Download Hoarding - National Initiative for the Care of the Elderly

Hoarding in Older Adults:
What You Need to Know!
Peggy M.A. Richter, MD, FRCPC
Director, Clinic for OCD and Related Disorders
Associate Professor of Psychiatry,
University of Toronto
[email protected]
Objectives
At the end of this presentation, you will
be:
• Familiar with the core features of
hoarding
• Aware of current thinking regarding
nature and causes of hoarding
• Able to identify appropriate strategies
for hoarding
Disclosures
In the last 3 years:
• On National Advisory Board for OCD for
Lundbeck
• Honoraria from Lundbeck
• Research fellow funded by Eli Lilly
• Research studies funded by Lundbeck
The Collyer Brothers
OCD - Diagnosis
 Obsessions
 persistent unwanted thoughts, images, or impulses
 Intrusive, uncontrollable/excessive
 provoke anxiety
 Compulsions
 repetitive behaviours or mental acts
 performed in response to an obsession, or in
ritualistic fashion
 intended to reduce discomfort or prevent feared
event
 Severity: symptoms must cause
OR
marked distress
occupy > 1 hour/day
significantly interfere with functioning
Current
Obsessions/Compulsions
in 182 patients







Aggressive
Contamination
Symmetry
Somatic
Hoarding
Religious
Sexual
68.7%
57.7%
53.2%
34.1%
30.2%
24.2%
19.8%







Checking
80.7%
Washing
63.7%
Repeating
55.5%
Ordering
40.1%
Counting
35.2%
Hoarding
28.0%
Miscellaneous 59.3%
Summerfeldt, Antony, Downie,
Richter and Swinson 1997
Is Hoarding OCD?
Hoarding ‘Obsessions’
• Intense preoccupation
with belongings
Hoarding ‘Compulsions’
• Acquisition/sorting
/protection of possessions
However:
• Not intrusive
• Not resisted or unwanted
• Not distressing
However:
• Acquisition/collecting of
things generally enjoyable
• Not generally ritualistic
• Not distressing
Rachman, Elliott, Shafran & Radomsky, BRAT, 2009
Definition of Hoarding
1. Persistent difficulty discarding or parting with
possessions, regardless of their actual value
2. A living space sufficiently
cluttered in a manner that
precludes activities for which
the space was designed
3. Significant distress or impairment in functioning
caused by hoarding (including maintaining a safe environment
for self and others)
4.
Hoarding not caused by other mental disorders (e.g. dementia, BAD, MDE) or a
general medical condition (e.g. brain injury, cerebrovascular disease)
Specify:
With Excessive Acquisition
Insight (Good/poor/absent)
Frost & Hartl, 1996; Steketee & Frost, 2003; Grisham et al, 2007; DSM-5
Publication Trends in
Hoarding Research
Mataix-Cols et al, 2010
The OCD Spectrum
Hoarding
Manifestations of Hoarding:
1. Compulsive Acquiring
2. Saving
3. Disorganization
Steketee & Frost, 2007
Manifestations of Hoarding:
1. Compulsive Acquiring
• Compulsive buying
– Retail/discount
– Ebay, web shopping
– Home shopping network
• Compulsive acquiring of
free things
– Advertising flyers/handouts
– Give-aways
– Trash picking, dumpster diving
Steketee & Frost, 2007, Frost et al, 2009, Koran et al, 2006
Compulsive Buying
(compulsive shopping, oniomania)
 Characterized by:




Preoccupation with shopping, or intrusive buying impulses
Clearly buying more than is needed/affordable
Distress
Interference with functioning
 Prevalence 2-8% in U.S.
 Women: clothes, shoes, jewellery, makeup
Men: electronics, hardware, car products
Odlaug & Grant, 2010; Koran et al, 2006; Mueller et al, 2009
Manifestations of Hoarding:
2. Saving
• Reasons for saving
– Sentimental “this helps me remember. This
represents my life. It’s part of me.
– Instrumental “I might need this. I could fix
this. Somebody could use this. Think of the
potential!”
