Report Shows What Hoarding Disorder Looks Like in Older Adults—And What Care They Actually Need

Sally, a 65-year-old woman in Connecticut, knows firsthand how hoarding disorder can damage health and relationships.

Several rooms in Sally’s childhood home were filled with clutter piled thigh-high, rendering the space unusable. When her parents moved into a smaller home in their senior years, they filled that home with books, papers, and other objects until it was dangerous to move between rooms.

The condition passed on: As an older adult, Sally has a hard time controlling clutter in her own home. The disorder causes friction with her husband and a sense of shame when she lets anyone besides family members into her home.

Sally is one of as many as 19 million who live with hoarding disorder.

“Our daughters were apologetic to friends who came over, if they weren’t too embarrassed to have them over at all,” Sally said in a statement to the committee. “I knew I wanted to do better. But I didn’t know how.”

A report published in July by the Senate Committee on Aging highlights the challenges faced by older adults with hoarding disorder and the need for better resources to support those individuals, their families, and their communities.

About 2% of the U.S. population has hoarding disorder, an issue that didn’t have an entry in the Diagnostic and Statistical Manual of Mental Disorders (DSM)—the diagnostic tool used by mental health experts—until 2013.

The newness of diagnostic criteria and lack of research on the topic means few providers are equipped to properly help individuals with hoarding disorder. That problem will be exacerbated as the population ages; in people 60 years and older, the rate of hoarding disorder jumps to 6%.

“This is a real problem for elderly folks, because the risk of falling and the inability to manage their medication, for instance, with the chaos involved in having so many possessions, becomes exacerbated,” Randy Frost, PhD, MA, an expert on hoarding disorder and professor emeritus of psychology at Smith College, told Verywell.

The investigation outlines how the disorder can affect the health and happiness of older adults as well as the communities they live in. That includes the challenges of caring for people with hoarding disorder in emergency situations and the risks to the safety of first responders in doing so.

The report lays out several federal policy recommendations to support older adults living with hoarding disorder. Those include offering local officials training on how to support people with hoarding disorder, improving the collection of data on how the disorder affects individuals, and expanding access to treatment.

“The federal government has an obligation to ensure that Americans can age with dignity, and this report makes clear that obligation must include doing more to address hoarding disorder,” Senator Bob Casey, chair of the Senate Special Committee on Aging, which issued the report, said in a statement.

How Hoarding Disorder Can Complicate Health

Hoarding disorder is characterized by the excessive acquisition of possessions and an unwillingness to dispose of them. Those items have little value to the average viewer but matter very much to the person with a hoarding disorder. Over time, the clutter accumulates, making it difficult or impossible to use the space as intended.

It’s different from collecting or messiness, according to the American Psychiatric Association. Collectors often acquire items intentionally and develop a community with other collectors. In comparison, people with hoarding disorder tend to be more impulsive when acquiring possessions and may be ashamed to have people in their homes due to the disorganization.

Importantly, a person is not considered to have the disorder if other physical, medical, or psychiatric conditions can explain their symptoms. For instance, if someone has a broken arm or schizophrenia-induced paranoia that makes it difficult for them to go outside to dispose of items, they wouldn’t be diagnosed with hoarding disorder.

“It’s related to messiness, but it’s really an exaggerated form where the person isn’t able to carry out the basic activities of daily living that are necessary in order to survive in a healthy environment,” Frost said.

Living among excess clutter can be dangerous. Piles of items may prevent them from easily navigating their home, cooking on their stove, and using their bathroom. Clutter increases the risk of getting sick from pests and mold, and it complicates the ability of emergency medical services to help someone during a fire or health emergency.

“We all have sentimental attachments. Our possessions have a magical quality for all of us. The difference is in the extent and the rigidity with which those beliefs and attachments are held or formed,” Frost said. “That’s the crux of this disorder, and the consequences of it can be pretty severe.”

Medical Conditions Can Contribute to Hoarding Disorder

About two-thirds of people with hoarding disorder report at least one chronic and severe medical condition, according to the report. The most common of these include arthritic conditions, sleep apnea, head injuries, and diabetes. People with hoarding disorder also tend to have a higher body mass than other people, which is also linked to certain chronic diseases.

Frost said it’s not clear if hoarding disorder is part of a more systemic problem that causes other chronic conditions or if the hoarding behavior somehow increases the risk for those conditions.

Research suggests that as many as 84% of people with hoarding disorder are diagnosed with at least one other mental health condition.

For instance, many people with hoarding disorder also have symptoms of attention-deficit/hyperactivity disorder (ADHD). That can make it more difficult for them to coordinate their health care and get to appointments on time, which could lead to poorer health outcomes, Frost said.

About half of those with hoarding disorder have significant depression, he added.

Frost said that while scientists know the two disorders are related, it’s not clear whether one causes the other. Regardless, living with depression can make it more difficult for someone to address their hoarding behaviors, he said.

Why Hoarding Disorder Becomes a Problem for Older Adults

Scientists aren’t yet sure why, exactly, some people develop hoarding disorder, said Carolyn Rodriguez, MD, PhD, professor of psychiatry and behavioral sciences at Stanford University. The condition tends to run in families, but there may be other reasons why hoarding behaviors arise, she said.

