Hoarding Disorder: Information for Primary Care
J. is a 50-yo male, single and living in an apartment. You know both him and his wife as your patients, though his wife passed away a few years ago. He doesn’t come regularly for checkups. Today, he comes to the clinic accompanied by his adult daughter. His daughter expresses her concern that ever since her mother passed away, her father is simply not taking care of himself, and that the apartment has become cluttered and unliveable. While his wife was still living, she used to help ensure that things didn’t get too out of control. Now that his wife has passed away, he just accumulates things and can’t get rid of anything…. His daughter says, “There is stuff piled to the ceilings, and there is no room to move. You literally have to climb over things to get from place to place…. I’m worried he could fall, get trapped, or have a pile of things collapse on him! You have to do something!”
What is it?
Hoarding disorder is characterized by:
- Persistent difficulty discarding or parting with possessions
Harmful effects—emotional, physical, social, financial, and even legal—for the person suffering from the disorder and family members.
While the individual that is hoarding may not be concerned about their hoarding, the hoarding can be very concerning to others, such as family members, or landlords.
Hoarding is not the same as normal collecting behaviours
- In hoarding, the quantity of their collected items is much greater than in collecting; hoarders accumulate a large number of possessions that often fill up or clutter active living areas of the home or workplace to the extent that those areas can no longer be used normally.
- Prevalence 2-5% (DSM-5)
- Note that although it is underrecognized, it does occur at twice the rate of obsessive-compulsive disorder (OCD) (2%) and at almost 4 times the rate of bipolar disorder and schizophrenia (Pertusa, 2010).
- Individuals with pathologic hoarding do not usually voluntarily seek help from a physician.
- Many times, it may be other family members that report concerns to the family physician.
- In elderly patients with pathologic hoarding, it is often through an event such as a fall or fire that they come to the attention of family members, neighbours and professionals.
History / Interviewing
Typical screening questions based on DSM-5 might be the following:
- Do you tend to keep things that others would get rid of?
- Do you have problems getting rid of things?
- Does this cause problems at home? For example, are you unable to use any rooms because they are full of stuff?
- Does it cause problems with other family members?
- Do you tend to collect free things? Do you tend to buy more things than you can use or afford?
The diagnostic interview (ideally with collateral history from others) can include an assessment of risks caused by the hoarding such as:
- Potential fire hazards
- Risk of a clutter avalanche
- Any rodents or insects?
- Are the living conditions unsanitary or unclean such that they pose a risk to health?
- Are there other people affected in the home, e.g. children, elderly?
- Are there animals in the home?
DSM-5 Diagnostic Criteria
DSM-5 Criteria for Hoarding Disorder:
- Persistent difficulty discarding or parting with possessions, regardless of their actual value.
- This difficulty is due to a perceived need to save the items and to distress associated with discarding them.
- The difficulty discarding possessions results in the accumulation of possessions that congest and clutter active living areas and substantially compromises their intended use. If living areas are uncluttered, it is only because of the interventions of third parties (e.g., family members, cleaners, or the authorities).
- The hoarding causes clinically significant distress or impairment in social, occupational, or other important areas of functioning (including maintaining a safe environment safe for oneself or others).
- The hoarding is not attributable to another medical condition (e.g., brain unjury, cerebrovascular disease, Prader-Willi syndrome).
- The hoarding is not better explained by the symptoms of another mental disorder (e.g., obsessions in obsessive-compulsive disorder (OCD), decreased energy in major depressive disorder, etc.).
Differences with DSM-IV and DSM-5
In the DSM-IV, hoarding was not recognized as a distinct disorder, but rather as a symptom that could occur in conditions such as obsessive compulsive disorder (OCD). Now however, it is realized that hoarding disorder has its own particular symptoms, prognosis and treatment course, which is why it is recognized as a separate condition in the DSM-5.
Differential Diagnosis (DDx)
Hoarding of objects comprises a continuum from normality to extreme disease.
Differential diagnosis of hoarding behaviours:
Normal hoarding, i.e. collecting
The hoarding behavior may in fact be normal, if it is not causing any impairment. Many people enjoy collecting comics, hockey cards, coins and stamps. Collecting is a normal phenomenon, where the goal is to organize and enjoy a series of objects.
