gail steketee, ph.d. dean and professor boston university school of social work
TRANSCRIPT
When Homes are Buried in Treasures: Aging and Hoarding
Behavior
The Tenth Annual University of Maine Geriatrics Colloquium
Gail Steketee, Ph.D.Dean and Professor
Boston University School of Social Work
Disclosures: Books by Oxford &
Houghton-Mifflin-HarcourtGrant Funding from
IOCDF, NIMH
Hoarding disorder (HD) diagnosis
Hoarding symptoms and features, safety risks
Assessing hoarding Model for understanding
HD Treatment strategies
Road Map for HD
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).
DSM-5 Criteria for Hoarding Disorder (HD) (APA, 2013)
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.
DSM-5 Criteria for HD (cont.)
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.”
Acquisition Specifier
Specify if: 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 hoarding-related 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.
Insight Specifier
Feature Collecting Hoarding Object content
Focused; cohesive themes, few obj types
Unfocused; lacks theme, many different objects
Acquisition process
Structured, planned and focused searches
Unstructured; little planning or focused searching
Excessive acquisition
Less common; mainly purchased items
Very common (~90%), free and purchased items
Level of organization
High; items arranged, stored and/or displayed
Low; disorganized clutter
Presence of distress
Rare;(e.g., finances); generally pleasurable
Common due to clutter, diff. discarding, not acquiring
Social impairment
Minimal; social activities often part of collecting
Mild to severe; relationship conflict, social withdrawal
Occupational interference
Rare 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.
Reasons for Saving - same as for all of us
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!”
Homes cluttered
with objects of
mixed value
Churning
behavior
Out of sight
fears
Disorganization
Hoarding Consequences in Older Adults
◦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)
Mobility Hazards
Hoarding related Consequences
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
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)
Profiles of Hoarding Fires
North America◦ US, Canada
Europe ◦ UK, France, Germany, Netherlands, Italy◦ Poland, Turkey
Africa◦ Egypt, South Africa
South America◦ Brazil, Costa Rica
Asia◦ Japan, Singapore
Hoarding Crosses Cultures
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)
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
Epidemiology
0
5
10
15
20
25
30
3.7
13.8
26.6
24.1
10.8
8.1
4.84.4
2.5
0.7000000000000010.10.10.1
<5 10 15 20 25 30 35 40 45 50 55 60 65
2/3 of hoarding begins before age 20
0-5
10-J
un
15-N
ov
16-2
0
21-2
5
26-3
0
31-3
5
36-4
0
41-4
5
46-5
0
51-5
5
56-6
0
61-6
5
66-7
0 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Tolin DF, et al. Depress Anxiety. 2010.
Hoarding becomes moderate to severe after age 30
Frequency of Hoarding in Older Adults 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 15%◦ Visiting Nurses Association., NYC 10-15%◦ Community Guardianship, NC 30-35%
Some of the worst cases are reported among elderly people
Major Dep.
GAD Social Phob
PTSD Sub. Abuse
ADD0
10
20
30
40
50
60
Frost et al. (2010)
Most people with HD also have other MH problems (n=217)Frost, Steketee, Tolin et al., 2011
Hoarding often goes unreported: n=139 anxiety clinic patients
Panic Specific Phobia OCD Social Anxiety GAD0%
5%
10%
15%
20%
25%
30%
% o
f A
Ds
wit
h h
oar
din
g
0% 0%
11%
14%
27%
Tolin, D. F., Meunier, S. A., Frost, R. O., & Steketee, G. (2011). Journal of Anxiety Disorders, 25, 43-48.
Health Threats in 62 Elders who Hoard (seen by 40 Caseworkers)
Fire Falling Unsanitary Medical Ambulation0%
10%
20%
30%
40%
50%
Kim, Steketee, & Frost (2001). Health & Social Work. 26:176-184
% with unusable appliances in 62 older adults (Case Worker Interview)
Stove/O
ven
Fridge/F
reeze
r
Kitchen S
ink
Bathtu
b
Bathro
om S
ink
Toilet
Heat0%
10%
20%
30%
40%
50%
60%
Steketee et al., Health Soc Wk 2001; 26:176-184
Cognitive Problems did not Explain Hoarding in Elders
Cognitive Prob-lems
Memory Prob-lems
Poor Insight0%
10%
20%
30%
40%
50%
60%
70%
80%
None
Mild
Severe
Kim, Steketee, & Frost (2001). Health & Social Work. 26:176-184
Kim, Steketee, & Frost (2001). Health & Social Work. 26:176-184
Previous Interventions for Elders rarely worked
Clear
ing
Partia
l Cle
arin
g
Clean
ing A
ssis
tance
Hoarder
Family
Mem
ber
Outs
ide
Agency
Sustai
ned Im
prov.
Impro
v. &
Rel
apse
No Chan
ge
Clutte
r Wors
ened
No Info
0%
10%
20%
30%
40%
50%
60%
70%
80% Intervention By Whom Outcome
Community Challenges 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
Concerns/barriers in treating late life hoarding Possible cognitive impairment Need for assistance in physical ADLs
◦ Care and moving of the body◦ Walking, bathing, dressing, toileting, brushing
teeth, eating Need for help with instrumental ADLs
◦ Activities that support independent living◦ Cooking, cleaning, driving, communication via
phone or computer, shopping, tracking finances, managing medications
Concerns/barriers in treating late life hoarding 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
Frost et al. (2000)
79% of cases involved multiple agencies
Community Costs
Sanitation problems
Diagosis◦ Structured Interview for Hoarding Disorder (SIHD)◦ Other MH conditions: SCID, ADIS, MINI
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
◦ Home visit, HOMES, Home Environment Index Family accommodation and burden
Hoarding Assessment Instruments
0 1 2 3 4 5 6 7 8Not at all Mild Moderate Severe ExtremelyDifficult
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?
