What You Need to Know When an Individual Hoards

Editor's note: This text-based course is a transcript of the webinar, What You Need to Know When an Individual Hoards, presented by Kathleen Weissberg, OTD, OTR/L, CMDCP, CDP, CFPS, CGCS.

Learning Outcomes

• As a result of this course, participants will be able to:
  • Recognize the scope of hoarding in senior living and how it differs from collecting.
  • Identify signs of hoarding behaviors and their effects on health and well-being.
  • List strategies providers may use to address and reduce hoarding behavior in residents and identify verbal and non-verbal communication strategies to address hoarding and support the emotional well-being of hoarders.

Introduction/The Stories

As occupational therapy practitioners, we collaborate with our colleagues in physical therapy, speech-language pathology, nursing, and other disciplines to address and reduce hoarding behavior in our residents. We work to identify verbal and non-verbal communication strategies to address hoarding and support the emotional well-being of those who hoard. This is a significant objective, and I believe we are well-positioned as occupational therapy practitioners to tackle this issue in senior living environments.

Hoarding is a prevalent issue in various senior living settings, including assisted living, independent living, senior housing, and home care. It is a common challenge that we encounter, and given our holistic approach to treatment, we have a vital role in addressing it. I would like to share a few stories to illustrate this point, which you might find familiar.

One scenario involves staff reacting urgently to an imminent state inspection, admonishing residents to dispose of their belongings. A resident might question why they are being targeted when others with more clutter are not. Maintenance staff might arrive with a dolly, informing residents that their belongings will be temporarily removed due to an upcoming state visit, with promises to return them later—promises that are sometimes unfulfilled. 

In one true story I witnessed, an unannounced purge left a resident feeling betrayed, lamenting how their trust was violated. These stories highlight the importance of our role in managing such situations and maintaining trust with our residents.

What is Hoarding?

• Persistent difficulty discarding or parting with possessions, regardless of their actual value
• Extreme cases interfere with normal daily activities and relationships
• Can become a health or safety hazard

I am just going to start by saying this: Hoarding is a disorder identified in the DSM manual. The definition, which you can read along with me, describes it as a persistent difficulty discarding or parting with possessions, regardless of their actual value. This behavior was officially recognized as a diagnosis in 2013.

Unfortunately, the media often highlights only the extreme cases of hoarding. However, any case of hoarding can significantly impact normal daily activities, access to one's environment, the ability to perform meaningful occupations, and can interfere with interpersonal relationships.

Compulsive Hoarding

• A person collects and keeps a lot of items, even things that appear useless or of little value to most people, and
• These items clutter the living spaces and keep the person from using their rooms as they were intended, and
• These items cause distress or problems in day-to-day activities.

Compulsive hoarding involves three key elements. Firstly, individuals collect a large number of items, even if these items have no apparent value. While we might look at these items and see no value, to the person hoarding, they hold incredible significance.

Secondly, this accumulation results in clutter that impacts their living space. In extreme cases, this clutter can prevent rooms from being used for their intended purposes.

Finally, compulsive hoarding causes significant distress. Those affected often experience feelings of shame and guilt, along with a variety of other challenging emotions.

If You Hoard, You Might …

• Feel the need to get more things, even if you have a lot already
• Have very strong positive feelings whenever you get more things
• Feel very upset or anxious at the thought of throwing or giving things away because of your emotional attachment to them
• Find it very hard to decide what to keep or get rid of

When discussing hoarding, it's important to recognize that individuals often form positive relationships with the items they hold onto. More than anything, they have an overwhelming need to acquire more. It's not just about the individual items but about collecting a large quantity of them. This excessive accumulation is a key sign of hoarding.

• Find it hard to organize your things
• Have so many things that you can't use parts of the place you live in
• Have disagreements with the people close to you about your things
• Find it hard to pack for trips away

It is hard for them to organize, and often, they can't use parts of their home.

Hoarding in Senior Living

• Refusal to get rid of things when they’re no longer useful
• Some ask relatives and friends to bring in many possessions they don’t need
• Shopping (including online) for merchandise for which they have no need and no storage space
• In cases of dementia, individuals may be “shopping” in other residents’ rooms and then hiding the collected items in their own room

In senior living settings, the literature typically identifies three ways hoarding manifests. Firstly, there is a refusal to get rid of things when they are no longer useful. I recently spoke with someone in California who mentioned a resident collecting red solo cups, and another mentioned a resident collecting other items that should have been discarded. This behavior often includes asking family members to bring in items they don't truly need, resulting in cluttered living spaces.

Secondly, shopping is a common aspect of hoarding behavior. Many seniors purchase excessive quantities of items, such as buying ten brooms instead of one. This could be due to cognitive decline, depression, anxiety, dementia, or Alzheimer’s. Despite limited storage space and no real need, they continue to amass large quantities of items.

Scope of the Problem

• About 4% of the population shows hoarding behavior
  • The percentage increases to 6.2% in people over 55
• Around 75% of individuals who have hoarding as a diagnosis also have a co-occurring mental health condition
  • Depression, social anxiety disorder, generalized anxiety disorder
• According to the APA, 2-6% of the U.S. population exhibits a hoarding disorder.

The prevalence of hoarding behavior varies depending on the literature, averaging between 2% and 6%. Most sources indicate that approximately 4% of the population exhibits some type of hoarding behavior. However, this rate increases significantly for individuals over the age of 55, rising to about 6.2%. This higher prevalence in older adults underscores the increased risks associated with hoarding in this age group.

Consequences

• Fire hazards
• Insects and rodents, especially with food hoarding
• Social isolation
• Increased risk of falls
• Financial problems
• Hazards for staff who enter to provide care
• Family conflicts
• Structural damage to the room or apartment
• Health risks

The consequences and risks associated with hoarding are significant. Some of these include fire hazards and financial problems, such as the inability to care for hoarded animals or to pay for excessive purchases like buying ten brooms. Due to the weight and extent of the clutter, structural damage can occur, and there is an increased risk of falls. Social isolation is another consequence, as individuals may not allow others into their environment due to shame. Hoarding also leads to family conflicts, often exacerbating existing tensions rather than bringing families together.

Types of Hoarding

Let's talk just briefly about the types of hoarding.

Digital

We're going to start with digital hoarding. Throughout this section, you'll hear me say "mea culpa" several times because I do this myself. It wasn't until I started looking at the definition that I realized some of my own issues with digital hoarding.

• “The accumulation of digital files to the point of loss of perspective, which eventually results in stress and disorganization."
• Struggle with organization and disposal
• Takes place in electronic environments where information is stored digitally
• Signs of digital hoarding:
  • You accumulate digital files easily, even if unimportant
  • You’re reluctant to delete unused files
  • You find files difficult to locate
  • You feel emotionally attached to your files
  • You save files across multiple devices and platforms

Digital hoarding, as you can see from the definition, involves accumulating digital files, which could be a large number of photos, Word documents, or work-related items in an electronic environment. These often include unimportant files, resulting in an overflowing inbox, multiple email addresses, and folders of digital photos that are rarely sorted through or viewed.

Many of us stockpile files with the intention of using them someday, though we typically don't. There is a reluctance to delete these files, thinking they might be needed in the future, but even if kept, they are often difficult to locate due to inconsistent naming or storage locations.

An emotional attachment to these files, especially photos, is common. While capturing life events is valuable, capturing every single moment may not be practical. Additionally, these files are often saved across multiple devices and platforms, such as the cloud, external hard drives, and various laptops.

I'll admit, I do this myself. I have numerous external drives, cloud storage accounts, and other platforms where I save my digital files.

Shopping

• If chronic shoppers are also hoarders, they will tend to hold on to every item they purchase, even if they have no practical use for it.
  • Food
  • Clothing
  • Antiques and collectibles
  • Survival gear and equipment
  • Items from home shopping television networks
  • Common household items such as vacuums or propane tanks

We've already discussed shopping hoarding, and as you can see here, it involves purchasing items and holding onto every single one, even if they have no practical use. People might buy multiple of the same item without a clear purpose. 

