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Hoarding in the Home: A Toolkit for the Home Healthcare Provider

Chater, Catherine MSc, OT Reg; Shaw, Jay MPT; McKay, Sandra M. PhD

doi: 10.1097/NHH.0b013e3182838847
Feature: CE Connection

Hoarding is a mental health disorder characterized by difficulties with discarding possessions, yielding cluttered and chaotic home environments that can pose significant safety concerns, impairment to functioning, and distress for those who live in and encounter these situations. Understanding the condition and the strategies available to support individuals who hoard are important skills for the home care provider and are described here in the context of one community organization's response via the development of a Community Clutter and Hoarding Toolkit.

Catherine Chater, MSc, OT Reg , is an Occupational therapist with VHA Rehab Solutions, Toronto, Ontario, Canada.

Jay Shaw, MPT, is a Research Associate with VHA Home Healthcare and VHA Rehab Solutions, Toronto, Ontario, Canada.

Sandra M. McKay, PhD, is the Manager of Research and Program Evaluation at VHA Home Healthcare and VHA Rehab Solutions, Toronto, Ontario, Canada.

The authors gratefully acknowledge the significant support and insights of Cheryl Perera, Barbara Cawley, and Bea Mudge in the preparation of this article, without whom this work would not have been possible.

Catherine Chater received an unrestriced educational grant from VHA Home HealthCare and VHA Rehab Solutions for the completion of this article. The authors and planners have disclosed no potential conflicts of interest, financial or otherwise.

Address for correspondence: Catherine Chatter, MSc, OT Reg, 30 Soudan Ave., Suite 600, Toronto, ON M4S 1V6, Canada (cchater@vha.ca).

For 45 additional continuing nursing education articles on psychosocial/psychiatric topics, go to nursingcenter.com/ce.

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Introduction

Figure

Figure

Hoarding is neither a new mental health condition, nor an uncommon one: recent prevalence estimates suggest that about 5% of the adult population engages in hoarding behavior (Samuels et al., 2008). In the last decade, popular television shows, elevated media coverage, and the exponential growth in hoarding research have significantly increased public and professional awareness of this phenomenon (Pertusa et al., 2010; Snowdon & Halliday, 2004). Understanding this disorder and the specific strategies available to home healthcare providers to improve safety conditions in cluttered environments can be invaluable to healthcare workers and the people they support (Chater & Levitt, 2009).

Hoarding is characterized by a marked difficulty with discarding objects of seemingly limited value, leading to cluttered homes, safety concerns, distress, and impaired functioning (Frost & Hartl, 1996). Most people who hoard engage in the disproportionate acquisition of possessions, typified by excessive shopping, “bargain hunting,” or collecting of trash and other giveaway items that do not have a practical place to be stored or used (Frost et al., 2009). This imbalance between acquisition and discarding results in the accumulation of excess clutter. Clutter is typically composed of common household items such as papers, books, clothes, food, and furniture, which are spread about the home in disorganized piles that blend important and useful possessions with trash, disused, and unlike items. Spaces within the home of someone who hoards are frequently inaccessible and unusable—the shower, for example, may be filled with stacked clothes, the bed so covered with belongings that occupants must sleep in a chair, or a broken freezer inoperable as it cannot be accessed by the repair technician. It is estimated that in about half of the homes of people who hoard, the sink, tub, stovetop, or refrigerator is unusable, and that 1 in 10 homes do not have a working toilet (Frost et al., 2000).

The functional and social implications of hoarding are significant (Tolin, Frost, Steketee, & Fitch, 2008; Tolin, Frost, Steketee, Gray, & Fitch, 2008). Hoarding behaviors and excessive clutter are also frequently described as a source of significant distress and frustration for family members of people who hoard, leading to levels of rejection comparable to that measured among family members of people with schizophrenia (Tolin, Frost, Steketee, & Fitch, 2008; Tolin, Frost, Steketee, Gray, & Fitch, 2008).

Excess clutter can seriously compromise health and safety. Fires, floods, falls, unhygienic conditions, mold, infestations, and unmanaged garbage create significant risks for the home's occupants as well as other units or dwellings in the immediate locale (Frost, Steketee, & Williams 2000; Frost, Steketee, Williams, & Warren, 2000; Lucini et al., 2009; Steketee et al., 2001). Eviction and other court proceedings may result in homelessness, expensive fines, or an unwanted move into a long-term-care facility (Frost, Steketee, & Williams 2000; Frost, Steketee, Williams, & Warren, 2000; Tolin, Frost, Steketee, & Fitch, 2008; Tolin, Frost, Steketee, Gray, & Fitch, 2008). The serious nature of health, safety, and functional impairment characteristic of people who hoard highlights the need for community health providers to have knowledge and the tools to respond effectively to situations of excess clutter (Valente, 2009).

