HOARDING TOOLBOXMARCH 2016Developed through the collaboration of Montfort Renaissanceand Options Bytown as part of a LHIN funded pilot project

TABLE OF CONTENTSList of appendices . 21.Definition of Hoarding . 31.1 Hoarding in the DSM-5 . 31.2 In other words . 32.Assessment . 42.1 Done by the worker . 42.1.1 Clutter Image Rating Scale (CIS) . 42.1.2 Home Environment Index . 42.2 Done by the client . 42.2.1 The Activities of Daily Living- Hoarding (ADL-H) . 42.2.2 Savings inventory- Revised . 52.2.3 Savings Cognition Inventory . 52.2.4 Hoarding Rating Scale . 52.2.5 Safety Questions . 53.Treatment planning . 53.1 Goal Setting . 53.2 Visualization and Practice . 64.Intervention . 74.1 Reducing acquiring . 74.2 Discarding . 84.2.1 Personal Protective Gear . 84.2.2 Supplies (Dollar Store is a cheap place to buy some of these): . 94.2.3 Getting started .104.2.4 Sorting methods .114.3 Organizing .125.Alternative methods.135.1 The harm reduction approach: .135.2 Clean-outs: .136.Recommended trainings .147.References .15Page 1 of 15

LIST OF APPENDICESAppendix 1a - Clutter Image ScaleAppendix 1b - Clutter Image Scale DescriptionsAppendix 2 - Home Environment IndexAppendix 3a - HOMES Hoarding Risk AssessmentAppendix 3b - HOMES Hoarding Risk Assessment ScaleAppendix 4 - Activities of Daily Living - HoardingAppendix 5 - Saving Inventory - RevisedAppendix 6 - Saving Cognitions InventoryAppendix 7 - Hoarding Rating ScaleAppendix 8 - Safety QuestionsAppendix 9 - General Conceptual ModelAppendix 10 - How long to save paperPage 2 of 15

1. DEFINITION OF HOARDING1.1 Hoarding in the DSM-5A. Persistent difficulty discarding or parting with possessions, regardless of their actual value.B. This difficulty is due to the perceived need to save the items and to distress associated withdiscarding them.C. The difficulty discarding possessions results in the accumulation of possessions that congestand clutter active living areas and substantially compromise their intended use. If living areasare uncluttered, it is only because of the interventions of third parties (e.g. family members,cleaners, authorities).D. The hoarding causes clinically significant distress or impairment in social, occupational, orother important areas of functioning (including maintaining a safe environment for self andothers).E. The hoarding is not attributable to another medical condition (e.g. brain injury, cerebrovasculardisease, Prader-Willi syndrome).F. The hoarding is not better explained by the symptoms of another mental disorder (e.g.obsessions in obsessive compulsive disorder, decreased energy in major depressivedisorder, delusions in schizophrenia or another psychotic disorder, restricted interests inautism spectrum disorder).Specify if: With excessive acquisition: If difficulty discarding possessions is accompanied byexcessive acquisition, collecting or buying or stealing, of items that are not needed or for whichthere is no available space.Specify if: with good or fair insight: The individual recognizes that hoarding – related beliefs andbehaviors (pertaining to difficulty discarding items, clutter, or excessive acquisition) areproblematic.Specify if: with poor insight: The individual is mostly convinced that hoarding related beliefs andbehaviors (pertaining to difficulty discarding items, clutter, or excessive acquisition) are notproblematic despite evidence to the contrary.Specify if: With absent insight/delusional beliefs: The individual is completely convinced thathoarding-related beliefs and behaviors (pertaining to difficulty discarding items, clutter, orexcessive acquisition) are not problematic despite evidence to the contrary.1.2 In other words Hoarding can be defined an excessive accumulation of possessions and a failure to discardproportionately, where activities of daily living are impaired by spaces which cannot be used fortheir intended purposes and cause distress to the person or those close to them. Although thedetermination of whether the issue is hoarding-related or is the symptom of another mental healthissue or cognitive impairment is a complex evaluation process, this process is outside the scopeof this tool box. However, the proposed assessment tools may help in elaborating a support planwhich takes into account both the clutter issues and the mental health component.Page 3 of 15

