Hoarding Disorder: To keep or not to

keep…is that a question?

NIRMALA DHAR, LCSW

OREGON HEALTH AUTHORITY

Nirmala.dhar@state.or.us

Learning Objectives

Participants will know the definition of hoarding and DSM-V criteria.

1

Participants will know about the prevalence, vulnerabilities and key features of this disorder.

2

Participants will gain knowledge about clinical and case management interventions for hoarding disorder.

3

BURIED

A TALE OF TWO BROTHERS

• The Collyer Brothers: Homer and Langley of New York City.

• They were found dead in their home in 1947, surrounded by 140 tons of collected items.

• City workers had to dig their way into the house to discover the bodies.

• Langley’s body took several days to discover.

WHAT IS HOARDING??

The acquisition of and inability to discard items even though they appear (to others) to have no value”.(Frost & Gross 1993)

A syndrome characterized by excessive collecting and saving behavior that results in cluttered living space and significant distress or impairment.

3 INGREDIANTS FOR HOARDING

• ACQUISITION→→

• SAVING→→→→ CLUTTER

• DISROGANIZATION→→

4 KEY ELEMENTS OF HOARDING

Excessive acquiring of possessions that appear to be useless or of limited value

Difficulty discarding

Clutter – living spaces that are cluttered as to preclude their intended use

Distress or Impairment in functioning due to hoarding & clutter

(Frost & Hartl, 1996)

COLLECTING VS HOARDING

COLLECTING

• Organization

• Mint condition

• Kept in specific areas

• Quality of life not compromised

• Pride

HOARDING

• Usually disorganized

• Takes over areas of the home

• Cause of distress

• Risk to health

• Safety concerns

DSM V CRITERIA FOR HOARDING DISORDER

Persistent difficulty discarding or parting with possessions regardless of actual value

Difficulty is due to perceived need to save the items due to distress associated with discarding

Accumulation of possessions that congest and clutter active living areas

Hoarding causes clinically significant distress or impairment ( interference) in social, occupational and other areas

DSM V CONTINUED….

2013 AMERICAN PSYCHIATRIC ASSOCIATION 10

Hoarding is not attributed to another medical condition (Brain injury, dementia)

Not explained by another mental illness

Diagnostic specifies: excessive acquisition, poor insight

Prevalence of Hoarding

5% prevalence in community surveys. That is about 16 million Americans.

Hoarding increased with age from 2.3% in the youngest to 6.2% in the oldest age groups.

Hoarding was four times as great in the poorest compared with the wealthiest households.

Prevalence

Average age of onset between 11 to 15 years old

Chronic and worsening course – important not to wait to intervene

Severity of hoarding increases with each decade of life

Symptoms are three times more prevalent in older adults ( ages 54-95) compared with younger adults (ages 34-44 years)

Average age for treatment is age 50

Women seek treatment more often then men

Risk & Prognostic Factors

Indecisiveness is a prominent feature of individuals who hoard and their first degree relatives

Individuals who hoard report retrospectively having experienced a traumatic event preceding onset or causing an exacerbation

Hoarding behavior is familial – 50% of adults who hoard report having a relative who also hoards

Psychiatric Co-morbid Problems

Depression (high co-morbidity ) – 50%

Social Phobia

Generalized Anxiety Disorder

Obsessive Compulsive Disorder

ADHD (more frequent in hoarders than OCD patients – Frost et al 2011)

Dementia

Personality Features – anxious/avoidant, dependent, Cluster C traits

IMPORTANT!

75% of individuals who hoard have either depression or anxiety.

These individuals are behaviorally de- activated with decreased motivation and clean up and clutter protocols become hard to implement.

Screen for depression and anxiety

Adverse Effects from Hoarding

Health problems – unsanitary living conditions

Safety threats – fire, falls, infestation, structural (weight of items), blocked egress

Interpersonal difficulties –with family members, neighbors, social isolation, poor personal hygiene

Legal problems – threat of eviction, child welfare involvement

Diminished self-esteem – shame, guilt

Work impairment or loss of employment

Public Health Hazard

• Severe fire hazard

• Blocks fire escapes

• Encourages insects & rodents in the neighborhood

• Safety – structural damage due to weight of accumulation

• Causes unhealthy living conditions in neighborhood

• Signals neglect of people & animals

• Building code violations

• Sanitation & odor nuisance from garbage, trash animal waste.

