Understanding Squalor Syndrome

Squalor syndrome is a malady in which people live a life with rubbish, vermin, and social withdrawal. It can be classified as primary or secondary. Primary Diogenes syndrome has no mental disorder component . To be considered secondary the person will also have dementia, extreme grief, schizophrenia or another mental disability.

This syndrome is self imposed squalor and neglect that is not due to financial misfortune or physical limitation. These individuals are mostly but not always older people who are isolated from friends and family and start taking on this strange behavior. Sometimes the aloof or negative behavior is present when they are young and they purposely estrange themselves from others. Their attitude is that this is the way they live and no one should interfere with it.

Needy individuals living in squalor who don't have the disorder are glad to get help from anyone to relieve them from their situation. Whereas people with squalor syndrome will need intervention and careful handling since they really will not be very receptive.

Because of their lack of cleanliness, the homes are full of bugs and rodents which can impact on neighbors and cause their lack of social calls. Besides not getting visitors they try not to call repairman, but if they do it will be a unpleasant work space. The windows will usually be kept covered to prevent people from seeing inside and calling the authorities. Vermin and smells can find its way to neighbors especially if they are in apartments or in close proximity. Bed bugs, fleas and rats can migrate and cause havoc to the unsuspecting neighborhood. In order to eradicate these pests everyone must be on board. The person with the syndrome will be very uncooperative therefor preventing any meaningful response and alienating the neighbors further.

Money is hoarded and not spent on even basic needs. This is also known separately as being a miser. They isolate themselves from people, live in filth, usually do not seek medical or any other type of help. If they have a known illness they have medication nonadherence not trusting the doctor and believing they know better.

Hoarding also occurs in concert with squalor syndrome. One sort of leads to the other, depending on the type of hoarder they are. Some hoarders try to keep their living area as clean as possible and their collections neat and orderly until they get overwhelmed. Hoarders might also be sociable away from their home. Ill health can be, but not always a contributing factor in hoarders losing control of their stock pile. They may be unable to part with their possessions yet unable to manage them anymore. Maybe about 10% of hoarders present with squalor syndrome. It seems after the hoarding gets out of hand it can become a squalor situation. If these people are in control of others, like a dependent adult, children or animals then they too are condemned to live in this manner whether they want to or not. This is considered an abusive situation.

Social breakdown or social breakdown syndrome is another term used for individuals who live as they do. There can be many early signs of this problem. A history of unkempt appearance and untidy house keeping might be a beginning. Aloof antisocial personality is something that can be seen early on also. In some settings this would be seen as a "fiercely independent" person whose privacy should be respected. This would be seen as just the way they are. These individuals usually are not close to any family and don't have any significant relationships with anyone else. What is true is that some are married or live with others, and this might help in preventing them from being totally isolated. Even within this frame work they isolate themselves from the rest of the household. The majority live alone and are widowed, divorced or single. People are kept at bay by their uncooperative hostile behavior. and lack of hygiene. They don't consider themselves lonely and seem not to care about the self imposed isolation.

There are newspaper accounts of homeless people found with bank books showing they had access to money yet they were living a piteous life on the streets. Social services sometimes get involved with court orders to spend the persons money on needed things. They might be put under guardianship in order to force them to get medical care, fix their home up from safety or sanitation violations. Unfortunately we read accounts of how either family or court appointed guardians steal their charges money, don't help them while making the situation worse.

As with anything else, prevention is the best medicine, and if someone starts to show early signs of the syndrome this would be the best time to help. But that is not possible in the overwhelming majority of people as they are only brought to the attention of authorities due to abnormal behavior. It is best for all if they can be helped and still reside in their own home. Unfortunately it is shown that even after an intervention the prognosis is not good and they continue the same behavior. Some can function on a reasonable level. Their home and person will never be clean but "reasonably" clean. With them we can't expect a cure only enough compromise where their house is not condemned or they are not evicted from their apartment. As far as personal cleanliness goes, they need to try a little harder in order to be able to at least get medical care and have some social life.

