Henry ND, Ernst EJ. Hoarding by elderly long-term care residents. Annals of Long-Term Care: Clinical Care and Aging. 2013;21(1):22-26.
There has been great interest in the psychology behind hoarding behavior in popular culture recently; however, little is known about the prevalence of this potentially destructive behavior among elders residing in long-term care (LTC) facilities or how best to manage it. Although LTC facilities have provided care to elderly persons with such behaviors for decades, they have done so without the support and benefit of evidence-based research. The dearth of clinical knowledge on hoarding in this specific patient population, who tend to be more clinically complex than younger hoarders, presents a unique and pressing challenge to healthcare providers. The authors reviewed the current body of available literature and identified areas in which further studies are needed.
Key words: Hoarding by elders, hoarding of possessions, compulsive hoarding, long-term care, nursing home, obsessive-compulsive disorder.
Compulsive hoarding impacts between 700,000 and 1.4 million Americans,1 many of whom are elders. Although hoarding is not yet considered a neuropsychiatric condition, as it has no official diagnostic criteria, it is a debilitating behavioral symptom that can exist with or stem from many psychological disorders, such as obsessive-compulsive disorder (OCD), depression, and anxiety disorder. Until recently, hoarding remained a little known problem, but reality television shows and movies have shed light on it, garnering public interest; however, many of the individuals featured on these shows have been younger adults. Little attention has focused on compulsive hoarding by elderly individuals, particularly those residing in long-term care (LTC) facilities. However, this behavior is a potential source of numerous problems in this care setting, including regulatory compliance issues, safety concerns regarding residents and staff, and residents’ overall quality of life and well-being.
Accordingly, staff caregivers may become easily frustrated when encountering sequelae related to residents who are compulsive hoarders. Therefore, it is important for LTC nurses, who may be less familiar with this behavioral symptom than with those more commonly seen in nursing homes (eg, wandering, agitation, or hallucinations from a condition like dementia or schizophrenia), to understand the many facets of compulsive hoarding behavior, how to best assess the behavior, and how to appropriately intervene. To shed light on these issues, we conducted a literature review to identify available clinical data on compulsive hoarding of possessions by elderly persons residing in LTC facilities and other institutional settings. Our search revealed that few data are available, indicating a dire need for research, universally accepted diagnostic criteria, and evidence-based recommendations for assessment and treatment.
Our literature review included searches of the CINAHL, PubMed/MEDLINE, OVID, ProQuest, and PsychLit databases using the following key words: hoarding, geriatric, gerontology, elderly, nursing, nursing homes, long-term care, and psychiatric nursing. Journal articles included in our review were published between 1980 and 2010 and were related to LTC residents who exhibited hoarding behaviors and were young elders (65-75 years) or elders (>75 years). Although the topic of interest was specific to hoarding of possessions by elderly persons in LTC facilities, the inclusion was expanded to include hoarding in multiple institutional settings (ie, hospitals, assisted living, board and care facilities, and other types of residential care facilities) and individuals in such settings who were middle-aged (45-65 years). Our review excluded journal articles that focused on persons who hoard animals, food, or medications. It also excluded articles that were specific to persons younger than 45 years or that involved community-dwelling or self-sufficient adults. References from before 1980 were examined to provide a historical account of the original literature written about this topic. Seminal work that served as a foundation for research is also discussed in this review.
Twenty-five articles met our search criteria. In reviewing these articles, we found that there are very few data in the medical literature to help inform and guide care for elderly LTC residents who compulsively hoard possessions. With the exception of a study from 1981,2 few current studies focus specifically on this issue. We found mostly case reports and review articles, with some of them focusing on persons receiving home care. In addition, despite nurses being the primary caregivers for persons residing in LTC settings, they authored only a few articles on this topic.
