Geriatric Grand Rounds March 29, 2011 This Full House - An Intervention Program to Assist Older Adults who live with Compulsive Hoarding Doneka Simmons, BA, RSW Social Worker/This Full House Coordinator

Disclosure I have no relationship that could be perceived as placing me in a real or apparent conflict of interest in the context of this presentation.

Presentation Outline 1. Hoarding: What it is…What it isn’t! 2. Promoting Health Homes, Healthy Relationships, Healthy Communities – How do we do that? 3. A Journey Worth Traveling – How we got here and where we want to go – Overview of Program specifics, including success stories and challenges. 4. Q & A

Definition of Compulsive Hoarding - The acquisition of, and failure to discard a large number of possessions that appear to be of useless or limited value - Cluttered living spaces that cannot be used as intended - Significant distress and/or impairment caused by the clutter (Frost & Hartl, 1996) Only pathological if it meets #2 and #3 = clinical problem (e.g. – surfaces full, no organization, inappropriate things in places like kitchen, main door blocked) Not the saving that’s the problem – it’s the dysfunction (e.g. saving everything – valuable and non-valuable)

Commonly Hoarded Items 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)

Hoarding behaviors may also be present in the following disorders: - Obsessive Compulsive Personality Disorder - Attention Deficit Hyperactivity Disorder - Impulse Control Disorders - Depression - Eating Disorders – Anorexia Nervosa - Brain Injury - Bipolar Affective Disorder - Schizophrenia - Various Dementias (Age & Opportunity Inc. Presentation, 2008)

Co-morbid Problems (in addition to hoarding) - Depression – 57% - Social Phobia – 29% - Generalized Anxiety Disorder – 28% - Obsessive Compulsive Disorder – 17% - Attention Deficit Disorder – 15-20% - Personality Features – Anxious/avoidant, dependent, paranoia, Dementia (Age & Opportunity Inc. Presentation – April 2008)

DSM-IV Criteria - Anticipated that in the revised DSM-IV (2013), will have its’ own classification - Currently, listed as accompanying other disorders (e.g. OCD with hoarding) (OCD Conference, August 2008)

Neurobiologically Distinct Disorder MRI and PET scans indicate lower Lower levels of brain activity in the anterior and posterior cingulate gyrus – those parts of the brain associated with focused attention, motivation, decision-making and problem-solving, as well as spatial orientation and memory. (

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 women than men (Age & Opportunity Inc., Presentation, 2008)

Epidemiology Samuels et al., 2008 – Prevalence and correlates of hoarding behavior in a community-based sample, Behaviour Research and Therapy 46 (2008) Adjusted prevalence rate of hoarding in adults = 5% - Over 10 million people in the US have clinically significant hoarding 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

It is a proccess: - Why do I have this? - Why did I keep it? - Was it difficult to let it go? Clients might ask…Does it make sense to keep it now? (reported by client of TFH Program) Letting Go Exercise

Clutter and Hoarding - Behavioral manifestation – e.g. avoidance of distress, avoiding what is hard = Clutter - Decision making may be the central feature of hoarding - 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 in Elders - Fire hazard - Risk of falling - Unsanitary conditions - Medical problems (Kim, Steketee, & Frost, 2001)

Awareness of Problem (insight) among Elders - 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 years - clients like to talk about past & their relationships/losses and less on problem-solving

This Full House – Intervention Program to assist Elderly Compulsive Hoarders - Pilot began in December 2007 – December 2008 (extension to January 2009) - Funding provided by the Government of Canada, New Horizons for Seniors Program - At that time, we were only the second program in Canada to specifically address hoarding behavior among seniors. The first program is was being delivered at Age & Opportunity, a senior serving organization in Winnipeg. - 3 rd Program being delivered now in Calgary

Pilot Specifics 1. Explore the need for a “This Full House” program in Edmonton 2. Learn from the Winnipeg experience and customize our program to meet the needs in Edmonton 3. Pilot the program with a limited number of people to validate the program design

Pilot – #1 – The Need in Edmonton No other program or agency in Edmonton with formal approach or program geared specifically to hording in seniors Very little known about hoarding and seniors Program Advisory Committee: - Alberta Health Services, Environmental Health - Alberta Health Services, Home Care - University of Alberta, Faculty of Extension - Alberta Seniors Citizens’ Housing Association - The United Way - Alberta Health Services, Addictions and Mental Health - Alberta Seniors & Community Supports - Senior citizen - Greater Edmonton Foundation - Edmonton Fire Rescue Services - Edmonton Humane Society

Pilot - #2 – Winnipeg Program – Customize Edmonton Program Age & Opportunity Consultant – Spring 2008 (similarity of organizations and findings) - Delivered in Winnipeg since Increase in cases where intervention required (2000 = 38 cases, previous years = 1-2) - Vulnerable persons committee interested – effective community development approach - Costly in terms of professional time devoted to issue - Costly in terms of hiring other professional services - Some homes require a major “clean-up” prior to This Full House involvement - Health & Safety Issues

Pilot - #3 – Validate Program Design - As of December 15, 2008 – 32 clients have been referred – referral sources effective - Protocol effective - Community based approach best – Advisory Committee

Post-Pilot Program Updates - Monthly Lunch Group – Had our First Year Anniversary in June 2010! - Increased funding for clean-ups – Alberta Seniors and Community Supports - Increased awareness – more media attention - Increase in referrals - Success of current vs. future intervention programs - Sustainable, ongoing funding is challenging to find - University of Alberta, Faculty of Extension – Research Study - Grant MacEwan University Research Study

Year 2 & Year 3 – Need Increases - In 2008 (pilot year) – 32 Information & Referral Requests - In 2009 (post pilot year) – 74 Information & Referral Requests - In 2010 – 151 Information & Referral Requests Continue to double our numbers from previous year - Average Caseload for 0.5 Social Worker = 43

Program Outcomes 1.Prevent homelessness. 2.Increase seniors’ connection to other needed community services. 3. Increase senior’s quality of life. 4.Increase awareness in the community.

How we do what we do 1. Referral received 2. Appointment for office or home visit 3. Assessment Process (home visit) – Assessment Tool used to assess level of risk 4. Develop Action Plan – goals and objectives, timelines, costs – Harm Reduction Model 5. Hands-on

How we do what we do cont….. 6. Develop Care Plan – Social Work Needs Assessment 7. Individualized and client centered 8. Relationship building and trust – foundation of any successful intervention 9. Participation in Lunch Group 10. Ongoing after-care

Some of what we’ve learned along the way 1. Value of home visit – have to see to believe 2. Affects the whole family 3. Emotional rollercoaster 4. Effective communication and helping strategies 5. Individual and group support crucial to help with motivation and insight 6. Progress does happen – sometimes in baby steps, sometimes much quicker 7. Don’t assume anything – getting to know your client 8. Heros – every story is different but we are inspired by them all.

Lunch Group Participants - 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.

Still Traveling the Road… Strengthening our community capacity: - Advisory Committee evolves in to a Hoarding Coalition - Additional Supportive Groups to include a therapeutic group for graduates of the Lunch Group - Needs of families and caregivers –education & support - More financial resources - Etc., etc…

Questions & Answers Q & A