If the circumstances call for placement in a long term facility, they still carry the same behavior with them. Refusal to take medication and refusal to wash or change clothes is common. Socializing with the other residents is something they have a hard time doing and they may be disinterested in the activities that are offered. Their mortality rate is grim in nursing homes. If they go back to the community they usually continue to live as before unless someone is monitoring them. The idea is to focus on the important things like encouraging them to wash or bathe, change clothes, brush teeth, take medicine. This might include bringing meals and someone helping with cleaning. They can't reach what we consider normal standards but can have some improvements in order to stay independent.

The difference between squalor syndrome and compulsive hoarding is some compulsive hoarders do not live in squalor. Granted, they live among clutter but some do take care of themselves somewhat. Some hoarders try and hide the fact of how they live so when they face the public they try to look presentable. People living with squalor syndrome are noted by their bad hygiene and motley look, they don't even try to look presentable.This is a part of their neglectful behavior. Not all of them live with mounds of hoarded stuff. Some live with minimal possessions in substandard conditions. Missing in their home might be the basic of necessities like a stove or refrigerator. With squalor syndrome the operative word is squalor and in compulsive hoarding the operative word is hoarding and of course we see people with both.The animal hoarders we see on the news seem to have squalor syndrome due to the proliferation of feces and vile living conditions. There are people who keep a lot of pets that do not keep themselves or their pets in this kind of situation, they do not fit the criteria of squalor syndrome or hoarder.

It seems that the hoarding aspect of squalor syndrome garners the most attention. The individuals who do not hoard can live much longer under the radar because their behavior does not impact on others as much. Even though they live in filth their squalor is not as noticeable to outsiders. The harm they do is basically to themselves and more hidden.

The Collyer brothers were hoarders, misers and had squalor syndrome. They collected massive amounts of items that cluttered their Manhattan mansion with tons of garbage. They were self abusive as they did not take care of themselves or seek medical care instead they self treated. Both lived in a self imposed isolation of fear with their mountains of papers, car parts, furniture with dust, dirt and vermin. They were afraid someone would steal their "treasures". Robbery attempts were cited as one reason the burglar trap that killed one of the brothers was established inside the mansion

While working for a hospital there was a patient well known to us with COPD who had extremely bad breathing problems. COPD is a progressive breathing disease brought on mostly from long term smoking. He kept many dogs in his home and his clothes had fleas and ticks on them. He was presenting to the ER more and more because of his breathing. Since he was known, they would take care of his clothes and de-flea him if he needed to be admitted to a floor. I remember one time for whatever reason he was admitted without those precautions being taken and infested the ward with fleas and ticks.

We assumed at the time that he was that way because his illness made it hard for him to take care of himself. Although his wife looked almost as bad as him and she did not seem to have any debilitating illness. He was instructed on methods to help his breathing, including cleaning his environment. He pretty much did not follow the instructions so he kept ending up in the ER.

Staff from the home care division did not like going to his house because of the flea infestation and clutter in his residence. This is also a problem with the social withdrawal of these individuals. People are repelled by their unhygienic behavior and look. They can smell bad and bring fleas, ticks and roaches into any environment they go to. There are instances where they are told that they are not welcomed places because of fear of infestation and making other people uncomfortable.

His health suffered because of the living conditions, with the dust, dirt, and clutter. It is well documented that indoor pollution like dust mites, cockroach and mouse droppings can trigger an allergic reaction in COPD patients. His environment had more triggers than most yet he couldn't improve the situation.

Diogenes of Sinope (412 BC - 323 BC) was a Greek philosopher who among other things was famous for walking around in daylight shining a lamp into faces looking for an honest man. He was also notable for living in what mostly is described as a barrel or tub in the middle of Athens and his great wit.

He was part of the Cynic school of thought which name comes from the Greek word meaning "dog". Plato is said to have called him Diogenes the dog. Apparently people would make fun of him and bark and also refer to him as that. Diogenes is said to have responded to them basically intimating his preference to dogs and their behavior over humans. Some artwork show dogs with him or him depicted as a dog.

