1. HOARDING: OPTIONS FOR HELPING Elaine Birchall HOARDING CONSULTANT Past Coordinator Ottawa Community Response to Hoarding Coalition

2. SOMETHING TO GET US STARTED…

3. KEY HOARDING MESSAGES  Hoarding is found in all cultures, income and education levels and for different reasons  Hoarding interventions are usually complicated, costly and time consuming  Hoarding situations continue to deteriorate until the health and safety of the individual and community are put at risk

4. WHAT IS HOARDING?

5. HOARDING IS: 1.Excessive accumulation and failure to discard proportionately (things or animals) 2.Activities of daily life are impaired by spaces which cannot be used for intended use 3.Distress or impairment in functioning to the person hoarding or others

6. HOARDING vs. CLUTTERING Hoarding and cluttering are often used interchangeably. There are two differences: 1.Clutterers can discard things more easily 2.Their clutter does not debilitate their lives to the same degree

7. KEY WORKSHOP MESSAGE 2 Essentials for Success 1.G etting people help with the reasons they hoard 2. C leaning up the property which is the byproduct of the untreated behaviour

8. TYPES OF HOARDING  Common Hoarding - Generalist - Specialist  Diogenes' Syndrome  Animal Hoarding

9. COMMON HOARDING  Anything can be Hoarded; most often items are what most people save  Insight fluctuates  Generalists – save everything from human waste to valuable items  Specialists – save one or more specific categories of items

10. Prevalence OCD: approx. 2.5% of GP  Hoarding is conservatively 15% of that 2.5% (Frost, Krause, Steketee, 1996)  In Ottawa, OCD related Hoarding is estimated at approx. 3000 people  Note: OCD represents 1 co-morbid factors in Hoarding situations

11. Understanding Hoarding Genetics  Compulsive hoarding has a different pattern of genetic heritance and co-morbidity than other types of O.C.D.  Hoarders:  84% have a first degree family member with hoarding behaviour  37% have a family history of O.C.D.

12. Understanding Hoarding also implied :  Information processing deficits: attention, categorization, memory, leading to problems with acquisition, discarding, clutter  Research indicates hoarders take significantly more time to categorize so possessions are left out as reminders

13. Understanding Hoarding cont’d  Distress when making decisions about placement, necessity, retrieval. So items are left disorganized  Distorted beliefs about, and emotional attachment to possessions

14. Characteristics of Hoarders  Beliefs that emotional comfort comes from objects  Fear of losing something important  Feelings of loss of self or identity  Need for control, no one can move possessions  Discarding is labourious; so it is avoided

15. Characteristics of Hoarders cont’d  Distress & avoidance. Distress at not acquiring, or discarding a possession: so Hoarders avoid it  Grief-like feelings when discarding due to intense initial attachment to the object.  Hyper responsible for objects: discarding requires others to need and appreciate items

16. DIOGENES SYNDROME  Self – Neglect – lack of clothing, poor nutrition, medical and dental care even when they can afford it  Domestic Squalor – makes residence unhealthy  Hoarding – makes residence unsafe

17. Prevalence  Diogenes Syndrome has been found in approx. 0.5/1000 of the GP  Ottawa’s Diogenes Syndrome population approx. 400 cases

18. Characteristics of Diogenes Syndrome 1.Live alone 2.Above average intelligence 3.Reclusive, suspicious, obstinate, isolated from potential sources of support 4.Men and women equally at risk

19. Characteristics cont’d  Approx. 40% of those affected also have significant psychopathology  The bad news is 60% do not  Severe situations are often accompanied by physical health problems

20. Better Outcomes  Day Programs supplemented by Community Care services  Have support of a “trusting relationship”

21. Poorest Outcomes  Those with severe OCD & OCPD  Paranoia  Mood disorders  Early stage dementia, in studies 46% had a 5-yr post discharge mortality rate

22. ANIMAL HOARDING Accumulation of animals to the extent that:  Failure to provide minimal nutrition, sanitation and veterinary care  Failure to act on the deteriorating condition of the animals or the environment  Failure to act on or recognize the negative impact of the collection on their own health and well–being

23. Animal Hoarding cont’d  Prevalence est. @ 88/100,000 GP  The most difficult to treat usually claiming to be pet rescuers (Arluke et al 2002, Patronek 2001)  Where animal neglect and abuse are suspected, also assess for child & elder neglect and abuse if either co-reside (No Room to Spare, Dinning, May 2006)

24. In a 2001 study of elderly social service recipients by Dr. Gail Steketee et al, it was reported that: % of Hoarders with insight: Clear insight15% No insight73% % of Hoarders with cognitive impairment: None76% Severe 5%

