Compulsive Hoarding in the Elderly: What we know and What we can do

1. Compulsive Hoarding in the Elderly: What we know and What we can do By Carmen L. Morano, Ph.D. Associate Professor – Hunter College School of Social Work This presentation was developed in cooperation with Emily Saltz of Elder Resources, Boston MA

2. Objectives • Define Hoarding • Discuss factors associated with onset of Hoarding • Provide overview of Hoarding Research • Provide a strategy for overcoming engaging resistant (fearful) clients • Increase knowledge of intervention strategies • Discuss practical and ethical dilemmas

3. Hoarding vs. Collecting • Collecting is a normal and common phenomenon in children • Collecting in adulthood can be a pleasurable activity • Collector acquires and discards • Hoarders just acquire and rarely discard

4. Collecting

5. Cluttering • Falls somewhere in between collecting and hoarding • Lacks the organization usually associated with collectors • Lacks the “mass” or “volume” associated with hoarding • Doesn’t interfere with daily functioning

6. Definition of Hoarding* • 1) The acquisition of, and failure to discard a large number of possessions that appear to be useless or of limited value. • 2) The living spaces in the home are sufficiently cluttered so as to preclude activities for which those spaces were designed. • 3) There is generally significant distress or impairment in functioning caused by hoarding. • DSM-IV lists hoarding of “worn out or worthless objects even when they have no sentimental value” as a symptom of obsessive-compulsive personality disorder (OCPD). Frost & Steketee; Cognitive-Behavioral Model of Compulsive Hoarding; Frost & Steketee; 1998

8. Prevalence and Demographicsof Hoarding • Estimated at 700,000 to 1.4 million people in U.S. • Underreported problem –only five percent of cases come to attention of authorities • Prevalence among patients with obsessive compulsive disorder is approximately 20-30% • Prevalence among patients with dementia is approximately 20% • Typical age of onset was during childhood or adolescence • Strong familial link – 80% of hoarders grew up in house with someone who had hoarded • Most hoarders are female, live alone, and are unmarried

9. Why Do People Hoard? • Sentimental value • Difficulty with decision making • Difficulty organizing • Feelings of responsibility • Control/perfectionism • Fear of forgetting • Shrines Frost & Steketee; Cognitive-Behavioral Model of Compulsive Hoarding; Frost & Steketee; 1998

10. Hoarding and Control • Stems from a desire to control how objects are used • A desire to control the environment • A sense of responsibility for the proper use and well-being of objects • An inflated sense of responsibility for object and environment Furby, L. (1978) Possessions: Toward a theory of their meaning and function throughout the life cycle.

11. Factors Contributing to Hoarding INFORMATION PROCESSING #1 • Overestimate the need to remember or keep records ‘I need . . . to remember’ • Catastrophic assessment of consequences of forgetting information – ‘I just know once I get rid of . . . I will need it to . . . ’ • Fear of making wrong decision – ‘If I only knew for sure . . . ’

12. Emotional Attachment #2 • Attachments to possessions • Objects as extensions of oneself – ‘All of this is a part of who I am’ • Emotional ‘hyper-sentimentality’ to possessions – ‘When I look at . . . It reminds me of when . . . ’ • Attachments are associated with beliefs about meaning and importance of possessions – ‘You know as soon as I get rid of this paper, I will need it’ • Instrumental Savings

13. Erroneous Beliefs about Objects #3 • Erroneous or distorted beliefs about the nature and importance of possessions. • Perfectionism – ‘I want to make the right decision’ • Need for control – ‘I am in control and could get rid of this if I wanted to’ • Responsibility – ‘If not me, who?’ • Emotional comfort – ‘This helps me to feel comfortable’

14. Hoarding and the Elderly Population • Age-related illnesses are not primary cause of hoarding. • Hoarding can be a common symptom in dementia patients. • Memory loss: inability to discriminate between relative importance of articles in home. • Forty percent (40%) of hoarding complaints to local health departments involved elder service agencies. • Self-neglect associated with hoarding.

15. Factors that require further study • Genetic Factors • Different inheritance pattern than OCD • Autosomal recessive inheritance pattern • Genetic Markers on Chromosomes 4, 5, & 17 (Zang et al., 2002) • Brain Patterns differ from those with OCD • Lower metabolism in posterior cingulte gyrus & occipital cortex • Lower metabolism in dorsal anterior cingulate gyrus & thalamus(Saxena et al., 2004)

16. Hoarding as presenting problem “Hi, I’m a hoarder. Please help me clean my home.”

17. Hoarding-Related Presenting Problems • Pending eviction • Landlord harassment • Problems with neighbors • Complaints from the health or fire dept. • Rejection by a home care agency because of the need for heavy duty cleaning that the client refuses. • Referred by neighbor, family, clergy

18. Presenting Problem Unrelated to Hoarding • Requesting home delivered meals • Referred by an outside source (e.g. hospital discharge planner) for housekeeping services, not knowing that the situation is way beyond housekeeping. • Requesting assistance in applying for entitlements and having difficulty locating documents.

