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Shining a light on hoarding disorder

Symonds, Anita MS, BSN, RN, SANE-A, SANE-P, CFN, CFC; Janney, Regina BCMS, RN

doi: 10.1097/01.NURSE.0000434310.68016.18
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Although newly classified as a diagnostic disorder, hoarding remains poorly understood and difficult to treat. Find out how to recognize patients who hoard, what treatments are available, and how nurses can intervene to help patients and their families gain control over hoarding behavior.

Anita Symonds is an RN II, a forensic nurse examiner, and the SANE/FNE program coordinator and Regina Janney is an RN II clinical nurse at Christiana Care Health System in Wilmington, Del.

The authors and planners have disclosed that they have no financial relationships related to this article.

Figure

Figure

ONE SUMMER AFTERNOON, Mr. M, age 72, was brought to the ED with a possible fractured left hip.* He said he'd been lying on the floor for about 3 hours after tripping over one of his dogs. Emergency medical service (EMS) personnel who brought him to the hospital reported that Mr. M had many animals; authorities later determined that 38 dogs and 12 cats lived with him in a house with no electricity or running water. EMS personnel had to move piles of bags and papers to reach him, and animal feces were everywhere. They'd called state authorities to the scene.

On Mr. M's initial assessment, he was covered with feces from head to toe. He had bilateral lower extremity cellulitis due to multiple scratches, and his skin assessment revealed fleabites as well as urine burns. Described as very anxious, he constantly asked about his pets without expressing concern for himself. Mr. M was identified as a person who hoards. That evening, the local TV news program showed animal control officers removing animals from his house.

Hoarding is a psychiatric disorder that also involves medical and, at times, legal issues. A complex and perplexing disorder, hoarding was previously classified as an obsessive-compulsive disorder (OCD). In the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) issued in May 2013, hoarding disorder was reclassified as a diagnostic disorder.1

The diagnostic criteria for hoarding disorder set forth in the DSM-5 describe persistent difficulties discarding or parting with possessions, regardless of their actual value. Some people hoard animals or food as well as inanimate possessions. They fill up or clutter living areas until the space can't be used as intended.

People who purposely hoard experience distress when faced with the prospect of discarding items. The behavior causes significant impairment in social, occupational, or other areas of functioning, including maintaining a safe environment for self or others.1 For a diagnosis of hoarding disorder, the symptoms can't be attributable to a medical condition (for example, brain injury or cerebrovascular disease) or another mental disorder (for example, obsessions in OCD or delusions from a psychotic disorder such as schizophrenia).1

Hoarding is a common psychiatric condition that affects an estimated 700,000 to 1.4 million Americans, but few receive adequate treatment.2 It presents significant risks to the individual and family, ranging from health issues associated with unsanitary conditions to fire hazards. The goal of this article is to provide nurses with insight into hoarding disorder to guide clinical practice.

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Who hoards?

Hoarding seems to be interconnected with other psychiatric disorders, such as social phobias, schizophrenia, bipolar disorder, dementia, attachment disorder, autism, impulse control disorders, brain injury, and depression.3 (See A closer look at those who hoard.) Many legal, medical, mental health, and animal rights agencies are attempting to develop strategies to help people who hoard.

Although hoarding behavior is found in both men and women regardless of socioeconomic status, some patterns are common. Symptom onset occurs at, on average, ages 11 to 15.1 Hoarding onset occurs in childhood more often in boys. Older people have a high incidence of hoarding, especially if they have a concurrent diagnosis of dementia.5

Frost suggests that 1 in 20 people has a significant hoarding problem.6 Although about 18% to 40% of those with OCD report significant hoarding symptoms, these aren't usually the person's main problem. Perhaps 80% or more of those with hoarding disorder don't have symptoms of OCD.7 (See Is it OCDor hoarding disorder?) Dementia and hoarding may be the only psychiatric disorders that increase in severity throughout the life cycle.6

Food hoarding in foster children has been traced back to lack of food from neglect or abuse during childhood. It can occur in adults who experienced trauma when food and daily necessities were withheld; for example, in concentration camps or during wartime.5

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Dangers of hoarding

Hoarding has serious ramifications for both the patient and his or her family.