Characteristics of individuals who hoard

Difficulty organizing possessions

Usually strong positive feelings( joy, delight) when acquiring items

Strong negative feelings (guilt, fear, anger) when considering discarding items

Strong belief that items are valuable or useful

Feeling responsible for objects

Denial of problem even when clutter interferes with a person’s life ( From Boston University “Compulsive Hoarding Research Project)

ACQUIRING

Compulsive Buying – retail, online/web, home shopping network , garage/yard sales

Compulsive acquiring of free things – flyers/handouts, giveaways, trash pickups, dumpster diving

Passive acquiring – junk mail, food packaging, grocery bags

Clutter & Disorganization

Random piles of things ( Clutter, objects of mixed importance)

Fear of putting things out of sight ( visual processing very important)

Indecisiveness ( decision making difficulties are pervasive)

Churning (what if…., just in case….)

Fear of making wrong decision

Common Traits

Perfectionism : “I can’t get rid of this until I read and remember everything in this newspaper”(concerns over mistakes)

Indecisiveness :”If I file this magazine article I will never be able to find it or if…..”

Procrastination: “I won’t get rid of this newspaper today because it may have some useful information I am certain to need eventually”.

WHY DO PEOPLE HOARD?

VULNERABILITIES (genetic, family , early experiences, beliefs)

INFORMATION PROCESSING DEFICITS

MEANING/VALUE ASSIGNED TO POSSESSIONS

POSITIVE & NEGATIVE EMOTIONAL REACTIONS

REINFORCEMENT OF ACQUIRING AND SAVING BEHAVIORS

GOALS FOR TREATMENT AND HELP

Creating uncluttered space

Increasing appropriate use of space

Improve decision making skills

Improve organizational skills

Discard unneeded possessions and reduce acquisition

DECISION MAKING

• Indecisiveness is a hallmark of hoarding – may be a way of avoiding mistakes.

• Perfectionistic concern

• Hoarding is an avoidance behavior ( saving a possession allows the hoarder to avoid decision to throw it away thereby avoiding the worry that a mistake has been made).

• Often have impaired executive functioningThis Photo by Unknown Author is licensed under CC BY-NC-ND

ORGANIZATION

• Define category very narrowly thus almost all items have their own category and hence are important!

• Organizational problem is mixing of important and unimportant possessions – have trouble determining the relative importance of items from paychecks to gum wrappers

• EVERYTHING IS COMPELLING THERFORE HARD TO DISTINGUISH WHAT IS IMPORTANT AND WHAT IS NOT

This Photo by Unknown Author is licensed under CC BY-NC-ND

BEHAVIORAL AVOIDANCE

Saving possessions allows the hoarder to avoid loss of objects that he may need someday.

Hoarding prevents emotional upset from discarding

Hoarders save to avoid decision making – perhaps because of their excessive concern over mistakes

What if…..

Just in case….

SELF STATEMENTS TO LESSEN ANXIETY

• FEAR IS A BELIEF AND BELIEFS CAN BE CHANGED!

• BEAR THE DISCOMFORT IN ORDER TO ACHIEVE COMFORT

• FEELING ARE NOT FACTS

• NERVOUS SYMPTOMS AND SENSATIONS ARE DISTRESSING BUT NOT DANGEROUS

ABRAM Low 27

This Photo by Unknown Author is licensed under CC BY

ESTABLISH PERSONAL RULES FOR SAVING & ACQUIRING• I must have –

- an immediate use for it

- time to deal with it appropriately

- money to afford it comfortably

- space to put it

Raise the conversation about need versus want

Assure we all have rules for acquiring – what are some of your rules?

Questions to challenge erroneous beliefs (Frost& Steketee)

• How many do I already have?

• Do I need this one?

• Do I have an immediate use for this?

• Can I manage without it?

• Do I want this taking up space in my house?

• Do I have enough time to actually read this?

Exposure Therapy in Session

Discuss role of avoidance in maintaining hoarding problems

Explain the process of habituation

Exposure directly combats avoidance

Develop a hierarchy

Establish rules to use during exposure (e.g. therapist may not touch any possessions)

Repetition of exposure treatment rationale necessary

Wrap up exposures with “lessons learned

Exposure Response Prevention (ERP)

Exposure – practice of sorting and discarding is the only way to overcome avoidance and begin to solve the clutter problem.

Anxiety will increase during exposure – work through the stress and prevent natural response.

Work on easier locations (in the home) and on easier objects – set aside harder objects in a box for later. Identify “low hanging fruits”.

Bratiotis, 2011

BEHAVIORAL STRATEGIES

BREAK TASKS INTO SMALL MANAGEBALE PARTS WITH VERY SPECIFIC TIMELINES

GIVE THESE INSTRUCTIONS VERBALLY AND IN WRITING

ENCOURAGE USE OF A TIMER

ENCOURAGE PRACTICE OF DISCARDING A LTTILE EVERY DAY

THIS AIDS WITH DECISION MAKING AND PROBLEM SOLVING

Lessons Learnt from Exposure Therapy

• Example:

• 1. That I can let go of items.

