Hoarding Disorder: The Next Step

A Neurocognitive Approach to Treatment

Kay Jewels, B.A. Research Assistant, McLean Hospital

Director, The Next Step Program

Donald A. Davidoff Ph.D. Chief, Department of Neuropsychology, McLean Hospital Assistant Professor of Psychiatry, Harvard Medical School

Mental Health Association of San Francisco 18th Conference on Hoarding and Cluttering

March 2018

Disclosure

■ Neither Ms. Jewels nor Dr. Davidoff report that either of them or any member of their immediate families have a significant financial interest in or affiliation with any commercial goods/organization that may have a direct or indirect interest in the scientific program.

■ Neither Ms. Jewels nor Dr. Davidoff will discuss unapproved or investigational use of any products during their presentation at the OCD Annual Meeting.

Hoarding Disorder: The Next Step

A Novel Approach to Treatment Based on an Understanding of the Neurocognitive Deficits of HD

I. Background and Research II. Examples of Cognitive Issues III. The Next Step Program

Importance of Understanding Hoarding Disorder

■ Impact on the Individual ■ Isolation ■ Functional Impairment ■ Family Dysfunction ■ Anxiety & Distress ■ Increased Medical Disability ■ Increased Risk of Physical

Injury ■ Premature Death

■ Impact on Society ■ Safety Hazards ■ Fire Hazard ■ Mold & Toxic Odors ■ Environment for Insects and Rodents ■ Increased Risk of Poverty and Homelessness ■ Public Cost (~$16K to clean each house)

Hoarding Disorder = Public Health Crisis + Mental Health Crisis

Prevalence of Hoarding Across the Life Span

• Hoarding symptom severity increases with age

• Hoarding symptoms are more refractory with age

• Elder individuals with hoarding have a 5 year mortality rate of approximately 50%

Cath 2017; Snowdon 2007; Samuels 2008; Ayers 2010

Historic Conceptualization of Hoarding Disorder (DSM-IVTR)

A pervasive pattern of preoccupation with orderliness, perfectionism and mental and interpersonal control, at the expense of flexibility, openness and efficiency, beginning by early adulthood and present in a variety of contexts, characterized by (at least) four of the following:

• Preoccupied with details, rules, lists, order, organization, or schedules to the extent that the major point of the activity is lost

• Perfectionism that interferes with task completion

• Excessively devoted to work

• Inflexible about matters of morality, ethics, or values

• Unable to discard worn-out or worthless objects even when they have no sentimental value

• Reluctant to delegate

• Miserly spending style

• Rigid and stubborn

301.4 Obsessive-Compulsive Personality Disorder

Symptoms of Hoarding Disorder

■ Persistent difficulty discarding or parting with possessions ■ Perceived need to save items, regardless of actual value ■ Distress associated with discarding ■ Avoidance of Discarding to manage associated distress

■ Accumulation of possessions ■ Cluttered living areas compromise their intended use ■ Fire Hazards, Health and Safety Violations

■ Significant anxiety or impairment of functioning in social, occupational, or other important areas

Woody et.al. 2014

The Implications of Research (pre-2013)

Deciding to Discard Causes

Anxiety

Anxiety Provokes Distress

Distress Intolerance Predicts Avoidance

Ritual

• Research Prior to 2013 Conflated HD with OCD

• Resulting Treatment Modalities (CBT) not based on Comprehensive Understanding of the Disorder

The Gold Standard Treatment for Hoarding Disorder

CBT has been the traditional treatment of individuals with HD.

It is a short-term, goal oriented treatment that seeks to make

individuals aware of when they make negative interpretations

and of behavioral patterns which reinforce the distorted

thinking. It helps individuals develop alternative ways of

thinking and behaving in order to reduce feelings of distress.

Problem solving and organizational skills are particularly

emphasized. Unfortunately, CBT for geriatric hoarders has

been less than effective.

Steketee & Frost 2007

Ayers 2009

Current Conceptualization of Hoarding Disorder (DSM-5)

A. Persistent difficulty discarding or parting with possessions, regardless of actual value

B. Difficulty due to perceived need to save items and to distress associated with discarding them

C. Results in accumulation of possessions that congest and clutter active living areas and compromises their intended use

D. Causes clinically significant distress or impairment in social, occupational, or other important areas of functioning

E. Not attributable to another medical condition

F. Not better explained by the symptoms of another mental disorder

Specify if: With excessive acquisition

With good, fair or poor insight With absent insight/delusional beliefs

300.3 Hoarding Disorder

• Attention, including complex attention • Visuospatial Processing • Memory -working memory -visuospatial memory • Executive Functions -planning & organizing -problem solving -conceptualization -categorization -inhibitory control -mental control -cognitive flexibility