Hoarding (along with self-neglect) can be secondary to depression. Treating the depression then leads to improvement of the hoarding behaviours.
Dementia particularly frontotemporal lobar degeneration (FTLD)
Red flags for hoarding due to dementia
Brain injuries can lead to cognitive issues that can then lead to hoarding behaviours.
Such as social anxiety disorder, generalized anxiety disorder, and classically, obsessive compulsive disorder (OCD)
Individuals with substance use may neglect personal care as well as their surroundings, and may thus appear to have hoarding.
Individuals with schizophrenia can have hoarding behaviours.
People with hoarding disorder are at risk of having comorbid conditions such as:
- Major depressive disorder (MDD)
Acquisition-related impulse control disorders
- Compulsive buying
- Acquiring free things
- Social anxiety disorder (aka social phobia)
- Generalized anxiety disorder (GAD)
- OCD: Note that although OCD can be seen with individuals with hoarding, OCD is actually less common than social anxiety in those with hoarding
- ADHD, Inattentive Type
Physical Exam (Px)
Physical exam is useful to rule out other medical conditions that may contribute to the hoarding behavior, such as dementia.
There are no pathognomonic tests to diagnose hoarding disorder, however laboratory investigations may be helpful to rule out associated medical conditions.
Management in Primary Care
Goals of treatment
Help patients to remain safely at home (unless severe risk or incapacity)
- Most patients have this goal, and thus, the goal of being able to stay safely at home can be something to agree upon
- Decreasing social isolation
- Reducing excess clutter, ideally in a stepwise approach
- Help patients to remain safely at home (unless severe risk or incapacity)
Refer to community resources
- Treatment of hoarding disorder is generally a multidisciplinary approach relying on other community supports and services
- Are there animals at risk? Contact the Humane Society or SPCA
- Are there children at risk? Contact child welfare agencies such as Children’s Aid Society (CAS), etc.
- Refer to local specialists in hoarding
Management in Primary Care: Medication Treatment
- There is no medication per se that treats hoarding
However, if there are conditions such as anxiety, depression, psychosis, OCD then those can be treated
- E.g. if social anxiety, depression or OCD, then consider SSRIs or SNRIs
- E.g. if psychosis, then consider antipsychotic medication
When to Refer
In most cases of hoarding, specialized supports from mental health professionals and/or specialized hoarding resources are required.
Who to Refer to
- Depending on the community, the local public health department may offer services, or help with navigating services. Hoarding is a public health issue, because due to the increased of fires, insect and rodent infestation, it affects more than just the individual with hoarding.
Mental health professionals:
- There may be mental health professionals in the community that have expertise with hoarding, which may include social workers, counsellors and psychologists.
Specialized hoarding services exist in many communities, which may include:
- Cleaning companies
Individuals with expertise in helping with clutter
- Although there are many services which purport to help with hoarding, if at all possible, it is best to choose a professional that belongs to a professionally regulated profession, e.g. social work, nursing, psychology, etc.
- Dinning LB. No room to spare. Ottawa’s community response to hoarding plan. Ottawa, ON: Ottawa Community Response to Hoarding Coalition; 2011. Available from: www.hoardi
- Frank C: Approach to hoarding in family medicine: Beyond reality medicine. Canadian Family Physician October 2012 vol. 58 no. 10 1087-1091
- Frost R, Steketee G, Tolin DF: Comorbidity in hoarding disorder, Depress Anxiety. 2011 Oct 3;28(10):876-84. doi: 10.1002/da.20861. Epub 2011 Jul 18.
- Pertusa A, Frost RO, Fullana MA, et al. Refining the diagnostic boundaries of compulsive hoarding: a critical review. Clin Psychol Rev. 2010;30:371-386.
About this Document
Written by members of the eMentalHealth.ca Primary Care Team, which includes Dr’s M. St-Jean (family physician, University of Ottawa), E. Wooltorton (family physician, University of Ottawa), F. Motamedi (family physician, University of Ottawa), M. Cheng (psychiatrist, University of Ottawa).
Information in this pamphlet is offered ‘as is' and is meant only to provide general information that supplements, but does not replace the information from a health professional. Always contact a qualified health professional for further information in your specific situation or circumstance.
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Date of Last Revision: Sep 4, 2015