Adele (pseudonym), 78, had lived in the same home for 30 years. She had raised three sons in the house, all of whom had married and lived in the surrounding area. Adele went out to visit her sons and their families, but only with much coaxing. She allowed her sons and two grandchildren into her home but no one else. When she did go outside the home to visit or shop, she always appeared to be well groomed and appropriately dressed.
Adele’s family was aware of her hoarding for many years. Her youngest son went weekly to her home and did as much purging of saved newspapers, empty boxes, and garbage as possible. Adele needed to approve of every item he wished to throw out. Any attempt to speed up the process or dispose of larger amounts of hoarded items was met with extremely angry outbursts from Adele.
The hoarding continued to increase, despite the best efforts of Adele’s son. It was only after Adele needed to be hospitalized that the entire family became aware of the overwhelming extent of her hoarding. In the process of preparing for her return home after surgery, family members entered her house and were appalled to find piles and piles of clothes, magazines, and garbage, with only narrow passages to access different rooms. Francine, a daughter-in-law who was a nurse, talked with Adele about trying to purge some of the piles, but Adele reacted with resentment and anger and forbid anyone to touch her things.
Eventually Adele was no longer able to care for herself or live safely in her home. Once she was moved to an assisted living facility, the family took on the huge task of clearing the house to get it ready for sale. In cleaning one room that had piles almost to the ceiling, Francine discovered boxes and boxes of index cards on which Adele had meticulously recorded details of each day’s events, including what she ate. She had also recorded countless incidents of her anger at family members who had tried to help her—a hurt that Francine and her sister-in-law decided to keep from the others.
What is Hoarding?
A hoarding disorder such as Adele’s is a debilitating condition that is only recently becoming better understood. Clinically significant hoarding is a progressive, chronic disorder that is estimated to affect approximately 2% to 5% of the population (Ayers, Saxena, Golshan, & Wetherell, 2010; Otte & Steketee, 2011). The disorder occurs at twice the rate of obsessive-compulsive disorder (OCD) and almost four times the rate of bipolar disorder and schizophrenia (Otte & Steketee, 2011). It involves three characteristics: (a) excessive acquisition and retention of animals or apparently useless things; (b) cluttered living spaces that limit activities for which these spaces were designed; and (c) significant distress or impairment caused by the hoarding behavior (Franks et al., 2004). Hoarding often involves single, unmarried, older women living alone (Ayers et al., 2010). Individuals appear to receive emotional comfort from their accumulated possessions and have an inflated sense of responsibility for their possessions, contributing to difficulty in discarding them. Even something like a used bandage may carry an emotional attachment (Webley, 2010).
Hoarding has been studied primarily in the general population, with only a few researchers focusing on older adults. Yet, hoarding is an often unrecognized problem in older adults that appears to be increasing (Franks et al., 2004). Hoarding is noted to be more prevalent in older age groups, but because it often comes to clinical attention only in late life, it is difficult to determine onset of the disorder. Few researchers have examined whether symptoms of hoarding in older adults have early or late onset, are secondary to other conditions, or are similar to hoarding symptoms seen in younger and middle-aged populations. A study by Ayers et al. (2010) concluded that onset of hoarding symptoms may be initially reported in midlife but actually have been present since childhood or adolescence.
Serious consequences may result from hoarding, not only for those who hoard, but for their families and the general public. Hoarding seriously affects the quality of one’s life but can also cause safety and health problems. The extremely crowded and unclean home environment that occurs with hoarding can lead to increased falls and inability to access necessary rooms in the house, such as the kitchen, bathroom, and bedroom. Kim, Steketee, and Frost (2001) found that 45% of participants in their study who hoarded could not use their refrigerators or freezers because of spoiled food or storage of nonfood items; 42% could not use their kitchen sink or bathtub; and 10% could not use their toilet because of clutter or lack of repair. Food contamination, medication mismanagement, and social isolation are related problems. Individuals who hoard are also at higher risk for fatalities from fire because of piles and piles of accumulated newspapers, magazines, old clothes, and other items that may block exits. Animal hoarding can spread contagious diseases and adversely impact the health, welfare, and safety of human beings and animals (Castrodale et al., 2010). If hoarding continues unchecked, it can cause significant community health risks.
