A report published earlier this year by the US Senate Special Committee on Aging is calling for a national coordinated response to what the authors claim may be an emerging hoarding disorder (HD) crisis.
While millions of US adults are estimated to have HD, it is the disorder’s prevalence and severity among older adults that sounded the alarm for the Committee Chair Sen. Bob Casey (D-PA).
HD affects roughly 2% of the overall population but up to 6% of all people older than 70 years, the report stated. Older adults made up about 16% of the US population in 2019. By 2060, that proportion is projected to soar to 25%.
The country’s aging population alone “could fuel a rise in hoarding in the coming decades,” the report authors noted.
These findings underscore the pressing need for a deeper understanding of HD, particularly as reports of its impact continue to rise. The Senate report also raises critical questions about the nature of HD: What is known about the condition? What evidence-based treatments are currently available, and are there national strategies that will prevent it from becoming a systemic crisis?
Why the Urgency?
An increase in anecdotal reports of HD in his home state prompted Casey, chair of the Senate Committee on Aging, to launch the investigation into the incidence and consequences of HD. Soon after the committee began its work, it became evident that the problem was not unique to communities in Pennsylvania. It was a nationwide issue.
“Communities throughout the United States are already grappling with HD,” the report noted.
HD is characterized by persistent difficulty discarding possessions, regardless of their monetary value. For individuals with HD, such items frequently hold meaningful reminders of past events and provide a sense of security. Difficulties with emotional regulation, executive functioning, and impulse control all contribute to the excessive buildup of clutter. Problems with attention, organization, and problem-solving are also common.
As individuals with HD age, physical limitations or disabilities may hinder their ability to discard clutter. As the accumulation increases, it can pose serious risks not only to their safety but also to public health.
Dozens of statements submitted to the Senate committee by those with HD, clinicians and social workers, first responders, social service organizations, state and federal agencies, and professional societies paint a concerning picture about the impact of hoarding on emergency and community services.
Data from the National Fire Incident Reporting System show the number of hoarding-related residential structural fires increased 26% between 2014 and 2022. Some 5242 residential fires connected to cluttered environments during that time resulted in 1367 fire service injuries, 1119 civilian injuries, and over $396 million in damages.
“For older adults, those consequences include health and safety risks, social isolation, eviction, and homelessness,” report authors noted. “For communities, those consequences include public health concerns, increased risk of fire, and dangers to emergency responders.”
What Causes HD?
HD was once classified as a symptom of obsessive-compulsive personality disorder, with extreme causes meeting the diagnostic criteria for obsessive-compulsive disorder. That changed in 2010 when a working group recommended that HD be added to the Diagnostic and Statistical Manual of Mental Disorders (DSM), Fifth Edition, as a stand-alone disorder. That recommendation was approved in 2012.
However, a decade later, much about HD’s etiology remains unknown.
Often beginning in early adolescence, HD is a chronic and progressive condition, with genetics and trauma playing a role in its onset and course, Sanjaya Saxena, MD, director of Clinical and Research Affairs at the International OCD Foundation, told Medscape Medical News.
Between 50% and 85% of people with HD symptoms have family members with similar behavior. HD is often comorbid with other psychiatric and medical disorders, which can complicate treatment.
Results of a 2022 study showed that compared with healthy control individuals, people with HD had widespread abnormalities in the prefrontal white matter tract which connects cortical regions involved in executive functioning, including working memory, attention, reward processing, and decision-making.
Some research also suggests that dysregulation of serotonin transmission may contribute to compulsive behaviors and the difficulty in letting go of possessions.
“We do know that there are factors that contribute to worsening of hoarding symptoms, but that’s not the same thing as what really causes it. So unfortunately, it’s still very understudied, and we don’t have great knowledge of what causes it,” Saxena said.
What Treatments Are Available?
There are currently no US Food and Drug Administration–approved medications to treat HD, although some research has shown antidepressants paroxetine and venlafaxine may have some benefit. Methylphenidate and atomoxetine are also under study for HD.
Nonpharmacological therapies have shown more promising results. Among the first was a specialized cognitive-behavioral therapy (CBT) program developed by Randy Frost, PhD, professor emeritus of psychology at Smith College in Northampton, Massachusetts, and Gail Steketee, PhD, dean emerita and professor emerita of social work at Boston University, Boston.
First published in 2007 and the subject of many clinical trials and studies since, the 26-session program has served as a model for psychosocial treatments for HD. The evidence-based therapy addresses various symptoms, including impulse control. One module encourages participants to develop a set of questions to consider before acquiring new items, gradually helping them build resistance to the urge to accumulate more possessions, said Frost, whose early work on HD was cited by those who supported adding the condition to the DSM in 2012.
“There are several features that I think are important including exercises in resisting acquiring and processing information when making decisions about discarding,” Frost told Medscape Medical News.
A number of studies have demonstrated the efficacy of CBT for HD, including a 2015 meta-analysis co-authored by Frost. The research showed symptom severity decreased significantly following CBT, with the largest gains in difficulty discarding and moderate improvements in clutter and acquiring.
Responses were better among women and younger patients, and although symptoms improved, posttreatment scores remained closer to the clinical range, researchers noted. It’s possible that more intervention beyond what is usually included in clinical trials — such as more sessions or adding home decluttering visits — could improve treatment response, they added.
