Transcript Hoarding and Elderly Clients - SiteTurbine by RainStorm Consulting

Gail Steketee, Ph.D.
Dean and Professor
Boston University School of Social Work
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Hoarding disorder (HD)
diagnosis
Hoarding symptoms and
features, safety risks
Assessing hoarding
Model for understanding
HD
Treatment strategies
A. Persistent difficulty discarding or parting
with possessions, regardless of their actual
value.
B. Due to a perceived need to save the items
and distress associated with discarding them.
C. Possessions clutter active living areas and
compromise their intended use. Living areas
may be uncluttered due to intervention by
others (e.g., family members, cleaners,
authorities).
D. Hoarding causes clinically significant
distress or impairment in social,
occupational, or other important areas of
functioning (including maintaining a safe
environment for self and others).
E. Not attributable to another medical
condition (e.g., brain injury, cerebrovascular
disease, Prader-Willi Syndrome).
F. Not better accounted for by symptoms of
other disorders, such as OCD, Depression,
Schizophrenia, Dementia, Autism Spectrum.
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Specify if: “With Excessive
Acquisition: If symptoms
are accompanied by
excessive collecting or
buying or stealing of items
that are not needed or for
which there is no available
space.”
Specify if:
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Good or fair insight: Recognizes that
hoarding-related beliefs and behaviors
(pertaining to difficulty discarding items,
clutter, or excessive acquisition) are
problematic.
Poor insight: Mostly convinced that hoardingrelated beliefs and behaviors are not
problematic despite evidence to the contrary.
Absent insight (Delusional beliefs about
hoarding): Completely convinced that
hoarding-related beliefs and behaviors are
not problematic despite evidence to the
contrary.
Feature
Collecting
Hoarding
Object
content
Focused; cohesive
themes, few obj types
Unfocused; lacks theme,
many different objects
Acquisition
process
Unstructured; little planning
or focused searching
Very common (~90%), free
and purchased items
Low; disorganized clutter
Presence of
distress
Structured, planned and
focused searches
Less common; mainly
purchased items
High; items arranged,
stored and/or displayed
Rare;(e.g., finances);
generally pleasurable
Social
impairment
Minimal; social activities Mild to severe; relationship
often part of collecting conflict, social withdrawal
Occupational
interference
Rare
Excessive
acquisition
Level of
organization
Common due to clutter, diff.
discarding, not acquiring
Common
* Adapted from Nordsletten, Fernández de la Cruz, Billotti, Mataix-Cols (2013). Finders keepers: the features differentiating hoarding
disorder from normative collecting. Comprehensive Psychiatry, 54, 229-37.
Sentimental –
“This represents my life. It’s part of me.”
 Instrumental –
“I might need this. Somebody could use
this.”
 Intrinsic –
“This is beautiful. Think of the
possibilities!”
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Homes cluttered
with objects of
mixed value
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Churning
behavior
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Out of sight fears
◦ Chronic and age-related medical illnesses
(Ayers et al., 2010; Ayers et al., 2014).
◦ Medication and diet mismanagement leads
to worsening medical conditions (Ayers, Schiehser, Liu,
& Wetherell, 2012a; Diefenbach, DiMauro, Frost, Steketee, & Tolin, 2012; Kim et al., 2001).
◦ Significant impairment in activities of daily
living - move about in the home, find
important items, eat at a table, use the
kitchen sink, prepare food, sleep in a bed
(Ayers et al., 2012; Diefenbach, et al., 2012; Steketee, Schmalisch, Dierberger, DeNobel, &
Frost, 2012).