More concerningly, they sometimes purchase dangerous items, such as volatile chemicals or propane, and hold onto them, which can pose significant risks.

Food

• Shopping for quantities of food when the refrigerator, freezer, and cabinets are full
• Difficulty throwing away food that has rotted
  • Poses a health risk because of exposure to viruses and bacteria

Food hoarding is exactly what it sounds like, and it manifests in two main ways. One side of food hoarding involves having a full freezer, refrigerator, and pantry yet continuously shopping for more food. The other side is the difficulty in throwing away expired or spoiled items. People might keep moldy or rotten food in their pantry or refrigerator, not wanting to waste it. More seriously, some may consume this spoiled food to avoid waste, which can result in illness. This behavior is a serious problem and can lead to what is known as garbage hoarding.

Garbage

• An inability to discard garbage, waste, or trash
• Rummage through other people’s trash to find things to bring back home
• Can be dangerous if they cannot decipher between harmful waste and items of value
• May collect common household items thrown away as trash that contain potentially harmful chemicals

Full disclosure: I've done this myself. It's the inability to discard garbage, but it also includes rummaging through other people's trash to find things to bring home. For instance, I once found a perfectly functional pool lounger that matched the two I already had, so I took it. While this might seem relatively harmless, it becomes problematic when someone regularly goes through trash and retrieves items like cups or spoons, as I mentioned earlier with the resident in assisted living.

The danger lies in the inability to distinguish between useful waste and harmful waste. Additionally, bringing these items into one's living space can introduce insects, vermin, or other pests, creating further health hazards.

Recycle

• Fear of waste
• Often have plans to haul to a recycling center
• Some have plans to fix or otherwise repurpose
• Eventually want to pass their items on to other people
  • May find it difficult to part with items
  • May not find people who will take items

Recycle hoarding is similar in nature. This behavior often stems from a fear of waste, with individuals intending to take items to a recycling center but being unable to do so due to mobility challenges, lack of transportation, or time constraints. They may also believe they will fix or repurpose these items. For example, shows like "Flea Market Flip" depict people buying or finding items to refurbish and sell.

However, in reality, recycle hoarders often struggle to part with their collected items, and others may not want their "junk." This results in an accumulation of items that were intended for recycling but never actually leave the hoarder's possession.

Paper

• Have difficulty discarding paper that they have accumulated
  • Bills, invoices, books, newspapers, magazines
• May create fall, fire, or tripping hazards
• Can lead to injury or death

Next, we move on to paper hoarding, which is a very real and common struggle. Paper tends to accumulate in the form of bills, invoices, books, newspapers, magazines, junk mail, and catalogs. This accumulation poses significant risks, including fire hazards and tripping hazards, depending on where the paper is stored.

A major concern with paper hoarding is the financial impact. Important documents, such as the electric bill, trash bill, or heating bill, can get buried under stacks of paper and go unpaid. This often leads to utilities being shut off or other financial issues arising from missed payments.

Sentimental

• Longing for the past – letting go of an item is letting go of a part of themselves
• Reasons include:
  • Remind them of loved ones
  • Remind them of specific places or adventures
  • From a certain time period
  • They were deprived of things at some important time in their lives

Sentimental hoarding is another common issue, and I must admit, mea culpa once more. This involves amassing items because they remind us of specific times, places, or people, such as memories of our children when they were young, vacations, or loved ones. Often, the person collecting these items feels a deep emotional attachment because they were deprived of those times in their lives.

This attachment makes them very uncomfortable when someone else touches or moves these items, even if it’s just to borrow them. For example, a person may be unwilling to lend out baby clothes, fearing that letting go of the item means letting go of a part of themselves. This excessive emotional attachment makes it extremely difficult for them to part with these possessions.

Collector

• Pick a subject and try to hold onto as many of these items as possible
• Typically, keep anything related even slightly to their topic of interest

Let's discuss the difference between collecting and hoarding. A collector typically chooses a subject, such as toy cars, snow globes, or baby dolls, and seeks to acquire as many items as possible within that category. However, when this behavior becomes excessive, it can transition into hoarding.

In cases of hoarding, it's not just about accumulating whole items. For example, when I worked in home care many years ago, I encountered someone who collected eyeglasses and baby dolls. But instead of keeping the complete items, they hoarded parts of them, such as the arm or head of a doll, a single lens from a pair of spectacles, or a nose piece or stem. These pieces and parts accumulated in large numbers, highlighting the difference between a structured collection and indiscriminate hoarding.

Animal

• Obtains and keeps unhealthy quantities of animals to the point where they cannot provide a safe environment for their animals
• Dangerous environment because animal waste can cultivate bacteria, viruses, and parasites
• Resources are exhausted, leading to an unhealthy environment
• The following responsibilities of animal care are typically overlooked in animal hoarding cases:
  • Grooming
  • Animal waste maintenance
  • Feeding
  • Pest/Flea/Heartworm Protection
  • Proper exercise for the animals

Many of us are familiar with animal hoarding, another form of hoarding. This involves keeping an unhealthy quantity of animals, often driven by a desire to share the love for these animals by collecting as many as possible. However, this behavior can lead to significant problems when resources are exhausted, making it impossible to properly care for the animals.

In many cases, individuals may acquire animals that are not suitable for their living environment, such as exotic pets that require specific care. This results in an unhealthy living situation where animals are not groomed properly, and feces, waste, and fleas accumulate. 

Additionally, veterinary care is expensive, and neglect leads to severe health issues for the animals. The environment becomes increasingly unhealthy for both the animals and the individuals living in it.

Extreme

• Most rooms are useless
• Often feel embarrassed by the clutter
  • Do not permit friends, family, or repair people into their homes
• Highest risks of being injured
• Clutter is a breeding ground for mold, roaches, and other pests.

The final type of hoarding we will discuss is extreme hoarding, which is often depicted on TV shows like "Hoarding: Buried Alive." This form of hoarding is not the norm but represents the most severe cases where most of the living space becomes unusable. 

In extreme hoarding situations, essential areas of the home are rendered non-functional. Individuals might be unable to use their stove, oven, bathtub, closet, kitchen, couch, or even their bed. This severely impacts their hygiene and overall ability to perform activities of daily living (ADLs).

People with extreme hoarding issues often feel a deep sense of embarrassment and are acutely aware of the severity of their situation when others react with shock upon seeing their living conditions. Consequently, they tend to isolate themselves, not allowing family, friends, or repair people into their space. This means essential repairs, like fixing a broken hot water tank or addressing a gas leak, go unaddressed, compounding the problem.

Moreover, these environments often become breeding grounds for health hazards such as black mold, roaches, ants, rats, and mice. The presence of these pests, along with structural issues caused by the clutter, poses significant risks of injury and health complications.

Difference Between Hoarding and Collecting

• Often begins as a usual collection
  • Those with mental health issues may gradually move towards hoarding behaviors as a coping method.
• People who collect search out specific items, and organize and display them.
• Collections are not usually cluttered and do not cause distress.
• Collectors derive pleasure, not shame or guilt.
• A hoarder’s items are often difficult to find.
• Compulsions and obsessions associated with hoarding make people feel ashamed or embarrassed.
• Hoarders accumulate for the joy of possession.
• Intensity distinguishes them from collectors
• A hoarder will not invite others into their space.

Is there a difference between hoarding and collecting? Absolutely. Hoarding often starts as collecting but then escalates to a different level. 

People who collect, whether stamps, cars, or any other items, actively seek out and acquire them. As a collector of cars myself, I can attest that my collection is displayed proudly and well-maintained, bringing me a great deal of pleasure. Collectors enjoy showing their collections to others, and these items are usually organized and cared for.

