(1)
San Francisco Bay Area Center for Cognitive Therapy and University of California, Oakland, CA, USA
In this chapter, I describe the assessment of harm potential, an essential step in the process of developing a harm reduction (HR) plan for those who suffer with severe hoarding. The chapter begins with the definition of harm potential as it applies to severe hoarding and then describes the specific objectives of a harm potential assessment and the role of clinicians and other professionals in conducting this assessment. The bulk of the chapter then focuses on the factors that influence harm potential (functional capacity and environmental risk) and methods to assess these factors. The chapter concludes with guidelines for conducting an in-home harm potential assessment.
6.1 Definition of Harm Potential
Harm potential is the interplay between a client’s capacity and the risks associated with the environment in which he lives. Capacity includes both decisional and functional capacity. Decisional capacity or cognitive capacity reflects the cognitive ability of a client to make choices that reflect an understanding and appreciation of the nature and consequences of his actions (Checkland & Silberfeld, 1993; Silberfeld & O’Rourke, 1994). Clients with adequate decisional capacity are able to receive and understand information and to formulate a decision based on that understanding. The concept of informed consent rests on adequate decisional capacity.
Typically, the solutions for the client with poor decisional capacity who also suffers with severe hoarding are more straightforward than for the client with adequate decisional capacity who suffer with severe hoarding. By definition, the client with poor decisional capacity is unable to make the most fundamental decisions regarding his safety and well-being. Mental health professionals, such as, social workers, psychologists, counselors, or psychiatrists are best qualified to evaluate the decisional capacity of a client. When the decisional capacity of the client is in question, I recommend the clinician immediately refer the client for an evaluation of decisional capacity by a qualified mental health professional. Typically, under most circumstances, harm reduction is not a viable option for clients with poor decisional capacity because it is unlikely that the client can live independently in his residence.
Functional capacity includes decisional capacity but also includes the physical, psychological, and social capacity of the client as evaluated within the environment in which he lives (Soniat & Melady Micklos, 2010). For example, a client may have adequate decisional capacity but unable, for a variety of reasons, to live independently and safely in his home. Therefore, functional capacity reflects a broader concept and some clients may have poor functional capacity but intact decisional capacity. This is often the case for clients with a severe hoarding problem.
The physical, psychological, and social factors that influence functional capacity interact with the environment and thereby influence the client’s harm potential. For example, an older adult who lives in a highly cluttered and dilapidated environment and who suffers with arthritis and poor vision will likely have poorer physical capacity because he is more at risk of slipping and falling due to his poor ambulation and vision. Similarly, the social capacity of an older adult that is already poor because she has few friends or family members who live nearby may decrease further as she withdraws from social supports because she is ashamed of the state of her home or fears that visitors may report the hoarding situation to authorities.
In addition to functional factors interacting with the environment, these same functional factors interact with each other to influence the client’s harm potential. For example, a client with a severe hoarding problem, who also suffers with social phobia (psychological factor), may be particularly isolated (social factor) because she fears others will discover the severe hoarding problem but also because she fears social interactions, in general. In this case, the psychological and social factors interact to further isolate the client and thereby increase her harm potential. Similarly, an older adult who is frail (physical factor) and depressed (psychological factor) and who does not exercise because she is weak and with little motivation to do anything because she is depressed may become more physically frail through deconditioning and thereby increase her harm potential. Therefore, I recommend the clinician strive for a comprehensive assessment of the client’s functional capacity relative to the environment in which he lives.
The view of harm potential described here is consistent with a capacity-risk model, which rests on a functional evaluation of what the client is actually doing in particular situations in light of the unique demands in his environment (McCue, 1997). The capacity-risk model guides the clinician through a difficult decision-making process. At one end of the capacity-risk continuum, the clinician strives to protect the client from physical, emotional, or financial harm. At the other end of the capacity-risk continuum, the clinician strives to protect the client’s right to self-determination. Self-determination respects the right of an individual to refuse services, to refuse help, and to live as he chooses—versus low capacity and high risk in which others must step in to protect the individual, in the least restrictive way, even when he refuses assistance. Individuals have the right to refuse services and to live as they chose. When working with people who hoard, we do not want to confuse eccentricity with capacity (Adams, 1996). Many adults with eccentric lifestyles have full functional capacity. They are capable to make the decision to live as they choose even if unsafe, unless they put others at risk, which is sometimes the case in severe hoarding situations.
The capacity-risk model is a useful heuristic to understand harm potential and to organize the process of assessing harm potential for those with a severe hoarding problem (Soniat & Melady Micklos, 2010). Furthermore, harm potential, as a capacity-risk model, recognizes that a client’s ability to function in his environment is not a dichotomous variable but varies along a continuum (see Fig. 6.1). As a client’s functional capacity decreases, his harm potential increases even as the environmental risk remains the same. Similarly, the harm potential of a client with adequate functional capacity can increase as the environment in which he lives becomes more cluttered, deteriorated, and unsafe. Furthermore, neither functional capacity nor environmental risk is static. Functional capacity degrades as we age such that even in a situation in which the environmental risks are small and manageable, the client’s harm potential may increase over time as his functional capacity degrades. Adding to this, however, is the interaction between functional capacity and environmental risk. As the functional capacity of a client degrades so does his ability to maintain his environment and manage the inherent risks. These interactions make for a complex and dynamic process that demands much from clinicians involved in severe hoarding situations.
