Here: a review of prevalence, impact, etiology and pathophysiology, differential diagnosis, and treatment.
Carol A. Mathews, MD
Figure. Hoarding prevalence by age
Table – Differential diagnosis for hoarding symptoms
Premiere Date: September 20, 2017
Expiration Date: March 20, 2019
This activity offers CE credits for:
1. Physicians (CME)
All other clinicians either will receive a CME Attendance Certificate or may choose any of the types of CE credit being offered.
To understand the prevalence of hoarding disorder throughout the life span and its impact on function and quality of life.
At the end of this CE activity, participants should be able to:
• Describe the progression of hoarding disorder throughout the life span
• Recognize comorbidities associated with hoarding disorder
• Describe the differential diagnosis for hoarding disorder
• Identify treatment options for hoarding disorder
This continuing medical education activity is intended for psychiatrists, psychologists, primary care physicians, physician assistants, nurse practitioners, and other health care professionals who seek to improve their care for patients with mental health disorders.
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Ryan McCarty has no disclosures to report.
Carol A. Mathews, MD, reports that she is the recipient of grant CE-1304-6000 from the Patient-Centered Outcomes Research Institute (unrelated to content in this article); she is on the speakers bureau and Scientific Advisory Board for Tourette Association of America; she has received support from the International Obsessive Compulsive Disorders Foundation; and she is on the Medical Advisory Board for Little People of America.
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Hoarding disorder (HD) is a behavioral syndrome that is defined in DSM-5 as persistent difficulty in discarding items, regardless of their actual value. This difficulty in discarding is due to a perceived need to save that is accompanied by distress associated with discarding. Over time, the progressive accumulation of clutter in living or work areas results in functional impairment and reduced quality of life, including associated health and safety risks.
Excessive acquisition of unneeded materials may also occur in some individuals, contributing to functional impairment not only through accumulation of clutter, but also, in some cases, through financial difficulties associated with excessive buying. Hoarded items can widely range in content, including, but not limited to, papers, clothing, tools, items with personal or sentimental value, food, trash, containers such as boxes and bags, and even animals.
HD is most prevalent in adults over age 50, although hoarding behaviors have been documented in individuals of all ages. In young children, both collecting and storing behaviors are common and developmentally normal; they increase linearly in frequency from age 2 to around age 6, when approximately 60% of children exhibit such behaviors (Figure).1 Hoarding behaviors reportedly decrease in frequency in typically developing children between ages 6 and 8. Although there are few true epidemiological studies of clinically assessed HD in children, population-based studies suggest that nearly 10% of children ages 6 to 17 have at least moderate levels of hoarding behaviors, while approximately 3% have high levels of hoarding.2-4
In typically developing children, it is important to differentiate possible pathological or problematic hoarding symptoms (such as persistent hoarding of trash or food) from age-appropriate behaviors-a child who has problems discarding a collection of stuffed animals would not be considered hoarding. The rates of clinically significant hoarding behaviors in adolescents were examined in a population-based sample of 15-year-old twins. Paralleling DSM-5 criteria, clinically significant hoarding was described as at least moderately severe symptoms related to clutter, difficulty discarding, and associated distress or impairment. Results show a prevalence of approximately 2% (increasing to 3.7% when the clutter criterion was eliminated).2
These studies suggest that non-impairing hoarding, storing, and/or collecting behaviors may continue at stable, moderate rates (up to 10%) throughout childhood, while rates of clinically impairing hoarding behaviors that are analogous to HD approximate those seen in early adulthood (eg, 2% to 3%). Much higher rates of clinically impairing hoarding behaviors have been reported in children with obsessive-compulsive disorder (OCD) or high levels of OC symptoms, Prader-Willi syndrome, autism, intellectual or developmental disabilities, and learning disabilities, with rates as high as 50% in some samples.1,3,5-7
Retrospective studies suggest that the overall prevalence of HD in adults is between 2% and 6%, and the age of onset of hoarding symptoms for persons who meet DSM-5 criteria for HD is typically between age 11 and 15.8,9 HD rates appear to be relatively equal between the sexes, although there is some evidence that women demonstrate more evidence of excessive acquisition.8
The rate of HD in adults rises with increasing age, from 1% to 2% at age 20 to over 7% among individuals aged 70 and older. The greatest rates of increase are seen in those between the ages of 35 and 65 (see Figure).8 It is possible that at least some of the observed increase in prevalence throughout the life span reflects age-related environmental factors. For example, children and adolescents may be more likely to have their acquisition limited by parental involvement, thus minimizing the severity and impact of hoarding behaviors. Adults may have more control over their environments and therefore fewer external limitations on the accumulation of clutter. Similarly, external controls imposed by roommates, spouses, or other family members on the accumulation of clutter may be strongest in early adulthood and decrease in later adulthood, further contributing to increasing clinical impairment in older adults.