◦ Premature relocation to senior housing or
eviction; risk of homelessness (Whitfield, Daniels, Flesaker,
& Simmons, 2011)
Frost et al. (2000)
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Social isolation (Ayers et al., 2010; Kim et al., 2001)
Strained relationships (Tolin et al., 2008)
◦ Family, friends
◦ Landlords, neighbors
Legal and financial problems
◦ Credit card debt
◦ High expenses – buying, storage unit fees
◦ Property damage - loss of home investment
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Death in
house fires 6%
8 times the
cost of
ordinary fires
77% are men
Nearly 40%
are 65 or
older
Frost et al. (2000)
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North America
◦ US, Canada
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Europe
◦ UK, France, Germany, Netherlands, Italy
◦ Poland, Turkey
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Africa
◦ Egypt, South Africa
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South America
◦ Brazil, Costa Rica
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Asia
◦ Japan, Singapore
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Recent estimates- 4-5% in adults
◦ US – 5% Samuels et al. (2008)
◦ UK – 2% Iervolino et al. (2010)
◦ German – 4.6% Mueller et al. (2009)
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More common among older people and those
with low incomes
Among elder service organizations:
◦ 15% at Elders at Risk Program, Boston 15%
◦ 10-15% at Visiting Nurse Assn., NYC
◦ 30-35% at Community Guardianship, NYC
2/3 of hoarding begins before age 20
30
26.6
24.1
25
20
13.8
15
10.8
10
5
8.1
3.7
4.8
4.4
2.5
0.7
0
<5
10
15
20
25
30
35
40
45
50
0.1
55
0.1
60
0.1
65
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
Tolin DF, et al. Depress Anxiety. 2010.
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15% of nursing home residents and 25% of
community day care elder participants hoarded
small items (Marx & Cohen-Mansfield, 2003)
Rate of hoarding among elders in private and
public housing is unknown, but some frequency
counts are available:
◦ Elders at Risk Program, Boston
◦ Visiting Nurses Association., NYC
◦ Community Guardianship, NC
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15%
10-15%
30-35%
Some of the worst cases are reported among
elderly people
60
50
40
30
20
10
0
Major
Dep.
GAD
Social
PTSD
Phob
Frost et al. (2010)
Sub.
Abuse
ADD
30%
27%
% of ADs with hoarding
25%
20%
14%
15%
11%
10%
5%
0%
0%
0%
Panic
Specific Phobia
OCD
Social Anxiety
GAD
Tolin, D. F., Meunier, S. A., Frost, R. O., & Steketee,
G. (2011). Journal of Anxiety Disorders, 25, 43-48.
50%
40%
30%
20%
10%
0%
Fire
Falling
Unsanitary
Medical
Kim, Steketee, & Frost (2001). Health &
Social Work. 26:176-184
Ambulation
60%
50%
40%
30%
20%
10%
0%
Steketee et al., Health Soc Wk 2001; 26:176-184
80%
70%
60%
50%
None
40%
Mild
30%
Severe
20%
10%
0%
Cognitive
Problems
Memory
Problems
Poor Insight
Kim, Steketee, & Frost (2001). Health & Social Work. 26:176-184
80%
70%
60%
50%
40%
30%
20%
10%
0%
Intervention
By Whom
Outcome
Kim, Steketee, & Frost (2001). Health & Social Work. 26:176-184
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Increased social service provider load for:
◦ Public health departments
◦ Housing and inspection services
◦ Housing managers & landlords
◦ Elder service agencies
◦ Mental health department
◦ Health care organizations
The time and money required to resolve
serious hoarding cases strains agency
resources
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Possible cognitive impairment
Need for assistance in physical ADLs
◦ Care and moving of the body
◦ Walking, bathing, dressing, toileting, brushing
teeth, eating
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Need for help with instrumental ADLs
◦ Activities that support independent living
◦ Cooking, cleaning, driving, communication via
phone or computer, shopping, tracking finances,
managing medications
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Not familiar/comfortable with psychiatric
treatment
Role of family members and other social
supports
Limited/fixed income
Multiple medications/multiple medical
providers
Possible negative life events (i.e., death of
spouse)
Risk of losing independent living status
Sanitation problems
79% of cases involved
multiple agencies
Frost et al. (2000)
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Diagosis
◦ Structured Interview for Hoarding Disorder (SIHD)
◦ Other MH conditions: SCID, ADIS, MINI
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Clinical Hoarding Interview (Steketee & Frost, 2014)
Hoarding Rating Scale (HRS)
Saving Inventory-Revised (SI-R)
Clutter Image Rating (CIR)
Activities of Daily Living-Hoarding (ADL-H)
Risk & Safety
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Family accommodation and burden
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◦ Home visit, HOMES, Home Environment Index
0
Not at all
Difficult
1
2
Mild
3
4
Moderate
5
6
Severe
7
8
Extremely
Difficult
1. Because of the clutter or number of possessions, how difficult
is it for you to use the rooms in your home?