Fig. 6.1
Functional Capacity versus Environmental Risk
By definition, the harm potential is high for client’s with a severe hoarding problem. Yet, even clients who face considerable harm because of the severe hoarding situation may differ in terms of their capacity-risk. Clients with a severe hoarding problem face serious and sometimes life-threatening risks due to years of hoarding behavior. Generally, the risks that concern professionals the most are the health and safety risks associated with living in a severely hoarded environment. However, clients with a severe hoarding problem face a host of other risks as well, such as bankruptcy or even homelessness through eviction. I refer to these multiple and inter-related risks as the client’s harm potential and propose that harm potential is an interaction between person and environment and that the level of clutter in the living situation is not the sole criterion that influences harm potential. For example, a 67-year-old man who is healthy, without medical problems or physical limitations and lives in a highly cluttered environment may have a lower harm potential than another man that same age with diabetes, neuropathy and ambulation problems who lives in an environment with the same level of clutter.
6.1.1 Georgiana: Moderate Capacity-High Risk (Moderate Harm Potential)
Georgiana is 77-years old and lives alone in her mortgage-free home in which she has lived for 37 years. She has always hoarded but when her husband was alive, he managed to keep the level of clutter down with much arguing and strife. Following the death of her husband 15 years ago, her hoarding spiraled out of control and her adult children are very worried about her. Her daughter, Joyce, who is 50-years old and her son Robert, who is 47-years old live a few minutes away. Joyce checks in with her mother by telephone every day and she and Robert alternate visits on weekends. They often volunteer to clear and repair Georgiana’s home but she tells them that they are too busy with their lives and she can take care of things herself. Georgiana’s neighbors are quite fond of her and often stop by to say hello and call Joyce and Robert with updates about their mother. Georgiana’s only source of income is $888.00 from Social Security.
Georgiana owns one dog and one cat and the pets appear to be healthy and well maintained. The cat litter box is full and a musty odor of mildew and wet dog permeates the house. Piles of clothes cover ever table and other pieces of furniture and stacks of newspapers and unopened mail cover the stove and kitchen countertops. Over-ripe fruit scattered around the kitchen attracts flies and canned food items are dusty and rusty and well past their stale date. The kitchen stove and stovetop function but Georgiana rarely prepares meals and when she does, she uses only the microwave. Books, clothes, and hundreds of craft magazines cover the steps to the second level and the banister is broken from the base. A badly worn and poorly secured runner covers the stairs to the second floor and most lights in the home operate but the home is old and poorly lighted in general. Georgiana sleeps in a recliner in the living room or atop a pile of clothes on a daybed in an upstairs guest room. Georgiana can access both bathrooms in the home but the shower and toilet work only in one bathroom. Her car sits in the driveway with two flat tires loaded with boxes and clothes.
Georgiana takes medications for hypertension, diabetes, and glaucoma but she often cannot locate them. She uses a cane around the house but also on her daily walk to and from the grocery store that is a few blocks from her home. Recently, a young woman new to the neighborhood called the police and alerted them to the conditions of Georgiana’s home and the police visited as part of a welfare check. Georgiana greeted the police officer at the door and apologized for the state of her home. Georgiana was appropriately dressed in a clean but badly wrinkled summer dress and light sweater. Georgiana was quite anxious about the visit and deeply embarrassed about the state of her home. She tells the officer that she is fine and does not wish any help. She politely asks him to leave and closes the door.
Although Georgiana appears to have adequate decisional capacity, her functional capacity is limited and the risks of the environment in which she lives are high. Typically, people with a severe hoarding problem such as this (moderate capacity and high environmental risk) are candidates for a harm reduction approach. Following a period of harm reduction, Georgiana may become more open to other interventions, such as a hoarding support or treatment group. However, given that Georgiana declines help and appears to have limited insight about the risks of her situation, harm reduction might be a good place for the clinician to begin.
6.1.2 Roy: Low Capacity-High Risk (High Harm Potential)
Roy is a 72-years old bachelor who lives alone in his mortgage-free home. Roy is a loner and does not have friends nor does he appear interested in people. Roy worked as a roofer for 20 years until he injured himself on a job. He lived on disability payments for several years and now survives on a $638.00 monthly Social Security payment. Neighbors complained to the Environmental Health Department and the department sent a worker to inspect Roy’s home and assess the situation. When Roy answered the knock at the door, the worker saw that Roy was anxious, confused, and walked with an unstable gait. Roy’s hair was matted, his clothes heavily soiled, and he wore one slipper. Roy was defensive when the worker asked questions about him and his home.
A musty odor of mildew and rotting food permeated the air inside the home. Spoiled and rotting food was in the refrigerator and stacks of newspapers and unopened mail covered the stovetop and the kitchen floor. The kitchen stove and burners did not function and the pilot light was off. Rat droppings littered the area in front and beyond the stove, under the sink, and in the kitchen cabinets. During the summer, Roy cooked on a charcoal grill on the back patio and during the winter sometimes brought the grill inside for heat. Books, clothes, dirty engine parts, tools of all kinds, chicken wire, nails, and tar paper covered the steps to the second floor. The banister was broken at the top and Roy had tied it in place with a length of rope. A badly worn and poorly secured runner covered the stairs. The house was dark and most lights did not work. At night, Roy wore a miner’s headlamp to get around his home. Roy slept on a pile of clothes at the edge of the living room and dirty dishes lay on the debris and attracted flies. Roy was not able to access either of the two bathrooms in the house and the shower, bathtub, sink, and toilet did not function. The medicine cabinet contained an array of expired medications and Roy did not remember the reason he took the medications nor who prescribed them. Roy had dug a latrine outside that overflowed with human waste. He had filled his old truck with rotting lumber and wet cardboard boxes. Trash littered the driveway. Roy no longer drove but he kept the truck to tinker with on weekends.
Typically, low capacity-high risk situations require involuntary intervention and, as in Roy’s case, often involve circumstances of imminent harm or danger. In addition, a severe hoarding situation, such as this, often places the community at risk and can result in a court-ordered cleanout. Harm reduction may be a suitable approach to this severe hoarding problem.