A workshop based on the specialized CBT program has expanded the reach of the treatment. The group therapy project, Buried in Treasures (BiT), was developed by Frost, Steketee, and David Tolin, PhD, founder and director of the Anxiety Disorders Center at the Institute of Living, Hartford, and an adjunct professor of psychiatry at Yale School of Medicine, Yale University, New Haven, Connecticut. The workshop is designed as a facilitated treatment that can be delivered by clinicians or trained nonclinician facilitators.
A study published in May found that more than half the participants with HD responded to the treatment, and of those, 39% reported significant reductions in HD symptoms. BiT sessions were led by trained facilitators, and the study included in-home decluttering sessions, also led by trained volunteers. Researchers said adding the home intervention could increase engagement with the group therapy.
Another study of a modified version of BiT found a 32% decrease in HD symptoms after 15 weeks of treatment delivered via video teleconference.
“The BiT workshop has been expanding around the world and has the advantage of being relatively inexpensive,” Frost said. Another advantage is that it can be run by nonclinicians, which expands treatment options in areas where mental health professionals trained to treat HD are in short supply.
However, the workshop “is not perfect, and clients usually still have symptoms at the end of the workshop,” Frost noted.
“The point is that the BiT workshop is the first step in changing a lifestyle related to possessions,” he continued. “We do certainly need to train more people in how to treat hoarding, and we need to facilitate research to make our treatments more effective.”
What’s New in the Field?
One novel program currently under study combines CBT with a cognitive rehabilitation protocol. Called Cognitive Rehabilitation and Exposure/Sorting Therapy (CREST), the program has been shown to help older adults with HD who don’t respond to traditional CBT for HD.
The program, led by Catherine Ayers, PhD, professor of clinical psychiatry at University of California San Diego, involves memory training and problem-solving combined with exposure therapy to help participants learn how to tolerate distress associated with discarding their possessions.
Early findings pointed to symptom improvement in older adults following 24 sessions with CREST. The program fared better than geriatric case management in a 2018 study — the first randomized controlled trial of a treatment for HD in older adults — and offered additional benefits compared with exposure therapy in a study published earlier this year.
Virtual reality is also helping people with HD. A program developed at Stanford University in Stanford, California, allows people with HD to work with a therapist as they practice decluttering in a three-dimensional virtual environment created using photographs and videos of actual hoarded objects and cluttered rooms in patients’ homes.
In a small pilot study, nine people older than 55 years with HD attended 16 weeks of online facilitated therapy where they learned to better understand their attachment to those items. They practiced decluttering by selecting virtual items for recycling, donation, or trash. A virtual garbage truck even hauled away the items they had placed in the trash.
Participants were then asked to discard the actual items at home. Most participants reported a decrease in hoarding symptoms, which was confirmed following a home assessment by a clinician.
“When you pick up an object from a loved one, it still maybe has the scent of the loved one. It has these tactile cues, colors. But in the virtual world, you can take a little bit of a step back,” lead researchers Carolyn Rodriguez, MD, PhD, director of the Stanford’s Hoarding Disorders Research Program, told Medscape Medical News.
“It’s a little ramp to help people practice these skills. And then what we find is that it actually translated really well. They were able to go home and actually do the real uncluttering,” Rodriguez added.
What Else Can Be Done?
While researchers like Rodriguez continue studies of new and existing treatments, the Senate report draws attention to other responses that could aid people with HD. Due to its significant impact on emergency responders, adult protective services, aging services, and housing providers, the report recommends a nationwide response to older adults with HD.
Currently, federal agencies in charge of mental and community health are not doing enough to address HD, the report’s authors noted.
The report demonstrates “the scope and severity of these challenges and offers a path forward for how we can help people, communities, and local governments contend with this condition,” Casey said.
Specifically, the document cites a lack of HD services and tracking by the Substance Abuse and Mental Health Services Administration, the Administration for Community Living, and the Centers for Disease Control and Prevention.
The committee recommended these agencies collaborate to improve HD data collection, which will be critical to managing a potential spike in cases as the population ages. The committee also suggested awareness and training campaigns to better educate clinicians, social service providers, court officials, and first responders about HD.
Further, the report’s authors called for the Department of Housing and Urban Development to provide guidance and technical assistance on HD for landlords and housing assistance programs and urged Congress to collaborate with the Centers for Medicare and Medicaid Services to expand coverage for hoarding treatments.
Finally, the committee encouraged policymakers to engage directly with individuals affected by HD and their families to better understand the impact of the disorder and inform policy development.
“I think the Senate report focuses on education, not just for therapists, but other stakeholders too,” Frost said. “There are lots of other professionals who have a stake in this process, housing specialists, elder service folks, health and human services. Awareness of this problem is something that’s important for them as well.”
Rodriguez characterized the report’s recommendations as “potentially lifesaving” for individuals with HD. She added that it represents the first step in an ongoing effort to address an impending public health crisis related to HD in older adults and its broader impact on communities.
A spokesperson with Casey’s office said it’s unclear whether any federal agencies have acted on the report recommendations since it was released in June. It’s also unknown whether the Senate Committee on Aging will pursue any additional work on HD when new committee leaders are appointed in 2025.
“Although some federal agencies have taken steps to address HD, those steps are frequently limited. Other relevant agencies have not addressed HD at all in recent years,” report authors wrote. “The federal government can, and should, do more to bolster the response to HD.”
Frost agreed.
“I think federal agencies can have a positive effect by promoting, supporting, and tracking local efforts in dealing with this problem,” he said.
https://www.medscape.com/viewarticle/hoarding-disorder-looming-national-crisis-2024a1000lex
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