Squalor Syndrome: Living Happily Among Cats, Fleas and Filth
Jan. 17, 2007 — -- The Broadway musical "Grey Gardens" -- headed for Tony nominations and a Hollywood movie -- highlights the fall of socialite Edie Bouvier Beale and her mother, Edith, who lived in a squalid 28-room mansion among scores of flea-infested cats and raccoons, and towers of dirty cans.
But the hit show also highlights Diogenes syndrome, a disorder characterized by self-neglect, domestic squalor and social withdrawal.
The eccentric Beale pair -- the first cousin and aunt of Jacqueline Kennedy Onassis -- is a classic example of what has also been called squalor disorder, which especially affects the elderly.
The syndrome was named for Diogenes, a Greek philosopher of the fourth century B.C., who advanced the principles of self-sufficiency and contentment unrelated to material possessions -- a misnomer -- given the nature of the disorder, which causes people to hoard animals and belongings.
Hoarding occurs in about 1 to 2 percent of the population, according to Randy Frost, a psychology professor at Smith College who wrote "Buried Treasures," a self-help book for hoarders.
About 10 percent of hoarders display the rarer Diogenes syndrome.
Those who live with the syndrome manifest personality traits like reclusiveness, suspiciousness, obstinacy and other isolating tendencies. There are often precipitating events -- such as physical illness, deafness, blindness and bereavement -- that make the syndrome worse.
Research shows a relationship between the syndrome and anxiety and depression, and anecdotal studies suggest the disorder may be triggered by a significant emotional or relationship loss, said Frost.
Hoarding -- which is also seen in dementia and mental retardation -- is also associated with obsessive-compulsive disorder, and that can start as early as the teenage years, Frost said.
"When you ask people about their lives, they've been hoarding for years, but they don't get serious about it for another decade," said Frost. "By 65, the community around them starts to pay more attention.
A Web site devoted to this disorder -- Squalors.com -- cites numerous cases of Diogenes syndrome through history, including Beethoven and the English writer and raconteur Quentin Crisp.
Another case was Eliza Emily Donnithorne, the possible inspiration for the Miss Havisham character in Charles Dickens' "Great Expectations." Left on the altar in mid-19th century Australia, the 26-year-old reportedly shut herself in the dining room with the wedding feast, where she remained with the cockroaches and the mice, waiting for her fiancé to return.
He never did.
Hundreds in Filth
Those with the condition are often exploited by others. Last year, Milwaukee city health officials cracked down on landlords -- some paid by the city -- who were renting squalid homes to the mentally ill after the local newspaper exposed abuses.
The Journal Sentinel showed images of people living amid rats and roaches in deadly conditions.
"When you go around to these rooming houses, it's horrifying," said Meg Kissinger, who reported the story. "The woman who we started the series with was lying on a mattress, drenched in urine, with piles of spent toilet paper around the room. There was a rash running up and down her legs and she was eating moldy food that the landlady had retrieved from the garbage cans and was serving people."
Violations included infestations of rats, mice and roaches, no heat, no fire alarms, broken toilets, exposed asbestos, raw sewage backing up into the sinks, no running water, broken door locks and windows painted shut.
Many blame national policies in the 1970s that closed psychiatric institutions and released thousands of patients without giving communities financial support to care for them. The topic was chronicled in a book by Harvard University's Jon Gudeman.
In California, a focus on the hoarding aspect of this syndrome began when landlords -- worried about public health and fire hazards -- evicted tenants and made them homeless, according to Belinda Lyons, executive director of the Mental Health Association of San Francisco. The association holds annual conventions on the topic.
In private homes and among the rich, odd behavior often goes unnoticed, she said.
"When it's a rental, there are quarterly inspections. But in these huge homes nothing is done unless a neighbor complains or someone passes away or a family member comes in to help declutter," Lyons said. "But there is huge resistance and it's a source of strain for the family."
Shame and Isolation
Those afflicted have few guests and experience shame and isolation, Lyons said. Often the inspectors are called in when the squalor spills out into the yard. And poverty often has nothing to do with it.
In 2002 in California, a Solana Beach home with an "ocean view to die for" was so cluttered the owner had to crawl "almost crablike" over piles of newspapers, mail and rubbish to get anywhere inside the house, according to an article by Denise Nelesen, spokesman for the San Diego County Office of Aging and Independence.
The reclusive woman was living alone in a dilapidated house filled with rubbish and infested with vermin. Excrement and decomposing food were strewn around the floors, and the stench was unbearable to all but the owner.
The woman eventually moved outside and used buckets as toilets that she would dump over the neighbor's fence.
That same year, the local humane society also reported five major cases of animal hoarding, involving 245 animals. In one, a litter of dead kittens was found mummified on someone's living room floor.
Self-Neglect Kills
The San Diego office receives about 1,000 calls a month for cases of elder abuse, and nearly 40 percent of them involve cases of self-neglect like these, said Nelesen.
"It's very common and not much is being done," she said. "A lot of people just don't want to get involved or don't want to bother someone, but you are setting a person up to killing themselves."
The elderly also have physical impairments that can make Diogenes syndrome worse. Add to that depression or the loss of a loved one.
Or -- as in the case of Edith Beale, shunned by her husband, and Edie, distraught over a broken engagement -- an overwhelming sense of unresolved grief.
"They've given up," said Nelesen, "and they don't care anymore."
For more information on elderly abuse or call 800-677-1116 to find an agency near you.