25. WHY DO PEOPLE HOARD? “If they live like this most people believe they must be crazy”… Quote from Brenda Ziegler co-founder of Madison Wisconsin Hoarding Task Force

26. WHY DO PEOPLE HOARD? cont’d Not so, Hoarding is a legal, public health and safety issue sometimes with accompanying mental health issues

27. A Picture is Worth a Thousand Words Let’s meet Phil

28. Diagnosing Hoarding Behaviour Where does Hoarding fit as a diagnosis?? Join the Debate! A Symptom? A Syndrome?  Hoarding implies compulsive buying and acquisition. Therefore Impulse Control Disorder?  With OCD present, likely a sub-group of Obsessive-Compulsive Disorder

29. Hoarding is associated with other Axis I Disorders:  Depression  Anxiety Disorders  Eating Disorders  Addictions (drugs, alcohol, gambling)  Tics, Tourettes Syndrome  Autism  Schizophrenia  Dementia  Social Phobia

30. Hoarding is associated with some Axis II Disorders:  Personality Disorders (Obsessive- Compulsive, Avoidant, Dependent, Paranoid)  Ego syntonic nature of hoarding and the lack of insight contrast with OCD traits

31.  Social Isolation  Dementia and Alzheimer’s  Aging with mobility issues  Traumatic life events  Biological factors Also found Co-Morbidly

32. Common Saving Patterns: Instrumental Saving Pattern : ” Just In Case” – (morally based) The item MUST be saved because it could be useful in future if not for me then someone else (usually unknown)

33. Sentimental Saving Pattern: ( Grief based), “This means too much to part with it”  the items evoke the happy past memory  as long as they keep the item, they don’t lose the thing they miss

34. Aesthetic Saving Pattern: “I love this” (pleasure based)  the items have particular characteristics and are desired because they prompt a response not unlike a pleasure response  “Everything I have is special and unique so I don’t know how to organize or group it into Keep, throw, recycle piles”

35. What Works? Norma D. Thomas PhD, DSW, LSW, CSW Director, Center on Ethnic & Minority Aging Inc. Philadelphia, Pa.

36. OBSESSIVE COMPULSIVE DISORDER WHAT WORKS :  Medication has little effect on Hoarding  In home support  “Collaborative Intervention”  Combination of therapies/interventions

37. SOCIAL ISOLATION WHAT WORKS:  Combination of medication, therapy and increased social contact

38. DEPRESSION WHAT WORKS  Medication, therapy and social contact

39. DEMENTIA What works  Legal interventions are essential re: safety and competence  In early stages, even those closest do not realize the extent of the problem and risk  The situation will continue to deteriorate until treatment, cleanup and ongoing monitoring supports are in place

40. HIGHLY DEVELOPED DEFENCE MECHANISMS WHAT WORKS Interventions involving the family are important to prevent relapse because they:  Trusted helpers are critical to clean-ups  Ongoing monitor of re-acquisition essential

41. WHAT’S ALL THE FUSS ABOUT? Hoarding is likely to create  Impaired Activities of Daily Living  Unhealthy Living Conditions  Unsafe Living Conditions for the person themselves and others around them (neighbours, family, “responders”)  Hoarding is a high risk factor for eviction or threat of eviction which is the highest risk factor for homelessness

42.  Fire hazard45%  Risk of falling39%  Unsanitary conditions 32%  Medical problems27%  Poor ambulation 26% In a study of 62 Elderly Hoarders the following risks were found:

43. THE PROCESS OF HOARDING  Acquire  Use  Consider discarding  Evaluate value and alternate uses  Obsessional thoughts ”kick in”  Save  Don’t have to think about it for now  Anxiety Relief  Acquire

44. WHAT CAN YOU DO TO HELP? Remember Hoarding is usually a CHRONIC condition so… “The person who removes a mountain begins by carrying away small stones.” “Dane County Elder Abuse Office This Full House” Dane County, USA 2000

45. Let’s go back and see how Phil is doing…

46. MOTIVATING CHANGE  Importance  Confidence These are key factors in “Collaborative Interventions”

47. IMPORTANCE: of the job to be done  Immobilized = not enough support and too much pressure  Action = right support + pressure  Delay = not enough support, not enough pressure

48. CONFIDENCE: the job CAN be done  Increases motivation  More likely to ask for future help  Self-respect returns

49. Hoarding Cleanup Interventions STEP: 1 1.Assess the risk and respond accordingly: Risk to the resident Risk to other residents Risk to “responders 2.Who else needs to assess based on what you discover?

