Risk and Protective Factors Related to Hoarding

Handouts for the Webinar

Risk and Protective Factors Related to Hoarding April 23, 2013 Presenters Arlette Lambert Child Welfare Policy Consultant NC Division of Social Services Joyce Massey-Smith Adult Program Representative NC Division of Aging and Adult Services Jessica Williams Consultant Susan McGuire Director of Older Adult Ministries Edenton Street United Methodist Church (Raleigh, NC) Produced by Family and Children’s Resource Program, part of the Jordan Institute for Families UNC-Chapel Hill School of Social Work Sponsored by NC Division of Social Services

Contents 5 Levels of Hoarding ..................................................................................................................... 2 Myths vs. Facts Living with a Hoarder .......................................................................................... 3 Safety, Health, and Well-Being Needs Checklist .......................................................................... 4 Diseases Carried by Animals and Passed to Humans ................................................................... 5 Sample Journal Entry .................................................................................................................... 6 The Plan of Action (POA) Model .................................................................................................. 7 Plan of Action Worksheet ............................................................................................................. 8 Resources ..................................................................................................................................... 9 References .................................................................................................................................. 10 Webinar Slides ............................................................................................................................ 11

April 23, 2013 Webinar Jordan Institute for Families, UNC-CH School of Social Work

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5 LEVELS OF HOARDING LEVEL 1 A level 1 household is “normal,” with some clutter, and is clean and livable and may have occasional pet odors, some evidence of rodent or pest activity. Household is considered standard. No special knowledge in working with the disorganized person is necessary.

LEVEL 2 A level 2 household has problems with pet and pest damage, some doorways blocked by clutter and one broken household appliance like a washer, dryer or refrigerator. Household requires professional organizers or related professionals to have additional knowledge and understanding of disorganization and hoarding.

LEVEL 3 Levels 3, 4 and 5 the clutter is from the floor to ceiling, the house falls in disrepair, plumbing leaks, windows are broken, food is rotting, and there are no clear paths, no place to sit, eat or sleep, and the is major pest infestations. A level 3 household may require services in addition to those a professional organizer and related professional can provide. Professional organizers and related professionals working with Level III households should have significant training in hoarding and have developed a helpful community network of resources, especially mental health providers.

LEVEL 4 A level 4 Psychological, medical issues or financial hardships are generally involved. Resources will be necessary to bring a household to a functional level. These services may include pest control services, "crime scene cleaners," financial counseling and licensed contractors and handypersons. Household needs the help of a professional organizer and a coordinated team of service providers.

LEVEL 5 A person with a level 5 hoarding problem can no longer live in his or her own home safely. Household will require intervention from a wide range of agencies. Professional organizers should not venture directly into working solo with this type of household. The Level V household may be under the care of a conservator or be an inherited estate of a mentally ill individual. Assistance is needed from many sources. A team needs to be assembled. Members of the team should be identified before beginning additional work. These members may include social services and psychological/mental health representative (not applicable if inherited estate), conservator/trustee, building and zoning, fire and safety, landlord, legal aid and/or legal representatives. A written strategy needs to be outlined and contractual agreements made before proceeding. Excerpted from NC State University. (2012). Where's my bed? An educational program for families living with hoarding. Raleigh, NC: Author.


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MYTHS VS FACTS LIVING WITH A HOARDER __________________________________ Myth: All hoarders are older, Caucasian women, so I don’t have to worry about becoming one.

Fact: Compulsive hoarding is a hidden danger in the community and can affect anyone, regardless of economic, mental, race, age or sex status.

Myth: I don’t have a problem with hoarding. I just collect a lot of items and will have a yard sale or sale them online soon to get rid of them. I don’t need help from anyone.

Fact: Individuals with compulsive hoarding commonly display lack of awareness of the severity of their behavior, sometimes denying that they have a problem and often resisting intervention attempts and failing to follow through with therapeutic assignments (Tolin, Fitch, Frost, & Steketee, 2010).

Myth: Hoarding only affects me and no one else should have to deal with it within the household. It’s my stuff, so leave it alone.

Fact: Homes are completely packed that their owners can't cook in their kitchens because every surface-is covered, can't sleep in their beds, can't have visitors and often lose spouses and children because of the appalling living conditions (Hughes, 2010).

Myth: Just because I became a hoarder doesn’t mean that my children will. They will learn from my mistakes and learn not to become a hoarder.

Fact: Compulsive hoarding may be hereditary. This can greatly affect children of hoarders as they grow up in this environment and may eventually begin to experience the same behaviors.

Myth: The house is safe to live in. I have the boxes stacked straight, so I don’t have to worry about them falling down.

Fact: Safety issues in the home can include creating fire hazards, falls (especially for older adults), unsanitary conditions and the danger of clutter piles falling on family members.

