Family burden of compulsive hoarding: Results of an internet survey

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Abstract

Compulsive hoarding, the acquisition of and failure to discard large numbers of possessions, is associated with substantial health risk, impairment in functioning, and economic burden. Despite clear indications that hoarding has a detrimental effect on people living with or near someone with a hoarding problem, no empirical research has examined these harmful effects. The aim of the present study was to examine the burden of hoarding on family members. Six hundred sixty-five family informants who reported having a family member or friend with hoarding behaviors completed an internet-based survey. Living with an individual who hoards during childhood was associated with elevated reports of childhood distress and family strain. Family members reported high levels of patient rejection attitudes, suggesting high levels of family frustration and hostility. Rejecting attitudes were predicted by severity of hoarding symptoms, the individual's perceived lack of insight into the behavior, and having lived in a cluttered environment during childhood. These results suggest that compulsive hoarding adversely impacts not only the hoarding individual, but also those living with them.

Introduction

Compulsive hoarding is characterized by (a) the acquisition of, and failure to discard, a large number of possessions, (b) clutter that precludes activities for which living spaces were designed, and (c) significant distress or impairment in functioning caused by the hoarding (Frost & Hartl, 1996). Hoarding has frequently been considered a subtype of obsessive–compulsive disorder (OCD). However, studies have indicated that hoarding symptoms are distinct from more “traditional” OCD symptoms such as washing, checking, etc. (Calamari et al., 2004), and that hoarding might not be associated with a particularly high rate of OCD compared with other anxiety and mood disorders (Frost, Steketee, Tolin, & Brown, 2006; Meunier, Tolin, Frost, Steketee, & Brady, 2006; Wu & Watson, 2005). Compared with most variants of OCD, compulsive hoarding is associated with a particularly chronic course (Pinto et al., 2007) and poor prognosis for standard OCD treatments using medication and exposure with response prevention (Abramowitz, Franklin, Schwartz, & Furr, 2003; Mataix-Cols, Marks, Greist, Kobak, & Baer, 2002; Steketee & Frost, 2003), suggesting that compulsive hoarding and OCD may involve different biological, cognitive, or behavioral mechanisms.

An additional difference between OCD and hoarding is the degree of awareness and insight exhibited by individuals with these conditions. Although OCD patients display a range of insight into the irrational nature of their obsessions and compulsions, most exhibit at least some insight (Foa et al., 1995). By contrast, individuals with compulsive hoarding problems commonly display a striking lack of awareness of the severity of their behavior, often resisting intervention attempts and defensively rationalizing their acquiring and saving (Greenberg, 1987; Steketee & Frost, 2003). In a large sample of family members of individuals with reported hoarding problems, more than half (53%) described the person who hoards as either having “poor insight” or “lacks insight/delusional” (Fitch, Tolin, Frost, & Steketee, 2007). Similarly, a survey of social service workers with elderly hoarding clients revealed that the majority (73%) described their client as having severely impaired insight (Steketee, Frost, & Kim, 2001). A recent study of children and adolescents with OCD revealed that those with hoarding symptoms were rated as having worse insight than were those with other OCD symptoms (Storch et al., 2007).

A growing body of evidence points to the substantial social burden imposed by hoarding. A survey of health department officials indicated that hoarding was judged to pose a substantial health risk and in 6% of reported cases, hoarding was thought to contribute directly to the individual's death in a house fire. One small town health department spent most of their budget ($16,000) clearing out one house, only to face the same problem 18 months later (Frost, Steketee, & Williams, 2000). Several cities in North America have developed inter-agency task forces to help them deal with individuals who hoard (Frost & Steketee, 2003). A large sample of individuals with self-identified compulsive hoarding reported a mean 7.0 psychiatric work impairment days per month (Tolin, Frost, Steketee, Gray, & Fitch, in press), equivalent to that reported by National Comorbidity Survey (Kessler et al., 1994) participants with bipolar and psychotic disorders, and significantly greater than that reported by participants with anxiety, depressive, and substance use disorders. Eight percent reported that they had been evicted or threatened with eviction due to hoarding, and .1% reported having had a child or elder removed from the home (Tolin, Frost, Steketee et al., in press).