Hoarders, on the other hand, experience a very different dynamic. Their possessions accumulate in a cluttered, disorganized manner, and they often feel shame and guilt about their situation. The accumulation is not for the joy of the items themselves but for the sake of having them. This intensity and the resulting chaos distinguish hoarding from collecting. Unlike collectors, hoarders are unlikely to invite others into their space to showcase their possessions, which often include snow globes, nutcrackers, or other items, because of the embarrassment associated with their living conditions.

Risk Factors for Hoarding

• Personality
• Family history
• Stressful life events

Are there risk factors for hoarding? Absolutely. Personality traits are a significant factor. Hoarders often struggle with making decisions, attention, organization, and problem-solving.

Family history also plays a crucial role. There is a strong association between having a direct family member, such as a parent or sibling, with hoarding tendencies and developing the disorder oneself.

Stressful life events are another major risk factor. Hoarding can serve as a coping mechanism for those who have experienced trauma. This could be the death of a loved one, a divorce, losing possessions in a fire, or growing up in an impoverished situation without certain things, leading to an urge to accumulate those items later in life.

Reasons Why People Hoard

• Hoarding occurs for three primary reasons:
  • An intense personal attachment to objects (or even trash) that others see as trivial
  • A belief that many items have intrinsic value (such as artwork found objects like driftwood)
  • An assumption that potentially useful items should be saved for “a rainy day”

Reasons why people hoard are varied, and we've touched on many of them already. However, it's important to note that hoarding can occur at any age. While it is most problematic for seniors, many older adults exhibit hoarding tendencies earlier in life, which often intensify as they age. For seniors, hoarding can become a way to hold onto their past or maintain a sense of control, especially in senior living environments. This behavior provides them with a means to preserve their identity and autonomy in the face of aging and potential loss of independence.

• Irrational beliefs about objects; distressing to get rid of things
• Sentimental value
• Fear of running out of things
• Disposal is wasteful
• Family history or genetics
• A specific traumatic event
• Another mental health condition
• Decreased energy or mobility to keep up with possessions
• Loneliness, isolation
• Difficult feelings
• Perfectionism and worrying
• Childhood experiences

We've covered much of this already, but let's delve into the distress caused by hoarding. One significant factor is an individual's upbringing and emotional state. For example, someone might hoard items out of fear of running out, stemming from a childhood where they lacked certain necessities. This fear drives them to accumulate items to ensure they won't face a shortage in the future.

Financial concerns also play a role; a person might hoard food to avoid wasting it, driven by the need to save money. Trauma is another critical factor. Experiences of loneliness, isolation, long periods of stress, abuse, bullying, or harassment can lead individuals to hoard as a coping mechanism.

Physical limitations, such as decreased energy or mobility, especially as one ages or has a physical disability, can also contribute to hoarding. These limitations make it challenging to clean and organize, resulting in an untidy living space. Loneliness and social isolation further exacerbate the issue, creating a cycle of hoarding and distress.

Health Problems Leading to Hoarding

• Depression
• Anxiety disorders
• Obsessive-compulsive disorder (OCD)
• Attention-deficit/hyperactivity disorder (ADHD)
• Brain injuries
• Dementia
• Schizophrenia
• Personality disorders
• Alcohol or drug addiction
• Prader-Willi syndrome (a genetic condition)
• Poor decision-making, procrastination, and a lack of organization
• Limited social interactions
• It’s easy for others to see hoarders as dirty or lazy, and those judgments can be difficult for them to hear and handle.

A study, possibly out of California, showed that 15% of individuals diagnosed with depression also exhibit hoarding behaviors. This statistic underscores the connection between mental health and hoarding.

As occupational therapy practitioners (OTPs), it's crucial to address the underlying issues such as loneliness, social isolation, and lack of meaningful, purposeful engagement. Many hoarders struggle with difficult feelings like perfectionism and worry, fearing mistakes, and often having Type A personalities. These traits can exacerbate hoarding behaviors.

Hoarding is often linked to various health problems, including mental illnesses, cognitive issues, and psychosocial problems. It's easy to judge hoarders as dirty or lazy, but these labels are harmful and perpetuate a self-fulfilling prophecy. Hearing these judgments repeatedly can lead individuals to internalize them, worsening their condition.

Our role as OTPs is to promote emotional health and keep biases and judgments in check. This includes educating and working with families, friends, and other providers to foster understanding and support for those who hoard.

I recently discussed this with an attorney friend handling an estate with family members who were hoarders. The firm eventually dropped the case, unable to proceed unless the family cleared the clutter. This situation highlights the importance of approaching hoarding with empathy and understanding, recognizing it as a serious illness that requires support rather than abandonment. Walking away offers no benefit and fails to address the root of the problem.

Effects of Hoarding

• In an assisted living situation, there is literally and figuratively little space for hoarding behaviors.
• Health code is stricter and does not allow for a collection of excess materials to accumulate.
• Disorganized piles or stacks of items
• Items that crowd and clutter the space
• Buildup of food or trash to large, unsanitary levels
• Distress or problems functioning
• Conflict with others
• Relationship issues
• Difficulty organizing items

Just to share a story from this morning: we typically see hoarding behaviors in people's homes, especially in home care settings, but it also occurs in assisted and independent living environments. These spaces are often the individual's personal domain, where they can use their space as they see fit. However, in skilled nursing facilities, the opportunity for hoarding is more limited due to stricter regulations by state departments of health, which mandate what can and cannot be done for health and safety reasons.

In assisted or independent living, the approach to hoarding can be different. For instance, I had a conversation in California where someone mentioned a resident with a large collection of art supplies. These supplies were neatly organized in bins and stacked on shelves. The provider insisted that the resident needed to get rid of them, claiming there was too much. I challenged this perspective by asking whether it was truly necessary to dictate how the resident should keep their space if it was well-organized and not causing any issues. This prompted a moment of reflection for the group, highlighting that if an individual's space is organized and functional, it may not be appropriate to impose our standards on their personal living area.

Moving on to the effects of hoarding, we've discussed its significant impact, including conflicts, relationship issues, and sanitation problems. These consequences are mostly intuitive but are important to keep in mind when addressing hoarding behaviors.

Physical

• Difficulty walking safely through a room
• Increased risk of falls
• Injury or being trapped
• Family conflicts
• Refusal of help and increased social isolation
• Unsanitary living conditions
• Fire risk
• The inability of emergency responders to reach them
• Expired food in the refrigerator or pantry
• Poor nutrition or food poisoning
• Poor medication compliance
• Poor work performance.
• Struggle to find things you need
• Avoid letting people into the space
• Find it hard to keep clean
• Find it hard to cook and eat food
• Legal issues
• Other mental health disorders

Hoarding can lead to various physical issues, many of which have legal, nutritional, and safety implications. For instance, animal hoarding can result in legal problems due to health and safety violations. Poor nutrition is another concern, as individuals might not be able to access or store food properly, or they may consume expired or unsafe food items. 

Fire risks are significantly increased due to the accumulation of flammable materials, and clutter creates a high fall risk, especially for seniors. These hazards highlight the important role that rehabilitation professionals can play in addressing hoarding behaviors. By focusing on safety, nutrition, and mobility, rehab can provide essential support to individuals struggling with hoarding, helping to mitigate these risks and improve their quality of life.

Social/Emotional

• Unpaid bills hiding in piles of mail
• Difficulty managing daily living in a cluttered environment
• Frustration and stress from lack of organization
• Loneliness and social isolation
• Shame

Hoarding often results in unpaid bills hidden in piles of mail, making financial management difficult. The cluttered environment complicates daily tasks, leading to frustration and stress. This disorganization causes significant emotional distress.

Hoarders frequently experience loneliness and social isolation, withdrawing due to the state of their living space. A deep sense of shame prevents them from seeking help, worsening their condition. These factors highlight the extensive impact of hoarding on both physical and emotional well-being.