• 2. Keeping things does not help me with my hoarding.

• 3. I can deal with distress from discarding

BEHAVIORAL STRATEGIES FOR ERP

Break tasks into small, manageable parts with very specific timelines

Deliver these instructions verbally and more importantly in writing – an action plan

Encourage use of a timer

Encourage practice of discarding little everyday - habituation

This aids with decision making and problem solving

GOALS OF HARM REDUCTION

• Keep people safe and comfortable in their homes

• Focus on removing possessions away from high risk areas

• Focus on creating systems to minimize acquisition and maintain safety

• Focus on creating systems to enhance effective living

• Focus on managing other problems and conditions that influence harm potential

HARM REDUCTION STRATEGIES

HARM REDUCTION TARGET• Keep back door clean

• Decrease incoming paper

• Eliminate old and unsafe foods from freezer and refrigerator

• Keep stove top clean

• Protect important documents and decrease late payments and charges

HARM REDUCTION STRATEGY• Maintain a clean path to back door and

clean exit (door can open completely)

• Limit magazine subscriptions to 2 per year

• Only buy food for the week discard spoiled food older than 4 months

• Keep 24 inch clearance around stove top(no clutter)

• Set up filing system for important documents

• Set up auto payment system or box for bills,

• checkbook, stamps

Goals for Case Management

• Preservation of Housing

• Reduction in clutter

• Increasing client’s capacity to manage possessions effectively moving forward

• Skill Building and Awareness of Triggers

Asking questions about hoarding

• Are you reluctant to have people come over?

• Are you able to use your kitchen appliances?

• Are you able to sleep in your bed?

• Can you use your shower?

• Have you fallen over your clutter?

Asking Questions..

• Why are you keeping this item / Can you tell me

about this item?

• What might happen if this was lost or was thrown

away?

• How do you feel about your bedroom/home/space?

• How were you feeling / what were you thinking

about before buying this item?

• How did you feel after buying it?

How To Talk About Hoarding

In-Correct

• This place is a mess!

• How can you live like this?

• You have to throw this junk away

Correct

• You need an egress path of 36 inches throughout your home.

• You are not allowed to have papers on the stove because of potential fire.

• Your piles must be reduced to no more than 4 feet to prevent any avalanches of your items.

Create Common Goals

Reframe goals:

- How can we help you meet the court order?

- How can we keep the housing authority off your back?

- How can we satisfy your family’s concerns as well as your own needs?

Creative alternatives:

- Make money by selling items or help others by giving away

CREATE GOALS COLLABORATIVELY

• UNDERSTAND WHY YOU SAVE THINGS

• CREATE LIVING SPACE YOU CAN USE

• FIND YOUR THINGS

• IMPROVE YOUR DECISION MAKING SKILLS

• REDUCE ACQUIRING AND ENJOY OTHER ACTIVITES

• REDUCE CLUTTER

IDENTIFYING VALUES AND PERSONAL GOALS

• I WANT TO BE SAFE IN MY HOME

• I WANT TO BE ABLE TO FIND THINGS

• I WANT TO BE ABLE TO COOK IN MY KITCHEN

• I WANT TO BE ABLE TO INVITE FRIENDS TO MY HOME

• I WANT A BETTER RALATIONSHIP WITH MY FAMILY

ASK “WHAT DO YOU VALUE

MOST IN LIFE? LIST FOUR 0R FIVE THINGS”:

MOTIVATION BOOSTERS : BALANCE OF CHANGE SCALEREASONS TO CHANGE REASONS NOT TO CHANGE

This Photo by Unknown Author is licensed under CC BY-SA

Specify objectives and timelines

• REMEMBER – many people who hoard have a hard time with problem solving, decision making, attention and categorization.

• Delivering instructions that are broken down into small steps and tasks both verbally and in writing is a best practice.

• Assign homework and check back on it.

QUESTIONS TO HELP WITH DECISION MAKING

HOW MANY DO I ALREADY HAVE AND IS THAT ENOUGH?

DO I HAVE ENOUGH TIME TO ACTUALLY USE AND READ THIS?

HAVE I USED THIS IN THE PAST?

DO I HAVE A SPECIFIC PLAN TO USE THIS ITEM?

DOES THIS SEEM IMPORTANT JUST BECAUSE I AM LOOKING AT IT NOW?

DO I REALLY NEED IT? DO I HAVE SPACE FOR IT?

WILL NOT HAVING THIS HELP ME SOLVE MY HOARDING PROBLEM?

PREPARING FOR DE-CLUTTERING

• KEEP

• MAYBE

• DISCARD

SORTING AND REMOVING STUFF

• DECISION: SHOULD I KEEP IT OR LET GO OF IT?