Definition and Identification of Hoarding
Our literature review revealed that numerous terms have been used to refer to hoarding, such as compulsive hoarding, pathological collecting, and hoarding syndrome. Presently, hoarding is not officially recognized in the Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV) as a clinically distinct disorder3; therefore, its definition varies widely in the literature and identification of this behavior has been largely based on clinical observations. In 1995, Frost and colleagues4 defined hoarding as “the acquisition of and failure to discard large numbers of possessions which appear to be useless or of limited value,” and in 1996, Frost and Hartl5 delineated the first diagnostic clinical criteria and systematic definition for compulsive hoarding. They identified characteristics of clinically significant compulsive hoarding to include the following: the acquisition of, and failure to discard, a large number of possessions that appear to be useless or of limited value; living spaces sufficiently cluttered so as to preclude activities for which those spaces were designed; and significant distress or impairment in functioning caused by the hoarding, often affecting others in the environment. In agreement with these findings, many subsequent studies have found that hallmarks of hoarding include, but are not limited to, excessive acquisition of things, indecisiveness, perfectionism, procrastination, disorganization, and avoidance.5-7 Additional characteristics that are prominent among hoarders include the frequent tendency to be late for appointments and the use of language that is circumstantial or overinclusive.6
Aspects of hoarding frequently exist with other neuropsychiatric disorders, including schizophrenia, dementia, autism, and mental impairment.7 Compulsive hoarding has been linked to OCD and obsessive-compulsive personality disorder (OCPD). The DSM-IV lists the inability to discard worthless items as a symptom of OCPD, but evidence in the literature is conflicted about whether hoarding is a subtype of OCD, simply a symptom of OCD, or a clinically and psychobiologically distinct disorder.3 It has been estimated that 18% to 42% of individuals with OCD exhibit symptoms related to saving and hoarding7-9; however, a review by Saxena6 in 2008 found that many compulsive hoarders have no other symptoms of OCD.
Hoarding does not appear to be a cultural issue, as it has been identified in phenomenological and epidemiological studies of OCD around the world.6,9-11 In a review article, Carlock,12 a nurse, summarized the signs and symptoms of compulsive hoarding and cited the DSM-IV diagnostic criteria for OCD, which require that the patient’s symptoms cause visible distress and interfere significantly with daily and social functioning. According to Carlock, with compulsive hoarding, patients wrongly believe that items that should be discarded may, however unlikely, one day be needed, should be fixed if broken, or simply should not be wasted. These feelings tend to result in a collection of clutter so overwhelming that the individual’s daily and social functions are impaired.
Recent neuroimaging and neuropsychological studies have helped to identify a genetically discrete, strongly heritable phenotype attributed to compulsive hoarding.6,10 Neurobiologic dysfunction affecting decision-making, attention, and emotional regulation have been attributed to ventral and medial prefrontal cortical dysfunction.6 These and other emerging studies suggest that based on pathophysiologic, genetic, and taxonometric data, hoarding may be classified as a separate disorder with unique DSM diagnostic criteria. The fifth edition of the DSM is scheduled for release in May 2013, but it is not yet known whether diagnostic criteria for hoarding will be included since the manual is still undergoing revision.
Prevalence of Hoarding by Elders and LTC Residents
Without accepted diagnostic criteria for hoarding, the prevalence of this behavior in elderly individuals or in LTC residents is not well known, indicating that large-scale studies should be conducted within these specific patient populations. In a 1981 Canadian study of hoarding by elders, Rudnick2 noted that hoarding is not an uncommon trait in institutionalized elderly persons; based on nurses’ reports, the incidence of hoarding was estimated at 11% to 13% in standard and chronic nursing care settings, and 53% in special care setting (ie, patients with dementia or other cognitive disabilities).
In 1993, Hogstel13 became the first nurse to publish a hoarding behavior review article in the nursing literature. While providing consultation to psychiatric hospitals, Hogstel performed nursing assessments of geriatric patients referred by nursing home staff, families, neighbors, or legal guardians concerned that hoarding behaviors interfered with care. Most patients she evaluated had no acute medical problems and were found to be alert, ambulatory, and openly communicative. The topic of hoarding was easily broached during interviews and revealed common themes, such as loneliness and having few close family members or visitors. Patients were aware of having a hoarding “habit” but had no insight as to how hoarding related to abnormal behavior. Hogstel’s observations led to a number of questions: Why do older women hoard more than men? At what point are hoarding behaviors pathological and require interventions? When does the hoarding behavior interfere with normal everyday functioning? We still do not have evidence-based answers to these complex questions, despite two decades having passed.
In a 1998 study by Hwang and colleagues,14 approximately 23% of 133 patients in a geropsychiatric ward exhibited hoarding behaviors, suggesting that hoarding is a common symptom in persons with dementia. Kim and associates15 reported a 40% complaint rate with health departments for hoarding issues, and most studies found the individuals involved were significantly older. This might be because hoarding has been shown to increase in severity with each decade of life.16 In 2002, Saxena and colleagues17 reported that compulsive hoarding syndrome is associated with older age, anxiety, impaired coping and adaptation, and poor personal insight into the condition.
