Thoughts on Hoarding “Negative results can occur when interventions are not carefully planned with a group of professionals with hoarding knowledge.” Source:http://dmh.lacounty. gov/cms1_046522.pdf Confidentiality We will be discussing live and historic case work as such it is important to feel that we are working safely. We agree: As much as possible to keep the identity of the client anonymised To maintain the confidentiality of other participants if we are discussing their case work in our own workplace To treat discussions about clients (professionals, family, etc.) with respect Others? Trainer today Megan Karnes (alphabetically!) Activist Consultant Counsellor Counselling Supervisor Professional Advocate Trainer Collector? Clutterer? Compulsive Hoarder? Normal saving 5 Collecting Cluttering Hoarding Social Problem? Yes. Isolation Risk Annoyance Illegal (due primarily to risk) Expensive Recurrent Stigma We’ll spend more time on these later. Psychological Problem? Yes. Hoarding disorder is previously recognised clinically under Obsessive Compulsive Personality Disorder on Axis II and Obsessive Compulsive Disorder on Axis I Comorbid (found along side) with most recognised mental disorders Hoarding disorder now has its own clinical recognition in Diagnostic and Statistical Manual of Mental Disorders V (American) and will be published the International Classification of Diseases (ICD) in 2014/15. Source: Singh, 2012/Mataix-Cols, 2012 Current Diagnostic Criteria Diagnostic and Statistical Manual of Mental Disorders criteria: Persistent difficulty discarding or parting with personal possessions, regardless of their actual value. The difficulty is due to a perceived need to save the items and distress associated with discarding them. Source: Mataix-Cols, et. al. 2010 Current Diagnostic Criteria (cont.) The symptoms result in the accumulation of a large number of possessions that congest and clutter active living areas and substantially compromise their intended use. If all living areas are uncluttered it is only because of the interventions of third parties (e.g. family members, cleaners, authorities) Source: Mataix-Cols, et. al. 2010 Current Diagnostic Criteria (cont.) The symptoms cause clinically significant distress or impairment in social, occupations or other important areas of functioning (including maintaining a safe environment for self and others). The hoarding symptoms are not due to another medical condition (e.g. brain injury, cerebrovascular disease, Prader-Willi Syndrome) Source: Mataix-Cols, et. al. 2010 Current Diagnostic Criteria (cont.) The hoarding is not better accounted for by the symptoms of other DSM-5 disorder (e.g. hoarding due to obsessions in Obsessive Compulsive Disorder (OCD), decreased energy in Major Depressive Disorder, delusions in Schizophrenia or another psychotic disorder, cognitive deficits in Dementia, restricted interests in Autism Spectrum Disorder) Source: Mataix-Cols, et. al. 2010 Prevalence Some research finds that it hoarding disorder is more common in males but more females present for support (this has also been found to be equal in terms of how many of each gender hoard) No distinction between age, gender, ethnic group, socio-economic status, educational, occupational tenure 92% of compulsive hoarders have at least one other mental health disorder Source: Singh, 2012/Sorrentino, 2007 Prevalence (cont.) Often family history of OCD and or hoarding (50% in three studies identified parent, sibling or offspring) Potentially only 5% of hoarders come to the attention of professionals. Source: Singh, 2012 Commonly hoarded items Old clothes Beads Magazines Fabrics CD/Video/DVD Pins Post Rags Pens Old medication Old notes Canned food Bills OCD related: body Newspapers Receipts Cardboard boxes products (nail, hair, excrement); rotten food; animals Source: Pertusa et al, 2008 Development Hoarding often begins in adolescence Hoarding becomes significant problem for most people in their 30′s However, the average age of people seeking treatment is about 50, ranging mainly from early 40s’ to elderly adults. Source: Steketee, 2010 Where else? Other than their own environment, the person who compulsively hoards: May have storage spaces (or several) May be using space of other family, friends, etc. May be using external areas of private or other property including hallways, yards, vehicles, etc. Just say no… Conceptual Model Core beliefs and vulnerabilities Information processing deficits Problems with emotional attachments Beliefs about possessions Emotional reactions Reinforcement properties Frost/Steketee, 2007 Treatments largely ineffective ‘Therapist Guide’ details 43 clients entering a trial, notes a 14% dropout rate before commencement and a 26% reduction in hoarding symptoms at week 12. After 26 sessions, with only 17 patients remaining, the result was a 45% reduction in hoarding behaviours. (Frost and Steketee 2007) Findings have consistently shown that people who hoard respond poorly to Exposure and Response Prevention (ERP), CBT and Selective Serotonin Reuptake Inhibitors (SSRI) medications (Starcevic and Brakoulias 2008). What’s Worked Introducing other services who are able to help, including using the family