Excerpted from NC State University. (2012). Where's my bed? An educational program for families living with hoarding. Raleigh, NC: Author. April 23, 2013 Webinar Jordan Institute for Families, UNC-CH School of Social Work

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SAFETY, HEALTH, AND WELL-BEING NEEDS CHECKLIST There are questions that are necessary to answer upon inspecting the home’s safety in order to determine the health and wellbeing of the individuals living in the home. You should ask yourself…  Is there an immediate health & safety threat to the person(s) living in the home?  Is there any structural damage to the house? If so, what kind?  Are the exits/doors/windows blocked by piles creating fire and safety hazards for the occupants of the home and blocking accessibility in case of a fire or emergency?  Is there adequate house cleaning getting rid of dust, dirt, cobwebs, etc.?  Are there accumulated piles of objects and items creating unsafe and high levels?  Are there rodents, insects, or feces and garbage in the home creating unpleasant and hazardous odors? Are these odors wafting over to the neighbors? Adapted from http://ahelpinghandforyou.blogspot.com/2011/01/safety-risks-of-hoarding.html

Excerpted from NC State University. (2012). Where's my bed? An educational program for families living with hoarding. Raleigh, NC: Author.


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DISEASES CARRIED BY ANIMALS AND PASSED TO HUMANS Disease Name

Type

Carrier

Brucellosis

Bacterial disease

Dogs and farm animals

Campylobacteriosis

Bacterial disease

Cats, dogs, farm animals and improper food handling

Cat Scratch Disease or Cat Scratch Fever

Bacterial disease

Cat scratches or bites

Cryptococcus

Fungal disease

Pigeon droppings

Cryptosporidium

Parasitic disease

Dogs, cats and farm animals

Giardia lamblia

Parasitic disease

Animals and water

Histoplasmosis

Parasitic disease

Bat feces

Hook Worm

Parasitic disease

Dogs

Leptospira

Bacterial disease

Livestock, dogs, rodents and contaminated water

Lyme Disease

Bacterial disease

Dogs and ticks

Lymphocytic Choriomeningitis

Viral disease

Rats, guinea pigs, and mice

Chlamydia psittaci

Bacterial disease

Pet birds including parrots and parakeets

Q Fever

Bacterial disease

Cats, dogs, sheep and goats

Rabies

Viral disease

Dogs, cats, horses and wild animals

Rocky Mountain Spotted Fever

Rickettsial disease

Dogs and ticks

Roundworm

Parasitic disease

Dogs, cats and their environment

Salmonella

Bacterial disease

Reptiles, birds, dogs, cats, horses, farm animals, and improper food preparation.

Tapeworm Infection

Parasitic disease

Dogs, cats with flea infestation

Toxoplasmosis

Parasitic disease

Cats and their environment

West Nile Virus

Viral disease

Spread by mosquitoes to humans, dogs, cats, and farm animals

Additional information available at: http://www.aaahoardingbiohazard.com/contamination.html Excerpted from NC State University. (2012). Where's my bed? An educational program for families living with hoarding. Raleigh, NC: Author.


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SAMPLE JOURNAL ENTRY Wednesday, September 28 I talked with mom today about spending time at Uncle Bob’s because I have no place to study. I tried to use the communication skills we talked about in class to tell her how I felt about the clutter in my room. I told her this is not my stuff and I really need my own space. She said she needed her stuff. I told her I loved her and I did not want to get rid of her stuff just move it out of my room. She started talking about not touching her stuff so I just listened. I tried real hard to tell her my feelings but I know she was not listening. I talked with Uncle Bob and he said I was welcome any time to come over to his house and do my homework or invite friends to visit. I know if I tell mom I am having friends over to visit me at Uncle Bob’s it will hurt her feelings. I talked with Dad when he got home from work and he is going to try and talk again with Mom. Dad wants the collecting to stop, he has got to find some help. Mom’s collecting is getting way out of control. I don’t want to have Dad move out but he said he was thinking about it. Dad tried to talk with mom, I could hear them arguing. Dad just got in his car and drove away. I am afraid he won’t come back tonight and I am frightened. Our next class is on Tuesday, I hope they can help us. I don’t want to lose my family.

Excerpted from NC State University. (2012). Where's my bed? An educational program for families living with hoarding. Raleigh, NC: Author


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THE PLAN OF ACTION (POA) MODEL 1. Choose the activity for the POA 2 . Set goals and timeline

7. Assess the POA

6. Implement the POA

3. Select resources

5. Choose a POA mentor

4. Select rewards

The Plan of Action model is designed to provide a family with a template for choosing and implementing an activity that builds family relationships and addresses an ongoing need (i.e. cleaning up an area in the house, removing some objects, sharing in an event, designing a fire escape route). The POA is an activity for the family and not designed to single out a particular family member for hoarding.



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THE PLAN OF ACTION WORKSHEET



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RESOURCES SUPPORT GROUPS There is one support group for hoarders that meets in-person in the Triangle area. This free group meets on the second Thursday of each month from 7:00 to 9:00 p.m. The contact information: Hope Community Church, 821 Buck Jones Rd., Raleigh, NC 27606-3318, (919) 532-0620, Facilitator: Eileen Stevie. Below are several on-line support groups that may be able to provide you with support and information. Please visit http://www.hoarders.org/sg.html for additional information on on-line support groups.      