Impact on function and quality of life
Individuals with HD typically experience significant impairment in several aspects of daily functioning, including psychosocial, occupational, and family domains. The consequences of hoarding behaviors include social isolation, divorce, separation or alienation from family members and friends, risk of eviction and homelessness, removal of children or elders from the household by government officials, risk of death and injury due to clutter, structural instability and fire, health risks due to unsanitary living environments, and financial stressors due to excessive acquisition.
HD is associated with high levels of medical disability and work impairment (exceeding that for individuals with anxiety, mood, and substance abuse disorders), even after controlling for age and additional co-occurring psychiatric symptoms such as anxiety and depression. Individuals with HD are more likely to have lower incomes than their age-matched peers; up to 40% of individuals with HD live in poverty, and the use of mental health and other services by those with HD is 5 times higher than that of the general population.10,11 In the elderly, self-neglect related to pathological hoarding can be a significant contributor to morbidity and mortality.12
Etiology and pathophysiology
Similar to the vast majority of neuropsychiatric disorders, HD appears to arise from a combination of biological and environmental factors. Approximately half of individuals with HD have a first-degree relative who also has problematic hoarding symptoms. Although the genetic architecture and underpinnings of HD are not known-in part because very large sample sizes (in the thousands to tens of thousands) are required-data from twin and family studies clearly indicate that susceptibility to HD is familial, with approximately 50% of the variance accounted for by genetic susceptibility factors.2,13
Twin studies also suggest that approximately half of the genetic risk for HD is shared with OCD and other obsessive compulsive–related disorders (OCRDs), while half is unique to HD.14 However, the genetic architecture of HD is likely to be complex, with hundreds of genetic variants contributing to HD susceptibility. To date, no clear genetic risk factors for HD have been identified.
Environmental contributors to HD have been even less well elucidated. While some studies suggest that individuals with HD have elevated rates of stressful and traumatic life events, others indicate that once age is controlled for, the rates of trauma are not significantly elevated in HD.15 While new-onset hoarding behaviors have been reported in individuals with head trauma or brain lesions, primarily in the inferior prefrontal cortices, these cases account for only a small proportion of individuals with problematic hoarding behaviors.1,15
Neurodegenerative diseases such as dementia and Parkinson disease should nevertheless be ruled out in older adults who present with hoarding, particularly those with new-onset symptoms, as up to a fifth of individuals aged 65 and older with HD have co-occurring dementia.15 Hoarding and collecting behaviors are common in individuals with underlying neurodegenerative disorders. However, no longitudinal studies have evaluated the time course and causal links between hoarding symptoms and neurodegenerative disorders.
Clinically, hoarding behaviors in dementia differ from those seen in HD and may represent patients’ neurocognitive inability to discard and organize things, without attaching meaning to those objects. Hoarding behaviors in those with HD are more likely to be related to maladaptive beliefs about keeping versus discarding materials and/or strong emotional attachments to possessions.
Although they do not represent a substantial portion of the environmental risk for HD, the early work on brain lesions and hoarding behaviors has been useful in helping to elucidate the pathophysiology of HD. Electrophysiological and neuroimaging studies, although still relatively sparse, reinforce the observations from the early lesion studies and implicate brain regions involved in executive function, error processing, and response conflict, particularly prefrontal regions and the anterior cingulate cortex. Clinically, individuals with HD complain of difficulties with memory, decision-making, categorization, and symptoms consistent with the inattentive subtype of ADHD, which provides indirect support for the role of deficits in executive functioning.