2. To what extent do you have difficulty discarding (or recycling,
selling, giving away) ordinary things that other people would
get rid of?
3. Do you currently have a problem with collecting free things or
buying more things than you need or can use or can afford?
4. To what extent do you experience emotional distress because
of clutter, difficulty discarding or problems with buying or
acquiring things?
5. To what extent do you experience impairment in your life (daily
routine, job / school, social activities, family activities, financial
difficulties) because of clutter, difficulty discarding, or
problems with buying or acquiring things?
Tolin, D.F., Frost, R.O., & Steketee, G. (2010). Psychiatry Research, 30, 147152.
Can do
little
moderate
great
Unable
easily
difficulty
difficulty
difficulty
to do
1. Prepare food
1
2
3
4
5
2. Use refrigerator
1
2
3
4
5
3. Use stove
1
2
3
4
5
4. Use kitchen sink
1
2
3
4
5
5. Eat at table
1
2
3
4
5
6. Move around home
1
2
3
4
5
7. Exit home quickly
1
2
3
4
5
8. Use toilet
1
2
3
4
5
15. Find important
things (bills, tax forms,
etc.)
1
2
3
4
5
Activities affected by
hoarding problem
Frost, R.O., Hristova, V., Steketee, G., & Tolin, D.F. (2013). Activities of
Daily Living in hoarding disorder (ADL-H). Journal of Obsessive
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Safety
 Fire hazards, blocked exits, cluttered
stairways, room for emergency personnel &
equipment
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Squalid conditions
 Rotten food, insects, animal waste
 Cleaning and hygiene behavior
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Structural damage
Home Environment Index
HOMES
Frost & Hristova, J Clin Psychol 2011;67:456-466;
Rasmussen,, Steketee, Frost, Tolin, & Brown (in press). Community Mental Health Journal.
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Additional geriatric specific assessments:
◦ Depression and anxiety measures normed for use
with older adults
 Geriatric Depression Scale
 Geriatric Anxiety Scale
◦ Neurocognitive functioning (Montreal Cognitive
Assessment, Delis-Kaplan Executive Functioning
System)
◦ Additional Functional Measures (Functional Disability
Index)
MODEL FOR HOARDING DISORDER
Core beliefs &
vulnerabilities
Information
processing
Attachments &
Valuation of objects
Negative
Reinforcement
Emotions
Neg.
Pos.
Positive
Reinforcement
Saving &
Acquiring
Steketee, G., & Frost, R.O. (2003). Clinical
Psychology Review, 23, 905-927.
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Genetics
◦ Family history of hoarding
◦ Linkage studies
◦ Twin study
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Neural mechanisms
◦ FMRI studies
◦ PET studies
◦ Brain damage studies
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Evolutionary biology
◦ Hoarding by animals
◦ Nesting behavior
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Core Beliefs - low self-worth;
helplessness
Intermediate Beliefs - perfectionism
Depressed mood
Mental health co-morbidity
Early history of loss or traumatic
events
Poor health or disability
Physical constraints
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Attention
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Perception
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Categorization
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Association
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Memory
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Complex
Thinking
Decision-making Difficulties
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Beauty/aesthetics
Memory
Utility/opportunity
Sentimental
Comfort
Uniqueness
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Identity/potential
identity
Need for control
Concern over
mistakes
Responsibility/
waste
Completeness
Safety
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Positive Emotions
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Pleasure
Excitement
Pride
Relief
Joy
Fondness
Satisfaction
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Negative Emotions
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Grief/loss
Anxiety
Sadness
Guilt
Anger
Frustration
Confusion
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Distress
Decisions
Attending to clutter
Feelings of loss
Feelings of
vulnerability
Worries about memory
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Inviting people into the
home
Making mistakes
Losing opportunities
Losing information
Depression
Putting things out of
sight
MODEL FOR HOARDING DISORDER
Core beliefs &
vulnerabilities
Information
processing
Attachments &
Valuation of objects
Negative
Reinforcement
Emotions
Neg.