Hoarding: Compulsive Hoarding Community: H-C. http://health.groups.yahoo.com/group/H-C/ Stepping Out Of Squalors. http://takeonestepatatime.proboards80.com/index.cgi. Hoarding: Involved with a Hoarder: Overcoming Hoarding Together (O-H-T). http://health.groups.yahoo.com/group/O-H-T/ Partners of Hoarders. http://groups.yahoo.com/group/Mates-of-Messies For Parents, Friends and Children of Hoarders. http://health.groups.yahoo.com/group/Friends-of-Hoarders Children of Hoarders. http://health.groups.yahoo.com/group/Friends-FamilyofHoarders-Clutterers

ORGANIZERS, CLEANING, AND PEST CONTROL SERVICES Organizers: The organizers need experience with Chronic Disorganization and will help hoarders manage their residence. These organizers will have access to area resources to assist the residence to become practical again. This includes cleaning services and pest control agencies. The organizer can discuss treatment plans with the hoarder and anyone else that they deem essential to the process based on the condition of the home. In order to locate local organizers with experience, please visit http://www.napo.net for additional information. Cleaning Services: When choosing a cleaning service, you should pick one that has experience with cleaning homes of hoarders. If possible, chose a company that has been trained by Hording Cleanup. Hoarding cleanup not only entails clutter clean up, but the recovery of all the items in the home that are still useful, valuable and sentimental. A hoarding cleanup company should carry all insurances including general liability, workers compensation, automobile, and they must be bonded. You may locate local cleaning agencies at http://hoardingcleanup.com. Pest Control Agencies: When evaluating the effectiveness of pest management methods, ask for specific steps that the Pest Control Operators will use in his or her pest management program. You should pick a method that allows for homeowner cooperation for maximum effectiveness. Control methods include sanitation, exclusion, and the use of multiple pest management products. A pest control agency should be licensed, insured, and they must be bonded.

WEBSITES       

A & E Television Network (2011). Hoarders Series. http://www.aetv.com/hoarders/ Children of Hoarders. http://health.groups.yahoo.com/group/Friends-FamilyofHoarders-Clutterers For Parents, Friends and Children of Hoarders. http://health.groups.yahoo.com/group/Friends-of-Hoarders Hartford Hospital (2011). Compulsive Hoarding. Anxiety Disorder Clinic. http://www.harthosp.org/InstituteOfLiving/AnxietyDisordersCenter/CompulsiveHoarding/default.aspx Hoarding: Involved with a Hoarder: Overcoming Hoarding Together (O-H-T). http://health.groups.yahoo.com/groups/O-H-T/ Partners of Hoarders. http://groups.yahoo.com/Mates-of-Messies Thomas, G. (October 14, 2009). It takes a community to help a hoarder. Metropolitan Organizing , LLC. Cary, NC at http://metropolitanorganizing.com/managing-modern-life/hoarders-guidance/it-takes-a-community-to-help-ahoarder/

DVD (NON-FICTION) 

Information about compulsive hoarding. Part 1: An introduction to compulsive hoarding. Part 2: Decluttering the home. Ingica Productions. Actor: Dr. Renae Reinardy.

Excerpted from NC State University. (2012). Where's my bed? An educational program for families living with hoarding. Raleigh, NC: Author. April 23, 2013 Webinar Jordan Institute for Families, UNC-CH School of Social Work

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REFERENCES Anxiety and Depression Assoc. of America. http://www.adaa.org/understanding-anxiety/obsessive-compulsivedisorder-ocd/hoarding-basics Cornell University. (2012). Best practices: Top 20 decluttering tips. Retrieved February 27, 2012, from Cornellaging.org: http://www.environmentalgeriatrics.com/home_safety/decluttering.html Cornell University. (2012). Clutter and hoarding. Retrieved February 27, 2012, from www.cornellaging.org: http://cornellaging.org/gem/hoarding_index.html Defining compulsive hoarding. (2010). Retrieved April 11, 2012, from Compulsive- Hoarding.org: http://www.compulsive-hoarding.org/Definition.html Ekerdt, D., Sergeant, J., Dignel, M. and Bowen, M.(2004) Household Disbandment in Later Life. The Journals of Gerontology, 59,5. 265-273. Fagala, M. (2012). Mark Fagala cleanup specialist. Retrieved April 10, 2012, from Fagala Biohazard Specialists, LLC: http://carolinacrimescenecleanup.com/ Frost, R. (2012). Hoarding assessment tool. Cornell University, Weill Medical Center, 1-4. http://www.environmentalgeriatrics.com/pdf/assessment_tool.pdf. Frost, R., Steketee, G., & Williams, L. (2000). Hoarding: a community health problem. Health and Social Care in the Community , 229-234. Internat’l OCD Foundation. http://www.ocfoundation.org/hoarding/overview.aspx Mahesh, S. (2012). Compulsive hoarding . Retrieved February 27, 2012, from Ezinearticles.com: http://ezinearticles.com/?CompulsiveHoarding&id=5540076 Mataix-Cols, D., Frost, R., Pertusa, A., Clark, LA, Saxena, S., J. Leckman, Stein, D., H. Matsunaga, & Wilhelm, S. (2010). Review: Hoarding Disorder: A New Diagnosis for DSM-V? Depression and Anxiety 27 : 556–572. Reinardy, R. (Director). (2009). Information about compulsive hoarding [Video]. Sollitto, M. (2012). Senior anxiety, OCD, and hoarding. Retrieved February 27, 2012, from Agingcare.com: http://www.agingcare.com/Articles/senioranxiety-hoarding-ocd144712.htm Steketee, G. (2010). From Dante to DSM-V: A short history of hoarding. Retrieved April 27, 2012, from International OCD Foundation: http://www.ocfoundation.org/hoarding/dante_to_dsm-v.aspx Steketee, G., & Frost, R. (2010). Stuff compulsive hoarding and the meaning of things. NY: Houghton Mifflin Harcourt Publishing Co. Tolin, D., Frost, R., & Stekee, G. (2007). Buried in treasures: Help for compulsive acquiring, saving, and hoarding. NY: Oxford Press. Whitfield, K., Daniels, J., Flesaker, K., & Simmons, D. (2012). Older adults with hoarding behavior aging in place; Looking to a collaborative community- based planning approach for solutions. Journal of Aging Research, 19.