2. ASSESSMENT2.1 Done by the workerAs a worker, there are a series of tools you can use to assess hoarding. Currently the mostcommonly used tools are those developed by Dr. Randy Frost and Gail Steketee.2.1.1 Clutter Image Rating Scale (CIS)The Clutter Image Scale (appendix 1a) is a set of images of 3 different living spaces (kitchen,living room, and bathroom) showing the 9 different levels of hoarding. It differentiates betweenmild, moderate, and extreme hoarding and is the most commonly used tool to assess andevaluate outcomes of an intervention. Most agencies who work with people with hoardingbehaviours are familiar with this tool. This tool can be completed by either the client in question,the assessor or both. Note that it is helpful to compare answers of the assessor and those of theperson referred. It is also useful when there is limited time or ability to access a home. Areas thatscore above a 3 are a cause for concern. To support this tool, a series of definitions andguidelines have also been elaborated in order to help a person determine where they are on the1-9 scale (appendix 1b).2.1.2 Home Environment IndexThe Home Environment Index (appendix 2) is completed by the assessor and is a scan of theclient’s environment to identify health and safety concerns. A score of 2 or higher requiresattention. The client may also fill this out.In addition to these tools, Dr. Christine Bratiotis developed the HOMES (appendix 3a and 3b)Multi-disciplinary Hoarding Risk Assessment. This tool is useful when there is little time for anassessment and there are other risk factors or vulnerable persons involved, such as pets or otheradults in the home and their safety is affected (Health, Obstacles, Mental Health, Endangermentand Structure).2.2 Done by the clientIn addition to staff-led evaluations, you may want to have the client answer a few questionnairesin order to assess the situation and get a better understanding of how their thoughts and behaviorsaffect their life. These tools will help you understand the level of insight a client might have, theemotional distress they may experience as well as the difficulties they may encounter (acquiringand discarding).As with the staff-led assessments, the most commonly used tools are those developed by Dr.Randy Frost and Gail Steketee and they are as follows:2.2.1 The Activities of Daily Living- Hoarding (ADL-H)The Activities of Daily Living- Hoarding (appendix 4) is an assessment completed either by or withthe client, which allows the client to reflect on the impact the level of clutter in the home has ontheir ability to complete their everyday tasks of life. Responses also reveal the level of insight aclient has of their hoarding behaviours and the impact it has. NOTE: a person may markPage 4 of 15

themselves low on the ADL-H scale but have a CIS (Clutter Image Scale) rating in the high range.This may be an indicator of poor insight, or indicate that the client has adjusted to theirenvironment. An example that a person has adjusted to their environment could be that they saythey are able to sleep in their bed easily, but you find out they need to remove at least a dozenbags in order to do so.2.2.2 Savings inventory- RevisedSavings inventory- Revised (appendix 5) is an assessment completed either by or with the clientand narrows down the specific hoarding behaviour (acquiring, difficulty discarding, lack oforganizational skills) that is associated with the level of clutter in a person’s home. This tool alsoreveals the level of insight a person has.2.2.3 Savings Cognition InventorySavings Cognition Inventory (appendix 6) is completed either by or with the client and exploreswhy a person has difficulty discarding. In many situations it is due to sentimental attachment, butthere are also issues with memory, a sense of responsibility for objects, and issues around controlover belongings. It is also an indicator of the level of insight.TIP: Some clients reported that they found this tool abstract and had difficultyanswering. In order to address this, we found that having the client pick out a fewpossessions and having them laid out in front of them made things more concrete. Youmay also need to reformulate the questions and give examples in order to guide theclient.2.2.4 Hoarding Rating ScaleThe Hoarding Rating Scale (appendix 7) is a quick screening tool that helps a client determine ifthey feel they have an issue with clutter. This tool is useful if a person is unsure whether or not toask for help. A score above 14 indicates a hoarding problem may exist.2.2.5 Safety QuestionsSafety Questions (appendix 8) are completed by or with the client to determine how the amountof items is impacting their safety, and creates an opportunity to discuss harm reductionapproaches. A score of 2 on any question requires attention.3. TREATMENT PLANNINGIn order to formulate a proper intervention plan that fits the needs and abilities of the client, it isimportant to consider other factors such as personal and family vulnerabilities, informationprocessing problems, meaning of possessions, emotional reactions, etc.3.1 Goal SettingThis information can be gathered during an interview with the client. We used the Initial Interview,as it provides the necessary background information. The information gathered with the interviewand the evaluation tools can be included in a client’s General Conceptual Model (appendix 9).Page 5 of 15