Environmental dangers. One study that reviewed 54 cases of animal hoarding found these problems within the households:

  • 32% had no working bathrooms
  • more than 20% had no working cooking facilities or refrigerator
  • 3% had no electricity
  • 25% had human or animal feces and urine on the bed
  • 32% had dead animals on the premises.8

People living in homes cluttered with hoarded objects may navigate their surroundings through narrow trails, if they can move at all. Some rooms may be so completely filled that they can't be entered. Excessively cluttered bathrooms and kitchens can cause hygiene, food preparation, and storage problems. The weight of collected items can cause structural problems, with collapse a real possibility.

Large amounts of clutter are also a fire hazard, especially if the objects are jammed against outlets or if appliances are used with things piled on or in them. In an emergency, the clutter may prevent those in the house from escaping and emergency personnel from getting in.9

Health dangers. Health issues for those who hoard and family members who live with them include injuries from tripping or falling over the clutter or animals, or slipping in animal urine or feces. When homes are infested with fleas, rats, mice, or bed bugs, extermination is difficult or impossible.

Objects falling from piles can injure or kill people. Dust accumulated from clutter, animal dander, mold, mildew, and high ammonia levels from animal waste can cause respiratory problems.

Parasites and food-related illnesses are linked to poor sanitation. Those who hoard animals also risk zoonotic diseases, such as bubonic plague, caused by infectious agents transmitted between or shared by animals and humans.10 Rabies, salmonellosis, cat scratch fever, Lyme disease, roundworm, and ringworm may result from close contact with dogs, cats, or rodents.11

Those who hoard tend not to accept home care after an illness, or may leave against medical advice or refuse rehab. They want to return to the items or animals they've left at home as quickly as possible.

Effects on children. Besides physical risks, children of those who hoard have unique psychological problems, including isolation and depression. They're usually too embarrassed to invite friends over, or they're not allowed to do so. At risk for poor hygiene, they may not be able to wash their clothing, causing further isolation and even making them a target for bullying. They may resent the person who hoards and may have to compete with the hoarded objects for their parent's affection. They live with the fear of being removed from their home.

Adult children of those who hoard are at risk for other disorders due to their childhood's unstable environment and relationships. They may exhibit symptoms of depression, anxiety, or OCD, or they may develop hoarding disorder themselves.12 Adult children may be afraid to bring their own children to visit, further isolating the person who hoards.

Financial consequences. Those who hoard may spend all of their money on their possessions. They may have the added expense of eating out or having food delivered because they can't cook in their own cluttered kitchens. They may neglect paying routine monthly bills. This may result in utilities being cut off and illnesses related to poor hygiene, lack of heat in winter, or excessive heat in the home during hot weather. Those who hoard animals may spend excessively on food for their many animals.

Legal consequences. Those who hoard risk homelessness if they're evicted or their home is condemned as a public safety hazard. They risk having their children removed from the home by child protective services or being charged with child neglect. Those who hoard animals may be charged with animal cruelty, which in some states is a felony.

Table I

Table I

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Identifying patients who hoard

Signs and symptoms vary among patients. Hoarding causes more distress to loved ones than to those who hoard because they don't identify their own behavior as a problem.13 Some report the disorder by explaining how it interferes with their daily life and functioning. They also begin to isolate themselves from family and friends due to guilt and embarrassment. The person may have difficulty with interpersonal relationships and experience family tension and low self-esteem.

When those with health problems seek medical treatment, outpatient providers may be able to explore their circumstances. Nurses need to ask about and listen to family concerns about the patient's condition and living environment. Observe the patient's behavior in the hospital: Some collect everything from used food trays to medicine cups to dressings.