and personal relationships as a route in Consistently working in an open and transparent way (ways to do that, and to fix it if it goes wrong) Working collaboratively (good cop/bad cop) Regular contact Motivational Interviewing has been found effective in joining up professional’s goals with user’s autonomy. Positive Engagement Our vision of support Family Media Community Hoarder Legal Systems Mental Health Emergency Services Social Support Their perspective Social Support Mental Health Emergency Services Legal Systems Community Family Hoarder Media Reflective practice in action Deliberate pause Open perspective Thinking processes Examination of beliefs, goals, practices New insights and understanding leading to action Brett, 2012/York-Barr, et al, 2001 Hard enough for you… When we talk about the person who hoards, what do we mean by outcomes? Getting it safe Keeping it clear Others? Risk What are the risks? Increased Risk of Fire The accumulation of combustible materials, such as newspapers, clothing and rubbish Increased Risk of Structural Damage Structural damage threatens the occupants, public safety personnel and adjacent buildings Increased Risk of Disease, Injury and Infestation The storage of hoarded items makes cleaning nearly impossible, which can lead to unsanitary living conditions and increases the risk of disease Source: http://www.fairfaxcounty.gov/dpwes/trash/hoarding/public_safety.htm How do we assess risk? In terms of our discussion let’s look at: Is there a process at all? Behaviour al What is the process? How is it measurable? Is it hoarding specific? Relational Hoarder Psycholog ical Risk CIR Ratings With a show of hands how many people chose which rating on the CIR? We’ll have a brief discussion about why looking at: Subjective nature of assessment o Personal standards o Personal beliefs about cleanliness When in doubt, check it out! While all tools (not all discussed today) work as a basic way of beginning the process of assessing risk, ensure that evaluations are not being made solely on the basis of ‘how it looks’ or ‘what could happen if…’ Fire brigade assess for fire, environment assess for environmental issues, mental health services, advocacy, etc. Try to engage the client, all evidence points to this improving outcomes (albeit taking longer-but also lasting longer!). Risk is real! As much as HoardingUK advocates for engaged practice that allows time and encourages real change, this is not always possible Risk to others significantly high Impact on neighbours significant Children Animals Keep it safe Cover your butt Origins Trigger moves person from disorderly or over tidy to chaotic The cycle begins: acquiring behaviours override ability to discard Shifts from manageable to unmanageable We meet (or they’re discovered) Tenancy agreements Council/Private processes Anti-social behaviour Motivational Interviewing MI Core Principles 1. Clarifying contracts (additional principle to those identified by Miller and Rollnick) 2. Expressing empathy 3. Developing desire to change (develop discrepancy) 4. Avoiding argument (roll with resistance) 5. Supporting self-belief and self-responsibility (self-efficacy) Fuller and Taylor 2005 Open questions Questions that cannot be answered with a limited response, (i.e. “yes‟, “no”, “maybe”, “seven”, “next week”, etc.) Encourages individuals investigate and explore their own thinking, and moves Facilitators away from giving or offering “advice”. Members to do most the talking, with the goal to elicit statements that develop discrepancy and reflect selfefficacy. People tend to believe what they hear themselves say http://www.smartrecovery.org/resources/UsingMIinSR.pdf Affirmations Affirming statements help individuals acknowledge their positive behaviors and strengths Builds confidence in their ability to change. Allows for both recognition of difficulties and support of their strengths Validates concerns and issues Convey respect, understanding and support, and need to be both genuine and appropriate. http://www.smartrecovery.org/resources/UsingMIinSR.pdf Reflective listening Mirrors individuals’ comments by repeating back what was said. Confirms understanding of what was said Clarifies sure you heard what you think you heard Deepens the conversation by allowing the individual to hear (again) what they said, which will help them understand their own thoughts better http://www.smartrecovery.org/resources/UsingMIinSR.pdf Readiness questions What’s different for you now? Who else would like to see this change? Do you feel pressure from that person? Is there any risk to change? What do you feel might be some obstacles to that change? Is there any other information you need or skill you need to acquire to make this change? SMART goals questions Tell me 3 reasons why this would be a good change and 3 reasons why it would be difficult. When you bring about this change, how will it look? If you’ve tried this before, what worked for you? What didn’t work? What do we need to do to overcome the previous obstacles? Hoarding Relationship and the Cycle of Change Not rigid Suggestions, not a road map Interchangeable, not an orderly process Reusable, bring back in at any stage Fluid, flowing, adaptive