This model is interesting since it helps understand how the hoarding problem has evolved throughtime and why it is ongoing. It considers such factors as personal vulnerabilities, informationprocessing problems, meaning of possessions, emotional reactions and learning processes.TIP: Refer to the Treatment for Hoarding Disorder Workbook (Steketee & Frost, 2014)as there is a selection of responses that may suit the person’s need – it explains theprocess very well when clarification is needed.Goal setting is an important part of treatment planning. As a support person you need to take intoconsideration several factors and prioritize accordingly. These factors can be categorized assafety related (risk of fire, fall risk, etc.), health related (infestations) and housing related (at riskof being evicted). This is where assessments regarding safety and home environment becomerelevant (see the “Assessment” section on page 3 for relevant appendices to assess risk andpriorities). When health and safety issues are addressed, you will want to work with the goals thatthe clients have set for themselves. Remember that the clients’ perception of their environmentmay greatly differ from yours at first, and it may be challenging to set a pace and standards whichwill respect the client’s rhythm.When planning an intervention, you want to determine what the client’s personal goals are. Youwill also want to set treatment rules in order to ensure that the treatment progresses in a way thatis manageable for the client, and to help them realize they are in control of the situation (forexample : client makes all the decisions about possessions, do not touch belongings withoutpermission, client discusses feelings and thoughts with counselor, etc.).TIP: When working with couples, emphasise the following rule: the person who ownsthe belonging makes the decision. That person can seek help and discussion, thedecision remains theirs to make (e.g. whether the belonging stays or goes).3.2 Visualization and PracticeVisualization exercises can be very motivating. They are a great way to get a client imaginingwhat their house would look like uncluttered, and can be used for goal setting. You want to askclients how they feel in their current cluttered environment and then have them imagine how theywould feel if their environment was uncluttered. The clients then rate their discomfort level on ascale from 1-100 (1 no discomfort and 100 the most discomfort they’ve ever felt). Clients thendescribe what feelings and thoughts they have during the exercise.This exercise can be more difficult for people with cognitive impairments, but there are ways tomake them more concrete. For example, people may have difficulty with the clutter and uncluttervisualization exercises, but may remember what their unit looked like when they didn’t feelstressed by their environment. Likewise, they may be able to identify a friend’s place or amagazine picture that shows how they want their apartment to look like.Page 6 of 15

The same visualization exercise can be done in regards to acquiring. In this type of exercise, theclient visualises a situation where they would feel the urge to acquire something, but would notpick the item up. For this acquiring visualization exercise, the client could use the most recentpurchase of a preferred item. The client then rates the urge to acquire the item using the samescale (1-100) described above.As with visualization exercises, practice exercises are a good way to start concrete interventionswith the client: we compare this to “building a muscle”. These exercises involve discarding or notacquiring an item that is not the client’s favorite, but still causes some level of discomfort ifdiscarded or not acquired. The initial discomfort level is then rated using the 1-100 scale. Theclients track their feelings of discomfort for the following hours/days and compare the discomfortratings for these items to their initial score. You then make a conclusion about the activity withthe client.4. INTERVENTION4.1 Reducing acquiringIt is usually best to start with the strategies to reduce acquiring. Clients find reducing the clutterwithout addressing the acquiring leads to a cycle where once items are removed, more items areacquired. This leads to frustration, as the clutter is now never ending. Some clients may feelfrustrated that the uncluttering process is delayed, but recognize the issue in play. Some clientsmay have to experience this cycle before accepting the need to address the acquiring as a firststep. It is useful to do an Advantages/Disadvantages (Pros/Cons) exercise to help clients cometo their decision about this process.Once a client is ready to start working on reducing acquiring, here are a few things you can dowith them: Assist in the development of a personal set of questions for acquiring. For example :1. Am I only buying this because I feel bad right now?2. Could I manage without it?3. Do I already own something similar? Assist in the development of personal rules for acquiring. For example:1. I plan to use the item within the next month.2. I have sufficient money (not credit) to pay for the item.3. I have an uncluttered place to put the item.TIP: encourage the client to keep this list with them at all times. It can remain in theirpocket, or attached to the wallet/debit card/credit card. Laminate the card if possible.Page 7 of 15