In conclusion, this interplay between the functional capacity of the client and the risks of the environment in which he lives influences his harm potential up and down. Simply stated—the client with a severe hoarding problem is at the highest risk because he lacks the functional capacity to manage the inherent risks associated with living in an unsafe environment.
6.2 Objectives of the Harm Potential Assessment
The primary objective of a harm potential assessment is to assess the extent and degree of all factors that influence harm potential. Later in this chapter, I describe in detail the assessment of these factors. However, the harm potential assessment includes two other objectives as well: to assess whether risk is imminent and to document the current level of harm potential in order to monitor compliance with the HR plan.
6.2.1 Assessment of Imminent Risk
As a code enforcement officer once said to me, “I may not know what hoarding is but I know when someone isn’t safe.” For first responders, such as code enforcement, environmental health, or fire and police, the primary objective of a harm potential assessment is to establish whether the situation is safe enough for the person to remain in the environment. Whether the risk is imminent or not, an assessment of imminent risk includes assessments of the safety of the environment and the functional capacity of the person. Often, a first responder, such as a fire official, must call in a mental health professional to assess the functional capacity of the person while she assesses the safety of the environment. At times, the determination of imminent risk rests largely on the functional capacity of the person. For example, it may not be safe for a woman with dementia to return to her home—particularly if she lives alone—even if her home is uncluttered, orderly, and functional.
For many cases of severe hoarding, imminent risk translates to imminent action. When authorities cannot adequately assess the situation, they may act immediately and remove the individual from his living situation until they can fully assess him and his environment. Later, professionals will decide what they must do—if they can do anything—to make the environment safe enough for the individual to return. An assessment of imminent risk may determine whether authorities clear a home fully, partially, or not at all.
At times, a full cleanout of the residence is the only realistic option. Authorities may order a full cleanout if the residence is dilapidated and when they suspect that the structural integrity of the residence is poor. However, often it is not possible to assess the structural integrity of a residence and what can be done to repair and restore it until the residence is empty of clutter. Authorities may opt for a modified rather than a full cleanout when they believe this intervention will result in a living environment that is sufficiently safe, at least for the short term. However, as described in Chap. 4 (Harm Reduction Process for Severe Hoarding), the most effective modified cleanout is one that is part of a comprehensive HR plan. Furthermore, the effectiveness of a modified cleanout rests not only on the safety of the living environment but also on the capacity of the individual and his willingness to work with the HR team.
6.2.2 Document Current Level of Harm Potential
Often, a severe hoarding problem is the focus of intense scrutiny. Property owners may insist the individual clear her home or face eviction and may ask the resident to do more than comply with the relevant health and safety standards. Courts may order a resident to clear her home but base the order on reports from professionals who offer little objective evidence of the problem or the harm potential the resident and community face. Furthermore, courts may order a resident to de-clutter the home but without clear and measureable goals to monitor her compliance with the order. Therefore, an important early step in the HR process is to document the current level of harm potential. There are two reasons I recommend a comprehensive initial harm potential assessment.
First, documenting the current level of harm potential enables clinicians and other professionals to describe clearly to the court the current level of risk and the degree with which the individual is out of compliance with the laws, regulations, and codes that establish safe and unsafe living conditions. Because these laws, codes, and regulations can differ from local to local, I recommend that the clinician familiarize herself with the codes and regulations for the community in which she practices. If the clinician is unfamiliar with these codes and laws, all the more reason to team with other professionals with this knowledge and expertise.
Second, the initial harm potential assessment documents the baseline against which authorities can measure progress. When the court orders people with severe hoarding to de-clutter and clean the residence, the client and others may expend much effort but show little improvement because of the volume of possessions and the level of deterioration of the residence. Therefore, the court can unjustly penalize a client working on the problem because he has not demonstrated to the court that he has made progress. Because many severe hoarding situations are public (or become public) by the time a clinician becomes involved, the likelihood that clinicians will interface with the legal system is high and therefore argues for clinicians and other professionals to use assessment strategies that are as objective as possible. I describe these measures in detail later in this chapter.
6.3 Harm Potential Assessment Versus Treatment Assessment
There is considerable overlap between the objectives of a harm potential assessment and the assessment of hoarding behavior in order to develop a cognitive-behavioral treatment plan (see Fig. 6.2). Both harm potential and treatment assessments include a comprehensive and multi-modal evaluation of the hoarding problem across several domains (psychological, environmental, and functional) and include one or more in-home assessments (Steketee & Frost, 2007). The objective of both assessments is to establish the current extent and severity of the hoarding problem. In addition, both strive to evaluate the client’s current level of risk due to his hoarding behavior and to his readiness for change.
Fig. 6.2
Goals of Harm Reduction and Treatment Assessments
Both assessments screen for other mental health conditions. That may influence the degree to which the client responds to treatment or to harm reduction and, in the case of harm reduction, the role these mental health conditions play in the client’s harm potential. In addition, these mental health conditions may be the focus of other treatment plans, separate from the hoarding disorder. For example, a client with hoarding disorder who also is quite depressed may benefit from the treatment of the depression first before beginning treatment for her hoarding disorder. Similarly, for a client with a severe hoarding problem who is also depressed, the clinician may recommend that the client seek treatment of his depression as part of his HR plan.