Neuropsychological studies of hoarding and HD have varied greatly in methodology and have suffered from small sample sizes, but as a whole suggest that individuals with clinically significant hoarding have subtle but consistent deficits in executive function, including planning/problem-solving, decision-making, visual learning and memory, sustained attention, and categorization, as well as abnormalities in error processing.16 The rapidly increasing rates of HD among individuals aged 40 and older suggest that age-related factors, perhaps age-related cognitive changes, may play a role in the progression of subclinical hoarding symptoms into clinically impairing HD.
Although only recently systematically assessed, the concept that deficits in executive function play a role in the development and maintenance of hoarding behaviors in fact predates the formalization of HD as a discrete neuropsychiatric disorder. The cognitive-behavioral model of hoarding, originally put forward in 1996 and summarized by Wheaton,17 posits that information-processing deficits-either caused or influenced by distal vulnerability factors (both genetic and environmental)-interact with maladaptive beliefs about possessions (eg, feelings of hyper-responsibility for, need for control over, emotional attachment to possessions) to reinforce behaviors that minimize feelings of guilt or anxiety associated with discarding (eg, hoarding or saving behaviors). This model, while not yet experimentally validated, nevertheless contains many of the core components observed by clinicians and researchers among individuals with HD.
Differential diagnosis and co-occurring conditions
Clinically, HD must be distinguished from other neuropsychiatric disorders that may manifest with prominent hoarding behaviors (Table). For example, individuals with neurodevelopmental disorders such as autism spectrum disorders or intellectual disability may exhibit difficulty with discarding objects because of extreme attachment to these objects, or may collect excessive numbers of unusual or seemingly worthless objects. Individuals with schizophrenia and other psychotic disorders may hoard items as a result of their delusions and/or negative symptoms (for example, acquiring large amounts of aluminum and other types of sheet metal to prevent being spied upon at home). Accumulation of excessive clutter due to low motivation or energy caused by depressive disorders or physical disability that results in the inability to remove clutter should also be carefully differentiated from HD, although depression is also highly comorbid with HD.
Following the onset of neurocognitive disorders such as frontotemporal dementia, Alzheimer dementia, and Parkinson disease, later-onset hoarding behaviors can appear gradually and may occur simultaneously with self-neglect. Several medical conditions are also linked with hoarding symptoms, such as brain injury, cerebrovascular disease, and Prader-Willi syndrome.
While there is etiological overlap between the compulsive hoarding symptoms that can occur in OCD and the hoarding symptoms typical of HD, there are several key distinctions between the 2, and HD occurs independently from OCD in 60% to 80% of cases. First, hoarding symptoms in OCD often occur as a direct consequence of other OCD symptoms (eg, storing of potentially contaminated items to prevent infection or collecting objects that may contain bodily fluids such as saliva or blood to prevent harm). Second, individuals with OCD are more likely to be distressed by and have insight into their hoarding symptoms, while individuals with HD have more variable insight into their symptoms, are distressed by the act or thought of discarding items rather than by the act of collecting or saving them, and do not typically have rituals associated with saving items. Finally, the emotional attachment to objects that is often seen in individuals with HD is rare among individuals with OCD who have compulsive hoarding.
While HD can occur independently of other disorders, up to 75% of individuals with HD have at least one other co-occurring psychiatric condition. The most commonly occurring comorbidity is MDD-up to 50% of individuals with HD will have at least one major depressive episode during their lifetime. Anxiety disorders are also common in individuals with HD (25% to 50%), as are other impulse control disorders such as compulsive buying or kleptomania. OCD occurs in approximately 20% of individuals with HD, despite the early conceptualization of compulsive or pathological hoarding symptoms as a subtype or component of OCD.18 ADHD, particularly the inattentive subtype, has also been reported to be elevated among individuals with HD, although determination of the true prevalence of ADHD is not yet clear, as studies have been complicated by retrospective recall bias and other methodological factors.