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April 23, 2013 Hoarding Webinar

4/18/2013

Hoarding: Risk & Protective Factors

Welcome! Please click on the colored link below to download the handout for today: 04-23-13 webinar handout

Learning Objectives    

Identify behaviors characteristic of hoarding Distinguish between collecting and hoarding and identify common reasons for both Identify possible risks and protective factors associated with hoarding Know how to find help for the family

April 23, 2013 Webinar UNC-CH School of Social Work

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Presenters:

Susan McGuire Jessica Williams Arlette Lambert Joyce Massey-Smith Technical Support: Facilitator:

Phillip Armfield

Mellicent Blythe

John McMahon


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NC Division of Social Services and the UNC‐CH School of Social Work

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4/18/2013

Increase in Awareness of Hoarding Growing media attention Easier access to “stuff”

 

“Over the past 50 years, the number of possessions owned by the average person has increased dramatically. Modern civilizations are based on consumerism, saving, and acquiring, the more people accumulate the better the country does.” (Tolin, D., Frost, R., Steketee, G., 2007, p.11)

 

Increasing number of self-storage units Aging population April 23, 2013 Webinar UNC-CH School of Social Work

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Why Do We Acquire Things? 

  



People acquire and dispose of possessions to help us work and play throughout the life course. Things are consumed, wear out, lose our interest, are outgrown or replaced. As we get older we accumulate more things. People who move and downsize have the opportunity to clean out and dispose of things. For some older adults the amount of their possessions does not decrease. April 23, 2013 Webinar UNC-CH School of Social Work

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Why Do We Keep Things? Useful Worth money  Give us pleasure  Represent us  Conjure the future  Represent people and relationships  Represent a legacy  Need to be saved or recycled  Because we can  

D. Ekerdt, et al., 2004


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4/18/2013

Collecting versus Hoarding 

Collecting -The hobby of collecting involves the intentional seeking, locating, acquiring, organizing, cataloging, displaying, storing, and maintaining items are of interest to the individual collector.



Hoarding - The accumulation of things that have little or no value and the inability to dispose of things, sometimes referred to as disposophobia. April 23, 2013 Webinar UNC-CH School of Social Work

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4 Types of Hoarding 1. 2. 3. 4.

Clinical compulsive hoarding Perfectionist hoarding Animal hoarding Senile Squalor Syndrome, Diogenese Syndrom, or Syllogomania


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Is this collecting or hoarding?

Wikimedia Commons is a freely licensed media file repository.


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4/18/2013

Characteristics of Hoarding 1.

Collecting too many items ¾ hoarders shop too much ½ report excessively collecting free things

 

2.

Difficulty getting rid of items Obsessive thoughts and actions about items Feelings of anxiety and suspicion around clean-up




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Characteristics of Hoarding, cont. 3.

Disorganization 

4.

Usually mix of valuable and worthless items, including trash and spoiled food, that complicates clean-up

Emotional distress and functional impairment due to hoarding International OCD Foundation; Association; Anxiety and Depression Assoc. of America April 23, 2013 Webinar UNC-CH School of Social Work

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Diagnosis of Hoarding 

Debate over whether it is a symptom of Obsessive-Compulsive Disorder or a separate disorder



Recommended to be included as separate diagnosis in DSM-V Key issue for diagnosis: The symptoms cause clinically significant distress or impairment in social, occupational, or other important areas of functioning (including maintaining a safe environment for self and others) Mataix-Cols, et al., 2010;



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18-40% of OCD sufferers display hoarding sx


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4/18/2013

Prevalence

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Up to 5% of world population • 2x rate of OCD • 4x rate of bipolar and schizophrenia • - Cited by International OCD Foundation


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Demographics of Hoarding 

Age



Marital status



Genetics



Socio-economic status

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Connection to DSS Practice: Risk Factors Use your chat box: what are some of the risk factors you think would be associated with hoarding?