Research Indicates Involvement of Multiple Cognitive Processes

Ayers 2013

Woody 2014

In HD, imaging findings implicate areas of the orbitofrontal cortex and dorsal anterior cingulate

Mataix-Cols 2011; Saxena 2008, 2004

Neuroanatomy of Hoarding Disorder

Anterior Cingulate Cortex (ACC)

Mediates a Variety of Higher-level Cognitive and Emotional Functions: • Object Appraisal • Insight • Reward Contingencies • Error Detection • Anticipation of Tasks and Prioritization • Attention/Selective Attention • Visual Memory and Working Memory • Motivation • Intensity of Emotional Response

Posner et.al. 2007

Caveda 2000

Rolls 1996

• Difficulties with sorting

and categorization

• Too many narrowly and

idiosyncratically defined

categories

• Concrete, unrealistic or

illogical groupings

Cognitive Deficits: Conceptualization and Categorization

Ayers 2016, Woody 2014,Timpano 2014,

Wincze 2007, Santostefano 1978

Problems with executive functions can impair decision making including processes such as categorization and object groupings, which are necessary for the organization of tasks involved in decluttering. Problems with memory can heighten fear of making bad choice, i.e. discarding needed objects. Problems with memory may discourage people from using storage systems and places that put object out of sight, like a filing cabinet or closet.

Cognitive Deficits Can Influence Decision-Making

Woody 2014

Lack of Insight

Lack of Distress

Treatment Resistance

• Insight requires higher-order brain networks underlying attention, working memory, and cognitive control.

• The processes are

impaired in those with Hoarding Disorder

Cognitive Deficits Can Result in Lack of Insight

Inflates Perception of Need and

Distress Associated with Discarding

Value Misappraisal

Interferes with the categorization

conceptualization process

Cognitive Deficits: Object Processing

Faulty Object Processing can result in Value Misappraisals:

Cognitive Deficits Can Impact Emotional Regulation

▶ reluctance to accept emotional responses

▶ difficulty regulating behavior when distressed

▶ lack of access to strategies for feeling better when distressed

Tolin 2018

Hoarding: A Neurocognitive Approach to Core Features

Information Processing Deficits • Lack of Insight • Value Misappraisal • Emotional Dysregulation

Recent Improvements in Treatment Strategies for Individuals with HD: Cognitive Rehabilitation

Emphasizing cognitive rehabilitation of cognitive skills

including problem solving, organizational abilities,

prospective memory and cognitive flexibility in the

context of behavioral interventions (exposures) to

discarding and not acquiring produced clinically and

statistically significant reductions in hoarding severity in

a study of geriatric HD. Ayers 2014

Recent Improvements in Treatment Strategies for Individuals with HD: Motivational Interviewing

Adding motivational interviewing and thought

mapping to traditional CBT group treatment of

individuals with OCD facilitates a decrease in

hoarding symptoms Mayer et.al. 2009

The Future: A Comprehensive Approach to HD

HD is not a simple problem of accumulation of objects but is a

complex multifactorial problem involving a unique confluence of

behavioral, emotional, and cognitive factors.

As such, effective strategies to ameliorate the symptoms of HD must

include:

• Therapeutic focus on the excessive emotional attachments to

possessions and subsequent distress and behavioral avoidance

• Correction of erroneous beliefs about the nature and importance

of possessions

• Attention to the observed information processing deficits that

appear to underlie the observed behaviors

• Application of cognitive prostheses to attenuate the impact of the

underlying cognitive deficits.

Cognitive Deficit: Conceptualization & Categorization

Idiosyncratic Grouping

• Difficulties with sorting and categorization

• Too many narrowly and idiosyncratically defined categories

• Concrete, unrealistic or illogical

groupings

Cognitive Deficit: Object Memory and Value Appraisal

Emotional Regulation Deficit

▶ Reluctance to accept emotional responses

▶ Difficulty regulating behavior

when distressed

▶ Lack of access to strategies for

feeling better when distressed

Tolin 2018

The Next Step

The Next Step Program

resolves safety and sanitary

issues, restores functionality to

living areas and reduces distress

utilizing a tripartite approach to

HD consisting of:

• Life Coaching

• Cognitive Behavioral Therapy

• Cognitive Prostheses

The Next Step

The Tripartite Model of Hoarding Disorder

Neurocognitive Substrates of Hoarding Disorder

Core Features of Hoarding Disorder

Symptoms of Hoarding Disorder

• Executive Attention

• Sustained Attention

• Visuospatial Attention

Attention Deficits

• Working Memory

• Visual Memory Deficits

• Verbal Memory Deficits

Memory Deficits • Conceptualization

• Inhibition • Decision Making • Self-Regulation

Executive Dysfunction

• Task Initiation • Task Completion

• Goal Directed Motor Responses

Functional Impairments

Hoarding: Cognitive Deficits Underlie Functional Impairments

Assists with

Increasing Productivity and Reducing Object

Clutter

Reducing Waste and Related

Anxiety

• Planning and Prioritizing the Steps to Goal Completion

• Maintaining Motivation and Sustaining Continued Effort

• Staying on Tasks and Completing Steps

• Organizing and Sorting

• Recycling and Discarding

• Repurposing and Relocating

• Sell items on E-Bay

• Donate to Charity

• Host a Yard Sale

• Give to a Friend • Recycle

The Next Step: Life Coaching

Next Step Includes CBT

CBT ≠ NEXT STEP

But

Clutter

Distress

Avoidance

Attention

Memory

Executive Function

The Next Step: Cognitive Behavioral Therapy Focus

Life coaching, in contrast to CBT alone focuses on: • Reframing the behavior to clarify the impact on

interpersonal and daily life issues

• Utilizing motivational interviewing to clarify individual short and long term goals

• Decreasing the amount and frequency of unproductive behaviors through psychoeducation and retraining around such issues as prioritization and organizational strategies

• Disengaging from false beliefs through the use of rewarding strategies

• Utilizing the therapeutic alliance to convey that two together can do what one alone cannot

The Next Step: Life Coaching

• Keeps it Positive

• Makes it Fun

• Talks it out

Makes it Feel Rewarding

– Remembers Goals

– Highlights Progress

– Gives Recognition

The Next Step: Life Coaching

Breaks the Anxiety Cycle:

Cognitive Prostheses: • Reduces anxiety and fear of forgetting

• Reduces acquiring and saving unnecessary items

• Reduces fear of change

• Reduces negative effects of cognitive deficits

Cognitive Prosthesis: a device that extends the capability of human cognition or sense perception

The Next Step: Cognitive Prostheses

■ Colored Sticker Flags ■ Visual Memory and Prioritization

■ Transparent Storage ■ Visual Memory and Categorization

■ Smart Phone Technology ■ Verbal and Visual Memory

■ Mini GPS Trackers ■ Spatial Memory and Object Location

The Next Step: Cognitive Prostheses

Cognitive Prosthesis: Colored Sticky Flags

• Memory

• Planning

• Prioritization

• Object Location

The Next Step: Example

Cognitive Prosthesis: Transparent Container

• Visuospatial planning

• Conceptualization

• Categorization

• Memory

Cognitive Prosthesis: The Transparent Drawer

A Maintainable Long-Term Organizational Solution that can:

• Keep the Possession in View

• Reduce Object Clutter and Provide Order

• Reduce Anxiety and Fear of Forgetting

• Reduces Resistance to Putting Objects Away

Cognitive Prosthesis: Mini GPS Trackers

• Locate Objects of Importance

• Reduce Fear and Anxiety

• Reduce Reliance on Ineffective Organizational Strategies

• Increase Productivity

Cognitive Prosthesis: Smart Phone Technology

■ Camera ■ Remember Objects with Pictures

■ Notebook ■ Remember Important Information

■ Calendar ■ Remember Important Dates

■ Contacts ■ Remember Important Contacts

Next Step Intervention: Before

Cognitive Prosthesis

Next Step Intervention: After

The Next Step

Before

After

Next Step Intervention: Before

Cognitive Prosthesis

Next Step Intervention: After

The Next Step

After Before

HD is a multifactorial problem involving a cycle of false beliefs, emotional distress and behavioral avoidance. There is increasing evidence that there is a substrate of cognitive processing difficulties underlying this dysfunctional behavior. Any treatment program must address all of these issues simultaneously in order to ameliorate the deleterious impact of HD on an individual’s life. The Next Step Program is a proposed treatment program with a tripartite approach to the problem of HD involving: • Life Coaching • Cognitive Behavioral Therapy and Cognitive Rehabilitation Strategies • Application of Cognitive Prostheses

Conclusions

• What is the exact nature of the cognitive profile of individuals with HD?

• How might these difficulties impact day to day functioning beyond the symptoms of HD itself?

• Does HD represent a neurodevelopmental disorder and is the increase in prevalence over the life span a function of neurodegenerative process?

• What is the role of disgust in HD?

• Can the neuroanatomical structures involved in HD be better defined and even quantified?

• How can we use our knowledge of cognition to further enhance the effectiveness of NSP?

Future Questions and Directions

Thank you

For Further Questions

For further questions or comments, Ms.

Jewels and Dr. Davidoff can be reached at:

McLean Hospital Department of Neuropsychology 115 Mill Street Belmont, MA 02478 (617) 855-2645 ddavidoff@mclean.harvard.edu

Kjewels@mclean.harvard.edu

Questions?