19. Assessment • Capacity • Resources • Family involvement • Other agencies/professionals • Finances • Physical variables • Physical frailty of the client • Logistics (e.g. walk-up apartment, etc.)

20. Transtheoretical Model of Change Precontemplation Relapse Contemplation Maintenance Determination Action SynonymsDetermination = PreparationTermination = Exit Termination

21. Assessing Stage of Change • Ask initial question about client reason for seeing you • Listen carefully and non-judgmentally • Ask follow-up question until you can form an assessment of what stage the client is in • Set short-term goal of moving stage by stage until you get to the Action Stage

22. Engagement is Key • Engage client before you engage the problem • Membership Theory • Constant Connectedness • Practice Patience - You can’t force engagement • Think ‘Bank Account’ • Deposits have to be made before you can make a withdrawal

23. Relaxation and Guided Imagery • Start with Deep Breathing Exercise • Have client practice during and after sessions • Advance to Visualization • Visualize ‘Time Before Hoarding’ • What do they see? How do they feel? • Anchor feeling • Discuss client’s reaction

24. The Reality Check • What are they seeing now • Ask for details to stimulate emotional reaction • Help them understand what ‘it’ represents? • What are the consequences to what they see? • Ask them for specific examples • “The Magic Wand” • What would they ‘really’ like?

25. Behavioral Activation • What did your client like to do, that they are no longer doing? • Start with something Easy and Pleasurable • Moving from determination to action requires a belief that change is possible • Contract for 1 behavior/activity • Assess capacity/desire to do it? • This will inform treatment plan to remove clutter

26. Problem Solving Treatment • Client just doesn’t know where to start • Start with ONLY 1 problem • What are some solutions ProsCons • Effort Effort • Time Time • Money Money • Emotional Impact Emotional Impact • Involving Others Involving Others

27. Problem Solving Treatment • Contract for Action Plan • Document tasks completed • Contract for Daily Pleasant Activity • Rate how Satisfied activity made you feel • 0 = Not at all 10 = Extremely • Follow-Up Visit • Rate how you felt with effort • 0 = Not at all 10 = Extremely

28. Solutions Focused Brief Therapy • 7-Principles • Client is Unique • Client has ‘Their Special Way’ of reaching goals • There are Exceptions of every problem that can be created by client and you to build solutions • Clients are ALWAYS cooperative • Only clients can change self • Change is occurring all the time • CLIENT and YOU are BOTH experts

29. Narrative Therapeutic Behavioral Intervention • 5-Principles • Externalizing Problem-Shift focus from person to problem • Explore origin, consequence • Deconstruct Problem Story • Landscape of Action Question • Creating an alternative life story • Create landscape of Meaning Questions • Make meaning of the sequence of events-values-beliefs Frost & Steketee; Cognitive-Behavioral Model of Compulsive Hoarding; Frost & Steketee; 1998

30. Cognitive Behavioral Treatment Model • Treatment Goals • Explore irrational thought patterns and replace with rational thoughts • Improve decision-making skills • Reduce accumulation of new possessions • Translate cognitive change into behavioral change (excavation) • Reinforce – Reframe – Reinforce Again

31. Cognitive-Behavioral Treatment Model • Treatment Rules • Therapist can’t touch or throw away anything without permission • All decisions are made by client • Possessions are categorized before handling them • Treatment proceeds slowly and systematically • Flexible and creative strategies are a must • “OHIO” rule: Only Handle it Once

32. Minimum safety guidelines • Working toilet and sink • Adequate walking paths in rooms used on a regular basis • Safe walkway • No infestations of insects or rodents • No excessive accumulation of garbage • Access to all required means of egress (doors, fire escapes, etc.) • Working electrical outlets

33. Heavy Duty Clean-outs • Preparation • Allow client as much control as possible • Explain in advance what the cleaning will entail, how and why it is being done • Allow the client to set aside valuable items that he/she wishes to keep • Negotiate, negotiate, negotiate

34. When Cleanout Begins • The Organizational Plan is set and Client Agrees to Rules Keep – Sell – Donate - Trash • Client understands that all decisions belong to them • Start from outer perimeters • What did the item represent to client when it was acquired? • What does it represent now? • Only Handle it Once - OHIO

35. All heavy duty clean-outs are traumatic and risk psychiatric decompensation. Make sure to have psychiatric back-up in place

36. Alternatives to Heavy Duty Clean-outs • Negotiation • Collaboration • Extreme reorganization • Use of commercial storage spaces

37. BEFORE

38. AFTER

39. Professional Ethics and Working with Hoarders

40. In Conclusion • Working with Hoarders requires a significant investment • Start Slow; Go Slow; Finish the Job • Multidisciplinary approaches work best • Be open to compromise • Focus on the war, not the battle • Good Luck!