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4/18/2013

Risk Factors of Hoarding: Safety  Fire 

Health and sanitation 





Increase/worsening of illness (chronic headaches, respiratory problems, allergies, asthma, etc.) caused by dust, mold, mildew; toxic fumes; poor ventilation; bugs or rodents, etc. May be expired/rotten food or lack of access to kitchen

Risk of injury 

Blocked windows and doors; unstable debris; damaged or rotting structure


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Risk Factors: Environmental and Structural 

Damage to house structure from clutter



Lack of home maintenance



Dangerous electric or gas appliances

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Lack of running water and other utilities

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Burst pipes, flooding, etc. April 23, 2013 Webinar UNC-CH School of Social Work

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Risk Factors: Social/emotional  Possible

eviction  Emotional impact in family members: frustration, shame, resentment, fear  May be extreme anxiety/paranoia for hoarder  Social isolation


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Assessing Risk Factors  Health/safety  Environmental/structural  Social/emotional

Use your chat box: how would you assess risk factors in a family with hoarding? What types of questions would you want to answer in your assessment?


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Some Key Assessment Questions for Risk Factors 

Health/Safety   

Is the child/adult getting enough food and is it safe? Is the child’s/adult’s hygiene an issue? Have there been any injuries or illnesses resulting from the condition of the house?



Environmental/structural



Social/emotional



 

 

Are there any structural issues that need to be inspected or fixed? Is the child getting to school/participating in activities? How does child/adult interpret the condition of the house and the caregiver? What effect is it having on his/her development and well-bein Are there other mental health diagnoses in the child/adult’s family? Is the child/adult isolated as a result of the hoarding? 20

Connection to DSS Practice: Protective Factors Framework     

Nurturing and attachment Knowledge of parenting and child/youth development Parental resilience Social connections Concrete support Use your chat box: how would you assess protective factors in a family with hoarding? What types of questions would you want to answer in your assessment? April 23, 2013 Webinar UNC-CH School of Social Work

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4/18/2013

Some Key Assessment Questions for Protective Factors 

Nurturing and attachment  What is the quality of the relationship with the child? Does the caregiver consider the child’s needs and the effect of the hoarding?



Knowledge of parenting and child/youth development  Does the parent understand how the hoarding might effect the child’s normal development?

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Some Key Assessment Questions for Protective Factors, cont. 

Parental resilience • Is the caregiver willing to change and accept help? Have they made successful changes in the past?



Social connections concrete support • Does the caregiver have positive social supports and resources to help them make change?

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Concrete support What resources does the family have or can they access to make and sustain change?

•

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Other Key Assessment Questions to Understand the Hoarding 

What types of possessions are saved?

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What are the reasons for saving each type of possession?

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Where are items kept?

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Are family members involved?


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4/18/2013

Tips for Engagement 1.

Acknowledge your own feelings about clutter It’s not about how you would want to live, but about the minimum standard for a safe home

2.

Understand the intent for the hoarder Remember hoarding is an illness that needs professional intervention. The person is not hoarding because they are lazy or a bad parent. Try to understand their motivation to help them make change. 25

Tips for Engagement, cont.

3.

Focus on reducing risk, not “getting rid of things” or “clearing out clutter”

4.

Family members or others should not try to clean things up without the person’s knowledge 26

Finding Help 1.

Find an experienced therapist and educational info. for families  Hoarding Center, International OCD Foundation http://www.ocfoundation.org/hoarding/  Assoc. for Behavioral and Cognitive Therapies http://www.abct.org/Members/index.cfm  Anxiety Disorders Assoc. of America http://www.adaa.org/ April 23, 2013 Webinar UNC-CH School of Social Work

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4/18/2013

Finding Help, cont. 2.

On-line or local support groups http://www.ocfoundation.org/hoarding/

3.

Digging Out: Helping Your Loved One Manage Clutter, Hoarding, and Compulsive Acquiring. Michel A. Tompkins and Tamara L. Hartl. (2009) Oakland, CA: Harbinger Press.


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Finding Help, cont.: Plan of Action Model

4.

Biohazard clean-up professionals

5.       

Professional cleaners need to be certified, licensed, and bonded Needs to be person on-site who has a trusted relationship with the hoarder Family members should be involved in the cleanup Property owner pays for the clean-up Preparation for the initial cleanup takes time Cleanup is done in a short period of time Other agencies may be involved Fagala, 2012 April 23, 2013 Webinar UNC-CH School of Social Work

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Final Steps for DSS Staff 1. Please take a brief survey  We will provide link for those logged on 

Can also access thru ncswlearn.org

2. To receive training credit, you must do

“Complete Course” WITHIN ONE WEEK     

Log in to www.ncswlearn.org Select “PLP” Select “Webinars” Click “Enter” Click “Complete Course” button April 23, 2013 Webinar UNC-CH School of Social Work

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Follow-up Document from the Webinar Risk and Protective Factors Related to Hoarding Webinar delivered April 23, 2013 Follow‐up document date: May 1, 2013 Presented by Arlette Lambert Child Welfare Policy Consultant NC Division of Social Services

Joyce Massey‐Smith Adult Programs Representative NC Division of Aging and Adult Services

Jessica Williams After‐School Site Coordinator YMCA of the Triangle

Susan McGuire Director of Older Adult Ministries Edenton Street United Methodist Church (Raleigh, NC)

Produced by Family and Children’s Resource Program, part of the Jordan Institute for Families School of Social Work, University of North Carolina at Chapel Hill Sponsored by North Carolina Division of Social Services

Handouts. Be sure to consult the handouts for this webinar: https://www.ncswlearn.org/ncsts/webinar/handouts/27_Webinar_Handouts_4‐23‐13.pdf Recording. If you missed the webinar or want to view it again, you can access a recording of this event by going to: http://fcrp.unc.edu/videos.asp

Topics Covered in this Document 1.