Misconceptions and Stigma

• Media referring to panic buying as hoarding
• People calling themselves 'hoarders' because they have clutter
• Media shows extreme hoarding
• Hurtful assumptions about hoarding
• Hoarding is the same thing as being disorganized
• Cleaning will immediately solve the problem
• Hoarders are lazy, dirty, and unmotivated
• Hoarders are collectors
• Hoarders can’t stop hoarding
• Hoarding can be treated by a single medical professional
• Public stigma develops from the general population’s beliefs in stereotypes about a group.
• When an individual internalizes public views, this is referred to as self-stigma.
• Stigma may prevent those with HD from seeking treatment.
• Three additional levels of stigma
  • Difference (“They aren’t like me.”)
  • Disdain (“They are bad.”)
  • Blame (“They are to blame.”)

The stigma and misconceptions surrounding hoarding are significant issues. The media often misrepresents hoarding, equating it with panic buying or stockpiling for emergencies, which are not the same. People might call themselves hoarders simply because they have clutter, but clutter differs from hoarding. The media tends to focus on extreme cases, further skewing public perception.

Cleaning alone won't solve hoarding. Simply clearing out the clutter without addressing the underlying issues only leads to the clutter returning. Cognitive behavioral interventions and motivational interviewing are essential for uncovering the reasons behind hoarding. Hoarders can stop hoarding, but it requires a comprehensive approach involving a team of professionals, including psychologists, psychiatrists, social workers, spiritual advisors, nurses, family members, and therapists.

Hoarders often internalize negative perceptions, feeling judged and blamed for their situation. Recognizing hoarding as a mental illness is crucial, as it helps to approach the issue with empathy and understanding, encouraging individuals to seek help rather than withdraw.

How Do I Know If I'm Hoarding?

• Are living conditions cramped?
• Is it difficult to move from room to room?
• Can you find open spaces to sit down or place your purse?
• Are countertops, sinks, and tables piled with dirty dishes and other items?
• Does the garage or basement appear to be a dumping ground?
• Are out-of-date medications and expired food items creating a mess?

To determine if you're hoarding, consider whether your home has become a dumping ground for items. Can you easily move from room to room, or are the paths blocked by clutter? If emergency services needed to reach you, would they be able to navigate your space? Reflect on whether you have open spaces where you can sit down comfortably. Many hoarders suffer from clutter blindness, making it difficult to recognize the extent of their accumulation.

• While hoarding, you might:
  • Only realize you are hoarding when other people are in your space.
  • Not being able to tell you're hoarding – sometimes called 'clutter blindness'
  • Realize that it's affecting your life but find it hard to stop or know how to change

Again, they don't really realize how bad it is or what the extent is until other people come into that space.

What If I Don't Know I'm Hoarding?

• May not see it as a problem
• Taking part in treatment can be challenging
• May take multiple attempts to begin a conversation about changing their habits
• How you approach the problem can make a big difference.
• Pushing too hard, taking charge, or cleaning may alienate the person, destroy trust, or add to conflict.
• Show empathy and support.

If you've ever worked with someone who has a hoarding disorder or had a family member with this condition, you know they often don't see it as a problem. As occupational therapy practitioners, our approach involves having ongoing conversations, gradually introducing and reintroducing the topic until they start to recognize the need for change. This process requires patience and persistence, as it can take multiple discussions before they begin to acknowledge the issue.

For example, I recently experienced this with my parents, who are considering moving. When I opened their desk drawers, I found an overwhelming amount of items they had been hoarding. My initial goal for them was simple: clean out the desk. It took at least seven or eight conversations just to get them to consider disposing of anything.

It is crucial to approach hoarding with compassion and empathy. As practitioners, we don't push, take charge, or simply clean the house. Instead, we focus on understanding the underlying reasons for hoarding and developing a trust-based relationship. This trust is essential as we begin the process of decluttering, helping the individual feel supported and understood.

Assessments

At least four standardized assessments are available in the public domain for you to use.

UCLA Standardized Assessment

• The Structured Interview for Hoarding Disorder
  • Six criteria are needed to evaluate the presence of hoarding disorder and its two specifiers.
  • For a diagnosis of hoarding disorder, all six criteria must be endorsed.

One of the most effective tools for assessing hoarding disorder is the UCLA Hoarding Severity Scale. There are six criteria in this assessment, and all must be met for a diagnosis of hoarding disorder. These criteria help to comprehensively evaluate the severity and impact of hoarding behaviors.

• Criterion A
  • Persistent difficulty discarding or parting with possessions, regardless of their actual value.
  • Do you experience difficulty discarding or parting with possessions?
  • How long have you had this problem?
  • What items do you find most difficult to discard?
• Criterion B
  • This difficulty is due to a perceived need to save items and to distress associated with discarding them.
  • Do you intentionally keep these items? Are they important or useful for you?
  • Do you generally feel distressed or upset when discarding possessions?
• Criterion C
  • The difficulty discarding possessions results in the accumulation of possessions that congest and clutter active living areas and substantially compromised their intended use. If living areas are uncluttered, it is only because of the interventions of third parties.
  • Do you have a large number of possessions that congest and clutter the main rooms in your home?
  • Because of the clutter or number of possessions, how difficult is it for you to use the rooms in your home?
  • Have other people, such as family members or local authorities, helped you to remove or forcibly removed some of your possessions? If so, how cluttered was your house or room before their intervention?
• Criterion D
  • The hoarding causes clinically significant distress or impairment in social, occupational, or other important areas of functioning including maintaining a safe environment for self and others.
  • Do the difficulties discarding or the clutter cause you distress?
  • Do the difficulties discarding or the clutter interfere with your family life, friendships, or ability to perform well at home or work?
• Criterion E
  • The hoarding is not attributable to another medical condition, for example, brain injury, cerebral vascular disease.
  • Do you have any General Medical conditions, a history of head injury or cerebrovascular disease?
  • Did you have difficulties with discarding or clutter before you became ill?
• Criterion F
  • The hoarding is not better explained by the symptoms of another mental disorder.

Of course, we're not making the diagnosis ourselves. However, we can utilize the UCLA Hoarding Severity Scale as an adjunct to our occupational profile to identify a hoarding disorder and determine how to address it. 

The first criterion is persistent difficulty discarding items, regardless of their value. Questions related to this might include, "How long have you had this problem?" and "What items do you find difficult to discard?"

Criterion B involves a perceived need to save items, which causes distress. Questions here might include, "Are you intentionally keeping these items?" and "Do you believe they are important or useful?"

The third criterion (C) is the accumulation of possessions, leading to congestion and clutter. If there is no clutter, it might be because a third party has cleared it out. Relevant questions include, "How difficult is it to use certain rooms in your home?" and "Has someone come in and decluttered for you?"

Criterion D is that the hoarding causes significant distress and impairs social, occupational, or other important areas of functioning. 

Criterion E specifies that the hoarding is not attributable to another medical condition, such as a brain injury, stroke (CVA), or dementia. 

Finally, Criterion F states that hoarding is not better explained by another mental disorder, such as an anxiety disorder, bipolar disorder, or schizophrenia. 

These six criteria, along with their accompanying questions, provide a comprehensive framework for understanding and addressing hoarding behaviors. This approach allows us to develop a tailored intervention plan that addresses the individual's specific needs.

• Specifiers
  • Excessive Acquisition Specifier
  • Insight Specifier
  • Risk Assessment

There are also some specifiers to consider. The first is the excessive acquisition specifier, which involves determining whether the individual has accumulated many specific items or items that they don't need or can't use.

The next specifier relates to the individual's insight. Assessing whether their insight is good, fair, poor, or absent (possibly delusional) helps understand their awareness and perception of their hoarding behavior.

Finally, there is a risk assessment specifier, which I find particularly valuable as a practitioner. This includes evaluating potential hazards such as fire risks, blocked exits, fall risks, insect infestations, unhygienic conditions, and the cleanliness of the individual. It also involves assessing the neglect of people or animals in the environment. This comprehensive risk assessment helps prioritize safety and health concerns in the intervention plan.

