Hoarding in Older Hoarding in Older

Adults: What You Need Adults: What You Need

to Know!to Know!Peggy M.A. Richter, MD, FRCPC

Director, Clinic for OCD and Related DisordersAssociate Professor of Psychiatry, University of TorontoPeggy.Richter@sunnybrook.ca

ObjectivesObjectives

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

DisclosuresDisclosures

In the last 3 years:In the last 3 years:

• On National Advisory Board for OCD for On National Advisory Board for OCD for LundbeckLundbeck

• Honoraria from LundbeckHonoraria from Lundbeck

• Research fellow funded by Eli LillyResearch fellow funded by Eli Lilly

• Research studies funded by LundbeckResearch studies funded by Lundbeck

The Collyer Brothers

OCD - DiagnosisOCD - Diagnosis ObsessionsObsessions

persistent unwanted thoughts, images, or impulses Intrusive, uncontrollable/excessive provoke anxiety

CompulsionsCompulsions repetitive behaviours or mental acts performed in response to an obsession, or in ritualistic

fashion intended to reduce discomfort or prevent feared event

SeveritySeverity: : symptoms must causesymptoms must causemarked distressoccupy > 1 hour/day

OR significantly interfere with functioning

Summerfeldt, Antony, Downie, Richter and Swinson 1997

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 Washing Repeating Ordering Counting Hoarding Miscellaneous

80.7%

63.7%

55.5%

40.1%

35.2%

28.0%

59.3%

Is Hoarding OCD?Is Hoarding OCD?

Hoarding ‘Obsessions’

• Intense preoccupation with belongings

However:• Not intrusive• Not resisted or unwanted• Not distressing

Hoarding ‘Compulsions’

• Acquisition/sorting /protection of possessions

However:• Acquisition/collecting of

things generally enjoyable• Not generally ritualistic• Not distressing

Rachman, Elliott, Shafran & Radomsky, BRAT, 2009

Definition of HoardingDefinition of Hoarding1.1. Persistent difficulty discarding or parting with Persistent difficulty discarding or parting with

possessions, regardless of their actual valuepossessions, regardless of their actual value

2.2. A living space sufficiently A living space sufficiently

cluttered in a manner that cluttered in a manner that

precludes activities for which precludes activities for which

the space was designedthe space was designed

3.3. Significant distress or impairment in functioning Significant distress or impairment in functioning caused by hoarding caused by hoarding (including maintaining a safe environment (including maintaining a safe environment for self and others)for self and others)

4.4. Hoarding not caused by other mental disorders (e.g. dementia, BAD, MDE) or a Hoarding not caused by other mental disorders (e.g. dementia, BAD, MDE) or a general medical condition (e.g. brain injury, cerebrovascular disease)general medical condition (e.g. brain injury, cerebrovascular disease)

Specify: Specify: With Excessive AcquisitionWith Excessive Acquisition

Insight (Good/poor/absent)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 The OCD SpectrumSpectrum

HoardingHoarding

Manifestations of Manifestations of Hoarding:Hoarding:

1. Compulsive Acquiring

2. Saving

3. Disorganization

Steketee & Frost, 2007

Manifestations of Manifestations of Hoarding: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 BuyingCompulsive Buying(compulsive shopping, (compulsive shopping,

oniomania)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 Manifestations of Hoarding: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 Manifestations of Hoarding: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 Characteristics of HoardingHoarding

• 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 Characteristics of HoardersHoarders

• 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...

Samuels et al, 2008

-Community-based study of 742 individuals-prevalence of hoarding was 3.7%, 5.3% weighted prevalence

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 SyndromeDiogenes 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 SyndromeDiogenes 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 Features of Diogenes SyndromeSyndrome

• 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 illnesscardiac failure bronchopneumonia

pulmonary embolism Parkinson’s disease

osteoarthriitis gangrene

malignancy leukemia

cervical spondylosis 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 Not all hoarders have a mental condition…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 The health burden of hoardinghoarding

What is Hoarding???What is Hoarding???

• OCD?• complication of multiple aging-related conditions?• independent condition?

Why do people hoard?Why do people hoard?

Learning Theory

Genetic

Cognitive

Neurobiology

LIFE EXPERIENCE

Behavioural

Ethological

“Genetics play a large part in it…for example, if your parents didn’t have any children, you won’t either!”

