Interagency Outreach Worker’s Meeting November 2013 Hoarding 101 Doneka Simmons This Full House Coordinator, SAGE

Presentation Overview/Objectives 1. Overview of Hoarding & Letting Go Exercise – Learn how to identify hoarding and the difference between clutter and hoarding 2. Implications for Service Providers – Tips on making appropriate referrals and how to provide continued support to your clients 3. Update on Sage’s This Full House Program & Integrated Community Response to Hoarding in Edmonton Proposal

Letting Go Exercise It is a process: - Why do I have this? - Why did I keep it? - Can I let it go? - How do I feel about letting it go? Was it difficult?

Definition of Hoarding - The acquisition of, and failure to discard, a large number of possessions that appear to be of useless or limited value - Living spaces are sufficiently cluttered so as to preclude activities for which those spaces were designed - Significant distress or impairment in functioning caused by the hoarding (Frost & Hartl, 1996)

Hoarding Disorder: Diagnostic Categorization – DSM-5 A. Difficulty discarding/parting with objects B. Difficulty discarding due to urges to save C. Symptoms result in accumulation of possessions that clutter living areas D. Distress or interference E. Not better accounted for by medical condition F. Not better accounted for by other mental illness Diagnostic Specifiers: (With) excessive acquisition, poor insight

Paper Containers Clothing & Shoes Plastic bags Mail Food Books Objects from other people’s trash Handouts, brochures, extras (do you really need an extra pen?) (Tompkins, 2008) Commonly Hoarded Items

Definition of Animal Hoarding - Accumulation of more animals than a typical pet owner, not a breeder - Failure to provide adequate facilities for the animals: overcrowded or unsanitary living conditions, inadequate veterinary care, poor nutrition, animals unhealthy - Reluctance to place animals in others’ care (Patronek, Lear & Nathanson, 2006)

Definition of Squalor - Filth or degradation from neglect - 2 forms: personal and domestic - Diogenese Syndrome (older adults) - Home Environment Index (Rassmussen et al., 2009)

Lifetime Mental Illness Co-morbidity - Major Depressive Disorder (MDD) 69.1% - Social Phobia 28.1% - Generalized Anxiety Disorder (GAD)24.9% - Obsessive Compulsive Disorder (OCD) 17.0% - Specific Phobia16.1% - Post Traumatic Stress Disorder (PTSD)12.4% - Substance Abuse12.0% - Bipolar Disorder1.4% - Panic Disorder1.4% - Eating Disorder 1.4% - Frost, Steketee, Tolin, Glossner (2011)

Other Significant Factors Genetic Links – a large number had relatives who hoard – hoarding phenotype Usually a long-term behaviour pattern – (e.g. can’t decide and fear of putting things out of sight) Usually single or divorced Usually more men than women Occurs across all socioeconomic strata. More commonly associated with lower income levels – can be a cause of homelessness (Age & Opportunity Inc., Presentation, 2008 & Bratiotis, Christiana. The Hoarding Handbook, 2010)

Epidemiology Samuels et al., 2008 – Prevalence and correlates of hoarding behavior in a community-based sample, Behavior Research and Therapy 46 (2008) Adjusted prevalence rate of hoarding in adults = 2 - 5% - Over 10 million people in the US have clinically significant hoarding – In Edmonton, 57,500 people With increasing age, the prevalence is higher – average age is 50

Model of Compulsive Hoarding (Frost & Hartl, 1996) Biological Vulnerabilities Information Processing Deficits Erroneous beliefs about possessions Problems with emotional attachment Reinforcement Factors

Clutter and Hoarding - Behavioral manifestation – e.g. avoidance of distress, avoiding what is hard = Clutter - Decision making may be the central feature of hoarding (Pencil/Pen Demonstration) - Physically reducing clutter does not address the hoarding problem - Changing beliefs and the meaning of possessions eventually reduces clutter - Improving organizing habits is a necessary component for change (OCD Conference, August 2008)

Course of Compulsive Hoarding - Saving can begin in childhood, onset age 13 - Little evidence for history of material deprivation – e.g. war times - Hoarding may be precipitated by loss - Chronic or worsening course - Insight fluctuates - Severity range from mild to life-threatening (OCD Conference – August, 2008)

Hoarding Complications for Older Adults - Fire hazard - Risk of falling - Unsanitary conditions - Medical problems (Kim, Steketee, & Frost, 2001)

Awareness of Problem (insight) among Older Adults - Clear insight = 15% - Partial insight = 12% - No insight = 73% (Frost et al., 2000)

Implications for Service Providers trust, fear, loss of hope motivation average length of intervention = 1.5 – 2.0 yrs. lifelong process of changing behaviors continue to encourage the client to action

The Value of the Home Visit Unique look into the client’s situation Allows us to help the client create appropriate action plans

By being in the home it also allows us to evaluate our clients safety: Does the person have to manoeuvre around piles to get to the kitchen? Does the person walk sideways into the bathroom? Does the person hold on to piles of books and papers, to make it up the stairs?

Home Visit Allows an opportunity to determine suitability

Get to know your client. Listening to your client Learn your client’s story Encourage action planning Do not place judgment on the progress. Don’t assume Don’t challenge and don’t make conclusions Be open, honest and genuine

Referring to TFH Program - Utilize This Full House Referral Form - Indicators of Hoarding Behavior Sheet - Call Information & Support Program at Sage at Understand your continued role after the referral has been made

The Process is an Emotional Rollercoaster…

Individual and group support is crucial to help with motivation and insight

Participants Feedback - I realize that I have conquered a lot but I am still open to new ideas. - When it comes to this group, I feel like I don’t have to lower my eyes when I’m speaking. - Since coming to this group, I am not ashamed to speak of where I am at. - This group provides a social opportunity for me, otherwise, I wouldn’t go anywhere. - I like the relaxed atmosphere of the group. I’ve been going to groups for years and this one is the best. - I wish we could meet every week.

This Full House Assists Individuals 55+ who live with hoarding behavior - Pilot began in December 2007 – December Funding provided by the Government of Canada, New Horizons for Seniors Program - Only second program in Canada. - Additional programs are now being offered across Canada (Example: Calgary and Vancouver)

5 years Later….Where are we now? - In our 5 th year of program delivery - Monthly Lunch Group - Increased funding for clean-ups – Alberta Seniors and Community Supports - Increased awareness – more media attention - Increase in referrals - No sustainable funding - Hoarding Coalition - New! Integrated Community Response to Hoarding Response Model

Hoarding Coalition Vision Statement Community partners work together in an integrated, collaborative system of services and supports that address the experiences and needs of individuals living with Compulsive Hoarding.

Community Collaborations: Integrated Community Response to Hoarding in Edmonton Project December 2012 – March Hoarding behavior is both a serious private health matter as well as a public health and safety matter - Belief that addressing hoarding through an integrated across the lifespan approach, will reduce the burden on the health care system - No discipline has all the expertise – multi-disciplinary approach necessary - The prevalence #’s speak for themselves

Integrated Community Response to Hoarding in Edmonton Proposal - 16 Recommendations - Development and distribution of Proposal - Hoarding Coalition to continue in its’ role - Continue to identify who needs to be involved - Continue to offer TFH Program (sustainable funding) - Client Story

Thank you Time for Questions