Another objective of both harm potential and treatment assessments is to rule out conditions, such as dementia, head trauma, or pervasive developmental delays, that may have hoarding behavior as a feature of the condition but are not necessarily candidates for treatment or even harm reduction. For example, a family member called a clinician concerned about her 78-year-old aunt, Gwyn, who lived with her autistic adult son in the family home. When the clinician entered Gwyn’s home, he found her sitting at the kitchen table surrounded by waste high newspaper and magazine clippings. Each clipping was roughly the same size—2 in. by 4 in.—and littered the kitchen floor. Her hands were black with newspaper ink and her hygiene was quite poor. When she was not cutting newspapers, she was scouring the neighborhood for old newspapers that she brought to her small home. From the evaluation, the clinician learned that Gwyn’s newspaper hoarding and odd paper-clipping behavior began less than a year ago and before then she had not exhibited any hoarding behavior. She was, however, an inveterate coupon clipper (as suggested by the shape of the paper she repeatedly cut) and she had always prided herself on her frugal ways. The clinician recommended to the family that they ask Gwyn’s physician to evaluate her for a possible stroke, which the physician confirmed on examination. In Gwyn’s case, a HR plan was inappropriate. Gwyn’s condition made it unlikely that she could continue to live independently and care for her autistic son. The clinician helped the family find alternative housing and care for Gwyn and her son.
Although there are similarities between these two assessment approaches, there is a difference and the difference is significant. As mentioned, the primary objective of a harm potential assessment is to develop a HR plan, not a treatment plan. For this reason, a harm potential assessment focuses more on factors that influence—up or down—the harm potential for clients with a severe hoarding problem rather than on the underlying psychological variables presumed to maintain hoarding behaviors. For a clinician developing a cognitive-behavioral treatment plan, these psychological variables are of paramount importance because they are the primary targets of the intervention strategies. Therefore, for the cognitive-behavioral therapist, the assessment must include measures of these variables, such as the Saving Cognitions Inventory (Steketee, Frost, & Kyrios, 2003a, 2003b) or the Saving Inventory Revised (Frost, Steketee, & Grisham, 2004).
In the case of severe hoarding, the clinician depends less on self-report measures and more on measures completed by the professional conducting the assessment. There are two reasons for this approach. First, I question the validity of self-report measures for people with low insight. Even people with adequate insight about the hoarding behavior will at times minimize the degree of the problem and those with severe hoarding tend to deny the problem altogether. Second, symptom checklists or measures designed to identify the underlying psychological variables presumed to drive hoarding behavior may upset or put off the client and therefore present an impediment to harm reduction. Furthermore, even if the client did complete these measures, I question the usefulness of these data when developing a HR plan. In fact, if the client took the time to complete all the psychological measures, I would encourage the client to seek treatment rather than harm reduction for the hoarding problem.
In summary, the objective of both harm potential and treatment assessments is to establish the current extent and severity of the hoarding problem, the client’s current level of risk, and his readiness for change. In addition, both assessment approaches screen for co-occurring medical and psychological conditions that likely influence both HR and treatment plans. The primary difference (see Fig. 6.2, bold) between these two assessment approaches, however, is that a harm potential assessment does not strive to identify the psychological variables presumed to drive the hoarding behaviors because these are not the intervention targets in harm reduction. Instead, a harm potential assessment strives to provide a snapshot of current harm potential for a particular person in a particular environment as well as identify the environmental and functional capacity targets that are central to managing risk.
6.4 Who Can Assess Harm Potential
I have strived to develop an assessment process that both clinicians and non-clinicians can use in the service of developing a HR plan. The rationale for an assessment approach that does not require clinical expertise or training, like harm reduction, is pragmatic. First, many times, non-clinicians are the first to respond to a severe hoarding situation and must make a quick assessment, at least, of imminent risk. Second, many people with a severe hoarding problem refuse to speak to clinicians, such as APS workers and often are more comfortable with other professionals, such as fire officers or home health aides. Third, often the court instructs these nonclinical professionals, as in the case of code enforcement officers, to assess the hoarding situation and these professionals would benefit from an objective method of assessment. In addition, the court often instructs these non-clinicians to develop a written report to present to the court that includes an assessment of the situation and a plan to help the individual who hoards. Last, at times non-clinicians are not only the first responders but they are the only responders in rural communities with little access to mental health services. At the same time, I recognize that mental health professionals are best qualified to assess decisional capacity, particularly as it influences the client’s competency.
In order to meet the goal of enabling both clinicians and non-clinicians to conduct a harm potential assessment, I favor measures that do not require special training to use. Therefore, medical professionals, such as nurses or occupational therapists can conduct a harm potential assessment, as well as other professionals, such as professional organizers, environmental health workers, code enforcement officers, fire and police officers. Even property owners and property managers can conduct a harm potential assessment. The Clutter Image Rating Scale (CRS) (Frost, Steketee, Tolin, & Renaud, 2008) scale, Activities of Daily Living for Hoarding (ADL-H) (Frost, Hristova, Steketee, & Tolin, 2013) and the Home Environment Index (HEI) (Rasmussen, Steketee, Brown, Frost, & Tolin) are examples of measures that are easily administered and do not require extensive training to use. I describe these measures and others in detail later in this chapter.
At times, professionals from different departments or agencies develop their own harm potential assessment measures that focus on one aspect of harm potential over another based on their professional role and expertise. For example, the fire inspector is likely to focus on specific fire risks, such as the quantity of flammable materials in the residence; or, whether the doorways, stairwells, and windows are clear for easy egress. The visiting nurse might focus on the cleanliness of the environment or presence of airborne pathogens. The occupational therapist might focus on the slip and fall risks and whether the client can complete activities of daily living (ADL) within the environment. To ensure that all risks are included in the assessment, I recommend that all professionals involved in the assessment meet to share their observations in order to develop a comprehensive and coherent harm potential assessment. If the team agrees that they lack certain information required to finalize the harm potential assessment, the team may recommend a second visit for that purpose. Multiple visits to the severe hoarding site are not ideal but sometimes it is necessary in order to develop a comprehensive harm potential assessment.
Although a comprehensive harm potential often includes input from a variety of professionals, I recommend that every harm potential assessment include input from a mental health professional, when possible, to provide information regarding the social and psychological factors that can influence the harm potential of an individual. I say “when possible” because often a client will refuse to meet with a mental health professional, even for the purposes of a harm potential assessment.