Understanding Hoarding Behaviors
Hoarding is a complex problem with multiple causes, making it difficult to understand. Hoarding has sometimes been called “Diogenes syndrome,” which includes a cluster of symptoms that are sometimes associated with late-life hoarding, such as extreme self-neglect, poor personal hygiene, and social isolation (Ayers et al., 2010). The name for the syndrome derives from Diogenes, a 4th-century BC Greek philosopher who was said to live in a barrel (Partin, 2011). The name for the disorder, however, does not accurately reflect Diogenes’ behavior, as it is not known that he hoarded; in addition, he actually sought human company daily at the Agora. Also, the term is not appropriate for the many individuals who hoard but do not show self-neglect or social isolation (Ayers et al., 2010).
Hoarding symptoms appear to include core traits of urges to save, difficulty discarding, excessive acquisition, and clutter, as well as indecisiveness, perfectionism, procrastination, disorganization, and avoidance (Ayers et al., 2010). Major empirical studies related to hoarding were not conducted until the early 1990s, and there has been disagreement about how to categorize the hoarding disorder (Franks et al., 2004). Historically, hoarding was studied within the context of OCD and was seen as a particularly disabling feature of OCD that was difficult to treat. However, as a result of recent research, the term for compulsive hoarding has been updated to hoarding disorder, as defined in the draft of the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-V), which is scheduled to be published in 2013 (Mataix-Cols et al., 2010). The DSM-IV-TR (American Psychiatric Association, 2000) listed hoarding as a symptom of OCD, referring to it as compulsive hoarding, but researchers have found that hoarding does not respond to OCD treatments, leading them to redefine it as a discrete disorder, with different neurobiology, genetics, symptom structure, and treatment response (Ayers et al., 2010).
Brain research focused on hoarding is at an early stage, but recent research suggests that there is a particular area of the brain that affects hoarding (Saxena, 2010). Damage to a part of the frontal lobes of the cortex has been found to result in new onset of hoarding in individuals who had no prior history of the disorder (Ayers et al., 2010). It appears that those who hoard have a unique pattern of brain activity, distinct from that seen in individuals with nonhoarding OCD that reflects impaired decision making. Magnetic resonance imaging scans show significantly increased activity in areas of the brain that control decision making when individuals who hoard attempt to make decisions about their possessions (Tolin, Kiehl, Worhunsky, Book, & Maltby, 2008).
New research suggests that a genetic factor may be involved in compulsive hoarding, and this is likely to be an important direction for future research (Ayers et al., 2010). It has also been suggested that hoarding can develop following a traumatic life event, but it is unclear if life events, head injuries, or neurological illnesses affect onset and course of hoarding symptoms in older adults (Ayers et al., 2010).
We know little about the course of hoarding behaviors over a person’s lifetime. However, it appears that other than dementia, hoarding may be the only psychiatric disorder that increases in prevalence and severity throughout the life span (Ayers et al., 2010). The most commonly found comorbidity appears to be depression (>50%), with OCD less than 20% (Otte & Steketee, 2011). In the study by Ayers et al. (2010), 72% of the participants had received psychiatric care at some point in their lives; 66% of these had been diagnosed with major depression and 28% with OCD. Despite these diagnosed problems, hoarding was undetected and untreated in all participants.
Hoarding may be particularly dangerous for older adults because of their physical and cognitive limitations. Most have had some form of mental health treatment in their lifetime, but their hoarding symptoms went largely undetected and untreated (Ayers, 2010). Thus, the hoarding problem may be identified only when a crisis arises. It is generally agreed that intervention is necessary when excessive collecting causes danger to the person who hoards or others.
Due to lack of awareness and knowledge of hoarding, both by the public and mental health professionals, many older adults may not believe their symptoms can be treated. Also, people sometimes view their hoarding behavior as a lifestyle choice, rather than a problem, even though they may try to conceal it. Additional barriers include the high cost of treatment, transportation problems, negative views of mental health treatment, low motivation, lack of insight, and too few professionals who are knowledgeable about treatment of the disorder (Ayers, 2010). Even today, only a small percentage of older adults who hoard receive treatment for it.
There is no one simple approach to treating a hoarding disorder. Established treatments for hoarding are relatively new, take a long time, and are often not successful (Ayers et al., 2010). Medication, cognitive-behavioral therapy (CBT), intervention, and self-help support groups are some of the treatments used.
Traditionally, the first line of treatment has been with medications used to treat depression, such as selective serotonin reuptake inhibitors (SSRIs) (e.g., paroxetine [Paxil®], fluoxetine [Prozac®]). However, people without OCD who hoard generally have a poor response to SSRIs (Saxena, 2010). Treatment with medications is often not successful, partly because those who hoard are disorganized and may forget to take their medication at the right time, if at all, and may lose or misplace the medications.