Nurses can incorporate questions such as these into assessments to alert them to the need for further discussion:

  • What do you collect? Do others believe your collections are valuable?
  • Do you store your collections inside or outside the house? Can these areas be used for their intended purpose?
  • Do you find it difficult or impossible to discard your collections or possessions?
  • Is it hard to organize the things you've collected?
  • How do you feel about others touching items you've collected?14

Although those who hoard need care for physical problems, psychosocial issues should also be addressed. Nurses can share their concerns with other caregivers to initiate the systems needed to help the patient return to a safe home and maintain a state of well-being.

In Mr. M's case, identifying his hoarding behavior wasn't difficult. The challenge was to understand him and his needs, starting with dealing with the unwelcome news coverage. When Mr. M saw his animals being removed and heard them described as abused and neglected on the news, he became inconsolable, saying repeatedly that they were going to kill all of his pets and he wanted to die with them. He wouldn't participate in any treatment and refused to take his medications. Looking for family support, his nurses discovered he had a daughter, although they hadn't spoken for 2 years.

The second day postop, Mr. M's daughter Ms. J came to the hospital to offer her support. In addition to educating Mr. M and his daughter about postop care and resources, his nurses used a window of opportunity to help the family understand the hoarding disorder and its health consequences. In the end, Mr. M went to a long-term-care facility for rehab, and with his daughter's support, both agreed to counseling. Ms. J would help with the house while giving her father some say about its cleaning.

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Treatment and interventions

Although no “cure” for hoarding exists and the problem is chronic and often intractable, nurses can help those who hoard transition effectively to healthier behaviors and live more contentedly.3 Assessing those who hoard is challenging. Although Mr. M had been stabilized medically, his hoarding symptoms remained. A substantial psychological or emotional component to his illness requires a trusting therapeutic alliance to open the door to treatment.

Although researchers and clinicians don't agree on the most effective treatment modality, the key to successful treatment is for those who hoard to recognize they have a problem so early interventions are possible.2 Nurses must begin to ask questions and make referrals during hospitalization. With continued outpatient treatment, behaviors may improve.

Recovery from animal hoarding is less likely to be successful. Animal hoarding experts have known for years that recidivism can be up to 100%. Some who hoard animals have even picked up an animal on their way home from the court proceedings related to the hoarding or shortly afterwards.15

Change is slow and the relapse rate is high, with patients showing various levels of understanding about their hoarding behaviors.2 Those who hoard consider their possessions to be an extension of themselves. Many resist change or procrastinate. Nurses are instrumental in assessing the patient's level of insight to determine if they recognize that their collecting is a problem.

When someone who hoards is referred to outpatient treatment, nurses need to establish a therapeutic relationship to encourage the patient's participation. Nurses should be aware of the patients' need for control and their emotional attachment to their objects or animals. Recognize that just as hoarding behavior took time to develop, change also takes quite some time. Don't give up on patients. Offer them respect while they're searching for solutions. Use a nonconfrontational approach when teaching patients about safety hazards and impairment and isolation resulting from their disorder.

The treatment needs to be multimodal because a one-dimensional approach (such as therapy or medication only) hasn't proven to be effective.8

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Nursing interventions

Once those who hoard have been identified, nurses can initiate therapeutic nursing interventions and collaborate with a multidisciplinary team for a treatment plan.