Most recently, Marx and Cohen-Mansfield18 investigated hoarding by nursing home residents and senior day care participants. The authors conducted interviews with family and staff caregivers and reviewed medical charts, patient histories, and physical examination findings reported by the treating healthcare provider. These sources of data were reviewed for documentation of hoarding behaviors, demographic and health information, level of cognitive functioning, ability to perform activities of daily living (ADLs), signs of depression, ability to function socially, agitated behaviors, and evidence of previous stressful life experiences. Results of this research showed that 15% of the nursing home residents and 25% of the senior day care participants exhibited hoarding behaviors with a frequency of several times a week. Marx and Cohen-Mansfield concluded that in nursing home residents, significant associations were observed between hoarding behaviors and a larger appetite, taking fewer medications, higher social functioning, minimal ADL impairment by comparison with others, and fewer manifestations of physically nonaggressive, agitated behaviors.18
Psychology of Hoarding: The Meaning of Possessions
Although recent research has investigated the pathophysiology and neuropathology of hoarding, scant current research has examined hoarding as it relates to elderly individuals’ ability to function in an LTC nursing home setting. Thus, our examination of research on hoarding was expanded to include research on the meaning of possessions and the psychology behind hoarding behavior.
In 1978, Furby19 provided early research into the meaning of possessions, establishing that the saving behaviors of hoarders were motivated by perceived use of a possession and emotional attachment to a possession. Furby linked hoarding of possessions to emotional “sentimental saving.” A subsequent study by Frost and Gross20 in 1993 provided further insight into the nature of hoarding behavior. It did not establish a significant relationship between hoarding and OCD, but did show similar characteristics between persons exhibiting hoarding behaviors and those with OCD. Frost and Gross described both groups as being perfectionists, indecisive, and fearful of making a wrong choice or mistake when deciding to keep or throw away an item. These individuals possessed characteristics integral to the development and maintenance of the hoarding behavior; hoarding enabled them to establish a perception of control and avoid the emotional discomfort associated with “wrongly” discarding an item.
In their 1995 study, Frost and colleagues4 examined the usage pattern of hoarded objects and the associated emotional attachment to the objects. They postulated that items seldom or never used were retained to exert control over the possessions, a trait that was not established in the earlier Frost and Gross study.20 They hypothesized that hoarding is associated with a great sense of responsibility for being prepared and for ensuring the well-being of a possession. The hoarders seemed to have a heightened sense of responsibility for being prepared to meet a future need (ie, each possession is seen as having functional utility under certain circumstances; while the utility is not pertinent to the moment, it may be in the future). If a solution, embodied in the object, is discarded and a problem occurs, harm has been done. It is this harm that the compulsive hoarder seeks to avoid. The nature and severity of this harm are vague and unspecified, and hoarders cannot accurately specify what the harmful consequences may be, other than having to get back something that had been discarded. Hoarders also seek to prevent harm to the possession itself, as though it has human-like qualities and therefore must be protected. This behavior is consistent with the observation that hoarders tend to view their possessions as extensions of themselves.10,21
In 2001, a series of telephone interviews with elder care services agencies conducted by Kim and colleagues15 revealed that few of elderly clients with hoarding behavior showed deficits in cognitive functioning, according to provider observations. The findings suggested that hoarding behaviors frequently occur among older adults in the absence of dementia and that hoarding is not specifically a function of dementia. Kim and colleagues also found that hoarders tended to live alone, be women, and unmarried.
A 2008 study by Anderson and colleagues22 used an ethnographic research design as an exploratory method to gain a deeper understanding of emotional issues that underpin hoarding behaviors by older people. Ethnography is a form of qualitative research that interweaves looking, listening, and asking.23 The Anderson study was described as “focused ethnography” because it was of a small scale and had as a focal point a distinct group of people to be studied.24 The sample consisted of eight older adults who received home care and exhibited compulsive hoarding behaviors. Participants had a deeply rooted need to acquire and hold onto excessive possessions; acquisition was noted in the form of stockpiling, impulsive buying, and actively seeking out free things from friends and neighbors. Descriptive, detailed, computer-generated field notes were recorded after each visit had concluded and chronicled what the researcher had seen and heard. The data revealed that the act of acquiring possessions was reassuring for older hoarders; stockpiled possessions relieved anxiety and helped hoarders feel connected, socially engaged, needed by others, proud, productive, and in control. The actual act of acquiring possessions gave hoarders a sense of purpose and meaning to their lives. The findings from this study suggest older hoarders’ judgments and tolerance levels are different from those of the majority of older people. As such, they perceive order within their disordered environment, and they do not perceive that they live amid clutter, garbage, and filth.24
Issues With Hoarding Behavior in LTC Facilities
If hoarding behaviors are not treated, costly medical and emergency department visits may be incurred. Anxiety related to hoarding activities may precipitate suicidal ideation or attempts.25 Additionally, hoarding may pose a grave threat to physical and emotional well-being as well as social functioning and quality of life.25 Hoarding presents physical health threats, including fire hazards, risk of falls, and unsanitary living conditions.26,27 These conditions affect not only the hoarder, but also those around him or her, including family, friends, and other persons.7
In nursing homes, residents have limited space for storing personal items and important legacy and family memorabilia. Compared with living spaces in apartments and single-dwelling homes, an LTC resident’s bedroom and living area are small (a few dozen square feet) and restricted. With regulatory requirements imposing strict guidelines for fire and safety codes and infection control, nursing home staff are challenged to balance requirements for a clean and organized living environment with residents’ needs. It is not always clear that a resident’s desire to retain possessions perceived as excessive is the underpinning of hoarding behavior. To highlight the dilemma for nursing home staff, Cermele and associates28 described an experimental case study conducted by Hartl and Frost29 that calculated square footage of clutter in relation to square footage of living space. The establishment of a clutter ratio allowed the researchers to demonstrate significant decreases in clutter in personal space and to compare clutter ratios for hoarders with expected disorganization of personal items for nonhoarders. This clutter ratio was used for research purposes and was not translated into a tool to be used by administrators, although it appears it would be of value to them. Future pilot studies to refine and/or examine how this tool could be used in practice would be beneficial.