General Observations from Participants ......................................................... 2

2.

Causes/Correlates of Hoarding ....................................................................... 2

3.

Assessing and Engaging Hoarders ................................................................... 3

4.

Practice‐Specific Questions ............................................................................. 4

5.

Treatment ....................................................................................................... 5

6.

Cleaning Up ..................................................................................................... 6

7.

Working with Other Professionals .................................................................. 7

8.

Resources for Learning More .......................................................................... 7

NC Division of Social Services: Follow‐up to April 23, 2013 Webinar

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Recommendations and Questions and Answers from the Webinar 1. General Observations from Participants Participants’ response to poll at start of the webinar:  88% have encountered hoarding  74% feel fairly comfortable assessing, 7% not at all comfortable  61% feel fairly comfortable intervening, 24% not at all comfortable intervening Connection to Foster Home Licensing I work with applicants who want to be foster parents and have seen a real increase in number of homes where hoarding is a problem. Many seem unaware or in denial that every room of their home is overflowing, leaving only pathways to get around... According to Tokin, Frost, and Steketee, “hoarding is a problem of emotional, mental, behavioral, and social well‐being. ... It is not just a house problem; it is also a person problem” (2007, pp. 29‐30).

2. Causes/Correlates of Hoarding Why is it that the worst hoarding I've seen is with older adults? It is possible you have encountered it more in older adults because older individuals have had a lifetime to accumulate possessions. Is it true that the generation that grew up in the Great Depression have more issues with hoarding, and that they are now hoarders because of their experience of deprivation and scarcity? Compulsive hoarding is a hidden danger in the community and can affect anyone, regardless of economic, mental, race, age or sex status. Is there a correlation between adult ADHD and hoarding? Some recent studies suggest a correlation between hoarding and ADHD (Sheppard et al., 2010). Sheppard, B, Chavira, D., Azzam, A., Gradoes, M., Umana, P., Garrido, H., and Mathews, C. (July 2010). ADHD prevalence and association with hoarding behaviors in childhood‐onset OCD. Depression and Anxiety. Volume 27, Issue 7, pages 667–674.

Is there a correlation between socioeconomic level and hoarding? Research has not shown a correlation between socioeconomic level and hoarding behavior (Mayo Clinic, 2011). Jessica Williams: however, we have found that when it starts to get out of control, hoarders usually end up losing a lot of their money because they spend it on the hoarding. Is there a genetic basis for hoarding behavior or is it a learned behavior? Some recent studies have suggested a genetic basis for hoarding behaviors (Saxena, 2007). According to staff at the Mayo Clinic (2011), “It’s not clear what causes hoarding. The condition is far more likely to affect those with a family history of hoarding, so genetics and upbringing are likely among the triggering factors.” Saxena S. (2007). Is compulsive hoarding a genetically and neurobiologically discrete syndrome? implications for diagnostic classification (editorial). Am J Psychiatry 164:380–3842. Mayo Clinic (2011). Hoarding: Causes. Mayo Clinic Health Information. http://www.mayoclinic.com/health/hoarding/DS00966/DSECTION=causes


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Are introverts more likely to hoard? There does not seem to be research data to suggest that introverts are more likely to hoard. However public humiliation, ridicule, and embarrassment drive hoarders deeper into isolation. Some clinicians stereotype the hoarders as withdrawn and difficult to get along with. The experience of Frost and Stekette is that “people who hoard vary widely in their interpersonal skills just like the rest of the population. The shame surrounding hoarding may also contribute to the development of social anxiety. Nearly a quarter of people with hoarding problems have social anxiety serve enough to warrant a mental health diagnosis of social phobia. This kind of anxiety—which can come across as shyness or even rudeness—can cripple the development of intimate relationships, as it leads sufferers to avoid parties, dining out, and dating” (Frost and Stekette 2010, pp.231‐232) Frost, R.O. and Steketee, G. (2010). Compulsive Hoarding and the Meaning of Things. Boston: Mariner Books.