In addition to the ill-effects of hoarding on the individual, public health officers in the Frost et al. (2000) study rated hoarding as a serious threat to the people living with or near the sufferer. Frost and Gross (1993) reported that two-thirds of their hoarding participants stated their hoarding constituted a problem for family members. Furthermore, a number of studies have found lower rates of marriage and higher rates of divorce among hoarding participants (Steketee & Frost, 2003), suggesting problems in domestic relationships. To date, however, there has been no investigation of the burden of hoarding on family or friends. The focus of the present study is the impact of hoarding on family members and friends. Anecdotally, the present authors receive inquiries from frustrated family members approximately twice as often as they do from individuals with compulsive hoarding problems. Within samples of OCD patients, family members frequently report accommodating the individual's obsessive fears or compulsive behaviors, leading to increased family distress and frustration toward the individual (Amir et al., 2000; Calvocoressi et al., 1995). The majority of family members report that the individual's OCD symptoms cause disruptions in their personal lives, including social, marital, and recreational impairment (Cooper, 1996).

We sampled a large number of family members and friends of individuals reported to have compulsive hoarding problems, with the prediction that these individuals (particularly those whose loved ones meet strict criteria for hoarding) would report high levels of distress, family impairment, and patient rejection. To obtain a large sample, data were collected over the internet. The internet is increasingly being used for mental health research (Skitka & Sargis, 2006), and several studies indicate that web-based data collection results in greater sample diversity, generalizes across presentation formats, and findings are consistent with data collected using more traditional means (see Gosling, Vazire, Srivastava, & John, 2004, for a review). Equivalence of internet and paper-and-pencil measurement has been established in clinical disorders, including anxiety (Carlbring et al., 2007) and OCD (Coles, Cook, & Blake, 2007); in these studies, participants completed the same measures in paper-and-pencil and internet formats, and results did not differ. It was predicted that living with an individual who hoards during childhood would be associated with high levels of childhood distress and family discord, and that these findings would be particularly pronounced among individuals who lived in a cluttered environment during early childhood. Arguments about hoarding were predicted to be common, particularly among spouses. We further predicted that relatives of hoarders would endorse high levels of patient rejection attitudes, and that degree of patient rejection would be associated with hoarding severity, living in a cluttered environment during early childhood, and the hoarder's level of insight.

Section snippets

Participants

The present sample was recruited from a database of over 8000 individuals who contacted the researchers over the past 3 years for information about compulsive hoarding after several national media appearances. Potential participants were sent an e-mail invitation to participate in the study, and were also allowed to forward the invitation to others with similar concerns. Data collection occurred from November 14, 2006 to January 15, 2007. Consistent with current recommendations (Kraut et al.,

Sample description

Descriptive information about the family informant sample, as well as the hoarding family members they described, is found in Table 1. Of the 665 participants who completed the HRS-SR about the hoarding family member, 85.9% (n=571) described a hoarding family member who appeared to meet full criteria for compulsive hoarding. Not surprisingly, HRS-SR and CIR scores for those meeting full criteria were significantly higher (denoting severe hoarding) than were scores for those not meeting full

Discussion

The present study is the first of which we are aware to examine the burden of compulsive hoarding on family members. Living in a severely cluttered environment during early childhood (regardless of whether formal diagnostic criteria are met) is associated with elevated rates of childhood distress, including less happiness, more difficulty making friends, reduced social contact in the home, increased intra-familial strain, and embarrassment about the condition of the home. Whether living in a

Acknowledgments

This study was funded by National Institute of Mental Health Grants R01 MH074934 (Tolin), R01 MH068008 and MH068007 (Frost & Steketee), and R21 MH068539 (Steketee). Oxford University Press supplied copies of a book to be used in a raffle for participants. Results of this study were presented at the Annual Meeting of the Association of Behavioral and Cognitive Therapies, November 2007, Philadelphia. The authors thank Dr. Nicholas Maltby for his technical assistance.

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