Cycle of Change Prochaska and DiClemente 1982 Cycle of Change Prochaska and DiClemente 1982 ‘Precontemplation’-Gibberish alert! Can be thought of as ‘pre-change’ “What appears to be ‘denial’ is often a normal stage in the change process which occurs prior to feeling ready to contemplate change (precontemplation), rather than a personality trait.” The facilitator can make the position worse by giving advice, etc. Establishing rapport is vital at this stage Fuller and Taylor 2005 Cycle of Change Prochaska and DiClemente 1982 Contemplation-Gibberish alert! Thinking about changing Seeds of doubt have been sown. Awareness of some of the advantages of change and the disadvantages of their present behaviour is clearer However, a clear decision to change has not been made; they enjoy their current behaviour and know it will be difficult to change. Fuller and Taylor 2005 Cycle of Change Prochaska and DiClemente 1982 Gibberish alert! Okay, everyone knows what decision means… When there is a clear decision to change you will hear increased self-motivating language and reduced resistance talk More willingness to make clear contracts for change and explore with you how to overcome any barriers. The mistake is to rush into action planning too quickly. Fuller and Taylor 2005 Cycle of Change Prochaska and DiClemente 1982 Active changes skills Most useful: Remember ambivalence may still be present Monitor small steps Appropriate information giving Continue to explore and work to remove barriers Active helping Celebrate success Fuller and Taylor 2005 Active change skills (cont.) Least useful: Assume the problem is solved Over emphasise the negatives of previous behaviour Provide all the solutions Fuller and Taylor 2005 Cycle of Change Prochaska and DiClemente 1982 Maintenance skills Most useful: Be aware when support may still be required and when to let go Build regular support for the new behaviour Positive feedback on progress Affirm and praise Build new skills/behaviours Plan for coping and lapse Reinforcement of longer term goals Fuller and Taylor 2005 Maintenance skills (cont.) Least useful: Let go too early Over emphasise exploring previous behaviour Hold them in dependency Fuller and Taylor 2005 Cycle of Change Prochaska and DiClemente 1982 Relapse skills Most useful: Frame as a part of learning Explore how the lapse occurred Build strategies for next time Empathy/explore ambivalence Explore strengths and who can help Reflect back self-motivating statements concerning desire ad confidence to learn from the experience Return to contemplation stage Fuller and Taylor 2005 Maintenance skills (cont.) Least useful: Label as a failure See your own work as a failure Lecture, criticise, blame Give unwanted advice Give up hope Fuller and Taylor 2005 Techniques Ready or not! It may be difficult to begin the process of moving things out, but a good place to start is by lessening (ideally stopping) acquisition. L earn E xplore S low Down S upport Reasons for change Costs to staying the same Gains of change Fuller and Taylor 2005 Gains of staying the same Costs of change Acquistion Anything new? Negotiate • Hold for discussion • Understand meaning • Keep this or not • If kept remove something else Saving Behaviours How long • Since worn • Since used Set a date • Two years? • Seven years? Discard • Anything older than Motivation-Picture this! Take a photo Make change Take a photo Make change Take a photo Make change Singh Inability to discard Create hierarchy: What is important to the person? Highest risk priority? LEAST IMPORTANT LESS IMPORTANT MOST IMPORTANT Singh Levels Mark a spot on the wall with something bright Clear in the area Watch the mark become more and more visible Singh Difficulty organising/decision making B R Time E A K Task It D O W N Process Attachment-Me space Identify an ‘I want’ Identify the area Clear Use the space STUFF SOMETHING I LIKE TO DO, USE, ETC. STUFF Singh Active change-Can/May/Won’t Three piles: WON’T GO MIGHT GO Stays Put away appropriately or used Singh Moves to agreed space Used, or discarded later CAN GO Goes out immediately Removed completely An ‘Open Relationship’? Fire brigade assess for fire, environment assess for environmental issues, etc. Mental Health treats the psychological disorder Support groups break down stigma, increase social engagement, support change Advocacy works to ensure that professionals across a range of services are giving the client what they need Role playing e.g. Good Cop/Bad Cop Professionals are getting the support they need It doesn’t happen Client will not engage Others demand ‘now’ Time runs out Others? Fuller and Taylor 2005 It’s got to go! Support in Identifying Time for labelling Oversight on the day Removal Treatment Group in London National Hoarding Treatment group meets once a month- the last Wednesday of each month from 6.00-8.00 pm at: The Wordsworth Health Centre 19 Wordsworth Ave London, E12 6SU -----------------------------------------------------Islington support group (Islington Residents Only) Westminster Society for People with Learning Difficulties. More details can be obtained from the website: www.hoardinguk.org Megan Karnes megan@hoardinguk.org www.hoardinguk.org 07908 22 55 11 END