CBT has been used to treat hoarding, but although it is effective in treating OCD, trials using the traditional CBT approaches for OCD are not effective for those with hoarding. An alternative approach using intensive CBT with a skilled therapist over a prolonged period may be effective when it targets motivation problems, organizing skills, and acquiring behaviors, but this specialized CBT may not work as well for older adults, who seem to find the cognitive therapy “tools” too challenging to understand (Ayers, 2010). There is increasing evidence that older adults with hoarding behaviors may have specific functioning deficits related to flexibility, categorization, hypothesis generation, and efficiency, which may affect the value of cognitive therapy (Ayers, 2010).
People who hoard have often lived in the situation for many years with little insight into their behavior and may resist efforts to intervene. Families and friends often try to help a person who hoards by clearing out a home when the person is away, but this is usually not effective (Kim et al., 2001; Webley, 2010). The person may feel deeply traumatized and betrayed and may even break off relationships with those trying to help. Trying to organize the person’s possessions also does not work, as the person is likely to re-hoard in an effort to fill up the home again. Any intervention in the home of a person who hoards must be carefully planned and be with the cooperation of the person. Even then, it will probably be a short-term fix unless there is additional ongoing treatment.
Self-help support groups, either as a face-to-face meeting or Internet based, may be helpful for some people who hoard, as members are encouraged to set personal goals and support each other. Research shows that some degree of self-recognition is one predictor of successful outcome of treatment (Franks et al., 2004).
Interventions for older adults who hoard often require significant resources from multiple public agencies (Chapin et al., 2010). Increasingly, a multi-pronged approach involving different agencies and specializations is seen as an effective approach. Some communities have formed multi-agency hoarding teams, including such agencies as the police, fire department, adult- and child-protective services, mental health, building and safety, and animal control, who meet regularly to develop a comprehensive response to hoarding situations.
Webley (2010) highlighted the difficulty of attaining success in treatment of hoarding in older adults. In her article, she describes how Horning, a hoarding task force member, worked with 75-year-old Franny Gray through weekly visits to her home over a period of 7 years, gradually convincing her to reduce her accumulation of things. Working together, they managed to eliminate safety problems, but even after so many years, a lot of work remains to be done. Most surfaces in the house are still covered with miscellaneous objects, and Gray sleeps surrounded by bags of clean clothes.
It is anticipated that the DSM-V will have a major impact on understanding the treatment of hoarding disorder, as it will be studied not as a symptom of OCD but as an independent disorder with its own parameters (Mataix-Cols et al., 2010). Whatever intervention is used, it should be collaborative, involving the older adult, family, and agencies focused on the problem.
Nurses can play an important role in educating individuals and groups who interact with older adults. The signs of hoarding are often recognizable long before a crisis occurs if people are aware of the potential for this disorder. Neighbors, relatives, friends, and professionals need to be aware of things such as continually closed window blinds, trash accumulation, and older adults’ refusal to allow people to enter their homes. Given the progressive nature of hoarding, treatment should be started during initial stages. Nurses and other mental health providers are in a unique position to help families intervene appropriately (Best-Lavigniac, 2006). Home care nurses are often the first to detect signs of hoarding and can be instrumental in identifying clients at risk and in facilitating evaluation, diagnosis, and treatment (Valente, 2009).
If a hoarding problem is identified, nurses can help determine the types of safety and health hazards that are present and the appropriate community agencies to contact. Psychiatric home health nurses can be valuable in teaching clients various techniques for getting rid of clutter and in helping them cognitively reframe their obsessive fears about discarding things (Thobaben, 2006). They can also teach family members and friends to recognize the significance of the hoarded items and the importance of intervening compassionately (Best-Lavigniac, 2006).
More research is needed to better understand hoarding in older adults. It is clear that because of differences in manifestation of the disorder in younger and older age groups, research should specifically target older adults. There is a need to identify ways in which community agencies can work together collaboratively to solve problems related to hoarding, and most important, how extreme hoarding can be prevented. From a policy perspective, it is critical to determine what factors are associated with costly, institutional placement for older adults who hoard.
Hoarding in older adults is a complex disorder that is difficult to treat. New research is helping shed light on the ways in which hoarding disorder differs from OCD and facilitating identification of new approaches to treatment. Nurses can make an important contribution to the quality of life of individuals with this disorder by recognizing the problem in patients they encounter and contacting community agencies that can provide guidance in treatment.
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