“Items can bring joy and identity,” Rodriguez said. “If someone gets rid of their sewing machine, then that would mean that they’re no longer somebody who sews. If they get rid of their sports equipment, that means that they’re no longer an athlete. So sometimes the objects are very intertwined with identity, too.”

Symptoms of hoarding disorder may first appear at around 11 to 15 years old. But the disorder often doesn’t become problematic until later in life.

There are a few reasons why someone’s hoarding behaviors increase later in life. Their parents may die, leaving behind a house full of items that hold sentimental value. Hoarding disorder is also associated with attention deficit problems, which may exacerbate as people’s cognition declines in later years.

People with hoarding disorder who live alone have a harder time managing their possessions, Frost said. If they had a spouse who passed away, for instance, it may become more difficult to control clutter in their home.

People with hoarding disorder are often embarrassed to host people in their homes due to the clutter. That’s an especially big problem for older adults, who tend to be particularly lonely. Nearly a quarter of older adults are socially isolated, which can lead to several health problems, according to the Centers for Disease Control and Prevention (CDC).

“Family members and loved ones that don’t understand hoarding disorder typically can be very highly critical, and there can be a lot of interpersonal tension between family members, leading to even more isolation,” Rodriguez said.

A non-medical professional may be the first to notice hoarding behaviors. For example, a maintenance worker comes in to fix a clogged toilet, an emergency response team enters to put out a fire, or a landlord responds to a neighbor’s complaint of a pest infestation.

Adult Protective Services reported more than 176,000 cases of self-neglect in older adults in 2021, according to the Senate Aging Committee report. That number could be an underestimation of the problem as it relates to hoarding because there is no national database to track the disorder.

What Does Treatment Look Like?

Cognitive behavioral therapy is the current best treatment for hoarding disorder.

Frost said that cognitive behavioral therapy can alleviate some symptoms of hoarding disorder for many patients. At present, however, the treatment isn’t a cure.

There are simply not enough clinicians who know how to treat hoarding disorder. The committee emphasized the need to educate more mental health professionals on this topic.

“If you go just pick someone out of the phone book—a psychologist, psychiatrist, or social worker—you are unlikely to find someone who is been trained in how to treat hoarding disorder,” Frost said.

Frost co-authored a book titled Buried in Treasures, which presents cognitive behavioral therapy practices in a self-help book. Several people quoted in the Senate Committee report noted the book had helped them manage their symptoms.

While some people see benefits when they use the book on their own, Frost said that working through its teachings in a group setting has been even more effective for people with hoarding disorder.

“In some ways, this is a success story, because we’re able to maximize resources in an environment where there are relatively few people trained in how to deal with this problem,” Frost said. “The results are not significantly better than the outcomes of cognitive behavior therapy for hoarding disorder, but at least they’re a lot cheaper and a lot more readily available.”

There are no medications approved to treat hoarding disorder. There have been some open-label trials of medications that are approved for obsessive-compulsive disorder, depression, psychosis, and attention-deficit/hyperactivity disorder, but none have made it to a randomized controlled trial yet.

“It has been very difficult to find funding for pharmacological research studies, but we’re still at it,” Rodriguez said.

In the meantime, Rodriguez’s team is testing the use of virtual reality alongside Buried in Treasures to treat a small group of people with hoarding disorder.

In current trials, patients wear a VR headset to enter a virtual version of their home. A therapist guides them as they practice examining items and letting them go. The patient can even put the item in a trash bin outside to be picked up by a simulated garbage truck.

When patients practice letting go of clutter virtually, it can be easier to let go of real objects, too, Rodriguez said.

“We wanted to offer a sort of, you know, easy entry point to help practice discarding or letting go of items, whether that be discarding or donating or recycling,” she said.

How to Support a Loved One With Hoarding Disorder

The Senate Committee on Aging emphasized the need for better education about the disorder for family members, people with the disorder, and members of the public.

That includes better publicly available information about the disorder on the websites of agencies like the Administration for Community Living, the CDC, the National Institutes of Health, and the Substance Abuse and Mental Health Services Administration. The Department of Housing and Urban Development explains that people with mental health disabilities are covered under the Fair Housing Act, but doesn’t call out hoarding disorder as a protected disability.

Supporting people with hoarding disorder frequently requires a host of agencies and organizations. That could include elder services, health departments, child welfare departments, animal control, landlord associations, and more.

But the first people to be impacted by someone’s hoarding behaviors may be their family.

“It can be actually harmful for individuals when they have a ‘forced clean out.’ They can feel an intense sense of loss. There have been individuals who died by suicide because of it,” Rodriguez said.

Instead of immediately moving to clean out a loved one’s possessions, Rodriguez recommends calling in an expert to support you.

“For family and loved ones, put the oxygen mask on yourself right to get care and treatment for yourself. It is a very challenging when somebody that you love is impaired with hoarding disorder, and it’s a bit out of one’s control,” she said.