Assist in the development of a personal exposure hierarchy plan. To assist clients in facingfears and discomforts you’ll want to expose them to stressful situations. Starting with a lessstressful situation, and, as the client’s level of comfort increases in dealing with this specificsituation, gradually address situations that generate a higher level of stress. The clients willmove forward and make progress in treatment. For example: Drive past a store in which I’ve bought things;Stand near a store in which I’ve bought things;Walk into a store and not buy anything;Try on a piece of clothing that fits and not buy it, etc.Assist in the development of a personal list of activities that provide pleasure and which arean alternative to time spent acquiring. For example: read a book, take a walk, chat with friends,and attend a fair. These activities should reflect you’re client’s interests.The goal of these activities is to help a person slow down the acquiring impulses and make themmore mindful of their thoughts, emotions and actions.TIPS: If the 1-100 scale is overwhelming, try a 1-10 scale or use descriptions instead ofnumbers. A person may state they acquired only a DVD, but you can do an exercise where theycolect all the items they acquired in a specific time frame – you can coach them onthis especially if you know what the preferred items are. For example, if you know aclient is partial to comics and DVDs, ask them to gather all the comics and DVDsacquired this past month. This creates a concrete, visual representation for them,rather than relying on memory. This is especially important for client with cognitiveimpairments.4.2 DiscardingAssessing the risks is the first step (appendix 3a and 3b) in hoarding interventions. You mustassess the risks to the client, to other residents or neighbors and to responders (such as yourself).Based on your discoveries, you may need to bring in other professionals to help deal with thesituation.4.2.1 Personal Protective GearAs you are supporting the client, you need to ensure your own safety and protection from pests,sharps and other potentially dangerous items or situations. When assisting a client with physicalwork, the following should be considered: Wear a separate set of clothes (including shoes). Once the session is over, change into aclean set of clothes and seal the used clothes in a clear plastic bag – this will allow you toPage 8 of 15

check for pests. Follow pest control guidelines for laundry (hot wash, hot dryer) on thedirty clothes. If there is a pest infestation, wearing a disposable Tyvek suit over your clothes is a must.The white background of the suit makes it possible to see any pests that may havetransferred onto you, and they provide a layer of protection over your personal clothes. Wear foot covers over your shoes, and preferably double up as they do wear out over thecourse of a session and holes tend to develop. Gloves are required; as is frequent hand washing and the use of hand sanitizers. For masks, we suggest the use of the N95 mask – a must if dealing with situations wherecontaminants can be inhaled (expired food that is powdery and airborne, mold, rodentfeces, etc.).4.2.2 Supplies (Dollar Store is a cheap place to buy some of these): Clear plastic bags – provide an extra layer of protection for kept items which are storedinside bins/boxes. Moreover, you can store items in the bags and keep for a few weeks toverify if bedbugs/cockroaches are present. Painter’s tape – to mark clear pathways, height clearances, etc. We chose painters tapeso it does not cause damage to surfaces. Packaging tape – to tape up boxes. It can be useful to place a strip with the sticky side outaround the bottom of a box/bin to see if there is bedbug activity near where items arestored. Also, packaging tape can be used to seal any gaps in bins/boxes. You can alsouse it to seal the cuffs of pants/shirts to prevent bedbugs or other pests from getting insideyour clothes. Sharpie & labels – to label bins/boxes. Trash Can – wheeled ones work best as the wheels make it easier to transport largeamount of garbage. Construction grade garbage bags – really sturdy and less likely to break when movingthem; holds heavy items without breaking/ripping. Measuring tape – portable, concrete way to measure clearance required.TIP: Have shopping bags/small trash bags on hand. Some clients find the thought offilling a large bag too overwhelming, but find it ok to use smaller bags. It makes it easierto do a larger task and provides a natural break in the process in order to check in withthe client as to their emotional state.Page 9 of 15

Be prepared to uncover hazards as the decluttering process begins (e.g. unstable shelving,indications that rodents are present, extensive use or electrical cords/outlets). Check your clothingand belongings each time you leave an apartment for traveling; you can place your belongings ina bag to reduce the risk of transmission/contamination.4.2.3 Getting startedWhen you start discarding, there are two ways to start. Either you select a target area (clean outbed) or you select a type of item (sort through all my books). Most clients feel more accomplishedwhen they select a target area because it is much easier to visually see the progress that hasbeen made as opposed to picking-up books here and there.TIP: A document has been created (Appendix 10) that can help you and your clientsaddress paper hoarding (what to keep and for how long). When possible, you may wantto have documents stored electronically to reduce clutter.Exercises you can do to guide a sorting and discarding session1: Practice discarding exercise: Clients seem to really like this exercise as a starting point,as it helps build up the tolerance level for discarding. Clients select an object, whichdiscarding may cause some (but not extreme) discomfort. The practitioner takes the itemand stores it in the office (in a sealed bag inside a clear plastic bin with a tight lid!). Clientsthen rate their level of discomfort. After a good length of time has passed (more than aweek), if the client does not bring it up, then the practitioner can mention it. A discussionof the exercise can then be had with the client (level of discomfort, if they forgot about theitem, etc.). Most likely, if the client has not asked for the item within a week or two, theylikely have forgotten about it and are willing to let it go. The clients can learn a lot aboutthemselves by doing this exercise, and that letting go of items usually is not as traumaticas they initially expected. Scaling exercise: This exercise was developed by Elaine Birchall of Birchall Consulting(to be released in “Clearing the Path: Helping You Take Back Your Life When Your ThingsAre Taking Over!” and taught in clinical supervision sessions for the purposes of this PilotProject). For this exercise, use a scale of 1-10, 1 being an item that must absolutely bekept and 10 being an item that can be discarded. Have the client pick out “easy wins” or7-8-9-10’s. These are items they can let go with ease. First, you can have the client tellyou why they are easy wins (for example, they are contaminated, they are broken, or theysimply do not like them). Next, have them pick out 1-2-3‘s or the “no doubt about it, mustkeep items” and have them tell you why they are in this category. Lastly, proceed with thein-betweens, the 4-5-6’s. Have the client remember what makes an item a 1-2-3 and whatmakes an item a 7-8-9-10. Have the client select which of these items are closer to a 7-89-10 and ask them if they feel OK with discarding them. Next, work with the 4-5-6’s thatare closer to 3’s and discuss what the client feels he can do with these items (keep aslong as there is space for them, re-gift to someone who will appreciate, etc.).These exercises are described in detail in “Treatment for Hoarding Disorder: Treatment Guide. Steketee, G., Frost,R. (2014). New York: Oxford University Press.”1Page 10 of 15