• Other Inventories:
  • Saving Inventory
  • Hoarding Severity Scale
  • ADL in Hoarding Scale
  • Saving Cognitions Inventory
  • Compulsive Acquisition Scale
  • Home Environment Index

Along with the UCLA assessment, there are other valuable inventories. One is the Saving Inventory, which assesses the extent and nature of the items being hoarded. Another important tool is the ADL Inventory, which specifically examines how hoarding behavior impacts an individual's ability to perform activities of daily living. This helps identify the functional impairments caused by hoarding.

The Home Environment Index evaluates the living space, identifying risk areas and potential dangers. This is crucial when intervening, as safety and health are primary concerns. Using "I" statements, such as "I am concerned about your safety," helps convey the importance of these issues in a non-confrontational manner. For example, highlighting that emergency medical services might have difficulty accessing the home underscores the need for a safer environment.

Hoarding Rating Scale

The next one is the Hoarding Rating Scale, from zero to eight. There are five questions with this.

• Because of the clutter or number of possessions, how difficult is it for you to use the rooms in your home?
• To what extent do you have difficulty discarding (or recycling, selling, giving away) ordinary things that other people would get rid of?
• To what extent do you currently have a problem with collecting free things or buying more things than you need or can use or can afford?
• To what extent do you experience emotional distress because of clutter, difficulty discarding or problems with buying or acquiring things?
• To what extent do you experience impairment in your life (daily routine, job / school, social activities, family activities, financial difficulties) because of clutter, difficulty discarding, or problems with buying or acquiring things?
• Scored from 0-8
  • 0=none
  • 8=extreme
  • 4=moderate
• Criteria for Clinically Significant Hoarding
  • A score of 4 or greater on questions 1 and 2, and a score of 4 or greater on either question 4 or question 5

If you have a score of four or greater on these first two questions on this slide, or if you have a score of four or greater on either of these two questions, you might have a hoarding disorder.

• Interpretation of HRS Total Scores (Tolin et al., 2010):
  • Mean for Nonclinical samples: HRS Total = 3.34; standard deviation = 4.97
  • Mean for people with hoarding problems: HRS Total = 24.22; standard deviation = 5.67
  • Analysis of sensitivity and specificity suggest an HRS Total clinical cutoff score of 14.
• Criteria for Clinically Significant Hoarding (Tolin et al., 2008):
  • A score of 4 or greater on questions 1 and 2, and a score of 4 or greater on either question 4 or question 5.

Anything 14 or higher would probably be indicative of a hoarding disorder.

Saving Inventory-Revised (SIR)

• Questions are rated using the following scale:

Let's move on to the Saving Inventory-Revised. This assessment can be administered in two ways: through an interview, or as a self-scoring tool where the individual completes it and then reviews the results with you, possibly in collaboration with psychology or social work. 

The inventory consists of 23 questions, using a specific rating scale. These questions help to gauge the extent and nature of the hoarding behavior, providing a detailed understanding of the individual's relationship with their possessions. The responses will offer insights into the severity and impact of their hoarding, guiding the development of an effective intervention plan.

• How much of the living area in your home is cluttered with possessions? (Consider the amount of clutter in your kitchen, living room, dining room, hallways, bedrooms, bathrooms, or other rooms).
• How much control do you have over your urges to acquire possessions?
• How much of your home does clutter prevent you from using?
• How much control do you have over your urges to save possessions?
• How much of your home is difficult to walk through because of clutter?
• To what extent do you have difficulty throwing things away?
• How distressing do you find the task of throwing things away?
• To what extent do you have so many things that your room(s) are cluttered?
• How distressed or uncomfortable would you feel if you could not acquire something you wanted?
• How much does clutter in your home interfere with your social, work or everyday functioning? Think about things that you don’t do because of clutter.
• How strong is your urge to buy or acquire free things for which you have no immediate use?
• To what extent does clutter in your home cause you distress?
• How strong is your urge to save something you know you may never use?
• How upset or distressed do you feel about your acquiring habits?
• To what extent do you feel unable to control the clutter in your home?
• To what extent has your saving or compulsive buying resulted in financial difficulties for you?
• How often do you avoid trying to discard possessions because it is too stressful or time-consuming?
• How often do you feel compelled to acquire something you see? e.g., when shopping or offered free things?
• How often do you decide to keep things you do not need and have little space for?
• How frequently does clutter in your home prevent you from inviting people to visit?
• How often do you actually buy (or acquire for free) things for which you have no immediate use or need?
• To what extent does the clutter in your home prevent you from using parts of your home for their intended purpose? For example, cooking, using furniture, washing dishes, cleaning, etc.
• How often are you unable to discard a possession you would like to get rid of?

The Saving Inventory-Revised uses a modified Likert scale with ratings ranging from None, A little, Moderate, Most, to All/Complete. This scale is applied to 23 questions designed to assess hoarding behavior over the past week. 

For instance, individuals are asked how much control they have over their urges to acquire items and how much of their home is difficult to walk through. They rate how distressing it is to throw things away and how much hoarding interferes with their social life, work, or daily functioning. Questions also explore the strength of their urge to save items they may never use, whether hoarding has caused financial difficulties, and how often they feel compelled to acquire things they see or buy items they don't need. Additionally, the assessment looks at how often they are unable to discard something.

These questions provide a comprehensive view of the individual's hoarding behavior, guiding tailored interventions. The assessment can be administered via interview or as a self-scoring tool. Results are reviewed collaboratively, often involving psychology or social work professionals. This tool is available in the public domain, and its citation is provided for further reference.

Clutter Rating Scale

• International OCD Foundation
  • http://www.philadelphiahoarding.org/resources/Clutter Image Rating Scale.pdf

The Saving Inventory-Revised includes a visual assessment component based on photos, which helps determine the severity of hoarding behavior in different home areas. There are nine photos for each room type, and any rating of four or higher (on a scale from one to nine) indicates a potential hoarding disorder.

The first set of photos depicts kitchens. Ratings of four or above suggest significant clutter that impairs functionality and safety. Similarly, there are photo sets for bedrooms and living rooms, each helping to evaluate the extent of clutter in these areas. For additional spaces like sun porches or other rooms, the living room photo set can be used to assess the level of hoarding.

These photos provide a visual reference that aids in the assessment process, making it easier to identify problematic levels of clutter. This method, combined with the questions from the Saving Inventory-Revised, offers a comprehensive tool for evaluating hoarding behavior in residents or patients. The visual cues help facilitate discussions and guide interventions based on the specific needs and conditions of each individual.

Strategies to Address Hoarding

• When starting a conversation with a hoarder about their hoarding problem, remember to let the hoarder know that no item will be thrown or given away until the hoarder gives permission.
• The worst way to deal with hoarding behavior is to go through belongings without permission and throw everything away.
• Trust is essential in effectively helping an individual with hoarding behaviors.
• A strong, genuine rapport must be carefully established.
• A person needs to feel safe.
• Make the person a part of the process
  • Gently approach the idea of health and safety
  • Consider control issues
  • Draft an agreement
  • Cheer small victories
• Avoid the power struggle
• Assign a point person
• Work together and offer choices
• Control rash reactions and be compassionate
• Address social isolation
• Take it slow
  • Set small goals
  • Set a timer and try to tidy one area
  • Make a plan
  • Cancel things like magazine subscriptions or put up a 'no junk mail' sign
  • Establish rules
  • Explore new activities that don't involve buying or saving things
• Stay motivated
  • Find ways to track progress
  • Make things easier for yourself
  • Find support for related issues
  • Celebrate wins
  • Ask for help

Addressing hoarding requires a sensitive and collaborative approach. The most important thing to communicate at the start is that you will not touch or throw away any of their belongings without their permission. Building trust is crucial; without it, any progress will be short-lived. Simply going in and cleaning out their space while they are away will only result in the clutter returning, as the underlying issues have not been addressed.