3. Assessing and Engaging Hoarders Presenters acknowledged that the challenge in social work practice with clients who hoard is balancing assessment and engagement. Are the levels based on one room, or multiple rooms? If I walk into a level 5 room, even if the rest of the house is spotless, I would consider it a problem. The levels of hoarding are based on multiple areas in the residence. If only one room is involved in a level 5 there is the likelihood of pest infestation, health and safety risks, structural damage and fire. If the hoarding is occurring in one room usually there is another area such as a storage unit, basement, or garage that is also involved. Eventually the overflow will spill into other rooms in the home unless another family member can control the hoarder’s boundaries. The health and safety of the family should be the first consideration. Assessing Risk Questions suggested by participants for assessing risk:  On a scale of 1‐10, with 10 being totally unsafe, how safe do you feel in your home?  Is the older adult able to do their activities of daily living (ADLs)?  Has the child gotten "lost" in the home?  Do the items in your home hinder anything in your daily living?  Can you escape in case of a fire?  Where do the children sleep?  Do the children have access to food?  What kind of illnesses do household members typically acquire? How often do they get sick?  Any recent injuries due to condition of home? Assessing Protective Factors Questions suggested by participants for assessing protective factors:  Who are your social supports?  Do family member help with food or hygiene needs (let you come shower, etc.)?  Do you eat together as a family?  Who's helped in the past?  Who do you come in contact with on a daily basis  How do you reach someone in case of emergency, access phone?  Do you seek medical attention when needed?  Would you be willing to move temporarily?  What do you do to control pest populations in the home?  Do you have family or friends who come here to help you NC Division of Social Services: Follow‐up to April 23, 2013 Webinar

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Questions to Help Understand Root of Hoarding Behaviors  Has there been a recent traumatic event in your life?  Have you experienced a loss?  Did the family ever get together for Sunday dinner on a regular basis? If so, what happened to stop the gathering?  Do you have a better relationship with these "things" than your family?  Do you have a hobby or like to collect certain items?  Would giving away items bother you in any way?  When did you start collecting?  How long have you lived like this? Change‐Focused Questions  I see that you love cherishing your memories. Are you interested in learning a fun and safe way to do it?  Do you want to change?  How do the children or other members of the family feel about the hoarding?  Do you think your children feel safe in this home?  How do you feel about living in this home?  Are you ashamed when people come into your home and see this?  Tip: Include family members, their church family, etc. Ask and seek out these supports.

4. Practice-Specific Questions I work with an adult with long-term level 5 hoarding. This person may have mental illness & physical illness but has been ruled to be competent. This person is not willing to clean up or change. Any advice? Since this person is a level 5 hoarder I might question their capacity not their competency. A more thorough evaluation of their mental health status may be needed. Can this adult explain to the social worker the dangers in living in a level 5 home and how her safety might be impaired? If not, then perhaps the adult doesn’t have capacity though he or she may be competent. Another thought is for the social worker to assess how unsafe the environment is to the adult and perhaps involve local inspectors, etc If the social worker can see exposed wires, lots of rats, structural issues, etc., then those things would make it a safety hazard and authorities might get involved. Another question is if this is a rental property or owned by the adult. If it is a rental property then there are safety requirements that can be enforced. In CPS, during treatment/in-home services, there is a plan of action. Would it be appropriate to incorporate hoarding issues in their treatment plan? Also, if so with CFTs should the amount of people be limited to fit the plan of action? It would work nicely to address hoarding issues either in the safety plan in the CPS assessment phase or in our out‐of‐home services agreement. It would be a nice addition (you could attach it). Or use guidelines from that and incorporate into existing family services case plan. Effect on CFTs: each CFT must be custom tailored to family, rather than using a cookie‐cutter approach. A CFT could be a good opportunity for family to invite specific people to help develop or discuss a plan of action related to hoarding. This could be an agenda item for a CFT. Should social workers enter a level 3, 4, 5 home of a hoarder to assess it? What safety precautions should we take? On initial visits, workers will need to assess the safety issues for themselves and the client. Workers should have access to a supervisor and access to other professionals (public health, mental health, law enforcement, fire and rescue, animal control, housing authorities, public utilities etc.) to assist. Building NC Division of Social Services: Follow‐up to April 23, 2013 Webinar

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relationships with other agencies ahead of time is the key to getting the assistance you need when you need it. Once the type and level of hoarding is known, workers should use safety items as listed below and always consult with others if there are structural safety issues such as sagging ceilings or floors, broken or missing floor boards or exposed wiring. Animals and animal waste, standing water, vermin, and other safety issues should also be considered. In APS and CPS, an important part of the evaluation is assessing the environment of the adult or child. While there may be times when it is appropriate to interview the family outside of the home, the environmental assessment needs to take place. It is at this point that you may need to have the assistance of others to assist in this piece of the evaluation. Workers can keep a “safety kit” in the agency car or in their personal automobile. Items to include are: disposable gloves, masks, overshoes or boots, a change of clothes, newspaper (to sit on if needed) hand sanitizer, basic cleaning supplies, and a flashlight. We emphasize in the intake process that the intake worker should ask about any possible dangers for the worker(s) that will be entering the home. Assistance from other professionals should be obtained if there are reported safety issues for the worker that would require their assistance. Workers in the field should always have access to a supervisor to help them problem solve on‐site. We remind workers to be sensitive to the feelings of the client/family when entering the home. You should assess the situation to see what items might be needed before putting on boots and masks, etc. Overdoing it in this area can set up barriers in the helping process. On the other hand, it is also important to use your judgment in deciding when the safety risk is high enough to leave the home immediately or not enter until you have assistance.

