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This article explores the various components of hoarding, including definitions, stages, risk factors, and safety measures. It also discusses the prevalence of hoarding disorder, common features, and the relationship between hoarding and squalor. Furthermore, it addresses animal hoarding and provides resources for reporting animal cruelty.
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Encounters of the hoarding kind…presented by: Joleen ChiaveriniALLEGHENY COUNTY DEPARTMENT OF HUMAN SERVICESoffice of behavioral health
INTRODUCTION Purpose: Examine multiple components of hoarding, including hoarding disorder basic definitions, stages of hoarding, risk factors, safety and interaction.
Basic definitions • Collecting – owning items of a specified type in an organized and systematic fashion either professionally or as a hobby. The purpose of collecting is for displaying, and it does not result in clutter, distress, or impairment. • Clutter–a collection of generally unrelated items lying about untidily in spaces designed for other purposes. (examples- kitchen table, countertops, coffee table, porch) • Hoarding– to accumulate for preservation, future use, etc., in a hidden or carefully guarded place. • Squalor – a state of being extremely dirty and unpleasant, resulting from the neglect of normal cleaning activities.
What is hoarding disorder? According To The DSM-5, It Is Defined As: • Persistent difficulties discarding or parting with possessions, regardless of their actual value, due to a perceived utility or aesthetic value of the items or strong sentimental attachment • difficulty is due to a perceived need to save the items and to distress associated with discarding them (i.e. purposefully save possessions and experience distress when facing the prospect of discarding them) • Results in the accumulation of possessions that congest and clutter active living areas and substantially compromises their intended use • Causes clinically significant distress or impairment in social, occupational, or other important areas of functioning (including maintaining a safe environment for self and others) • Not attributable to another medical condition nor better explained by symptoms of another mental disorder
WHAT’S THAT MEAN? • Persistent Difficulties Discarding Or Parting With Possessions… • Due To A Perceived Need To Save And To The Distress Associated With Discarding Them… • Resulting In The Accumulation Of Possessions That Congest And Clutter Active Living Areas And Substantially Compromises Their Intended Use… • And, Causes Clinically Significant Distress Or Impairment In Social, Occupational, Or Other Important Areas Of Functioning… • But, Not Attributable To Another Medical Condition Nor Better Explained By Symptoms Of Another Mental Disorder
SQUALOR • Defined as: the state of being extremely dirty and unpleasant, resulting from the neglect of normal cleaning activities • Can occur as the result of Hoarding Disorder and sometimes occurs in the absence of Hoarding Disorder • Most often found in elderly persons who have additional mental challenges, such as dementia
In Hoarding Disorder… Squalor occurs when the items saved include spoiled food and/or when animals are present. Severe domestic squalor is often associated with a lack of social contact and mental or physical incapacity.
Animal hoarding • Occurs when an individual has a large number of animals but fails to meet the animals’ basic care needs • Animals often live in poor environments and suffer from malnutrition, severe overcrowding, and/or extremely unsanitary conditions • May result from different processes • responds to different kinds of treatment Reporting animal cruelty: Contact your local humane officer
Common features of hoarding disorder • Indecisiveness • Perfectionism • Avoidance • Procrastination • Difficulty planning and organizing tasks • Distractibility • Source: Frost and Hartl (1996), Frost et al. (2011b) and Steketee and Frost (2003)
Prevalence and risk factors… • Affects approximately 2-5% of the population • Affects both males and females • Universally present in all races, ethnicities, and cultures around the world • Does not discriminate based on education or socioeconomic status • Symptoms are nearly 3 times more prevalent in older adults (ages 55-94) • Symptoms may first emerge around the age of 11-15 and are chronic • Severity increases with each decade of life
Prevalence and risk factors continued… • About 50% of individuals who hoard report having a relative who also hoards • Approximately 75% of those with hoarding disorder are also diagnosed with depression, anxiety disorders, or Obsessive Compulsive Disorder • In severe cases, hoarding can put individuals at risk for fire, falling (especially the elderly), poor sanitation, and other health risks. • Onset is often preceded by a stressful or traumatic life event
trauma and stress Most individuals who hoard have a history of trauma. As a means of coping with the past, individuals seek comfort in possessions. Sometimes, these possessions create a physical barrier between them and the person(s) or world that harmed them. Other times, folks who have suffered abuse, neglect, or rejection turn their affection towards items, and the joy that the items bring serves as a substitute for healthy interpersonal relationships.
