Illustration: Brett Affrunti
Jack Samuels’ mostly anonymous days as a research psychiatrist ended sometime in the last couple of years, as the subjects of his studies—people who accumulate mounds of things, often to the detriment of their health and relationships—stepped out of their overstuffed closets and into the spotlight. Once dismissed as junk-loving eccentrics and flakes, people who hoard indiscriminately have recently served as subjects not only for sober scientific study but for three so-called reality TV shows and a celebrated novel, E.L. Doctorow’s Homer and Langley, based on the real-life story of two wealthy brothers who were found dead in their New York home in 1947 amid more than 100 tons of useless items they had piled up over decades.
Nowadays, Samuels, an associate professor of psychiatry at the School of Medicine, spends less quiet time in his tiny, semi-cluttered office with a view of a sliver of the Baltimore harbor and a lot more of it talking with the media. With 23 years of research on the subject—all of it performed at Johns Hopkins—he has also become the authority for scientists looking to unravel the mysteries of hoarding. Samuels and several Johns Hopkins colleagues’ groundbreaking research into a sometimes-related ailment, obsessive-compulsive disorder, recently found a genetic basis for hoarding behavior. The discovery comes at a time not only when people who hoard are in the public eye but as longstanding misconceptions about the disorder are being dismissed by the psychiatric world. “Even just a couple of decades ago, we thought that hoarding was merely a subtype of obsessive-compulsive disorder,” says Samuels, a compact man with a mustache and a clear, media-friendly speaking style. “Now, we know that only one-third of people with OCD exhibit hoarding behavior, that many people without OCD hoard, and we suspect that genes can play a key role in it.”
Hoarding, which afflicts an estimated 15 million people in the United States, can endanger families and even neighbors, he adds. Every year, stories abound of people dying in fires stoked by hillocks of things piled within their homes. Those sad tales can border on the incomprehensible: Would-be rescuers often cannot find people in a burning home stacked floor to ceiling with newspapers and other items. Some people who hoard make animals their obsession, sometimes collecting dozens of them. The animals, often malnourished and kept in appalling conditions, can spread disease throughout neighborhoods.
“It’s not uncommon for us to see people who fill one house up with stuff, then move to a second house—sometimes even a third—to get away from this mass of clutter,” says Samuels.
Even though we live in a society where the number of self-storage facilities (51,000) dwarfs that of coffee shops (around 25,000), and where one in 10 households stows excess stuff in places outside their homes, Samuels and colleagues think that the disorder has a lot more to do with activity in the genes—specifically, in chromosome 14—than with Americans’ passion for material things. (Researchers around the world have identified hoarding in all cultures.) Since 2008, his Johns Hopkins research team has interviewed 70 people found through hoarding support organizations—groups with such names as Clutterers Anonymous, Children of Hoarders, and Messies Anonymous—as well as 100 of the participants’ relatives. “We’re finding that a lot of people who hoard have relatives who show the same behavior,” Samuels says. Older people are more prone to exhibiting symptoms of the disorder. “[Hoarding] tends to show up later in life than OCD does,” he says. “The tendency is there when people who hoard are young, but they may live with someone who can help them manage things.” But as people get older, they may lose a spouse and become isolated. “The situation can get out of hand.”
Raising children or maintaining relationships is more difficult for hoarders. Getting them help isn’t easy, either. Although many hoarders are too embarrassed by their surroundings to invite people over (and, hence, become even more isolated), others deny they have a problem, even as their relationships crumble. “There’s often a lack of insight,” Samuels says. Traditional treatments for OCD aren’t much use against hoarding. Prescribing anti-anxiety drugs and behavioral therapy that exposes people to objects they fear—methods used to battle OCD—are less effective in treating hoarding. One emerging cognitive behavioral approach involves sending a therapist to a patient’s home to challenge his thinking about hoarding objects, as the patient works to reduce clutter. The technique, tested in trials, has reduced the severity of the disorder by 30 percent. But such treatments often aren’t covered by patients’ health insurance plans, even though therapy, which can cost up to $7,000 for 40 hours, must be maintained for years. “It’s not like these people are cured,” says Samuels.
As science continues to examine people who hoard and their genetics for clues as to how to help them, Samuels hopes that more mental health professionals will educate themselves about the disorder and take on more of them as patients. In Baltimore, there are only three or four therapists who treat the tens of thousands of people estimated to have the disorder there—numbers that reflect a nationwide trend, he says.
Samuels believes that the sagas of those who amass piles of often useless bric-a-brac have entered the cultural zeitgeist because we all grapple with the hold material things can have on us: “It’s a disorder we can all relate to in some way. We either know of people who hoard things, or we can identify with their difficulty in getting rid of them. Throwing out our kid’s second-grade artwork is hard for us, but most of us can do it.”