6.5 Factors Influencing Harm Potential
The level of harm potential depends on the interaction between two broad factors—environmental risks and the client’s functional capacity. In this section, I describe these two inter-related factors and methods to assess them as part of a comprehensive harm potential assessment in cases of severe hoarding.
6.5.1 Environmental Factors
Environmental factors focus on risks associated with the living situation itself, such as whether clutter covers the heating and cooling vents, stairs, and stovetops, or whether the client can easily exit through doorways in case of a fire. In addition, the integrity of the floorboards, the level of mold and mildew, and whether the residence has water and an operating toilet are environmental factors that influence harm potential.
However, a cluttered kitchen does not necessarily translate into high harm potential. If the client can safely prepare meals in the kitchen, the harm potential might be quite low even if the kitchen is very cluttered and disorganized. Similarly, it is not necessarily dangerous to own a large number of books. We do not view libraries as fire hazards just because they contain large numbers of books. In other words, the number of possessions is not sufficient to determine whether an environment is dangerous or not. Rather harm potential reflects not just the amount of clutter but also the specific harm the clutter presents. A client who stores or sits his books on the radiator, near the stove, or has too many in one place in his home such that the weight endangers the structural integrity of the building may be a great risk whereas a client with the same number of books but piled against walls or in closets may not.
Within the guidelines of the law, people have the right to live as they choose. People differ widely in their comfort with clutter and in their attention to housekeeping, whether they hoard or not. Some people clean their homes often and keep their living spaces neat and tidy. Other people seldom clean their homes and are comfortable with clothing, papers, and household items strewn about their living spaces. Although by definition, cases of severe hoarding are well beyond what people might deem personal preference or lifestyle, a residence may be highly cluttered, disorganized, and dirty yet still meet legal standards for health and safety. For this reason, I recommend clinicians become aware of the health and safety codes within their communities. Failures to meet the minimum standards inherent in these codes are important indexes of environmental risks.
6.5.1.1 Assessing Environmental Risks
The objective of a comprehensive assessment of environmental risk is twofold. First, an assessment of environmental risk identifies the inherent risks of the residence itself. Can the client exit the residence quickly in an emergency? Is the residence safe from fire? Is the residence sanitary? In addition, an objective assessment of environmental risk identifies likely environmental HR targets that include a method for monitoring progress as the team works to manage the severe hoarding problem over time. This last point is particularly important when the court has ordered the client to comply with a HR intervention.
The best methods for assessing environmental risk are measures that clinicians and non-clinicians can complete quickly, with little training, and with confidence that they accurately reflect the important variables that influence environmental risk. The total time to complete all the following measures is 20–30 min or less. The identification of HR targets and the translation of these targets into measureable HR goals may take considerably longer (see Chap. 8: Creating a Harm Reduction Plan).
6.5.1.1.1 NSGCD Clutter Hoarding Scale
Professional organizers with expertise in chronic disorganization developed the NSGCD Clutter Hoarding Scale (Johnson, 2007) to assess health and safety factors in a cluttered environment (see Appendix 1). The measure includes five (5) levels. Level I on the NSGCD scale reflects an average home without clutter and without any health or safety concerns. Level II on the NSGCD scale reflects a home with some clutter but no health and safety risks (a messy average home). Level III on the NSGCD scale reflects a home with slight health and/or safety risks, such as mold or mildew. Level III clutter is beyond average and reflects chronic disorganization or a mild hoarding situation. Level IV on the NSGCD scale reflects a home with substantial disorganization or a hoarding situation and/or significant health or safety risks, such as blocked doorways, rotting food on counters, or excessive combustible materials that are code violations and could lead authorities to condemn the home. Level V includes significant structural problems, broken plumbing and/or a broken heating system, no sewer service, and standing water or excessive combustible materials, in addition to significant health or safety risks.
6.5.1.1.2 Clutter Image Rating Scale
The Clutter Image Rating Scale (CIR) (Frost et al., 2008) is an effective and objective measure of the level of clutter in standard rooms of a home (see Appendix 2). The scale requires no special training and has good internal consistency, test-retest, and inter-observer reliability, as well as good convergent validity with other measures of hoarding symptoms (Frost et al., 2008). The scale uses nine photographs for each of three main rooms (living room, kitchen, and bedroom), where 1 = no clutter to 9 = severe clutter (clutter covers most space in the room). The clinician compares the nine photographs of standard rooms (bedroom, living room, kitchen) to the rooms in the home that she is assessing and selects the photograph that most closely matches the room in the home. The clinician uses the nine photos of the kitchen to assess other rooms in the home.
In addition, the clinician or non-clinician may wish to take photographs during in-home visits and then compare these photographs to the photographs in the CIR. This is another simple way to include objective measures of the level of clutter. I recommend that HR team members take the photographs from the same location and at the same level and record these positions, along with the date, on each photograph. This is particularly important when the court has ordered the HR intervention and the clinician, client, and other members of the HR team wish to demonstrate progress and a good-faith effort to resolve the severe hoarding situation.
6.5.1.1.3 Inspections Hoarding Referral Tool
The Inspections Hoarding Referral Tool (Metropolitan Boston Housing Partnership, Boston, MA 2007) is a simple pencil and paper measure that enables clinicians and non-clinicians to shade the cluttered areas in a conventional home. The professional can also note the location of doors and windows and note whether clutter blocks or limits access to them. In addition, the clinician or non-clinician can include notes about the severity of the clutter (1–10, where 1 = no clutter and 10 = no access) and the types of possessions that make up the clutter.