  • Build trust with patients by showing a caring attitude, show respect for their independence, and communicate that they aren't being judged.
  • Encourage patients to verbalize their feelings about their hoarding's effects.5 Realize that they may see only the comfort they receive from collected items. Nurses need to recognize and examine their own feelings and biases about this behavior.
  • Display empathy while understanding that everyone has some attachment to belongings. Try to understand items' importance to those who hoard.9
  • Describe and discuss potential consequences of hoarding behaviors, such as eviction or loss of children, with patients.5 Include the benefits of change, such as being able to use rooms for their intended use and reestablishing relationships with children and grandchildren.
  • Encourage patients to think of ideas to make their home safer, such as moving clutter from doorways and halls.9
  • Offer support and discuss relaxation techniques.5 Some are anxious when their collections are out of their sight.
  • If authorities get involved, encourage a family member or social service worker, or offer yourself, to sit with them while the authorities explain their plan or actions.
  • Assess patients' level of understanding of their situation and offer support.
  • Encourage consults with professionals who have experience and expertise with those who hoard, including psychiatrists, psychiatric NPs, and home organizers. Offer a list of treatment providers who've expressed an interest in treating people who hoard.
  • Encourage family members to be involved in counseling or learning about hoarding. (For more information, see Resources on the web.)
  • With families, discuss local resources for help with those who hoard. Discourage families from emptying the home while patients are in the hospital. Doing so risks patients becoming very upset and cutting off contact with the family. They need to work with patients to remove the items: Involving those who hoard in decisions about what to remove helps them regain a sense of control over their environment and ultimately their lives.
  • Upon discharge, ask social service agencies to identify local visiting nurse services that have experience with those who hoard.
  • To help patients return to a safe and healthy environment upon discharge, connect them with social services agencies such as public safety, fire, building code, and public health.5
  • Prepare patients and families for long-term interventions, such as medication management, cognitive behavioral therapy (CBT), and interactions with multiple agencies. (See How does CBT help?)

Besides CBT therapy, psychopharmacology with selective serotonin reuptake inhibitors, such as paroxetine, sertraline, and fluvoxamine, is effective.2 These medications cause few adverse reactions, helping with adherence.2 These medications may also be prescribed for certain comorbid disorders, such as social phobia, depression, and anxiety.2

These therapies can reduce hoarding symptoms by about 40%, but when patients stop medications, symptoms return.2 Due to these medications' effects on anxiety and cognitive distortions, patients respond better to CBT.

Patients' social support systems and home healthcare must also be mobilized along with these two major outpatient therapies. Support groups can help patients understand they're not alone in this process. These groups can teach them about their behavior and how to reduce the symptoms. Some communities offer resources to assist those who hoard.

Free treatment may be available to patients participating in clinical studies about hoarding behaviors. Home healthcare can support patients by helping with realistic and achievable goals to retake living space and reduce clutter. Home healthcare can offer positive feedback about the treatment and positive changes that are demonstrated, such as retaking living space by reducing the clutter or improvements in social functioning.

Be aware that those who hoard animals, like Mr. M, believe that when animal control authorities get involved, their animals will die. (Although this isn't always the case, animals are sometimes euthanized because of severe health problems and because there are so many of them.) Fortunately, recidivism rates decrease when people who hoard and authorities work together.8 The treatment plan includes letting the person keep a few animals while agreeing not to take in any more as well as accepting unannounced visits from animal control. These visits need to go on as long as the person who hoards lives where the behavior could return.

There are no winners in hoarding cases, but there are many losers: those who hoard, family members, neighbors, animals, and society itself. Hoarding disorder is an illness that takes a community of participants to produce a good outcome for all involved.

Mr. M returned to the hospital twice during his 2-month rehabilitation. Although he had a very hard time accepting the loss of his pets, with his daughter's help the house was professionally cleaned of animal waste, and Mr. M could return home at last. Ms. J's support and understanding were most important, not only for her father to return home but to help him to have a more healthy and happy future. A few days after his return home, one of his cats (lucky number 13) showed up on his doorstep and ultimately the authorities let him keep that one cat.

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Ongoing care

Long-term case management includes the following:

  • With family participation, patients can be encouraged to keep a daily log of items acquired. This helps them recognize triggers that lead to collecting items.5
  • With patient permission, have family take photos of the rooms before, during, and after therapy.5
  • Set small realistic goals; for example, removing clutter from one area for 15 minutes a day or learning and practicing a relaxation technique in 1 week.2
  • Provide positive feedback for each small step toward the ultimate goal of removing clutter.

Nurses need to not only recognize those who hoard but to also remember that their “collections” comfort them. They may not recognize the negative effects of their hoarding, but with appropriate medication, counseling, support, and long-term follow-up, those who hoard can lead a life in which they begin to establish control over the hoarding and reverse the isolation and damage it engenders.