It is no surprise that in an institutionalized setting, a hoarder’s activities may result in conflict with other residents, personnel, and visitors, and consequently result in administrative issues. This is especially true when the hoarding habit is associated with paranoia. Attempts to confront the situation can result in retaliatory accusations, building resentment and frustration toward the very people who are providing care.2
Treatment of Compulsive Hoarding
Treating hoarding poses a considerable challenge for a variety of reasons, including hoarders not recognizing that they have a problem and a paucity of studies on proper treatments, including in special patient populations, such as LTC residents. Treatments that have been used in the general population include medications, cognitive-behavioral therapy, education, social support, or a combination of these approaches.
The most common pharmacologic treatments that have been explored to treat hoarding are agents that are typically used to treat OCD. These include selective serotonin reuptake inhibitors (SSRIs), particularly paroxetine, as well as other drugs that affect serotonin, such as tricyclic antidepressants (eg, clomipramine).25 SSRIs tend to be preferred over other agents because of their low risk of side effects; however, as with any pharmaceutical agent, side effects and complications from medication interactions can occur. This risk is especially high in elders because they tend to be on more medications and metabolize drugs differently than younger persons, leading to a higher risk of disease-drug and drug-drug interactions. One study reported that the average US nursing home resident uses seven to eight different medications each month.30 Because adding another pharmaceutical increases risk, and current serotonergic medications for OCD have been found to be largely ineffective for treating hoarding,7 pharmacological treatment should likely be avoided in this population.
In contrast, there is some indication that cognitive-behavioral therapy, a form of mental health counseling that focuses on examining the relationships between thoughts, feelings and behaviors, may provide some benefit.7,31 However, most older adults with a mental disorder do not receive the mental health services they need,32 and in LTC settings, patients’ physical health needs are often so pronounced that they take precedence over any mental health problems. Therefore, even if compulsive hoarding were considered a distinct mental disorder or if a resident was found to hoard because of an underlying mental disorder, it is unlikely that he or she would have the opportunity to receive and potentially benefit from a service like cognitive-behavioral therapy.
Although the LTC setting renders the use of pharmaceuticals and mental health services problematic, this unique setting may lend itself to other interventions. Marx and Cohen-Mansfield18 speculated that monitoring by staff in the nursing home, as well as limited access to items commonly hoarded from the controlled environment, decreased the elderly residents’ ability to hoard. Such monitoring and restricted access to goods would not be possible outside of this type of setting, but because it has been reported that hoarders derive emotional comfort from their possessions,4 it can be postulated that limiting access to goods might become distressing to residents who are accustomed to hoarding. Therefore, when limiting residents’ ability to hoard, increased social interaction and participation in activities should be encouraged to help fill their emotional needs and potentially reduce the desire for acquisition. In addition, families should be encouraged to visit these residents more frequently, but should be advised by staff not to encourage hoarding behaviors, such as by bringing these residents requested or desired possessions to hoard.
There are no definitive answers in the literature when it comes to treating compulsive hoarding, and further studies are needed to guide evidence-based practice. Studies examining specific patient populations, such as LTC residents, are clearly needed.
To date, few studies have been published that thoroughly examine hoarding activity in elderly persons residing in nursing homes. Hoarding behaviors in LTC settings require investigation by nurse researchers. With the dearth of currently available nursing literature pertaining to this topic, there is little, if any, guidance available to drive management of this aspect of care in nursing homes. Given the physical safety and mental well-being issues that are associated with compulsive hoarding, future studies need to more closely examine evidence-based interventions to address the management of hoarding in the LTC setting.
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The authors report no relevant financial relationships.
Address correspondence to:
Nancy D. Henry, PhD
Florida Atlantic University
777 Glades Road
Boca Raton, FL 33431