This article describes the experiences of clients and health providers who encounter hoarding in their community practice, reviewing specific strategies for intervening through a skill development and harm reduction framework. This approach will be described within the context of a hoarding program and toolkit that was developed by one community-based, nonprofit health service agency (referred to herein as “the organization”).

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Hoarding: How it Happens

The onset of hoarding symptoms typically occurs in early adolescence and follows a chronic and progressive course, yielding excess clutter and impairment by mid-to-late life (Frost & Gross, 1993; Grisham et al., 2006; Tolin et al., 2010; Winsberg et al., 1999). The appearance and severity of hoarding behaviors have been linked to the occurrence of traumatic and stressful life events both in childhood and across the lifespan (Grisham et al., 2006; Hartl et al., 2005; Samuels et al., 2008; Tolin et al., 2010). For example, individuals with hoarding behaviors are more likely to report a history of childhood break-ins, excessive physical discipline, or a parent with psychiatric illness (Samuels et al., 2008). The phenomenological research of Kellet et al. (2010) similarly concluded that people who hoard often understand their own behavior in terms of a reaction to childhood adversity, including the experience of learned emotional suppression in the face of authoritarianism and rejecting parenting styles and other abusive experiences. In adults, rates of interpersonal violence and the stressful experience of having a belonging taken by force are reported at disproportionately high rates and furthermore noted to trigger periods of symptom intensification (Cromer et al., 2007; Samuels et al., 2008; Tolin et al., 2010).

Exploring themes of emotional deprivation and loss can assist in the development of personalized case formulations (Box 1) and allow client and clinician alike to understand the emotional purpose clutter represents (Landau et al., 2011). This lays the foundation for clients to develop the skills to process their emotions as emotions, and relate to objects as the physical items that they are.

Box 1

Box 1

When asked about why objects are acquired and saved, people who hoard typically cite the same reasons that nonhoarders will describe for keeping their possessions, albeit with significantly greater intensity and broader application (Frost & Gross, 1993; Kellet et al., 2010; Pertusa et al., 2008). Furby (1978) first described this in terms of the ways in which people perceive value in their possessions: sentimental, instrumental, and intrinsically motivated attachments.

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Sentimental Hoarding and Emotional Attachment

Sentimental hoarding arises with objects that are held onto as representations of the connection to important people, events, and places, evoking the memories and associated emotions. Kellet and colleagues describe sentimental hoarding in terms of “object–affect fusion” whereby an individual's emotional association with an object is no longer an experience owned within the individuals themselves, but perceived as being the object (Kellet, 2006; Kellet & Knight, 2003). In this context, the task of intervention becomes one of supporting clients to uncouple their emotional experience from the object—that is, to keep (or process) the affect without keeping the item itself (Figure 1).

Figure 1

Figure 1

Strong emotional attachment to possessions is a consistent theme among people who hoard (Kellet et al., 2010). Although this is often reflected as a process of sentimental attachment, it can also be experienced as an exaggerated relationship with inanimate objects to the point where items are perceived to have emotional states (anthropomorphizing), viewing possessions as so enmeshed within one's identity that they are extension of self, or as cues that signal a safe environment to the individual who hoards (Frost & Steketee, 1998).

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Intrinsic Hoarding and Collections

Intrinsic objects are those that do not have a practical use or sentimental meaning but are perceived as aesthetically appealing, special, or possessing unique craftsmanship (Cherrier & Ponner, 2010; Furby, 1978; Kyrios et al., 2004). As it is common for people who hoard to attend to the aesthetic features of an object that most nonhoarders would not consider as noteworthy (e.g., the ink color of newspaper type or the texture of a water bottle) and attribute unique qualities to their objects (Grisham et al., 2010; Wincze et al., 2007), the volume and diversity of objects saved for their perceived intrinsic value can be almost limitless for people who hoard. Intervention for intrinsic hoarding involves assisting clients to reevaluate internalized criteria for assessing an object's true uniqueness and value.