Treatment of HD
In part because of the early conceptualizations that categorized pathological hoarding as a subtype of OCD, most of the treatment approaches for HD are derived from those originally developed for OCD, with modifications aimed at targeting specific components of HD symptoms.
Cognitive-behavioral therapy (CBT) is considered the first-line treatment for HD and focuses on:
• Confronting maladaptive belief patterns and behaviors related to hoarding
• Managing emotional distress related to discarding
• Exposures aimed at actively discarding objects and avoiding acquisition of new objects
• In some cases, addressing problems related to information processing
Although substantial improvements in self-reported hoarding symptom severity can be seen with these approaches, improvement in hoarding-related functional impairment is less robust. CBT can be delivered using various modalities (individual vs group) and by various types of providers (mental health professionals, peer group leader), and there do not appear to be significant differences in outcomes between these options.
CBT-based approaches provide approximately 25% improvement from baseline. However, individuals who have undergone successful treatment for HD may continue to have significant symptoms. For many individuals, particularly those with poor insight or very severe symptoms, the goal is harm reduction rather than remission. Current efforts are focused on improving these outcomes, and the addition of components that target executive dysfunction, impaired insight, shame, and/or inconsistent motivation may hold promise.
Up to 50% of individuals with HD lack insight or have impaired insight into their illness.19 Rather than recognizing the source of the problem as difficulty discarding and/or excessive acquisition, the blame may be shifted to external causes such as lack of space. In addition, many individuals, although recognizing that their symptoms bother others, may not themselves find their symptoms to be uncomfortable or problematic (eg, they are not ego-dystonic).
Lack of insight and lack of discomfort/recognition of hoarding-associated problems can create barriers to both treatment seeking and treatment response. Family-based approaches-in which family members receive psychoeducation and training aimed at reducing accommodation of hoarding behaviors and selectively reinforcing discarding or other positive behaviors-may be a useful component of treatment for individuals with poor insight or inadequate treatment response, as well as for children and adolescents with HD.
Treatment designs that incorporate cognitive training directly address executive dysfunction and have been particularly successful in older adults with HD.20 The use of mindfulness or compassion-focused therapies to directly address emotional attachment to possessions and shame associated with hoarding symptoms has also been proposed. Such models, which can also incorporate motivational interviewing or other approaches that have been successful in the treatment of substance use disorders, have not yet been studied; thus, the efficacy of these approaches, while promising, has not been established.
Pharmacotherapy for HD has been even less well studied: the majority of the available data are based on studies that investigated the treatment response of hoarding symptoms in OCD. Interpretation of these studies has also been limited by the lack of randomized, double-blind, controlled trials. However, a recent meta-analysis of 7 studies that investigated pharmacological treatment of hoarding found that over half of participants treated responded to medications.21 This study, which included case series along with open-label trials, also suggests that although sample sizes have been small and methodologies limited, SSRIs and/or SNRIs may be effective for treating HD-at least for some individuals. Other agents, such as neuroleptics, cognitive enhancers, and stimulants, may also be effective, but sufficient data on these agents have not yet been published.
Despite being highly prevalent, particularly among older adults, HD is still underrecognized and inadequately treated in many, if not most, affected individuals. HD has a substantial impact on individual and family well-being and represents a significant public health burden. However, with the advent of DSM-5, awareness of and interest in this common disorder are increasing. Research efforts into the etiology and pathophysiology of HD are promising and continue to expand at a rapid pace. First-line treatment for HD is CBT, modified for hoarding symptoms, although pharmacotherapy may also have a role.
PLEASE NOTE THAT THE POST-TEST IS AVAILABLE ONLINE ONLY ON THE 20TH OF THE MONTH OF ACTIVITY ISSUE AND FOR 18 MONTHS AFTER.
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Mr. McCarty is Clinical Research Assistant, and Dr. Mathews is Professor, Department of Psychiatry, University of Florida, Gainesville, FL.
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