Hoarding in my opinion has nothing to do with genes but rather the conditioning of one’s upbringing since the Great Depression. It has to do with going without, rather it be food, shelter, clothing, toys, it does not matter, except for the the first, food.
When one goes without food, one tends to hoard. Society during the Great Depression led folks into keeping and collecting items that would sustain them in keeping food on the table or within reach. Keeping shelter and warmth, wallpaper and insulation made from newspapers and magazines, heat by fire from these products, as it is still being used today by the homeless.
All in all it is brainwashing, very simply the lack of substance.
Very insightful article. Another aspect of hoarding, especially in the elderly involves the risk of physical injuries, falls, respiratory illnesses from dust and pets or rodents. I live in the Baltimore area and have a mother who is a hoarder. She is nearly 88 years old with macular degeneration and on a blood thinner. A nightmare waiting to happen and intervention causes such anxiety and anger it feels as though our hands are tied. Her new medical doctor is reassessing her risk of being on blood thinners at this time. Hoarders do not volunteer this information to their physicians and I have found I have to inform the physicians ahead of time if at all possible. HIPAA laws make this type of disorder even more difficult to be open about with healthcare practitioners. I would suggest that primary care physicians increase their awareness of this disorder and develop a screening tool or skilled list of questions that might clue them in that this is a “hidden” problem with their patients. Maybe this has already been done, but it truly is a problem overlooked with healthcare.
Additionally, how do you get help for someone with this disorder, willingly or against their will? Can you force someone to get help? If you remove the person from the environment or the environment from the person, does the anxiety ever lead to fatality?
I enjoyed this article because it allows me free rein for my favorite theory: The existence of a “collector’s gene.”
There are hoarders, collectors and those who don’t understand either.
Hoarding is a mutation of the “collector’s gene.” In some individuals, instead of simply being dominant, it goes rogue and frequently leads to news articles, some serious, e.g. animal hoarders with 75 cats or dogs; some less so, hermit dies in a room filled with old newspapers.
But a healthy “collector’s gene” provides a lifetime of pleasure, the thrill of the hunt. I have been an inveterate collector since childhood and even in old age the thrill remains.
Any real collector knows that sooner or later someone will say, “You’re sick”‘ it’s usually some benighted individual who lacks the “gene.”
Looking concerned, the collector will say, gently, “No, I’m not sick. I’m simply lucky enough to have been born with the collector’s gene. It’s a dominant characteristic and I have no control over it, it’s just there. And I love it.”
I visited my childhood girlfriend recently. We r now 65 yrs. her Hugh 3 story home used to b the gathering place. A home comprising of 2 parents, 2 brothers & 2 sisters. On one side of the house on the 2nd floor the father taught Pitman shorthand, typing & dictation. On the first floor, can also b called a basement, as teenagers we called it the studio; is where piano lessons was taught. I left in 1963 to live in England. Approx 3 yrs later the older brother came to England. He was an accomplished pianist, organist & trained teacher. Turned out he was gay, shortly after he moved to France. Another brother moved to America studied & became a CPA . Years later one of the twin sisters who always saw herself as the “black sheep” moved to America, continued her studies as a pianist & organist, & is now an accomplished organist & pianist. Sometime in the 70,s the daddy died of diabetes; that left the mother and one twin sister in that huge house. Commercial school & music sch came to an end years earlier. The mother left in the 80′s on vacation to America, no one would had thought that she would never return home. She died of a massive stroke. Her body was cremated, her ashes brought back home by the twin sister who never left and was buried. Now, that sister lives alone in that huge house. I have returned several times on vacation, but never stayed with her. Presently, I am home on vacation& staying with her. I am writing this because I am shocked to see that over all, all,all these yrs she has not gotten rid of any items of the parents, or sister. I entered the room that was the sister,s room. The room is terribly dusty.i saw clothes hanging in the closet. When I asked whose clothes were they. I was shocked at the reply that they r her sister’s still hanging there after 23 yrs. I asked about the dusty, discolored bottles of toiletries and personal care items on the dressing table the answer was the same, with a shrug of her shoulder, she said they belong to the sister. In shock I said after all these years u have not cleaned or thrown away anything from this room? She sucked her teeth & said no. The room I am occupying has no table top space, all filled with old, old pillows, cushions, old Non Operable tv,s and radios . When I asked what was in the closet? She opened, old curtains, sheets, bed spreads. Pushed in every corner are old valances, brooms, empty boxes. I have never seen this. What is this? Is this hoarding? She has lived for all these yrs just not realizing that she should throw away old, non useable items. I told her that while I am here I will purchase some Huge
garbage bags, put all old tv’s, computers, radios, pillows etc, call in a truck and cart things away to the dump. She said ok.
And person care items on the