness of saving,
interference caused by saving
• Savings Cognitive Inventory: measuring beliefs associated with
possessions – need for things, why cannot throw things away, need
to control what happens, comfort from things
• Savings List of things Kept
• Hoarding Rating Scale; questions regarding clutter, difficulty
discarding and/or acquiring, distress & impairment in life
• Hoarding Interview: re context of hoarding phenomena
• Clutter Image Rating: graded visual images of clutter
Hoarding Rating Scale
Brief screening (0-8 scale) of hoarding features:
• CLUTTER: (Because of clutter, how difficult is it for you to use the
room in your house?)
• DISCARDING: (Do you have difficulty discarding things other people
would get rid of?)
• ACQUIRING: (Do you have a problem with collecting free things or
buying more things than you need?)
• EMOTIONAL DISTRESS: (Do you experience emotional distress
because of clutter, difficulty discarding or acquiring things?)
• IMPAIRMENT IN LIFE: (Do you experience impairment in life
because of clutter, difficulty discarding or acquiring things?)
Motivation – Critical Change Factor
• Varies over time, context, mood state
• Motivational intent deteriorates when client decides this treatment is
not right for them/no treatment is right for them
• Mood and personality variable predominate
• Maintain contact, encourage attendance at group, set limited and
achievable tasks
• Failure to do tasks is a clear predicator of treatment failure in CBT
Assessing Stage of Change
• Ask initial question about client reason for seeing you
• Listen carefully and non-judgmentally
• Ask follow-up question until you can form an assessment of what
stage the client is in
• Set short term goal of moving stage by stage until you get to the
Action Stage
Engagement is Key
• Engage client before you engage the problem
– Membership Theory
• Constant connectedness
• Practice Patience – you cant force engagement
– Think “Bank Account”
• Deposits have to be made before you can make withdrawals
Hoarding Interview
• What are the hoarding patterns in this current situation?
• For example, how difficult is it to use your Dining Room? Sitting,
moving around, using the table. Or your bedroom?
• How distressing is it for you to throw things away? How strong is your
urge to save something you may never use?
• Does clutter cause you to to invite friends to visit? Present health or
safety issues – Falling? Fire? Hygiene? Health?
• When did hoarding start? Was it associated with trauma?
• Which room is the most cluttered? Do you see a need for change?
Behavioral Activation
• What did your client like to do, that they are no longer doing?
• Start wit something Easy and Pleasurable
– Moving from determination to action requires a belief that change is possible
– Contract for One Behavior or Activity
– Assess capacity /desire to do it?
• This will inform treatment plan to remove clutter
Problem Solving Treatment
• Client just doesn’t know where to start
• Start with ONLY ONE PROBLEM
• What are some solutions?
PROS
CONS
Effort
Effort
Time
Time
Money
Money
Emotional Impact
Emotional Impact
Involving Others
Involving Others
Solutions Focused Brief Therapy
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7 Principles
Client is Unique
Client has “Their Special Way” of reaching goals
There are Exceptions of every problem that can be created by client
and you to build solutions
Clients are ALWAYS cooperative
Only Clients can change self
Change is occurring all the time
CLIENT and YOU are BOTH experts
Solutions Focused Brief Therapy
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7 Principles
Client is Unique
Client has “Their Special Way” of reaching goals
There are Exceptions of every problem that can be created by client
and you to build solutions
Clients are ALWAYS cooperative
Only Clients can change self
Change is occurring all the time
CLIENT and YOU are BOTH experts
In Conclusion
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Working with Hoarders requires a significant investment
Start Slow; Go Slow; Finish Job
Multidisciplinary approaches work the best
Be open to compromise
Focus on the war, not the battle
Good Luck!
Subject Matter Experts
• Randy Frost: Smith College, Massachusetts
• Dr. David Tolin, Institute of Living, Connecticut
• Gail Steketee, Boston University
Thank You