Developing a rapport involves consistent conversations and reassurances about health and safety. It’s essential that the individual is part of the process. Taking control away from them can lead to resentment and a continuation of the hoarding behavior. Instead, encourage them to participate by explaining that if they don't, someone else might make decisions for them. Drafting an agreement can empower them and help establish a clear, collaborative plan.

Celebrate small victories to build momentum. For example, if they clear a table or a section of the floor, acknowledge and celebrate this achievement. This positive reinforcement can make them feel accomplished and motivated. Saying goodbye to items verbally can also help them emotionally detach and part with their belongings.

Avoid power struggles by ensuring the person feels in control and involved. Assign a point person they trust, which could be a social worker, family member, volunteer, or even a nurse. It's vital to work together and manage any initial impulses to quickly clear out the space.

Social isolation often exacerbates hoarding behaviors. Research from USC shows that 15% of individuals with depression also exhibit extreme hoarding behaviors, compared to 4% of the general population and 6% of seniors. Addressing loneliness and encouraging social interaction can be beneficial.

To make the process manageable, set a timer or use music to create short, structured periods of decluttering. Simple changes, like canceling magazine subscriptions or opting out of junk mail, can reduce incoming clutter. Establish rules, such as discarding items not used in the past year (or two years, for a more generous timeline).

Introduce new activities that don’t involve acquiring items. Encourage outings, hobbies, or interests that provide fulfillment without adding to the clutter. For example, suggest watching a film, visiting a museum, walking, fishing, or reading a book.

A resident shared a powerful quote: "I started to try to declutter. It wasn't easy. I spent days crying, trying to find something in my space that I could part with just to get that ball rolling. Eventually, I managed to make a start, and it felt great. The more floor I could see, the better." This underscores the importance of starting small and progressing slowly.

Before and after pictures can provide visual motivation. Make the process easier by addressing mobility challenges with tools like reachers or providing seating. Seeking help and finding support, whether from peer groups or counseling services, can also be incredibly beneficial. 

In summary, addressing hoarding involves patience, empathy, and a collaborative approach. By building trust, celebrating small successes, and involving the individual in the process, you can help them make meaningful progress toward a safer, more organized living environment.

Cleaning Your Senior's Home

• Practice safety first
• Give them a sense of control
• Remove items immediately
• Celebrate victories
• Set realistic goals
• Get a medical evaluation

Cleaning a senior's home, or anyone's home requires a methodical and compassionate approach, especially when dealing with hoarding. Practicing safety first is paramount. Start by addressing the most dangerous areas, such as those posing tripping hazards, fire risks, or containing out-of-date medications. Medications can often be found hoarded in medicine cabinets or under vanities, posing serious health risks if taken unintentionally or in combination with other drugs.

A practical strategy involves using three bins: one for items to keep, one for items to donate, and one for items to toss. Initially, it may be challenging to fill the donate and toss bins, as there is often a strong attachment to possessions. It might take several passes through the area to start making progress. The key is persistence and patience.

Once the bins are filled, it's crucial to remove the items immediately. Donations should go straight to the car and be delivered to the donation center promptly. Items for disposal should be taken to a dumpster far from the home to prevent them from being retrieved and brought back inside.

Celebrate small victories, such as clearing a specific area, and set realistic goals. Recognize that the clutter did not accumulate overnight and will not be cleared overnight either. A slow, methodical approach is essential for lasting change.

This process not only helps in decluttering but also ensures safety and promotes a healthier living environment for the individual.

Hoarding and Dementia

• Make rummaging productive
  • Restricting access to all drawers and cabinets can be distressing for a person who enjoys rummaging.
  • Make rummaging a stimulating activity.
  • If the individual enjoys sorting and organizing items, make this an activity.
  • Offer items from their past (e.g., yearbook, family photo album).
• Protect valuables
  • Put items that cannot be easily replaced in a safe, locked location.
  • Get duplicates or “dummies” of items that are commonly misplaced.
• Identify and eliminate hiding places
  • Identify the hiding places
  • Attach trackers to easily lost items
  • Check hiding places frequently for lost items
  • Eliminate some common hiding spots by introducing drain traps, disposal strainers, and drain screens
  • Install hard-to-open latches or locks on the doors, use a stop sign or camouflage
  • Out of sight, out of mind effect
  • Lockable mailbox

Hoarding behaviors often occur in individuals who have dementia, including Alzheimer’s disease. These individuals might engage in rummaging, which is a common behavior. While rummaging itself isn’t problematic, it’s crucial to make it safe for the person.

One approach is restricting access to drawers and other areas where they might find dangerous or inappropriate items. However, completely restricting access can be distressing. Instead, provide a safe space for rummaging, such as a bookshelf, credenza, or dresser filled with safe and stimulating items. If the person enjoys organizing, sorting, and stacking, encourage these activities as they are meaningful and engaging.

Individuals with dementia might hoard items to hold onto their past. For instance, my dad keeps every program from his class reunions. This behavior is often about preserving memories rather than the items themselves. Providing them with meaningful memorabilia, like yearbooks, family photo albums, or movies, can help.

For valuable items like tax records, passports, and jewelry, it’s important to store them in a safe location. Replace commonly misplaced items with dummy versions to avoid loss. For example, provide extra sets of keys or remote controls.

Identify common hiding places for items, such as under carpets, inside shoes, coat pockets, purses, the stove, washer, dryer, mailbox, and trash compactor. Regularly check these areas for lost or valuable items. Implement preventative measures like drain screens or traps to avoid items being misplaced in sinks or garbage disposals.

If certain cabinets or pieces of furniture are frequently accessed, consider repositioning them to limit access or using locks and latches to secure them. Lockable mailboxes can prevent the person from accessing neighbors’ mail.

These strategies ensure that rummaging and hoarding behaviors in individuals with dementia are managed safely and compassionately, reducing distress and preserving important items.

Do's of Communicating with a Hoarder

• Connect with the individual
• Seek professional help
• Continue to talk about the situation
• Talk about safety
• Agree that the items are important
• Keep everything confidential
• Ask “why” in a respectful tone
• Promote donation
• Be patient
• Hire a professional service
• Educate yourself about hoarding disorder first
• Listen and use the same language when talking about their possessions
• Focus on the safety aspects
• Offer to help
• Encourage the hoarder to seek professional help
• Use “I” statements
• Listen actively
• Offer support

In our final section, we'll discuss some key do's and don'ts for communicating effectively with someone who hoards. We've touched on some of these points before, but it's important to reinforce them.

Firstly, it’s essential to acknowledge the emotional connection the individual has with their possessions. Even if we don’t see the value, we must agree that these items are important to them and use their terminology. If they refer to something as their collection or favorite items, we should use the same language to show respect and understanding.

Confidentiality is crucial. Often, individuals share sensitive information with us as occupational therapy practitioners. We should thank them for sharing and ask for permission to relay relevant information to the care team, except in cases of mandatory reporting. Breaching confidentiality can lead to a loss of trust.

Understanding the underlying reasons for hoarding is vital. Trauma-informed care teaches us to consider what experiences led to this behavior. Respect and compassion are essential when discussing these topics.

When appropriate, suggest hiring a professional service to help with organization and decluttering. This can provide the individual with structured support and expertise.

Education is important for both the individual and ourselves. Using their language, listening actively, and offering continuous support throughout the process are key. We must be present from the beginning to the end, supporting them emotionally as they part with their possessions. This includes using “I” statements to express our feelings and concerns without blaming them. For example, saying, “I feel overwhelmed when...” or “I feel embarrassed to bring friends over because of the clutter,” helps communicate personal impacts without judgment.

Active listening helps develop a productive dialogue and trust. Recovery from hoarding is a gradual process, requiring patience and understanding. It's important to remember that setbacks can occur, and ongoing support is crucial to prevent relapses into old behaviors.

To summarize, effective communication with someone who hoards involves empathy, respect, active listening, and consistent support. By building trust and maintaining a compassionate approach, we can help them navigate the challenging journey of decluttering and improving their living environment.