– Intrinsic “Isn’t this beautiful
• Hoarders apply these reasons to more
things
Steketee & Frost, 2007
Manifestations of Hoarding:
3. Disorganization
• Condition of the home
– Clutter
– Mixture of important and unimportant items
• Behaviour
– Fear of putting things out of sight
– Indecisiveness – churning
– Categorization problems
May be slow at completing tasks, frequently
late, use circumstantial/over-inclusive
language
Steketee & Frost, 2007; Saxena, 2008
Characteristics of Hoarding
• Community prevalence 2.3-6%
– Prevalence in OCD: 30%
– Rate increases with age: 2.3% aged 34-44, 6.2%
among age 55 and above
• Mean age of onset of hoarding symptoms: 13
– 60% report onset by age 12
•
•
•
•
•
Course of illness: typically chronic
Average age at treatment = 50
Education ranges widely
Tend to be single, live alone
Low marriage rate, high divorce rate
Koran et al, 2006; Mueller et al, 2009; Samuels et al, 2008; Grisham et al, 2006 Steketee & Frost, 2007;
Tolin et al, 2010
Characteristics of Hoarders
• Squalid conditions uncommon among
treatment seekers
• Insight is limited; recognition of problem
typically develops much later than symptoms
• May be precipitated by loss or deprivation
– Hartl et al, 2005: hoarders reported greater
frequency of traumatic events than controls
• Having something taken by force
• Rough physical handling
• Forced to engage in sexual activity
– Cromer et al, 2007: among OCD sufferers,
hoarders experienced significantly more traumatic
events
Hoarding is associated
with childhood adversity...
-Community-based study of 742 individuals
-prevalence of hoarding was 3.7%, 5.3% weighted prevalence
Samuels et al, 2008
From: Anderson et al. Reasons to Accumulate Excess. Home Health Care
Services Quarterly, 27(3), 2008
>
N=18 older adults (> 60, mean age 67.5 years)
>
Conclusions:
Hoarding symptoms typically started early, and
always before age 30
Hoarding severity increased with age
~50% had other psychiatric disorders, but only
16% had OCD
Compulsive hoarding was grossly underdetected
and untreated (only 2/13 received tx for hoarding)
Diogenes Syndrome
• Also known as
– Senile squalor syndrome
– Social breakdown syndrome
– Syndrome of extreme self-neglect
• First recognized in 1966
• Named by Clark et al, 1975
Macmillan & Shaw, BMJ. 1966; Clark et al, Lancet, 1975
Diogenes Syndrome
Characterized by:
Domestic squalor
self neglect
Social isolation
Hoarding of rubbish
(syllogomania)
Lack of shame
Clark et al, Lancet, 1975; Cybulska & Rucinski Br. J Hosp Med. 1986; Rosenthal et al,
Isr J Psych Relat Sci 1999
Features of Diogenes
Syndrome
• Annual incidence: 5-10/10,000 for >60 yr olds
• M= F
• Majority live alone, but “squalor a deux” also
reported
• More prevalent in upper social classes
• Clark et al: N=30, most highly successful
professionals in earlier life
• Only 50% have Axis I Disorder
• Often associated with frontal lobe dysfunction
(Orrell et al, 1989)
Clark et al, Lancet, 1975; MacMillan & Shaw, Br Med J, 1996; Reyes-Oritz, Compr Ther, 2001;
Snowdon & Halliday, Int Psychogeriatric, 2011
Outcome of Diogenes Syndrome
• Most have significant physical illness
cardiac failure
pulmonary embolism
osteoarthriitis
malignancy
cervical spondylosis
bronchopneumonia
Parkinson’s disease
gangrene
leukemia
renal failure
• Mortality rate following hospitalization: 50%
• 5-year mortality rate: 46%
• Follow-up studies show little change in
living situations after interventions
Clark et al, Lancet, 1975; Ngeh, Ger. Psych 2000; Reyes-Ortiz, 2001; Hanon et al, 2004
Grey Garden
Not all hoarders have a
mental condition…
• Only 50% have an identifiable mental disorder
– among cases with severe domestic squalor:
dementia (22%)
schizophrenia/schizoaffective disorder (21%)
substance use disorder (10%)
– OCD most common in cases referred to therapists
• Frost et al, 2011: studied N=217 hoarders
– 18% hoarders had OCD
– High comorbidity with depression, anxiety (similar to
OCD)
– Hoarding associated with ADHD (28% vs. 3% in OCD)
“Organic”
hoarding versus
Hoarding
Disorder
Mataix-Cols, Pertusa & Snowdon,
J of Clinical Psychology: In Session,
2011
The health burden of hoarding
What is Hoarding???
• OCD?
• complication of multiple
aging-related conditions?
• independent condition?
Why do people hoard?
Ethological
Cognitive
Neurobiology
LIFE EXPERIENCE
Learning Theory
Behavioural
“Genetics play a large part in it…for
example, if your parents didn’t have any
children, you won’t either!”
Is Hoarding Genetic?