Is Hoarding Genetic?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 OCDBrain Structures Central to OCDThalamus

Striatum:PutamenCaudateAnterior

CingulateAnteriorCingulate

CorpusCallosum

Thalamus

PrefrontalCortex

from Rosenberg et al., 2000

Do OCD Dimensions Have Do OCD Dimensions Have Differing Neuroanatomical Differing Neuroanatomical

Correlates?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 HoardingTreatment of Hoarding

• Pharmacotherapy

• Cognitive-Behavioural Therapy (CBT)

• Combined Multi-Modal Treatment

Meds OR CBT?Meds OR CBT?Issues to Consider in Initiating Issues to Consider in Initiating

TreatmentTreatment• SeveritySeverity

• InsightInsight

• Comorbidity Comorbidity

• Personality factorsPersonality factors

• MotivationMotivation

• Availability of treatmentAvailability of treatment

Consider

CBT

For Every

Patient!

OCD: Choice of MedicationsOCD: Choice of MedicationsFirst LineFirst Line• SSRIs (Prozac, Luvox, Zoloft, Paxil, Celexa, Cipralex)

Second LineSecond Line• Clomipramine (Anafranil)

• Venlafaxine (Effexor)• Mirtazepine (Remeron)

Adjunctive TherapyAdjunctive Therapy • Antipsychotics (risperidone, olanzepine, quetiapine,

*haloperidol)

2nd Line Adjunctive Therapy2nd Line Adjunctive Therapy • Topiramate, Pindolol, Memantine, RiluzoleTopiramate, Pindolol, Memantine, Riluzole• Gabapentin, D-amphetamine, weekly oral morphine, Tramadol, ClonazepamGabapentin, D-amphetamine, weekly oral morphine, Tramadol, Clonazepam* Only for patients

with poor insight, tics, or schizotypal personality

Drug Treatment for Hoarding

ASSUMPTION:•hoarders do less well with tx

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 Saxena et al, 2007

%

Pharmacotherapy - Pharmacotherapy - General PrinciplesGeneral 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 CBT for HoardingHoarding

OCD: Psychological OCD: Psychological TreatmentTreatment

Fear responses fade over time if there is no real Fear responses fade over time if there is no real

dangerdanger

Avoiding feared situations Avoiding feared situations

makes the fear strongermakes the fear stronger

Rituals make the fear Rituals make the fear

strongerstronger

Staying in the feared Staying in the feared

situation lessens the fearsituation 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

H a b i tu a t io n

0

1 0

2 0

3 0

4 0

5 0

6 0

7 0

0 1 0 2 0 3 0 4 0 5 0 6 0 9 0 1 2 0

1 s t E R P7 t h E R P2 0 t h E R P

SUD

S

T im e ( m in u te s )

CBT for HoardingCore components: Psychoeducation Cognitive strategies to address

hoarding beliefs (meaning of possessions)

Must target1. Acquiring 2. Discarding 3. Clutter

Organizing/decision making (associated with information processing deficits)

Steketee & Frost, 2007; Muroff et al, 2009

Treatment rulesTreatment 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 Example of hoarding hierarchyhierarchy

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 E.g. Categorization and sortingsorting

• 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 itemsSteketee & Frost, 2007

Experiment example – throw Experiment example – throw out top of lost game board out top of lost game board

boxbox• 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 Conclusions and new hypotheseshypotheses

• 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 AcquiringPersonal 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 HierarchyAcquiring Hierarchy

Walking out without the objectWalking away from itemPutting object backTouching object you wantSeeing something you wantWalking into storeStanding outside storeDriving past a store

8580756550352510

Treatment of HoardingTreatment of Hoarding• Older studies report poor response to CBT in hoarders • Tolin, Frost, Steketee (2007) reported good results

targeting multiple factors:1. Disorganization

2. Compulsive acquisition

3. Difficulty discarding• Patients received 26

sessions, home visits• Muroff et al (2009)

report good outcome with group CBT + 2 home visits

Treatment of HoardingTreatment of HoardingBiblio-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 When Hoarding Compromises Safety....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 ApproachHarm Reduction ApproachHR 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

Assessment Tools Massachusetts Department of Developmental Services Risk Management

Suggested ReadingsSuggested 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 COTA

home making Meals on Wheels

support groups day treatment

Sunnybrook Clinic for OCD Sunnybrook Clinic for OCD & Related Disorders& Related Disorders

• Consultation service– General service– Research stream

• Group CBT treatment– OCD– TTM & compulsive skin picking– ? Hoarding, BDD, others

• Research– Genetics and neurobiology of OCD & related

disorders– Treatment outcome

Referrals:•Laura Toniutti•Ext 6832•Fax 416-480-6878

OCD Research:•Evan Newton•Ext 3864

SummarySummary• 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

SummarySummary• 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