Don'ts of Communicating with a Hoarder

• Make fun of the hoarder’s situation
• Say, “Let’s get rid of all this ‘stuff’”
• Get angry
• Try to reason right away
• Touch the hoarder’s items
• Treat the hoarder like a child
• Treat hoarders like criminals
• Make a large task list for the hoarder
• Ask “Why?” in a disrespectful tone
• Let this cause you stress
• Be judgmental
• Argue with the person
• Try to minimize the challenge
• Be discouraging
• Tell the person what to discard or touch their possessions without consent
• Enable their hoarding
• Clean up after the hoarder

When working with someone who has a hoarding disorder, it's crucial to approach the situation with empathy and respect. Always communicate respectfully, using the same terminology the individual uses for their possessions. Maintaining confidentiality is essential; respect their privacy and seek permission before sharing any information with others.

Practice compassion and understand that hoarding often stems from trauma or emotional distress. Encourage their involvement in the decluttering process to help them maintain a sense of control and ownership. Celebrate small victories and acknowledge any progress, no matter how small. Use "I" statements to express concerns, such as "I feel overwhelmed when..." to avoid sounding judgmental. Offer continuous support throughout the entire process, providing both emotional and practical assistance.

Suggest new activities that don’t involve acquiring more items. Always address safety first by focusing on removing immediate dangers like tripping hazards, fire risks, and expired medications. Implement small steps and break down tasks into manageable actions to avoid overwhelming them.

Avoid making fun of them, as mocking or belittling their behavior will only cause more distress. Never discard their belongings without permission, as this can lead to a loss of trust. Manage your frustration, especially if you are a loved one living in the same space, as anger only exacerbates the problem. Reasoning too quickly may come off as judgmental since this behavior is their norm.

Respect their space and belongings by not touching items without consent, and never treat them like children or criminals. Avoid overwhelming them with large task lists; focus on small, achievable goals instead. Manage your own mental health through self-care practices like yoga, meditation, or journaling to avoid stress.

Understand that hoarding is a complex issue that cannot be solved simply by clearing away items. Avoid arguing or minimizing the problem, and don't enable hoarding by bringing in more items. Encourage family members to find alternative ways to celebrate special occasions. Lastly, don't clean up after them, as this reinforces dependency and doesn't address the underlying issue. By following these guidelines, you can create a supportive environment that fosters trust and encourages positive change.

How Hoarding Affects Others

• It is easy to feel emotionally overwhelmed, frustrated, upset, or stressed.
• Concerns about financial implications, health problems, and safety risk
• Anger at the loss of livable space
• Helping someone goes beyond cleaning out their clutter.

As we wrap up, it's important to acknowledge the impact hoarding has on family members. While our primary role is to support the patient or resident, we can also extend our support to their families. We can discuss the financial implications of hoarding, the associated health problems, and the safety risks involved.

Pointing families toward helpful resources is crucial. Additionally, we should address their own stress management, suggesting strategies and practices that can help them cope with the emotional and physical strain of living with or supporting someone who hoards. By providing comprehensive support to both the individual and their family, we can help create a safer and more manageable environment for everyone involved.

Addressing Emotional Aspects

• Examine your own behavior.
• Keep your expectations realistic.
• Manage stress.
• Resolve conflict in a positive way.
• Focus on the person, not the possessions.
• Don’t make everything about hoarding.
• Highlight your loved one’s strengths.
• Address any underlying conditions.

We've already discussed the importance of examining our own behavior, and this is why implicit bias training is so crucial. Whether we realize it or not, we may harbor biases that contribute to the stigma and shame felt by individuals who hoard.

It's essential that both we and the family members of the person who hoards examine our behaviors. Conflict is natural in these situations, but it's important to resolve it positively. Focusing on the person rather than their possessions is key. Reflecting on their occupational profile, we should remember that they have a rich history and unique qualities that make them who they are. Our conversations shouldn't revolve solely around their clutter or hoarding behaviors.

Instead, we should identify their strengths and celebrate them, which can help boost their self-esteem. Recognizing and highlighting their positive attributes can make a significant difference in how they perceive themselves and their ability to change. This person-centered approach fosters a more supportive and empathetic environment, which is essential for effective intervention and long-term improvement.

Coping with Difficult Feelings

• Talk to someone
• Try peer support
• Keep a diary
• Take time to relax
• Try to take care of yourself

Here are some important reminders of things to do to cope with difficult feelings.

Approaches for Providers

• Provide mental health support immediately to new residents with hoarding behavior
• Make referrals for hoarding well in advance of anticipated state surveys
• Don’t purge rooms of belongings without the resident's consent
• Use a team approach
• Give the resident as much control as possible over the process
• Keep things in perspective
• Consider boxing (with permission) and stacking prior to the survey to give the appearance of a neat and orderly space
• Take charge of safety first
• Organize the clutter
• Make them part of the process
  • Three‑step plan
    • One bin to keep
    • One bin to donate
    • One bin for trash
• Immediately remove all items to be discarded
• Protect the resident’s rights
• Don’t push too hard
• Access community resources
• Involve mental health specialists

If you are a provider working with individuals who hoard, it’s crucial to always obtain consent before removing any items. Purging without the person's agreement is never acceptable. Sometimes, a practical solution is to box items up neatly and stack them within their living space. This approach keeps the environment orderly, especially if an inspection is imminent while ensuring that the individual can still see and access their belongings. This method reduces anxiety and maintains their sense of control over their possessions.

Safety and organization are paramount. Using the three-bin method—keeping, donating, and tossing—helps manage the process effectively. Items that are designated for removal should be taken out immediately to prevent retrieval. Balancing the individual’s rights with state and community expectations can be challenging. In such cases, contacting an ombudsman can provide guidance on how to navigate these complexities while respecting the person’s rights.

It’s important to avoid pushing too hard. People who hoard often feel embarrassed about their situation and may be more willing to accept help if it is offered respectfully and on their terms. Forceful interventions can damage trust and hinder progress. Instead, communicate clearly about what needs to happen and why, but always prioritize building and maintaining trust in your relationship with the individual. This trust is essential for making meaningful and lasting changes.

Offering General Support

• Use respectful language
• Don't focus on a total clean-up
• Listen to what they want
• Think carefully about gifts
• Don't pressure them to let you into their space
• Let them know you are there
• Include them in calls to authorities

We've covered much of this already, but I want to emphasize the importance of involving the individual in calls to authorities when necessary. If you need to contact authorities because the situation has escalated—such as having too many animals or severe health and safety risks—you should include the individual in this conversation. Let them know that the situation has reached a critical point and that a call must be made. Discuss options and allow them to make decisions whenever possible to maintain their dignity and trust.

Respect their decisions about what to keep and what to discard. Ensuring they are part of the process and that their preferences are honored helps maintain their sense of control and reduces the risk of escalating the situation further. This collaborative approach is essential for protecting their safety while also respecting their autonomy.

Helping to Clean or Clear

• Respect their decisions
• Don't take over their space
• Try to be patient
• Help them celebrate successes
  • “Discarding is never a simple yes-no process, and most items will be pondered over through several sort-throughs, over a period of months and years.”

It's essential to remember that the space and items do not belong to us; they belong to the individual. Patience is key, and celebrating small victories is crucial. A quote from a patient highlights this well: "Discarding is never a simple yes-no process, and most items will be pondered over through several sort-throughs over a period of years or months." This emphasizes the need for a gradual, respectful approach.

Avoid making threats, as they are often empty and counterproductive. For example, saying, "Mom, if you don't clean up, I'll move you to a nursing home," is likely not a realistic follow-through and can damage trust. Instead, approach the situation gently and understand that behavior change cannot be forced. The focus should always be on collaboration, respect, and patience to foster a supportive environment for positive change.