50. STEP: 2 Hoarding situations need a team 1.Who is your team? 2.Which organizations do you need on your team to get the job done on time? 3. Promote a “How can we make it happen” approach 4.What’s the “Team Plan”?

51. STEP: 3 1.Control your reactions to the sight and smell of the unit 2.Be aware of internal reactions and judgements – don’t voice them, stay neutral and solution focused 3.Remember solutions are tied to underlying causes, refer accordingly 4.Bring tools to leave with tenant

52. STEP: 4 1.Be patient. Ask tenant how things got to this stage and then listen to what they tell you 2.What type of fear are they expressing? What will they need to bolster their motivation and persist to success? 3.Negotiate follow up and monitoring 4.Acknowledge small successes

53. TOOLS for TENANTS De-emphasize Punishment 1. Leave Information/handouts with tenant 2. Make appropriate referrals 3. Create a reference library to promote Insight 4. Promote ownership for support and treatment 5. Encourage increased Social contact 6. Also promote work on Co-morbid Issues

54. QUESTIONS for ACQUIRING 1. Do I need it? How many do I already have? 2. Do I have an immediate use for it? 3. Can I get by without it? 4. Do I feel compelled to have it? 5. Do I have available space for it? 6. Can I afford it comfortably? 7. Do I have time to deal with it appropriately?

55. QUESTIONS for DISCARDING 1. Do I need it? 2. Do I have a plan to use this? 3. Have I used this in the last year? 4. Can I get it elsewhere? 5. Do I have enough space for this? 6. Do I love it?

56. HOW TO ORGANIZE & LET GO 1. Select target area and types of possessions 2. Create categories for possessions 3. Sort into discard, recycle/give away and keep piles 4. Use guideline provided to decide 5. Continue until target area is clear 6. Plan appropriate use of cleared area 7. Plan for preventing new clutter to area

57. RELAPSE PREVENTION  Evaluate unresolved issues  Schedule regular times to organize and discard  Invite visitors home  Anticipate stressors and their effects  Apply skills learned in treatment  Identify resources for the future

58. Treatment of Hoarding Pharmacology  Little benefit with O.C.D. meds  Best result when hoarding is a symptom of depression

59. Cognitive-Behavioural Therapy 1.Identify self-talk, inner dialogue, automatic thoughts. Recognize thought patterns. 2.Follow thoughts: recognize cognitive distortions: identify irrational cognitions 3.Set realistic goals: measurable. Evaluate level of hoarding with pictures and resistance to take them. Pictures are useful to follow evolution

60. Cognitive Behavioural Therapy cont’d 4.Make the process realistic: 15 min.-1 hour/day. Select a “ target area ”. Stick to it 5.Positive cognitions: reassuring and comforting thoughts to counterbalance distortions which lead to fear & insecurity 6.Challenge erroneous automatic thoughts. Develop rational responses. Use Flash cards. Journal to see patterns & progress

61. Cognitive Behavioural Therapy cont’d 7. Priority is homework assigned, use an agenda, use a timer, get appropriate help from informed professionals or friends for on-site decluttering 8.Train decision-making, categorizing, exposure to discarding & organizing Rule: No churning. Only handle once.

62. Cognitive Behavioural Therapy cont’d 9.Use the Three and a half box technique: Box 1. Save box (“stuff” needs a specific place) Box 2. Recycle/Regift box (new home elsewhere) Box 3. Discard box “stuff“ (leaves that day) ½ Box. For things to be done immediately i.e. (financial matters) 10.Reassess goals and motivation

63. Cognitive Behavioural Therapy cont’d 11.Forgive yourself “Mistakes are part of life.” Nobody’s perfect. Don't give up 12.Be proud of your successes, and reward yourself 13.Explore places in the community to get the help you need i.e. where to send stuff, recycling, volunteers, help and support

64. Cognitive Behavioural Therapy cont’d 14.Analyse buying patterns: make a contract. No impulse buying; use what you have before buying more; buy only essentials: use objective criteria i.e. acquiring’s? 15.Cancel subscriptions to magazines and newspapers. Use the library instead 16.Limit TV time: it is an escape from cleaning up. It erodes motivation

65. Prognosis  Compulsive hoarding is a chronic illness which requires unrelenting vigilance   Combined treatment (medication and cognitive-behavioural psychotherapy) best. Lots of resistance expressed  Monitoring & Maintenance sessions needed. Motivation and Compliance fluctuate greatly

66. The Ottawa Community Response to Hoarding Coalition  Thanks to a SCPI grant, there is now an integrated Service Delivery Model for Hoarding Response, Support and Services  Increased treatment options are indicated: i.e. facilitator led support groups, 1:1 counseling, collaborative intervention methods