Pos.
Positive
Reinforcement
Saving &
Acquiring
Steketee, G., & Frost, R.O. (2003). Clinical
Psychology Review, 23, 905-927.
50%
45%
40%
35%
30%
25%
20%
15%
10%
5%
0%
Sust. Impr.
Impr. &
Relapse
No Change
Clutter
Worsened
Steketee et al., Health Soc Wk 2001; 26:176-184
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Hoarding predicted negative outcome of
SSRIs in OCD
Mataix-Cols et al. (1999)
Hoarding and non-hoarding OCD patients
respond similarly to paroxetine
◦ (But neither group improved greatly – 28% vs 32%
responder rate)
Saxena et al., (2007)
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Recent findings indicate that venlafaxine
may be beneficial for HD
Saxena et al. (2013)
Education and case formulation
 Determine values, set goals
 Enhance motivation
 Train skills for organizing, problem
solving, decision-making
 Practice discarding & non-acquiring
 Evaluate thoughts and beliefs
 Maintain new behaviors
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Individual, group or web-based
 Sessions and practice in office and
at home
 Practice in acquiring locations
 Family consultation
 Use of a coach
 Structured cleanout for severe
clutter - later in treatment using
experienced staff
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Costs of change
seem heavy
Benefits of change
seem small
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Values
◦ What you care most about?
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Personal goals
◦ What do you most want to do in the
remainder of your life?
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Short-term goals
◦ What would you like to accomplish in
the next year?
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To enjoy my instruments again
To create breathing space, order, and
beauty in my bedroom (esp. in front of the
closet)
To have a living room that a friend or family
could enter
To have a safe kitchen with working
surfaces
To take a bath
To remove bagged items
 Problem
solving
 Sorting
 Organizing
 Decision
making
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Determine usual attention span
Help client reduce and/or delay
distractibility
Use timer
Control visual field (cover distracting
areas)
Discuss ways to create structure
Regular appointments for sorting
Establish priorities
Divide projects into manageable steps
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Do I have an immediate use for this?
Can I get by without it?
Do I want it taking up space in my home?
Is this truly important or does it just
seem so because I am looking at it?
What are the advantages and
disadvantages of acquiring this?
Develop personal rules for acquiring must have:
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An immediate use for it
Time to deal with it appropriately
Money to afford it
Space to put it
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Bring box from home to sort in the office
Start with easier items, set aside harder ones
Ask client to talk aloud about decisions to
keep or remove (recycle, give away, trash,
sell)
Gradually reduce assistance with decisions
Weekly practice at home on most important
areas, work on easiest items first
Move sorted items to destination ASAP – no
looking back
Some office, but mostly home visits
for 1.5 – 2 hours
 ~40 sessions over 12 months
 Team approach - agency clinicians,
trained staff member
 Flexible treatment – interweave
skills training, exposure practice,
cognitive training
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Turner, Steketee, & Nauth (2010). Cog. & Behav. Pract., 17, 449-457.
Excluded patients with dementia and
serious personality disorders
 9 began; 6 completed (5 F, 1 M)
 Average age = 72 (range 56 – 86)
 Only 1 had no MH problems; 5 had
depression, 1 PTSD, 1 ADHD
 5 lived alone; 1 lived with roommates
 Physical health problems included
diabetes, overweight, arthritis, chronic
bronchitis, glaucoma, Parkinson’s
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Turner, Steketee, & Nauth (2010). Cog. & Behav. Pract., 17, 449-457.