• Hoarding runs in families
– 50-85% of hoarders report 1st degree relative who
is a “packrat”
– 26-54% report family members with OCD
• Heritability of hoarding is 71%
• In a study of >5,000 twins, genetic factors
accounted for 50% of variance, along with
nonshared environmental factors, error
• Genetic studies suggest hoarding ≠ OCD
Saxena, 2008; Mathews et al, 2007; Zhang et al, 2002; Samuels et al, 2007;
Iervolino, 2011
- N=3,410 twin participants (2,350 singletons)
-completed Hoarding Rating Scale Self-Report
-genotyped on Illumina 317 K or 610 K
Brain Structures Central to OCD
Thalamus
Anterior
Cingulate
Striatum:
Corpus
Putamen Callosu
CaudateAnterior
Cingulate
Prefrontal
Cortex
Thalamus
from Rosenberg et al., 2000
Do OCD Dimensions Have
Differing Neuroanatomical
Correlates?
Saxena et al, Am J Psych, 2004
From: Anderson et al. Reasons to Accumulate Excess. Home Health Care
Services Quarterly, 27(3), 2008
Treatment of Hoarding
• Pharmacotherapy
• Cognitive-Behavioural Therapy (CBT)
• Combined Multi-Modal Treatment
Meds OR CBT?
•
•
•
•
•
•
Issues to Consider in Initiating
Treatment
Severity
Consider
Insight
Comorbidity
CBT
Personality factors
For Every
Motivation
Patient!
Availability of treatment
OCD: Choice of Medications
First Line
• SSRIs (Prozac, Luvox, Zoloft, Paxil, Celexa, Cipralex)
Second Line
• Clomipramine (Anafranil)
• Venlafaxine (Effexor)
•
Mirtazepine (Remeron)
Adjunctive Therapy
• Antipsychotics (risperidone, olanzepine,
quetiapine, *haloperidol)
* Only for patients with
2nd Line Adjunctive Therapy
poor insight, tics, or
schizotypal personality
• Topiramate, Pindolol, Memantine, Riluzole
• Gabapentin, D-amphetamine, weekly oral morphine, Tramadol,
Clonazepam
Drug Treatment for Hoarding
%
ASSUMPTION:
•hoarders do less well
with tx
60
50
40
EVIDENCE:
•results are mixed on
OCD-related hoarding
(Saxena et al, 2011)
•i.e. Saxena et al study
•Treated 12 weeks
with paroxetine <60
mg daily
Compulsive
Hoarding
Non-hoarding
OCD
Column1
30
20
10
0
ResponsePartial Response
Saxena et al, 2007
Pharmacotherapy General Principles
• Treatment goal: improvement, not
remission
• OCD response may be independent of
depression response
• Higher dosages better
• 6-10 week lag to initial response
• Adequate trials require 12-15 weeks
• should allow at least 6-10 weeks at maximal
dosage
CBT for
Hoarding
OCD: Psychological
Treatment
 Fear responses fade over time if there is no
real danger
 Avoiding feared situations
makes the fear stronger
 Rituals make the fear
stronger
 Staying in the feared
situation lessens the fear
From Swinson, 2001
Reinforcement process
• Immediate positive emotions reinforce
acquiring and saving
• Immediate negative emotions with
discarding lead to avoidance
• Avoidance prevents
– opportunity to test beliefs
– development of alternative beliefs
Steketee & Frost, 2007
CBT for Hoarding
Core components:
 Psychoeducation
 Cognitive strategies to address
hoarding beliefs (meaning of
possessions)
 Must target
1. Acquiring
2. Discarding
3. Clutter
 Organizing/decision making (associated
with information processing deficits)
Steketee & Frost, 2007; Muroff et al, 2009
Treatment rules
• Therapist does not touch possessions without
permission
• All decisions made by the client
• Only Handle It Once
• Categories established first
• Help client establish own rules for saving and
discarding
• Clients must think aloud while sorting
possessions
• Treatment proceeds systematically
• In = Out
Steketee & Frost, 2007
Assessing Potential
Hoarders
• Questions to ask someone who acknowledges
“clutter”:
– Are your belongings in piles along the sides of
some/most rooms? How high?
– Are you limited to pathways in some rooms?
– Or are you walking on “goat paths” over piles?
– Are any rooms so cluttered that they’re difficult to
use/unusable? i.e. no longer sleeping in bed, kitchen too full to
use, no access to bathtub?
– Do you feel your clutter is a problem?
– Are you willing to work on getting rid of things?