Need vs want exercise: This exercise gives the client a chance to comprehend thedifference between an item they want and an item they need. Sometimes, this distinctioncan be hard for a client to understand, as they feel they need every item. Once thedistinction is clear, they can make a decision accordingly. This can also be used to helpreduce acquiring. Brief thought records: When the client starts feeling anxious or happy or angry, thatwould be a good time for the client to stop what they are doing and ask themselves whatthey are thinking. This provides a way to see if there are other thoughts or beliefs, besidesthe one they are currently having, that contribute to clutter. It helps clarify the triggersituation, and the thought and emotions that lead to a decision. Thought record form: The brief thought record form is basically four columns. The firstcolumn is labeled “Trigger Situation”; the second one is labeled “The Thought or Belief”,the third one is labeled “Emotions” and the last one is labeled as “Actions and Behaviors”.This form is a way for the client to record information that helps shed light on what exactlyis triggered by hoarding situations. It helps generate alternative possibilities that makesense to the client. It can also help change their current belief/thought patterns. Behaviour action plans – activity planning: CBT techniques are especially effective ifa client is identifying feeling depressed. The focus is a calendar of activities that arepleasurable, that can incorporate the activities listed in the My Pleasurable Alternativesexercise listed in the “Reducing Acquiring section”. Behaviour experiment form: This form describes the experiment and predict theoutcome. The client is asked to rate how strongly they believe their prediction and theirinitial discomfort on a scale of 0 to 100. They do the action, and record what happened,their thoughts, feelings, level of discomfort, and their observations about the prediction.They develop their set of conclusions (did their prediction come true, was the actualoutcome worse than prediction, or was the fear worse than the experience). Other exercises:o Setting personal guidelines as to when to keep an item/ questions about possessions.o Listing advantages/disadvantages of keeping or not keeping an item.o Brainstorming/problem solving around barriers & problematic thinking. Downward Arrow questioning: Clarifies thoughts and beliefs and puts thinking/emotionsin perspective. Socratic questioning: Critical thinking; questions to clarify the issue; probingassumptions, viewpoints and perspectives; reasons and evidence, implications andconsequences.4.2.4 Sorting methodsThe 3 boxes method: It is important to keep the sorting categories to a minimum to avoidoverwhelming your client. The three categories that show the best results are “Keep, Donate/SellPage 11 of 15

and Discard”. Having items put in pre-identified boxes or bins while sorting is a great way for theclient to see what has been sorted and what has not.Another method that has proven to be successful is the Yes (Keep), No (Discard) and maybepiles. Clients sort items in the appropriate piles. If a decision about an item cannot be made inless than a minute, it goes in the maybe pile. Once the sorting session is over, ask the client toreturn to the maybe pile and over again, consider these items. You may want to ask the client torefer to their personal guidelines or consider the advantages and disadvantages of keeping ordiscarding the items. This method is not recommended in the beginning of treatment, becausemost of the items will end up in the “maybe” and the “no” pile. This method should be used whenthe client is more confident with their decision-making skills.4.3 OrganizingClients may nee

2.1.1 Clutter Image Rating Scale (CIS) The Clutter Image Scale (appendix 1a) is a set of images of 3 different living spaces (kitchen, living room, and bathroom) showing the 9 different levels of hoarding. It differentiates between mild, moderate, and extreme hoarding