Supporting Those Who Don't Think They Hoard

• Be gentle – you can't force someone to change their behavior
• Help them to seek treatment and support
• Help them stay safe
• Avoid making threats
  • “I feel that my mum is at risk in the event of a fire or if she has a medical emergency. The simple daily tasks that we all take for granted (getting into bed, cooking a meal, going up the stairs) are all made more difficult (and dangerous) by the amount of stuff in her home and her attachment to it.”

Here’s an example of a daughter speaking about her mother: "I feel that my mom is at risk in the event of a fire or if she has a medical emergency. The simple daily tasks that we take for granted are all made more difficult and dangerous by the amount of stuff in her home and her attachment to it." This concern highlights the importance of using "I" statements to express genuine worry and empathy.

Using "I" statements, you might say, "I feel like you are at risk, and it worries me. It concerns me because I care about your safety and well-being." This approach fosters a more compassionate and understanding dialogue, emphasizing care and concern rather than judgment.

They Just Need to Clean Up!

• Enlist a cleaning crew
• Set a date to start -- procrastination is the enemy
• Select one room and work room by room
• Find a restoration company depending on how bad the situation in the home is
• Donation
• Time for a new home? Consider placement.

When considering a cleaning crew or professional organizer, it’s important to set a specific start date to prevent procrastination, which is common among individuals with perfectionist tendencies and worries. Being firm about the start date can help ensure the process begins.

Sometimes, you may need to consider alternative living arrangements, such as a new home, especially if the current environment is unsafe. Regardless of the approach, keep the tasks small and manageable. Focus on one space at a time, whether it's a single piece of furniture, one room, one floor, or one countertop. Celebrate each success to encourage progress and maintain motivation.

A Final Note

It’s easy to feel frustrated and even disgusted when dealing with a hoarder. However, it's crucial to remember that hoarding is a condition often beyond the resident’s control. By approaching the situation with education, patience, teamwork, and understanding, we can help restore the best possible quality of life for the resident.

This is my final note before we move on to references and address any questions and polling. Remember, despite the challenges, focusing on empathy and support is key to making a positive impact.

Exam Poll

1)A consequence of hoarding can include ALL, but which of the following?

A. Fire hazards

B. Improved relationships with family and others   Correct Answer

C. Increased risk of falls

D. Health risks

Everybody who said B--nicely done. That is the correct answer. Yeah, we don't see better relationships. We actually see conflict, and we do see some of those relationships deteriorate. We need to make a special effort to develop those and have that trust.

2)What is a type of hoarding?

A. Digital

B. Animal

C. Garbage/recycling

D. All of the above   Correct Answer

Everybody got it right. It is. D all of the above.

3)Which of the following statements is TRUE regarding hoarding and collecting?

A. Hoarders often do not begin as collectors.

B. Collecting can be used as a coping method.

C. Hoarders often experience shame or guilt.   Correct Answer

D. Collections are generally cluttered and cause distress.

Everybody who said C, you are correct. Hoarders often do experience shame or guilt and oftentimes don't allow people into their space because of it.

4)Which of the following is NOT considered a risk factor for hoarding?

A. Gender   Correct Answer

B. Personality

C. Family history

D. Stressful life event

Everybody who said gender is correct. Gender is not a risk factor. All three of the others are.

5)Strategies to address hoarding may include which of the following?

A. Take it slow. Set small goals or consider setting a timer and try to tidy one area.

B. Stay motivated by tracking progress and celebrating wins.

C. Avoid the power struggle by keeping the individual involved in the process.

D. All of the above   Correct Answer

It is all of the above.

Questions and Answers

What should I remember when dealing with a hoarder?

It’s easy to feel frustrated and even disgusted when dealing with a hoarder. However, it's crucial to remember that hoarding is a condition often beyond the resident’s control. 

How can we help restore the best quality of life for a resident who hoards?

By approaching the situation with education, patience, teamwork, and understanding, we can help restore the best possible quality of life for the resident.

What should be the focus when helping a hoarder?

The focus should be on empathy and support, understanding that this condition is often beyond their control, and aiming to improve their quality of life.

What steps can be taken to begin the decluttering process with a hoarder?

Set a specific start date to avoid procrastination. Focus on small, manageable tasks, such as one piece of furniture, one room, or one countertop at a time, and celebrate each success.

How should professionals handle calls to authorities in extreme cases?

Include the individual in the conversation and explain that the situation has reached a critical point where a call must be made. This will maintain their involvement and respect their autonomy.

What is important to avoid when interacting with someone who hoards?

Avoid making threats, touching their items without permission, and pushing too hard. These actions can damage trust and hinder progress.

How should conflicts and frustrations be managed when supporting a hoarder?

Conflicts should be resolved positively, focusing on the person rather than their possessions. Recognize their strengths and celebrate their achievements to boost their self-esteem.

What approach should be taken to support the family of a hoarder?

Discuss the financial, health, and safety implications of hoarding with them. Point them toward helpful resources and suggest stress management techniques to cope with the emotional strain.

Please reach out, and thank you so much for being here. 

References

Akbari, M., Seydavi, M., Mohammadkhani, S., Turchmanovych, N., Chasson, G. S., Majlesi, N., Hajialiani, V., & Askari, T. (2022). Emotion dysregulation and hoarding symptoms: A systematic review and meta-analysis. Journal of Clinical Psychology, 78, 1341–1353. https://doi.org/10.1002/jclp.23318

Chia, K., Pasalich, D., Fassnacht, D., et al. (2021). Interpersonal attachment, early family environment, and trauma in hoarding: A systematic review. Clinical Psychology Review, 90, 102096.  https://doi.org/10.1016/j.cpr.2021.102096.

Davidson, E., Mayes, T., & Huege, S. (2021). Opening the door on hoarding disorder in seniors: Not as seen on TV. The American Journal of Geriatric Psychiatry, 29(4), S4. https://doi.org/10.1016/j.jagp.2021.02.029.

Dozier, M., Davidson, E., Pittman, J., & Ayers, C. (2020). Personality traits in adults with hoarding disorder. Journal of Affective Disorders, 276, 191-196. https://doi.org/10.1016/j.jad.2020.07.033.

Dozier, M., Loebach Wetherell, J., Amir, N., et al. (2021). The association between age and experienced emotions in hoarding disorder. Clinical Gerontologist, 44(5), 562-566. DOI: 10.1080/07317115.2020.1742833

Dozier, M. E., & Bower, E. S. (2022). Assessment and treatment of hoarding disorder in rural-dwelling older adults. Professional Psychology: Research and Practice, 53(5), 458–465. https://doi.org/10.1037/pro0000422

Gleason, A, Perkes, D, & Wand, AP. (2021). Managing hoarding and squalor. Australian Prescriber, 44(3), 79-84. doi: 10.18773/austprescr.2021.020.

Larkin, P., Bratiotis, C. & Woody, S.R. (2023). Assessment of critical health and safety risks in homes where hoarding is prevalent. Journal of Community Health, 2023.https://doi.org/10.1007/s10900-023-01238-0

Larkin, P. (2022). Development of a measure of hoarding-related risks (T). University of British Columbia. Retrieved from https://open.library.ubc.ca/collections/ubctheses/24/items/1.0417309

Nix, C., Dozier, M., Porter, B., & Ayers, C. (2023). Clinician sentiments related to implementation of evidence-based treatment for hoarding in older adults. The American Journal of Geriatric Psychiatry, 31(3), S51-S52. https://doi.org/10.1016/j.jagp.2022.12.209.

Nutley, S.K., Read, M., Martinez, S. et al. (2022). Hoarding symptoms are associated with higher rates of disability than other medical and psychiatric disorders across multiple domains of functioning. BMC Psychiatry, 22, 647 (2022). https://doi.org/10.1186/s12888-022-04287-2

Weiss, E., Landers, A., Todman, M., & Roane, D. (2020). Treatment outcomes in older adults with hoarding disorder: The impact of self-control, boredom and social support. Australia’s Journal of Aging, 39, 375–380. https://doi.org/10.1111/ajag.12817