6.5.1.1.4 Home Environment Inventory
The HEI (Rasmussen, Steketee, Frost, Tolin, & Brown, 2014) is a simple measure of risks within a living environment. This measure is particularly helpful in cases of severe hoarding in which the likelihood of squalor may be higher. The measure uses a 0–3 scale to note the level of severity in 22 areas. Some areas focus on environmental risks, such as structural damage, human waste, or standing water, where other areas focus on functional capacity of the client, such as ADL. A variety of professionals, such as home health aides and visiting nurses, can easily complete the measure and thereby provide objective and detailed information about the level of squalor they observe. The measure does not include a formal scoring system. Scores range from 0 to 45 and a total score of 20 or above reflect significant squalor. Although the HEI is a self-report measure, I recommend the clinician complete the measure, in part, because the client may refuse to complete it or complete it but underreport the severity or even the presence of squalor.
6.5.1.1.5 HOMES Multidisciplinary Hoarding Risk Assessment
The HOMES Multidisciplinary Hoarding Risk Assessment (HOMES; Bratiotis, 2009) is a straightforward measure of the common range of problems associated with a significant hoarding situation (see Appendix 3). The measure includes a checklist that targets five domains: health, obstacles, mental health, endangerment, and structure, and safety. Clinicians and non-clinicians can easily complete this measure and requires no special training or particular professional qualifications.
6.5.1.1.6 Activities of Daily Living-Hoarding
The Activities of Daily Living-Hoarding (ADL-H) scale (Frost et al., 2013) includes questions that pertain to the quality of the living conditions (e.g., presence of rotten food, insect infestation) and safety and health risks (e.g., fire hazard, unsanitary conditions) (see Appendix 4). The ADL-H scale also includes questions that pertain to the ability of the client to complete ordinary activities like bathing, dressing, and preparing meals. Clinicians and non-clinicians rate the Activities of Daily Living questions of the ADL-H scale on a 1–5 scale, where 1 = can do it easily and 5 = unable to do and N/A for not applicable. Clinicians and non-clinicians rate the Living Conditions and Safety Issues questions on a 1–5 scale, where 1 = none or not at all and 5 = severe. I describe the ADL-H scales again later when I take up the topic of assessing functional capacity.
In addition to the measures mentioned earlier, the clinician and non-clinician may wish to use a Quick Assessment Tool—Environmental Risk (see Appendix 5) to organize the assessment of typical situations within a residence that may influence harm potential.
6.5.2 Functional Capacity Factors
We now shift our attention from features of the environmental that influence harm potential to the functional capacity factors, which are features of the person within the hoarding environment. Functional capacity factors include the client’s physical, psychological, and social capacity. Psychological and physical capacity factors include the level of insight and motivation the client has about his hoarding behavior, as well as other aspects of his physical and psychological functioning, such as whether he has medical problems, whether he uses a walker or cane to ambulate, and whether he has additional psychiatric conditions. Social capacity includes features of the support system of the person with a severe hoarding problem. Social capacity factors consider whether the client has family members who live nearby, whether he is currently receiving social support services, whether he is spending time with others (friends, family, caregivers) outside his home, whether he participates in a faith community, and whether he has the financial resources to support his social well-being.
In this next section, I describe in detail each of the three functional capacity factors (physical, psychological, social) and present guidelines for assessing these factors. However, the functional capacity of a client is influenced by the environment in which he lives. The assessment of the capacity of the client in his home provides the most relevant information about his ability to life safely and independently in his home. For example, relevant cues within his living environment can assist him to complete certain functional tasks. A closet prompts the client to change his clothes. A sink and toothbrush prompt him to brush his teeth. Without these prompts, the client may be less likely to engage in these tasks and thereby appear to have a lower functional capacity than he does. At the same time, a highly cluttered home can present many visual distractions to the client who lives there. These distractions or competing demands (such as re-stacking papers that have tumbled) can interfere with the client’s ability to perform everyday tasks. For this reason, tests of functional capacity conducted in medical settings with few distractions or competing demands and without prompts for much practiced functional behaviors, may underestimate a client’s abilities (Grisso, 2003; Marson & Briggs, 2001).
6.5.2.1 Physical Capacity
The physical capacity of an individual includes any medical, health, sensory, and physical limitations that influence his ability to function within the environment in which he lives. These include the client’s treated and untreated medical conditions, substance use, diet, and, medication use. In addition, since the severe hoarding client is likely to be older, often in his 60s, 70s, or 80s, other age-related factors may affect his harm potential, such as sensory impairment or decline. Poor vision increases the likelihood that an older adult may fall in a cluttered environment. Declines in taste and smell may increase the likelihood that an older adult will eat off food.
Researchers have noted that as people age, the severity of hoarding symptoms increases (Ayers, Saxena, Golshan, & Wetherell, 2010) but have not yet identified clearly the reasons. Perhaps the primary mechanisms that maintain hoarding behavior worsen with age or perhaps the functional capacity of the individual worsens simply because the home environment deteriorates and the individual’s functional capacity, in general, declines with time. Nevertheless, several important differences between older and younger adults who hoard can dramatically influence a client’s harm potential. Older adults with hoarding disorder are more likely to have comorbid health issues, often accompanied by physical disabilities or limitations (Chapin, Sergeant, Landry, Koenig, Leiste, & Reynolds, 2010; Kim, Steketee, & Frost, 2001). Older adults who hoard are more likely to live alone and are more socially isolated than one would expect from a healthy community sample of older adults (Ayers et al., 2010; Chapin et al., 2010; Kim et al., 2001) and social isolation, coupled with chronic health conditions, is likely to increase the harm potential of older adults who hoard.
6.5.2.2 Assessing Physical Capacity
The most straightforward measure of the physical capacity of a client is his ability to accomplish routine activities in his living environment. These ADL behaviors include basic self-care behaviors, such as eating, dressing, bathing, toileting, grooming, ambulating, and transferring (Katz, Ford, Moskowitz, Jackson, & Jaffe, 1963).