Diogenes was said to have detested extravagance among other things. He ate very little and believed one should be self-sufficient and live as natural as possible. That included begging and stealing from others. He was said not to have worn much clothes but the ones he did wear were coarse and filthy. He lived in public and is described as being shameless. Accounts have him doing private things in public places which dismayed onlookers. He was very opinionated and never shied away from expressing any of his opinions. Tales abound of him and famous and not so famous men of his day conversing and interacting. He was never one to isolate himself and stay aloof.

This is the person whose name is given to describe Squalor syndrome. Most think the name is inappropriate for the syndrome.

Ida Mayfield Wood - She lived many years in the New York Herald hotel with clutter in every room piled to the ceiling. She lived on very little and hoarded every penny. In 1931 when a relative had her apartment searched it was found to contain 100's of thousands of dollars hidden in boxes and pots and pans. She did not trust banks and was distrustful of people fearing they would steal her money.

Eliza Emily Donnithorne - is called by some people the Australian Miss Havisham. The story goes that she was engaged to be married in 1856. When the groom failed to show she took to her room insisting that the wedding feast remain untouched. Although a pretty and social young lady she is said to never have left her home again, Instead continually wearing her wedding gown and letting the house fall down around her. There are various similar versions to the story including a Charles Dickens connection. He is said to have heard about her and based the Miss Havisham character on her. There is no facts to back that up.

Quentin Crisp -(1908-1999) British writer, eccentric and actor prided himself for living in squalor saying that "cleaning would be a terrible effort". He lived in Manhattan's East Village in a single room that was filled with dust and grime, including the "filthy dressing gown" he wore while home. He became famous after writing ''The Naked Civil Servant,''

Edith Ewing Bouvier Beale (Big Edie) and daughter Edith Bouvier Beale (Little Edie)- Were the cousins of Jacqueline Kennedy Onassis and lived in a crumbling Long Island, N.Y. estate called Grey Gardens. The former socialites lived among raccoons, multitudes of cats and junk. They were brought to the attention of the public first by a magazine article in 1972 and by a documentary in 1976. In 1972 Mrs. Onassis paid to fix up the place and clean out the garbage. The house was sold a couple of years after the documentary upon the death of Big Edie.

Collyer Brothers - Langley and Homer lived in a home in Manhattan cluttered with 100 tons of papers, car parts, bicycles, chandeliers and anything that could be carried in their mansion. The gas was shut off, no heat or hot water. Homer went blind and had a stroke in 1933. He was not followed by any doctors but Langley devised a treatment which included 100 oranges a week and resting his eyes by keeping them closed. Langley died when he tripped on one of his home made booby traps and massive amounts of junk fell on top of him. His dependent brother died soon after without care probably from dehydration.

Howard Hughes - It is said as a child his mother was overly concerned about his environment. In adulthood it was notices that he showed signs of obsessive compulsive disorder by being unduly interested in the size of the peas that he ate. He had numerous plane accidents culminating in the last fiery crash in 1946 that changed him forever. Some claim, with no proof, that his later deranged behavior stemmed from stage three syphilis.

He is said to have given his interview in 1958. A once social and public person he became more isolated from people including his wife actress Jean Peters. From about 1961-71 at the time of their divorce they were living apart. She would only say she had not seen him for a few years before their divorce. He became more and more reclusive and living in seclusion by 1968 except for hired people he had control of. He had doctors on staff which he did not listen to. He was addicted to various pain killers stemming from his plan accidents. He became bedridden from a fractured hip and continued to live in squalid conditions despite the fact that he was a germaphobe and worth billions of dollars. Even in his relative isolation he still involved himself in political pursuits.

When he died it was ruled as kidney failure. He was dehydrated and malnourished. X-rays showed there were broken off hypodermic needles in his arm. His nails were long, his hair was long and he had a long beard. His height in his youth was 6"4" and at death he weighed only 90 lbs.