• DECISION: TO WHAT CATEGORY DOES THIS THING BELONG?

• DECISION: WHERE SHOULD IT GO?

• ACTION: MOVE THE ITEM TO ITS FINAL DESTINATION

This Photo by Unknown Author is licensed under CC BY-NC-ND

ROOM MAPPING

DIVIDE HOME INTO ROOMSDIVIDE

PRIORITIZE TARGET ROOMSPRIORITIZE

DIVIDE ROOMS INTO SECTIONDIVIDE

BEGIN WITH GREATEST AREA OF RISK OR HIGHEST MOTIVATIONBEGIN

CREATE A STAGING AREA FOR SORTINGCREATE

Decision Tree

Save orDiscard

Save : id.category

Move toInterim

spot

Move toFinalplace

Discard: idcategory

Move toInterim

spot

Move toFinalplace

Trash

Re-cycle

charity

Sell

Response to Disorganization & Clutter• Select one room to target

• Target an area within the room

• Assess possession within that area

• Create simple categories – keep, give away, discard.

• Set priorities

• 10 second rule – prevent churning

• Never touch possessions without permission.

• OHIO ( only handle it once) – prevent churning (indecisiveness)

• Mirror the language used by the client for their possessions e.g. If they call it their treasure, refer to it as treasure.

Organizational Strategies

• Categories to keep & discard

• Filing system

• Places to discard & plan for discarding (Goodwill, recycle, Habitat)

• Adequate storage

• Items for sorting (containers, files, shredder, etc.)

• Developing rule system – like with like

• Everything has final resting place – if none, discard

• Staging areas

• Maintenance system

• Keeping cleared areas clean

CHANGING THOUGTHS ABOUT ACQUIRING

Do I already own something similar?

Am I buying this because I feel bad right now?

Will I regret getting this in a week?

Could I manage without it?

SETTNG RULES FOR NOT ACQURING

I CANNOT GET THIS UNLESS:

I PLAN TO USE IT WITHIN THE NEXT MONTH

I HAVE ENOUGH MONEY RIGHT NOW TO PAY FOR IT

I HAVE A PLACE TO PUT IT SO IT DOES NOT ADD TO CLUTTER

I AM SURE I TRULY WANT IT AND WILL NOT RETURN IT

GETTING THIS ITEM IS CONSISTENT WITH MY GOALS AND VALUES FOR MY LIFE

I HAVE A TRUE NEED NOT JUST A WISH FOR THIS ITEM

Reasonable Accommodation

Persons with hoarding problems that meet disability criteria may request reasonable accommodation from their housing provider.

They may ask more time due to their disability to remove clutter to meet lease violation

Housing provider has legal right to request verification about person’s disability or that accommodation is necessary

If the clutter poses life threatening hazard( fire, structural or contamination) the tenant has to deal with it immediately

Examples of Lease Violations

Odor

Infestation

Blocking Exits

Fire Hazard – e.g. papers near stove, heating vents, storing combustible items

Animals – multiple, feces, untended litter, damage to carpet

Garbage

Unusable bathroom

Structural damage

Health/Fire Dept Citations

Forced Intervention

Last resort – this does not address the root causes of

hoarding

One room clean out Model

Total clean-out Model

Official monitoring – fire

inspector, housing authority

Assessment Tools

Clutter Image Rating Scale (CIR) ( Steketee & Frost 2006)

HOMES Multi-disciplinary Hoarding Risk Assessment (Bratiotis, 2009)

Hoarding Rating Scale (HRS) – Tolin, Frost & Steketee

Uniform Inspection Checklist (UCI)-http://thecluttermovement.com/wp-content/uploads/2018/06/UIC-Quick-Reference-combined.pdf

Reference Books

Compulsive Hoarding & Acquiring : Therapist Guide – Steketee & Frost

Compulsive Hoarding & Acquiring: Workbook – Steketee & Frost

Stuff: Compulsive Hoarding & the Meaning of Things – Steketee & Frost

Buried in Treasures – David F. Tolin, Randy Frost & Gail Steketee

The Hoarding Handbook: A guide for Human Service Professionals – Bratiotis & Steketee

Effective Hoarding Intervention: A manual for non-clinical professionals – Jesse C. Edsell-Vetter

RESOURCES

RESOURCES FOR THERAPY

NW ANXIETY INSTITUTE (503)542 7635

PACIFIC UNIVERSITY PSYCHOLOGY & COMPREHENSIVE HEALTH CLINICS (503)352 2400

BURIED IN TREASURE GROUPS – CONTACT JILL.WILLIAMS@MULTCO.US