6.5.2.2.1 Activities of Daily Living for Hoarding
I presented the Activities of Daily Living for Hoarding Scale (ADL-H) (Frost et al., 2013) earlier as a way to assess environmental risk (see Appendix 4). This scale includes measures of physical capacity as well a measure of day-to-day functioning within a cluttered environment. The ADL-H is an adaptation of the Activities of Living Scale (Katz et al., 1963).
6.5.2.2.2 Instrumental Activities of Daily Living
The Instrumental Activities of Daily Living (IADL) (Angel & Frisco, 2001; Lawton & Brody, 1969; Loewenstein & Mogosky, 1999) is another measure of physical functional capacity. The IADL measures more cognitively complex activities such as using transportation, doing laundry, obtaining and preparing food, maintaining shelter, handling finances, obtaining necessary medical care, making healthcare decisions, and administering medications.
6.5.2.2.3 Evaluation of Medical Conditions
People who hoard are likely to suffer from a variety of serious and often chronic medical conditions, such as obesity, arthritis, and autoimmune or gastrointestinal conditions (Tolin, Frost, Steketee, Gray, & Fitch, 2008). Hypertension, congestive heart failure, and diabetes can influence ambulation, endurance, memory, and vision and directly increase the client’s harm potential. Clients with respiratory conditions, such as asthma and emphysema, may find it difficult to manage these problems when living in an environment laden with high levels of dust, mold, and other airborne contaminants. Clients with severe hoarding and emphysema or lupus may suffer from extreme fatigue that makes it difficult to function adequately in their residence or to participate fully in a harm reduction plan. Arthritis may make it difficult to ambulate through the home or to sort or move possessions. Lack of adequate heat or cooling may threaten the life of frail older adults who are easily dehydrated or cannot tolerate temperature extremes. Nutritional deficits can significantly decrease an older adult’s physical capacity. For example, inadequate levels of the B12 vitamin can result in memory loss and poor cognitive functioning. Similarly, fatigue, memory loss, and ambulation problems can be side effects of medications or substance use (Zarit & Zarit, 2007).
A number of age-related conditions can affect vision, such as cataracts, and glaucoma. Retinal disorders are the leading cause of blindness in the United States and include macular degeneration and diabetic retinopathy. As people age, the risk of falls increase and often result from age-related changes in the body. Declines in sight, hearing, muscle strength, coordination, and reflexes affect balance and can result from poorly managed medical conditions, such as diabetes and heart disease. Because poor physical capacity is common in older adults with severe hoarding, I recommend the clinician check whether the client has received a thorough medical evaluation in the past year and the names of physicians prescribing medications for the client and for what conditions.
In conclusion, the assessment of the physical capacity of the client with a severe hoarding problem covers a great deal of ground. At the minimum, the harm potential assessment includes his current medical and physical condition and whether he can and is managing those conditions; whether he can and is managing his personal care; whether his nutrition is sound; and, whether he can ambulate, transfer, and complete activities that are part of adequate day-to-day functioning within his living environment. To organize the assessment of physical capacity, the clinician may wish to use a Quick Assessment Tool—Physical Capacity (see Appendix 6) to assess the client’s medical, physical, and sensory limitations that influence his harm potential.
6.5.2.3 Psychological Capacity
Psychological capacity includes the cognitive and psychological factors that influence the harm potential of clients with severe hoarding. The section begins with a discussion of problems that influence not only the decisional capacity of the client, such as dementia, but also the broader psychological capacity of the client, which can influence his ability to function adequately in his living environment and, as importantly, to participate in a harm reduction plan to manage his severe hoarding problem. The section then describes methods to screen for these factors when assessing the psychological capacity clients with severe hoarding. Although this section includes methods to screen for psychological capacity, the clinician will find that she often depends on collateral sources, such as family members, physicians, neighbors, and friends for information on the client’s psychological capacity rather than on the client who may be reluctant to provide this information.
6.5.2.3.1 Dementia
Dementia is an umbrella term for several types of progressive cognitive and functional impairment found in older adults, such as Alzheimer’s disease or frontotemporal dementia (FTD). Although most older adults with hoarding behaviors do not exhibit significant cognitive impairment due to dementia (Ayers et al., 2010; Bratiotis & Flowers, 2010; Kim et al., 2001; Turner, Steketee, & Nauth, 2010), evidence is mounting that there may be a relationship between hoarding behavior and frontally mediated cognitive processes (Grisham, Norberg, Williams, Certoma, & Kadib, 2010; Hartl, Duffany, Allen, Steketee, & Frost, 2005; Mataix-Cols, Pertusa, & Snowdon, 2011). Furthermore, there is some evidence, although limited, that individuals with FTD may develop hoarding behaviors (Mendez & Shapira, 2008; Nakaaki, Murata, Sato, Shinagawa, Hongo, Tatsumi et al., 2007), particularly when the hoarding behavior develops later in life (Anderson, Damasio, & Damasio, 2005; Saxena et al., 2004). At this time, however, the impact of cognitive impairment and decline on hoarding behaviors is still unclear and warrants further research. Again, we know little about those with severe hoarding, including the prevalence of dementia, because they seldom participate in research studies.
When psychosis or dementia does present in older adults with hoarding behaviors, it is more often seen in clients who reside in nursing homes, or assisted living facilities than in typical outpatient clinical settings (Andersen, Raffin-Bouchal, & Marcy-Edwards, 2008; Marx & Cohen-Mansfield, 2003). Studies on dementia, particularly Alzheimer’s disease, indentified hoarding behavior in these individuals, but the typical hoarding behaviors in this population, such as the covert hiding of objects, is more of an inconvenience to caregivers when items go missing then a limit on the ability of the individual to function in the living environment (Baker, Raetz, & Hilton, 2011; Marx & Cohen-Mansfield, 2003).