Hoarding Rating Scale (HRS)
Tolin, D.F., Frost, R.O., & Steketee, G. (2010). Psychiatry Research, 30, 147-152.
ADL-Hoarding (ADL-H)Activities affected by
hoarding problem
Can do
easily
little
difficulty
moderate
difficulty
great
difficulty
Unable
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
Frost, R.O., Hristova, V., Steketee, G., & Tolin, D.F. (2013). Activities of Daily Living in hoarding disorder (ADL-H). Journal of Obsessive Compulsive and Related Disorders, 2, 85-90.
Safety Fire hazards, blocked exits, cluttered
stairways, room for emergency personnel & equipment
Squalid conditions Rotten food, insects, animal waste Cleaning and hygiene behavior
Structural damage Home Environment Index HOMESFrost & Hristova, J Clin Psychol 2011;67:456-466; Rasmussen,, Steketee, Frost, Tolin, & Brown (in press). Community Mental Health
Journal.
Assessing Risk
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)
Geriatric-specific Assessment
EmotionsNeg. Pos.
Attachments & Valuation of objects
Core beliefs &vulnerabilities
Saving &Acquiring
Information processing
Negative Reinforcement
PositiveReinforcement
Steketee, G., & Frost, R.O. (2003). Clinical Psychology Review, 23, 905-927.
MODEL FOR HOARDING DISORDER
Genetics◦ Family history of hoarding◦ Linkage studies◦ Twin study
Neural mechanisms ◦ FMRI studies◦ PET studies◦ Brain damage studies
Evolutionary biology◦ Hoarding by animals◦ Nesting behavior
Biological vulnerability
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
Psychological and Physical Vulnerabilities
Attention
Categorization
Memory
Perception
Association
Complex
Thinking
Information Processing
Decision-making Difficulties
Beauty/aesthetics Memory Utility/opportunity Sentimental Comfort Uniqueness
Identity/potential identity
Need for control Concern over
mistakes Responsibility/
waste Completeness Safety
Emotional Attachments and Beliefs
Emotions Positive Emotions
◦ Pleasure◦ Excitement◦ Pride◦ Relief◦ Joy ◦ Fondness ◦ Satisfaction
Negative Emotions◦ Grief/loss◦ Anxiety◦ Sadness◦ Guilt◦ Anger◦ Frustration◦ Confusion
Distress Decisions Attending to clutter Feelings of loss Feelings of
vulnerability Worries about
memory
Inviting people into the home
Making mistakes Losing opportunities Losing information Depression Putting things out of
sight
Avoidance
EmotionsNeg. Pos.
Attachments & Valuation of objects
Core beliefs &vulnerabilities
Saving &Acquiring
Information processing
Negative Reinforcement
PositiveReinforcement
Steketee, G., & Frost, R.O. (2003). Clinical Psychology Review, 23, 905-927.
MODEL FOR HOARDING DISORDER
Steketee et al., Health Soc Wk 2001; 26:176-184
Cleanouts - Case Worker reports about Hoarding in Older Adults
0%5%
10%15%20%25%30%35%40%45%50%
Sust. Impr. Impr. &Relapse
No Change ClutterWorsened
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)
Recent findings indicate that venlafaxine may be beneficial for HD Saxena et al. (2013)
Pharmacotherapy
Specialized CBT for Hoarding
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
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
Treatment Format
Motivational Interviewing to tip the balance and resolve ambivalence
Benefits of change seem small
Costs of change seem heavy
Values◦What you care most about?
Personal goals◦What do you most want to do in the
remainder of your life? Short-term goals
◦What would you like to accomplish in the next year?
Establish Personal Values and Goals
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
Example: Sharon’s Goals
Problem solvingSorting OrganizingDecision making
Skills Training
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
Skills to Manage Attention
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:◦ An immediate use for it◦ Time to deal with it appropriately◦ Money to afford it◦ Space to put it
Acquiring Questions and Rules
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
Treating Difficulty Discarding
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
Turner, Steketee, & Nauth (2010). Cog. & Behav. Pract., 17, 449-457.
Brookline Flexible CBT for Hoarding with older adults
(modified from Steketee & Frost 2007 manual)
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
Turner, Steketee, & Nauth (2010). Cog. & Behav. Pract., 17, 449-457.
Brookline Study Recruitment
Turner, Steketee, & Nauth (2010). Cog. & Behav. Pract., 17, 449-457.
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
Engagement Strategies
Average reduction in clutter = 28%Range = 17% to 46%
ClientsCIR %
Reduction
1 17%
2 20%
3 25%
4 29%
5 36%
6 46%
Mean 28%
Turner, Steketee, & Nauth (2010). Cog. & Behav. Pract., 17, 449-457.
Ayers et al. 2010, unpublished
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. CBT with Older Adults
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
Aging Can Complicate Treatment
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
Practice in session; arrange for help with homework
Train new behavior habits to prevent relapse
Modified CBT for Older Adults
Cognitive Flexibility Training
Brainstorming Strategy
verbalization Hypothesis testing
by looking for disconfirming evidence
Set shifting/ maintenance
Ayers et al., 2014 pilot study
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
Results
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).
Hoarding Severity Changes
Measure
% Improvement n=11
SI-R 38%
CIR 26%
Case example - bedroom
Bedroom at initial home visit (unable to sleep in bed)
Bedroom at session 18
Next steps in treatment for older adults with HD (Ayers et al.)
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 Real world effectiveness
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
Conclusions
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
Successes with CBT for Elders
www.ocfoundation.org/hoarding◦ Information, measures, therapy manuals,
referral, resources, hoarding task forces, therapy referrals
www.abct.org therapy referralswww.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]
Referral Options