How severe is the situation? • There are different models that categorize the levels of hoarding. The Clutter Rating Scale from the Institute for Challenging Disorganization (ICD) is a well-known and a widely utilized scale. Hoarding severity is broken down into five levels, with Level I being least profound and Level V being most severe. • ICD considers Level III as the pivot point between a household environment that might be assessed as cluttered, and a household environment that may require the deeper consideration of working in a hoarding environment. • The categories below outline the levels of hoarding:
LEvels of hoarding Level I Level I of the Clutter Rating Scale is the least advanced level of hoarding. At this stage, hoarding behavior and habits become solidified. • Below are common characteristics that may be present in Level 1 • All doors and stairways are accessible • All amenities are accessible and working • Functioning bathroom and clean clothes • All family members and pets are healthy, clean, and well nourished • Maintained finances • Invites friends over • Not generally viewed as a hoarder • Feelings of anxiety about their clutter, with minimal effects
levels of hoarding Level II In level II, indicators of hoarding become more identifiable. Safety issues are starting to arise and impaired functionality is starting to be present, including accessibility and mobility constraints. • One exit to the house is blocked or one room is unusable • One major appliance is not in working order because it is too difficult to access • Less attention is being paid to housekeeping. (e.g. Dishes are piling up and shelves remain dusty) • Pet odors becoming noticeable • Shift in focus from life to clutter • Diminished social and family interaction • Reduction in the number of guests they have over because of embarrassment • Mild anxiety and depression • Shifting from embarrassment to justification
levels of hoarding • Level III • Level III is the mid-point on the Clutter Rating Scale, and signs of hoarding are starting to become evident to outsiders. • Indoor items may be stored or tossed outside • Minor structural damage • Evidence of excessive extension cord use and phone lines when outlets get blocked off • Pets may have fleas • Personal care is neglected • The kitchen sink may be full of dishes and has standing water present • Stairs and walkways are generally extensively cluttered and difficult to navigate • Outside storage (shed or garage) is overflowing • Consuming reheated, precooked, or fast food because the kitchen is only borderline functional • Decreased physical activity • Family has attempted to intervene numerous times and is faced with rejection and withdrawal • Work place problems • Growing financial concern
levels OF HOARDING Level IV Level IV consists of advanced structural damage in several areas, including sagging floors and ceilings. Major appliances are no longer working properly or at all. The house and contents pose a significant safety risk to occupants. Additionally, individuals will not have access to fresh foods and safe/workable food preparation area and utensils. • Mold, bugs, and cobwebs may be present • Contents are stored in uncommon places such as clothes hanging on the shower curtain rod or important documents placed in the oven • Bathe in the sink or not at all • Struggle to get to work on time or no longer working • Significantly behind on bills and other serious financial troubles • Utilities may be shut off • Pets may have run away or died in the house • Individuals may have shut everyone out of their lives • Focus mostly on the past or an unrealistic future • Individuals who hoard will remain in very small area of the house, “The Cockpit”
Levels of hoarding LEVEL V Level V is the most advanced and profound stage. Hoarding is evident and the property is highly unsafe and uninhabitable. • Major structural damage to the house • Severe mold, strong odors, bugs, rodents, and cobwebs • Entire floors of the house might be blocked off • Walls of items in every room • Struggling to complete simple tasks like eating, sleeping, using the restroom • Limited to consuming soft drinks, fast food or expired foods • Family and friends (if they are still in contact with them) are deeply concerned • Serious financial problems • Severe, debilitating depression • Confusion • Isolated to their house, unless it is to move into their car or a homeless shelter
How do people with hoarding disorder improve their situation? • An individual must be ready, WILLING and ableto engage in therapy and in clean-up activities. • A person cannot be forced to change. Discarding possessions without the individual’s involvement, participation and consent will be counterproductive and cause trauma, stress and distrust.
Road blocks and Barriers to Treatment There are many road blocks and barriers to successfully accessing, receiving and progressing through the treatment and clean-up process. • These include: • Cost-cleaning out the home can be very costly, and personal funds may be limited • Limited access to appropriate treatment- Cognitive Behavioral Therapy (CBT) is the best practice approach to treating hoarding disorder. While many therapists have been trained in CBT, very few conduct home visits.
Road blocks and Barriers to Treatment • Lack of full insight into the extent of the hoarding situation-the person may be unready and unwilling to improve their situation or believe that there is no problem at all. Some may be unable to comprehend the size of their clutter and feel their issues are more related to a lack of space or lack of organization. • Complications from physical health conditions-the person may be unable to clean and maintain their home or leave their home to get to treatment, due to physical health problems. (Explore homemaker or chore services programs for which they qualify). • Social Isolation-hoarding is often isolating. Many individuals that hoard are ashamed and embarrassed and hide their situation from others.