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Humor and inspirational quotations
Schedule sorting times
Listen to music while sorting
Review progress via before and after photos
Review life goals, esp. as priorities change
with declining health
Reward self for work done - but not with
new items!
Balance homework with leisure
Turner, Steketee, & Nauth (2010).
Cog. & Behav. Pract., 17, 449-457.
Average reduction in clutter = 28%
Range = 17% to 46%
Clients
1
2
3
4
5
6
Mean
CIR %
Reduction
17%
20%
25%
29%
36%
46%
28%
Turner, Steketee, & Nauth (2010). Cog. & Behav. Pract., 17, 449-457.
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N=12
Standard CBT methods for 26 weekly
sessions; less flexible therapy
Only 3 (25%) improved by 30% or more, but
one relapsed; 9 (75%) did not improve
noticeably
Responders had previous psychotherapy,
high homework compliance and lower mean
age (68 v. 76)
Why the poor response?
Ayers et al. 2010, unpublished
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More health problems and safety risks like
falling and fire danger
Low insight, motivation and ambivalence
required strong relationship building
Deprivation history exacerbated some
clients’ worries about “saving necessities”
Downsizing homes provoked special
challenges:
◦ Who should receive cherished objects
◦ How to physically remove items
Cognitive therapy was less useful for those
with some cognitive decline
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Emphasize behavioral more than cognitive
therapy methods
Teach skills to improve cognitive functioning
◦ e.g., use calendar, to do lists & memory cues,
prepare to organize, encourage flexible thinking,
train problem solving
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Practice in session; arrange for help with
homework
Train new behavior habits to prevent relapse
 Brainstorming
 Strategy
verbalization
 Hypothesis testing
by looking for
disconfirming
evidence
 Set shifting/
maintenance
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9 women, 2 men
Mean age = 66, range 60-85
24 wks. individual therapy by licensed
psychologists
First 6 sessions on executive functioning
Next 16 sessions on exposure for
discarding and acquiring
◦ Approximately 12-25% home visits
Final 2 sessions on relapse prevention
Significant and large improvement in
measures of hoarding severity
 8 of 11 = treatment responders
 3 partial responders:
◦ narrowly missed full response criteria
◦ 3 had comorbid MDD; 2 had OCD.
◦ Had highest hoarding severity scores
before treatment (SI-R = 75, 71, 67).
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% Improvement
n=11
Measure
SI-R
38%
CIR
26%
Bedroom at initial home visit
(unable to sleep in bed)
Bedroom at session 18
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Randomized controlled trial in progress
33 participants are enrolled
 22 women; 11 men
 mean age 68; 12% ethnic minority
◦ 16 assigned to TAU (case management)
 (2 refused final assessments; 1 hospitalized for
psychiatric symptoms)
◦ 17 assigned to CREST condition (cog. rehab.)
 No participants dropped out
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Real world effectiveness
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Hoarding Disorder is common, chronic,
and debilitating for sufferers and family
members
Hoarding has unique biological,
cognitive, emotional, and behavioral
features
Medications for OCD have not been very
helpful
Specialized CBT reduces hoarding
symptoms in adults but requires
modification for older adults
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Structured assignments (esp. sorting) with
daily goals, scheduling and in-home
coaches were very helpful
Patients with comorbid disorders and severe
HD may require more intensive therapy
Group therapy increases social support, but
it is not clear how to use this for older
adults
How can we promote social support when
therapy ends?
More studies are needed with larger and
more diverse clients
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www.ocfoundation.org/hoarding
◦ Information, measures, therapy manuals,
referral, resources, hoarding task forces,
therapy referrals
www.abct.org therapy referrals
www.messies.com; www.childrenofhoarders.com
◦ Support groups
http://www.challengingdisorganization.org/
◦ Professional organizers who specialize in
chronic disorganization
Find local cleaning co. with sensitivity and
expertise in hoarding
Gail Steketee: [email protected]