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Instrumental Hoarding: “Just in Case”

Objects that serve a clear functional purpose, such as a pair of shoes or toothbrush, hold practical value in either the present or possible future, such as a raincoat. Excess acquisition of these types of objects, termed instrumental hoarding (Furby, 1978), is often motivated by an exaggerated sense of responsibility to respond to unspecified future needs (Frost & Gross, 1993; Frost & Hartl, 1996; Frost et al., 1995), resulting in the voluminous accumulation of possessions “just in case they are needed someday for something.” Newspapers, flyers, documents, and magazines are common examples of items hoarded to avoid anticipatory anxiety associated with discarding information that is perceived to hold critical importance for some later date (Nezioglu et al., 2004). Supporting clients to reevaluate their thinking about the actual versus the imagined importance of information (or other instrumental items) and to gain new perspective on the realistic consequences of not having a needed item can be useful strategies to overcome barriers to discarding possessions (Box 2).

Box 2

Box 2

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Organizational Skills

Challenges with sorting and organization for individuals who hoard not only derive from emotional attachments and impractical beliefs about instrumental, intrinsic, and sentimental objects but also appear to be shaped by informational processing deficits (Frost & Gross, 1993; Frost & Hartl, 1996). Standardized testing and self-report measures suggest that many individuals who hoard experience substantial problems with attention and frequently exhibit symptoms consistent with attention-deficit hyperactivity disorder (Grisham et al., 2007; Tolin, 2011a; Tolin & Villavicencio, 2011). Memory impairment involving delayed verbal and visual recall is furthermore documented to affect some individuals who hoard (Hartl et al., 2004), although the high levels of self-reported memory problems also reflect subjective overestimation of the importance in remembering information and a perceived lack of confidence in memory abilities (Frost & Hartl, 1996; Tolin, 2011b). The abilities to categorize is also noted to be compromised in people who hoard, who appear to treat each object as so unique that sorting is slowed and results in unnecessarily specific categories when fewer would suffice (Grisham et al., 2010; Wincze et al., 2007). Indecisiveness compounds difficulties with organization for many people who hoard and may be a core feature of this disorder (Frost & Gross, 1993; Pertusa et al., 2010; Samuels et al., 2002). Correspondingly, training in organizing, decision-making, and effective categorization skills is an important component of hoarding interventions and has been included in several toolkit skill development worksheets (Box 3).

Box 3

Box 3

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Hoarding: The Home Service Provider Experience

Even seasoned community health professionals can experience strong reactions when entering the home of someone who hoards, and frequently describe feelings of anxiety in light of the serious and pernicious safety concerns (Bratiotis et al., 2011; Tolin, 2011b; Toronto Hoarding Coalition, personal communication, November 17, 2010). Compounding the concerns about the cluttered and chaotic conditions of the home, clinicians routinely report frustration when working with people who hoard, and can feel challenged by the slow rate of progress, high treatment drop-out rate, and limited client engagement characteristic of the therapeutic process (Frost et al., 2010; Tolin, 2011b).

Individuals who hoard commonly resist attempts at intervention, a phenomenon that is likely associated with the “ego-syntonic” nature of the disorder—that is, hoarding behaviors are largely in keeping with an individual's worldview (Pertusa et al., 2010; Steketee & Frost, 2003). This means that the drive to acquire or retain each belonging typically has an accompanying rationale (“I could use it; it reminds me of someone I love; throwing this out would be wasteful,” etc.) that is fully believable to the individual (Black et al., 1998; Frost et al., 2000) and accounts for the pleasurable feelings experienced when acquiring or admiring belongings and the distress that accompanies discarding. Studies consistently report low levels of insight into the severity of hoarding behaviors by the individual who hoards (De Berardis et al., 2005; Frost et al., 1996; Ravi Kishore et al., 2004; Samuels et al., 2007; Tolin et al., 2001), even if these behaviors create cluttered conditions that are distressing (ego-dystonic) to the individual, impair functioning, and/or cause substantial stress for family members and other caregivers (Kellet, 2007). This highlights the importance of assessing an individual's insight and readiness for change and to tailor intervention strategies accordingly. Accordingly, the worksheets within the toolkit were organized by their utility for clients at differing stages of change, and emphasis is placed on selecting “the right tool for the job at hand” pending client insight, motivation, and interest in addressing their hoarding behaviors.