Example of hoarding
hierarchy
Item
Fear (SUDS)
• Discarding audio recorded information
100
• Discarding children’s old school work
90
• Discarding old cards, letters
70
• Discarding ‘other purchases’ receipts
60
• Discarding old grocery store receipts
50
• Not bringing medical information home
40
• Not bringing home community flyers found
in public places
25
E.g. Categorization and
sorting
• Categorize unwanted items
– Trash, recycle donate, sell, undecided
– Develop list of items to be removed
– Develop action plan for removing items
• Define categories for saved objects
– Keep similar items together
– Choose limited number of locations for
each category
– Help client select final locations for
categories of items
Steketee & Frost, 2007
Experiment example – throw
out top of lost game board box
• Prediction 1 if I throw this away, it will
feel like death
• Prediction 2 if I throw it away, I will feel
this way (like death) forever
• One minute after discarding
– SUDS 100, but it does not feel like death
• 24 hours after discarding
– SUDS 10, it doesn’t bother me much at all
Steketee & Frost, 2007
Conclusions and new
hypotheses
• Neither prediction came true
• New hypotheses
– The thought of throwing things away is
worse than doing it
– If I throw something away that I am deathly
afraid of discarding, it will not feel as bad
as I think, and the bad feeling will not last
as long as I think
Steketee & Frost, 2007
Personal Rules for Acquiring
• I must have
– An immediate use for it
– Time to deal with it appropriately
– Money to afford it comfortably
– Space to put it
Steketee & Frost, 2007
Acquiring Hierarchy
Walking out without the object
Walking away from item
Putting object back
Touching object you want
Seeing something you want
Walking into store
Standing outside store
Driving past a store
85
80
75
65
50
35
25
10
Treatment of Hoarding
• Older studies report poor response to CBT in
hoarders
• Tolin, Frost, Steketee (2007) reported good
results targeting multiple factors:
1.
2.
3.
•
Disorganization
Compulsive acquisition
Difficulty discarding
Patients received 26
sessions, home visits
• Muroff et al (2009)
report good outcome
with group CBT +
2 home visits
Treatment of Hoarding
Biblio-based support group
helps hoarders!
N=18 and N=11 received
13 group sessions reviewing
chapters from Buried in
Treasures (Tolin, Frost & Steketee,
2007)
Hoarding sx ↓ 23-28%
61% rated themselves as
“much” or “very much”
improved
Frost, Pekareva-Kochergina, Maxner, BRAT, 2011
When Hoarding
Compromises Safety....
• Forced “clean out” is the last resort
– i.e. when poses fire/health hazard (vermin,
rodents, toxins, or risk of falls)
– POOR outcome long-term
• Consider risk management approach if
possible
– Slow gradual steps to establish trust,
working relationship
– Gradual reduction of risk
Harm Reduction Approach
HR focuses on decreasing harmful
consequences of high-risk behaviors
(rather than stopping behaviors)
Family-based HR for hoarders may be
advantageous:
Many hoarders refuse treatment
Over-emphasis on discarding may
exacerbate condition
The problem is often too big for one
person to manage
Tompkins, J of Clinical Psychology: In Session, 2011
Massachusetts Department of Developmental Services Risk Management
Assessment Tools
Suggested Readings
• Buried in Treasures
– Tolin, Frost & Steketee, Oxford University Press,
2007
• Overcoming Compulsive Hoarding
– Neziroglu, Bubrick & Yaryura-Tobias, New
Harbinger Press, 2004
• Compulsive Hoarding and Acquiring (client
and therapist workbooks)
– Steketee & Frost, Oxford University Press, 2007
• Digging Out
– Tompkins, New Harbinger Publications,
2009
Target the Whole Picture…
• Psychoeducation for the client AND family
• Set appropriate expectations re
improvement/recovery
• Discuss accommodation
• Multidisciplinary approach!
• Support, support, support
case management
home making
COTA
Meals on Wheels
support groups
day treatment
Sunnybrook Clinic for OCD
& Related Disorders
• Consultation service
– General service
– Research stream
• Group CBT treatment
– OCD
– TTM & compulsive skin picking
– ? Hoarding, BDD, others
Referrals:
•Laura Toniutti
•Ext 6832
•Fax 416-480-6878
OCD Research:
•Evan Newton
•Ext 3864
• Research
– Genetics and neurobiology of OCD & related
disorders
– Treatment outcome
Summary
• Hoarding likely common,
chronic, frequently severe
• Hoarding becoming viewed as
an independent disorder which is
sometimes associated with OCD
• Poor insight, unwillingness to accept help
may limit outcome in community
• Etiology is poorly understood,
multifactorial, may be linked to frontal lobe
dysfunction
Summary
• Treatment may help
– Drug treatment
– CBT
– Combined approaches
• Establish realistic treatment goals:
improvement, not remission
• Long-term treatment often necessary
• Consider long-term care/non-drug
alternatives in very refractory cases