Hoarders say they feel stigmatized, face 'everyday discrimination'

UPI

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Compulsive hoarders reported "significantly higher" perceptions of social and physical disorder in their neighborhoods as well as more "everyday discrimination" than did matched counterparts, according to a recent study. Photo by Josefina/ Pexels
ST. PAUL. Minn., June 27 (UPI) -- Compulsive hoarders feel stigmatized and are more likely to view their neighborhoods as less safe and more chaotic than counterparts do, according to researchers who are seeking to promote empathy for sufferers.
Tapping data made available from a wide-ranging National Institutes of Health initiative, the analysts found that people with hoarding reported "significantly higher" perceived neighborhood social disorder, neighborhood physical disorder and everyday discrimination than did matched counterparts.
That perceived "daily discrimination" was also found to be a strong predictor of hoarding disorder relative to other participants, even those diagnosed with related types of obsessive-compulsive disorders, according to a recent study online in the Journal of Affective Disorders.
The study comes as medical science is struggling with how to effectively address hoarding that when left untreated can put sufferers and family members at serious risk of heath problems, injury, removal of at-risk children or older adults from the home, homelessness or in the worst case, even death.
Hoarding also comes with high public costs. Between 2014 and 2022, more than 5,200 residential fires connected to cluttered environments resulted in 1,367 fire service injuries, 1,119 civilian injuries and over $396 million in losses, according to data collected through the National Fire Incident Reporting System.
The study's lead author, Mississippi State University clinical psychology doctoral student Jarrod Williams, said the findings shed new light on how hoarders view themselves and their communities, and can perhaps serve to humanize them, reduce the stigma they feel and lead to new avenues of treatment.
"We already know that people with hoarding experience high rates of isolation and loneliness, and this study demonstrates that they not only have worse neighborhood experiences but also worse perceived discrimination," he told UPI.
"If we can reduce how often people with hoarding experience discrimination and improve how they interact with their communities, that would be really helpful step in the right direction to alleviating this public health issue," he said.
Psychiatrists define hoarding disorder as a type of obsessive-compulsive mental health condition primarily characterized by difficulty discarding objects regardless of their value, with the result being the accumulation of clutter that compromises living spaces.
It is a chronic condition that particularly affects older people: an estimated 6% of older adults have hoarding disorder, compared to roughly 2% of the general population. Hoarding behaviors typically emerge before age 20, but the severity of disorder symptoms often increase with each decade of life.
For those afflicted, compulsive hoarding results in more functional impairment than many of the most common medical and psychiatric disorders such as major depression, chronic pain and diabetes, according to studies. The greatest risks associated with severe cases include fires, injuries from falls, pest infestations and medical illnesses.
Recent research suggests that trauma and stressful events during one's life can impact hoarding disorder, including interpersonal violence, having belongings taken by force or childhood abuse. Biology and genetics may play a role.
Since the 1990s, the "gold standard" treatment for hoarding disorder has been cognitive behavioral therapy, or CBT, in which a patient's beliefs about possessions and discarding are identified, challenged and modified through a process called "cognitive restructuring" This involves learning to identify and disregard irrational, harmful thoughts.
Results with CBT, appearing promising. One study found that 71% of patients were considered improved after 26 CBT sessions and 81% of patients rated themselves improved.
However, treatment refusal and compliance remains a concern: Few people seek treatment for hoarding disorder on their own and often refuse treatment when it is offered to them.
Williams said the Mississippi State study could provide new clues about how to approach hoarders by illuminating their "neighborhood experience," which is defined as someone's perception of their neighborhood and the victimization and/or discrimination they experience within it.
Using survey responses from the NIH's All of Us research program, he and his colleagues focused on 64 participants diagnosed with HD, 1,265 participants diagnosed with obsessive-compulsive disorder but not hoarding disorder, and 85,329 individuals without records of psychiatric issues.
The 64 hoarding disorder patients were matched to up to five participants with OCD exactly by age, race/ethnicity, gender and using nearest neighbor matching for income, marital status and education, while up to 10 non-psychiatric control participants were matched exactly using age, race/ethnicity, gender, marital status and education.
"Significant differences" were found in the hoarding disorder patients' survey responses about neighborhood social cohesion and safety, neighborhood social disorder, neighborhood physical disorder, neighborhood crime/safety, medical discrimination and overall discrimination, Williams reported.
"What these findings say to me is that people with hoarding know they're being stigmatized, and I would hypothesize that's why their neighborhood experience is worse," he said. "And I hope that this knowledge can promote a level of compassion for them.
"I would guess that part of the reason for the disfunction they experience in their communities is due to stigma and perceived stigma. Part of how we help them is being compassionate and understanding."
Agreeing with that sentiment is Lisa M. O'Neill, associate director of research and education at the University of Arizona's Center on Aging in Tucson and a clinical assistant professor of medicine.
She also serves on the Arizona governor's Advisory Council on Aging and is the co-founder and chair of the Southern Arizona Hoarding Taskforce.
O'Neill told UPI that after five years of teaching community education classes for people struggling with hoarding behaviors, she is convinced that to make real headway against this disorder, sufferers "need to feel understood, not judged."
Reaching them and finding effective treatments requires empathy with how they view their situations, especially among professionals and community members, she said in emailed comments.
"For example, even if someone hasn't had any direct contact with a person who struggles with alcohol addiction, we have all had enough education to know that simply saying 'just stop drinking' isn't going to solve anything. We know that people struggling with addiction need help.
"While physical addiction and mental health disorders are not the same thing, education on these issues builds a community-wide understanding and hopefully a small measure of empathy," she said.
Because most hoarding behaviors usually begin in adolescence or the early 20s, it's likely that every conversation sufferers have ever had with anyone about their behaviors or possessions "has not been positive, and after a lifetime of negative conversations/outcomes, they might be afraid to openly seek help because no one seems to understand," O'Neill added.
People with hoarding behaviors "need education and behavior modification as well as realistic tips so they can practice building new thought processes and behavior patterns -- new habits, all while keeping their anxiety and emotional distress in check," she urged, adding, "Behavior modification is hard, and it takes time."
Hoarders' negative views of their neighborhoods are most likely influenced by their tendency to be "socially isolated from others," added Jessica Rasmussen, a psychologist with Mass General Brigham in Boston, who specializes in the psychopathology of hoarding and provides cognitive behavioral therapy.
"Individuals with HD often are dealing with depressive symptoms or social anxiety that can lead them to withdraw from those around them and be less likely to reach out for help," she told UPI in emailed comments.
"They are also frequently dealing with feelings of embarrassment or shame concerning the hoarding, they are fearful of how they will be perceived and worried about being negatively judged.
"It is often family members, friends or the local community that may reach out for help for the individual with HD," she said.
CBT is effective and has been shown to help sufferers reduce clutter in their homes, improve their ability to discard possessions as well as resist acquiring more than they need, Rasmussen added.
CBT for hoarding disorder "focuses on examining beliefs about possessions and shifting them, as well as gradual exposure to discarding and resisting excessive acquisition. It also provides cognitive skills training for executive functions such as decision making and categorization."