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A closer look at those who hoard4

According to R.O. Frost, a pioneering authority on hoarding disorders, hoarding is multidimensional, with these four characteristics:

  • The patient, who has a high level of perfectionism, has exhibited symptoms of anxiety and depression. The patient may have a family history of hoarding.
  • The patient has difficulty processing information, having problems with attention, memory, categorization, and decision making. The region of the brain that influences these functions activates differently in people who hoard than in those who don't have the disorder.
  • Someone who hoards builds intense emotional attachments to a wider range of objects than people who don't hoard.
  • The patient has opinions about the necessity of conserving items or missing opportunities based on a distortion of the item's importance.
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How does CBT help?

CBT, an option for those who hoard, is based on the idea that some behaviors can't be controlled through rational thoughts. This problem-focused psychotherapy is action oriented.16 CBT helps patients change their irrational thoughts and beliefs, which in turn helps them improve their decision-making and organizing abilities. This therapy helps patients understand how their irrational thoughts influence their problematic behaviors and helps ease their anxiety about reducing their possessions, enhancing their capacity to discard and declutter.

In the CBT plan, patients learn healthier ways of coping with stressful situations. They gain awareness and change how they think in critical situations, gradually confronting their anxiety and becoming less afraid.3

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Resources on the web

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REFERENCES

1. American Psychiatric Association. Hoarding disorder. Diagnostic and Statistical Manual of Mental Disorders: DSM 5. London; Washington, DC: American Psychiatric Publishing; 2013.
2. Valente SM. The hoarding syndrome: screening and treatment. Home Healthc Nurse. 2009;27(7):432–440.
3. Frost RO, Patronek G, Rosenfield E. Comparison of object and animal hoarding. Depress Anxiety. 2011;28(10):885–891.
4. Frost RO. Causes of hoarding. International OCD Foundation. 2013. http://www.ocfoundation.org/hoarding/hoarding.aspx?id=691&terms=causes+of+hoarding.
5. Bohrer GJ, Haynes L. Compulsive hoarding: sign of a deeper disorder. Nurse.com. 2010. http://ce.nurse.com/CE372-60/Compulsive-Hoarding-Sign-of-a-Deeper-Disorder/.
6. Frost RO. Types of hoarding. International OCD Foundation. Obsessive Compulsive Foundation. 2013. http://www.ocdfoundation.org/hoarding.
7. International OCD Foundation. From Dante to DSM-V: a short history of hoarding. 2013. http://www.ocfoundation.org/hoarding/dante_to_dsm-v.aspx.
8. Berry C, Patronek G, Lockwood R. Long-term outcomes in animal hoarding cases. Animal Law. http://www.animallaw.info/journals/jo_pdf/vol11_p167.pdf.
9. Bratiotis F, Christiana SO, Steketee G, Muroff J. What is compulsive hoarding? International OCD Foundation. 2009. http://www.ocfoundation.org.
10. Olsen CW. Zoonotic diseases tutorial. University of Wisconsin—Madison School of Veterinary Medicine. 2004. http://www.vetmed.wisc.edu/pbs/zoonoses/.
11. Neziroglu F, Slavin J, Donnelly K.How compulsive hoarding affects families. International OCD Foundation. 2013. http://www.ocfoundation.org/hoarding/family.aspx.
12. Panic Anxiety Mood. Compulsive hoarding. http://http://www.pamguide.com.au/anxiety/hoard_test.php.
13. Patronek GJ. Hoarding of animals: an under-recognized public health problem in a difficult-to-study population. Public Health Rep. 1999;114(1):81–87.
14. Sanjaya S, Maidment KMM. Treatment of compulsive hoarding. American Psychiatric Association. FOCUS. 2007;5:381–388.
15. Hayes V. Detailed discussion of animal hoarding, Michigan State University College of Law. Animal Legal and Historical Center. 2010. http://http://www.animallaw.info/articles/ddushoarding.htm.
16. Fundukian LJ. The Gale Encyclopedia of Medicine. Vol. 2. 4th ed. Detroit, MI: Gale; 2011:1061–1064.

* Facts and initials have been changed for patient privacy.
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