5. Treatment What can we do to get treatment for clients with hoarding behaviors? Find an experienced therapist with expertise in hoarding. Cognitive Behavioral Therapy (CBT) has been found to be an effective treatment for hoarding, so look for therapists certified or trained in CBT. Here are 3 resources with online search functions, and all include therapists in NC.  Hoarding Center, International OCD Foundation (http://www.ocfoundation.org/hoarding/)  Assoc. for Behavioral and Cognitive Therapies (http://www.abct.org/Members/index.cfm)  Anxiety Disorders Assoc. of America (http://www.adaa.org/) Other useful resources include the Obsessive Compulsive Foundation, the Association for Behavioral and Cognitive Therapies, and the Anxiety Disorders Association of America. They have very helpful info. for you and for family members to better understand and respond to hoarding. Has anyone come up with a medicine for hoarders? Or do they prescribe psychotropic medicines used to treat other diagnoses/behaviors? No studies have specifically researched the effect of medicine on hoarding (Saxena, 2010). Many researchers and clinicians believe that hoarding is a type of Obsessive‐Compulsive Disorder (OCD). Research has shown that a type of anti‐depressants called SSRIs can be helpful for some people with OCD. Cognitive‐Behavioral Therapy (CBT) has also been found to be helpful for some people with OCD. Saxena, S. (2010). Medicines for the Treatment of Hoarding. International OCD Foundation. http://www.ocfoundation.org/hoarding/medication.aspx

Can treatment be effective without addressing the hoarding’s root causes? To make meaningful change, we have to address the underlying cause of the hoarding behavior. Comment from participant: I think individual counseling would definitely have to be a part of the NC Division of Social Services: Follow‐up to April 23, 2013 Webinar

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treatment plan to understand if possible where this issue came from and what if anything in their behaviors could be worked with to get the situation under better control. What is Prader-Willi syndrome and how does it relate to hoarding? Prader‐Willi syndrome is a rare genetic disorder. People with this disorder have "low muscle tone, short stature, incomplete sexual development, cognitive disabilities, problem behaviors, and a chronic feeling of hunger that can lead to excessive eating and life‐threatening obesity” (http://www.pwsausa.org/faq.htm). In addition, there is evidence that people with Prader‐Willi syndrome are more likely to suffer from obsessive‐compulsive disorder (Clarke, et al., 2002), and OCD has been linked to hoarding behaviors. Clarke, D. J., Boer, H., Whittington, J., Holland, A., butler, J. & Webb, T. (2002). Prader—Willi syndrome, compulsive and ritualistic behaviours: the first population‐based survey The British Journal of Psychiatry (2002) 180: 358‐362 doi: 10.1192/bjp.180.4.358

6. Cleaning Up Is it true the landlord is responsible for cleanup if the hoarder lives in a rental property? Yes. They would be the ones that would be fined by the county because they own the home. Participants expressed doubts as to whether they knew any landlords that would pay. Can the landlord sue the tenant for having to pay for the cleanup? According to Billie Rouse with the Consumer Protection Section of the North Carolina Attorney General’s office, the landlord could sue for cleanup costs. A social worker could advocate with the court on behalf of the family for a payment plan to re‐pay the costs. If the family was moving, the costs would first come from any security deposit. The family would likely be sued in small claims court and would not need an attorney. However, if you have a family facing legal action, there is an on‐line directory for legal assistance for low income North Carolinians: http://www.lawhelpnc.org/. Don’t people go back to hoarding again after their place is cleaned? Yes, if they don't get help/treatment. Am I correct in thinking that unless the hoarding poses a direct risk to a person’s safety, it would be inadvisable for family members or helping professionals to try to clean up the mess without the hoarder’s consent? Going behind the person's back is never a good idea. What is involved in cleanup of a hoarder’s dwelling? For a level 3‐5 you need a biohazard service for initial cleaning and then a regular cleaning service afterwards. The biohazard service should be insured/bonded. Do clean-up agencies usually accept Medicaid as payment? Unfortunately, no. Cleaning services are not set up to take Medicaid, nor is that service covered by Medicaid. Are there any resources for low-income clients that need clean-up services? Some local fire departments may have personnel who are willing to help with a clean‐up. You can also look for a clean‐up company (http://hoardingcleanup.com/) that may be willing to negotiate or donate services based on the situation. Local church groups or other community service organizations may be willing to donate or raise funds for a DSS family in need of this service.


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7. Working with Other Professionals Should Emergency Management (EMS) be familiar with this topic? What about the building inspector? Yes—to an extent. Hospital personnel are often the ones after the person’s trip to the Emergency Department who notify APS or CPS of a dangerous hoarding situation. Police also sometimes notify CPS or APS of hoarding situations.

8. Resources for Learning More Someone mentioned a book called “Digging Out”—can you tell us more? Digging Out: Helping Your Loved One Manage Clutter, Hoarding, and Compulsive Acquiring [Paperback] by Michael A. Tompkins and Tamara L. Hartl (New Harbinger Publications, November 2009).


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