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Cognitive Behavioral Therapy

Best-practice hoarding treatment includes techniques adopted from motivational interviewing (Miller & Rollnick, 2002) to address this ambivalence around change and to promote client engagement in the therapeutic process (Steketee & Frost, 1997; Tolin et al., 2010). This type of tailored program of cognitive behavioral therapy (CBT) also incorporates elements of organizational skills training, exposure, and cognitive restructuring of hoarding-related beliefs (Steketee & Frost, 2007; Tolin et al., 2010). Using this approach, positive changes across the three dimensions of hoarding—acquisition, discarding, and clutter volume—have been empirically documented, although gains were measured and required approximately 7 to 12 months to effect (Tolin et al., 2010). Worksheets to challenge distorted cognitions and to develop graded exposure activities were included within the toolkit for use by clinicians seeking to support clients in cognitive restructuring and habituation to the anxiety of discarding or nonacquiring.

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Harm Reduction

Situations in which clients cannot access specialized CBT services, or who are not expressing interest in help, and are facing imminent safety risk require clinicians to have additional strategies within their intervention toolkit. Techniques aimed at reducing the problematic effects of hoarding behaviors, if not necessarily the behavior itself, are a familiar aim of the harm reduction approach (Marlatt & Tatarsky, 2010) and can provide a useful framework for treating hoarding in the community. Harm reduction relieves the focus on discarding, which can otherwise create a significant barrier to therapeutic engagement if a client is not ready to set this goal or even consider it as a distant possibility (Tompkins & Hartl, 2009). Premature or overemphasis on the clearing out of a home, often effected as an “extreme clean,” can create distrust, resentment, and resistance within the therapeutic relationship and actually exacerbate hoarding symptoms (Steketee et al., 2001), perhaps as it is experienced by the individual as a personal violation and significantly stressful event. Harm reduction, with its focus on organizing or discarding only that which is necessary to maintain the individuals in their home with a reasonable level of safety and comfort (Lorig, 2001; Tompkins, 2011), is the approach most frequently employed by the hoarding program clinicians when safety and eviction-prevention are the priorities.

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Home Safety

The safety of an individual who hoards, and others in their immediate locale, can be significantly compromised in situations of extreme clutter (Frost, Steketee, & Williams 2000; Frost, Steketee, Williams, & Warren, 2000; Lucini et al., 2009). The organization employs a four-step approach to guide clinicians in their response to health and safety concerns (Table 1), which promotes targeted care planning in keeping with the harm reduction and a self-management goal-setting framework more familiar to other chronic disease management programs (Chater & Levitt, 2009; Lorig, 2001).

Table 1

Table 1

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Help, My Client Hoards! The Community Clutter and Hoarding Toolkit

The organization serves over 60,000 clients each year within a defined public home care system. The development of the toolkit was catalyzed by the frequency with which the organization's frontline healthcare providers encountered safety concerns with hoarding, often within the context of referrals for nonhoarding healthcare needs. These home care workers were faced with the challenge of recognizing the significance of the safety issues, without ready access to the knowledge or tools to effectively intervene, and within a time-limited service model of managed care in public home care. Concerned healthcare practitioners were repeatedly asking: “How do I help with little time and without in-depth expertise in hoarding or even mental health?”

This community organization responded by assembling a team of clinicians to review best-practice literature and translate this knowledge into a tool that service providers from varied backgrounds could readily apply in their community practices. The resultant “Community Clutter and Hoarding Toolkit” was disseminated within the organization, and eventually shared with other community agencies to promote a coordinated, interdisciplinary response among human services workers including health professionals, case managers, first responders, legal aid workers, landlords, senior services, mental health specialists, professional organizers, and others.

The toolkit and accompanying training workshops have served as a vehicle to build capacity within the community health services system, maximizing available funding, and existing human resources for what can often be a lengthy and costly situation to address (Frost, Steketee, & Williams 2000; Frost, Steketee, Williams, & Warren, 2000; Yosef et al., 2009).

The hoarding toolkit is a compilation of worksheets and educational materials designed for use by clients, professionals, and lay persons alike to provide practical, research-based psychoeducation and skill-building resources. It is assembled so that service providers can select the most appropriate worksheets for the specific situations they encounter, offering the flexibility and breadth of resource required to adequately address the range and needs arising in situations of extreme clutter. Box 4 provides a case illustration of how the tools within the kit can be applied within a time-limited, harm reduction framework.

Box 4

Box 4

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Conclusion

Hoarding can be a challenging disorder for those who experience its characteristic difficulty with discarding possessions, as well as those who are seeking to assist in situations of excess clutter and unsafe conditions. Acquiring tools specific to hoarding is essential for client and clinician alike when developing effective care plans. The Community Clutter and Hoarding Toolkit has been one organization's response to support the skill sets of community healthcare providers, and has led to the application of a harm reduction focus when working the frontlines of hoarding interventions.

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