Although hoarding behaviors are not common in people with FTD they do occur. For those with FTD who do hoard, however, the hoarding behavior appears to be different for younger adults versus older adults who hoard. Older adults with FTD tend to engage in repetitive, perseverative behavior, similar to people with Alzheimer’s disease. Hoarding behavior is just another behavior within a suite of repetitive and preservative behaviors (Boxer & Miller, 2005; Mendez & Shapira, 2008; Nakaaki et al., 2007) common to people with dementia. FTD is perhaps the most common dementia diagnosed in people under the age of 60 years and is as common as Alzheimer’s disease among people age 45–64 years (Ratnavalli, Brayne, Dawson, & Hodges, 2002). Early symptoms of FTD typically involve personality or mood changes such as depression and withdrawal. Sometimes people with FTD exhibit compulsive behavior, such as collecting things or repeating routine activities such as shaving or cleaning. They may gain weight rapidly because of dramatic overeating or they may neglect their hygiene and fail to care for themselves. In addition, those with FTD may lack awareness that their behavior has changed.
However, even in the absence of significant cognitive impairment found in those with dementia, the incremental decline in cognitive function of older adults who hoard can aggravate hoarding behavior and make it more difficult for the client to manage the associated risks of living in a highly cluttered environment.
6.5.2.3.2 Other Psychological or Psychiatric Conditions
Although we know little about those with severe hoarding because they seldom participate in research studies, we do know that people with hoarding disorder who participate in research studies typically have co-occurring psychological or psychiatric conditions (Frost, Steketee, & Tolin, 2011). For example, more than half of people who seek treatment for hoarding disorder exhibit symptoms of major depressive disorder (Frost, Steketee, Williams, & Warren, 2000). Thirty percent of people with hoarding disorder have attention deficit disorder (ADD) and 15 % have ADD with hyperactivity (Frost, Steketee, Tolin, & Brown, 2006a, 2006b; Sheppard, Chavira, Azzam, & Grado, 2010). People who hoard also present with a range of anxiety disorders, such as social phobia (30 %), generalized anxiety disorder (30 %), obsessive-compulsive disorder (17 %), (Frost, Steketee, & Tolin, 2011; Frost, Steketee, Williams, & Warren, 2000; Tolin, Meunier, Frost, & Steketee, 2010) and posttraumatic stress disorder (Hartl et al., 2005).
6.5.2.4 Assessing Psychological Capacity
For the purposes of assessing psychological capacity, the clinician is interested in the role cognitive impairment or psychological conditions plays in the harm potential of the client with a severe hoarding. Therefore, the assessment of harm potential differs from neuropsychological testing, or psychiatric and neurological evaluations that strive to measure the presence or absence of the condition for the purposes of developing a plan to treat or remediate the conditions. Instead, the clinician assessing the harm potential of the client with severe hoarding is interested in identifying co-occurring conditions that may influence the client’s harm potential and his willingness and ability to engage in the HR process. It is difficult enough for the client with a severe hoarding problem to participate in the harm reduction process but the client who also suffers with major depression or ADD may have a much more difficult time.
Interestingly, some clients with a severe hoarding problem are more willing to accept a referral for the treatment of a co-occurring condition, such as depression or ADD than they are for the hoarding behavior itself. When discussing with the client a referral for treatment of a co-occurring condition, the clinician may wish to explain that the treatment, often medications, will help the client participate more effectively in the harm reduction process. I recommend that the rationale for treatment referrals focus on the role of such referrals in achieving the objectives of the harm reduction process. Clients, in particular older adults who are not familiar or comfortable with the idea of mental health treatment, may more willingly accept a treatment referral when they understand that treating the depression, for example, may improve their ability to participate in the harm reduction process and thereby help them to remain in their residence.
6.5.2.4.1 Screening for Dementia
Only a neuropsychological and comprehensive medical exam can confirm that an individual suffers from dementia, and specify the form of dementia. However, clinicians and other professionals can easily administer a number of tools to screen for the presence of dementia without any formal training. We do not recommend family members administer these screening measures. The client may respond differently to questions posed by a family member than the same questions posed by a clinician or non-clinician who does not have a long-term relationship with the client and who is more objective and professional during the administration of a dementia-screening tool. There are a number of dementia-screening tools and three of the most often used tools are: Mini-Mental Status Exam, Brief Cognitive Assessment Tool (BCAT), and Clock Drawing Test (CDT).
Mini-Mental State Exam
The Mini-Mental State Exam (MMSE) (Folstein, Folstein, & McHugh, 1975) is the most studied of all the dementia-screening instruments. The MMSE is a brief 30-point questionnaire that requires 10 min to administer. The MMSE includes questions about awareness of personal identity, location and time, attention and immediate verbal recall. The MMSE has acceptable accuracy in diagnosing dementia, with a relatively low rate of false negative diagnoses but a false positive rate near 60 % (Lopez, Charter, Mostafavi, Nibut, & Smith, 2005). A false positive rate near 60 % means that not everyone suspected of having dementia based on the MMSE will have it. For this reason, if the client is positive on screening with the MMSE, I recommend that the clinician refer the client for appropriate neurocognitive testing.
Brief Cognitive Assessment Tool
The BCAT (Mansbach, MacDougall, & Rosenzweigh, 2012) is a multi-domain cognitive screening tool that assesses orientation, verbal recall, visual recognition, attention, abstraction, language, executive functions, and visuospatial processing. The BCAT is sensitive to different levels of cognitive impairment and predicts dementia as well as the functional status of the individual. Paraprofessionals and clinicians can administer the BCAT in approximately 10–15 min. A shorter form of the BCAT is a six-item, 21-point measure that is a dependable cognitive screening tool and paraprofessionals and clinicians can administer the BCAT-Short Form in 5 min (Mansbach & MacDougall, 2012).
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