Road blocks and Barriers to Treatment • Stigma and Discrimination-The stigma of having a hoarding disorder may be at the core of why an individual does not seek treatment. The disorder is oftentimes negatively portrayed in the media, and as a result, an individual may be more comfortable hiding the illness and withdrawing from those around them, rather than becoming vulnerable to critics. Special care and sensitivity needs to be taken to engage an individual to accept services. • Transportation and Community Access-Access includes transportation and physical and community access. Individuals in rural areas may not have access to public transportation. An individual may have to drive an hour or more to be able to receive support, treatment or socialization.
Legal CONSIDERATIONS • Individuals diagnosed with hoarding disorder are protected under the following laws: • Fair Housing Act (Title VIII of the Civil Rights Act of 1968) • Fair Housing Amendments Act (FHAA) • Americans with Disabilities Act (ADA) • State and local laws • Individuals with a hoarding disorder diagnosis are entitled to reasonable accommodations in housing, employment and public places. • If the safety of children, vulnerable adults or older adults is suspected or in question, contact the appropriate protective services agency.
However… • If the person poses a danger to self due to an inability to care meaning that there is reasonable probability that death, serious bodily injury or serious physical debilitation would ensue within 30 days unless adequate treatment were afforded under the act, and the behavior is likely due to a mental illness, then pursuing an involuntary mental health commitment is an option. BUT… • If there is no threat of imminent danger to self, and the person is not willing to go to the hospital on a voluntary basis, then consider calling behavioral health crisis services in your local area
Safety and precautions Hoarding situations require special safety measures. Safety precautions can be used to mitigate risks in a hoarding situation. Each hoarding situation is unique, so understanding the extent and degree of hoarding is important. Some hoarding situations may be advanced with the presence of mold or dead or alive animals -including urine and droppings. Additionally, structural integrity issues and fire risks are increased. If the home impacts on the community by posing an environmental health hazard, then contact your County Health Department. Local code enforcement can also be contacted to address code violations, but this won’t address the underlying mental health issues that are resulting in the hoarding situation in the first place.
Entering a hoarded property professionals that enter the home are subject to health and safety concerns. The following are important steps to consider to safeguard yourself • Take only essential items with you. • Avoid sitting, particularly on soft-covered furniture. • Do not lift, carry, or walk into areas you do not feel comfortable accessing. • Be aware of your exits and paths. Avoid areas where piles can easily topple.
CHALLENGES FOR FIRST RESPONDERSblocked interior stairways / doorways
THE GOAL… • EARLY DETECTION AND EARLY INTERVENTION • By educating the public on how to recognize the early stages of Hoarding Disorder, the hope is that help can be provided before the situation becomes a crisis. • First responders who recognize the early stages of Hoarding Disorder can inform the person that there may be treatment and resource options available to help them address their situation.
ADDRESSING HOARDING INTERACTIONTIPS: • bE respectful -ACKNOWLEDGE THAT THEY HAVE THE RIGHT TO MAKE THEIR OWN DECISIONS AT THEIR OWN PACE • BE UNDERSTANDING –EVERYONE HAS SOME ATTACHMENT TO THE THINGS THEY OWN • BE COURTEOUS –ASK FOR PERMISSION BEFORE TOUCHING ANYTHING • AVOID BEING JUDgMENTAL • OFFER HOPE THAT THEIR SITUATION CAN IMPROVE –REFER THEM TO A RESOURCE THAt MIGHT BE ABLE TO HELP THEM
ADDRESSING HOARDING referring to appropriate resources: • MENTAL HEALTH AGENCIES- treatment • BEHAVIORAL HEALTH CRISIS SERVICES- help access treatment and other services • LOCAL DEPARTMENT OF AGING- help access in-home services • CHILDREN, YOUTH AND FAMILIES- learn housekeeping/homemaker skills • HEALTH DEPARTMENT • CODE / BUILDING OFFICIALS • FAMILY MEMBERS- help with clean-up • CHURCH GROUPS- help with clean-up • Support/SELF-HELP groups- learn ways to cope with emotions AND REDUCE SOCIAL ISOLATION
More information about the cognitive behavioral therapy protocol to address hoarding disorder can be found on the international ocd foundation website https://hoarding.iocdf.org/professionals/treatment-of-hoarding-disorder/treatment-of-hd-skills-training/therapy-cbt/
Presenter contact information:Joleen Chiaverini, MSWAllegheny County Department of Human ServicesOffice of Behavioral HealthJoleen.Chiaverini@alleghenycounty.us
