Walking into the home of a hoarder can be a bizarre experience. Most of us think of our homes as places to shelter us, to keep us safe and comfortable. But to a certain percentage of the population (estimated to be around 4%, and more prevalent in older people) the home becomes a place to safeguard precious possessions. And for these individuals, every possession is precious, from twenty-year-old mail, to every plastic bag they have brought home since 1978. In extreme cases, even rotten food and toe-nail clippings can be impossible to part with.
I remember one client we had briefly who couldn’t shower because the bathroom was filled with old papers and mechanical devices. To get through his front door, you had to turn sideways to navigate the stacks of stuff. He had to sleep sitting upright in a chair because his bed was covered with piles of debris. Storing his things was more important to him than is safety or comfort.
Another client, one of the first I had after launching my agency, had lived in a large apartment for forty years. Financially, she was extremely well off. She had held an administrative position with a large company for many years and was still working there past retirement age. In her free time, she traveled extensively and brought back souvenirs from all her trips.
When I was called in by a geriatric case manager to help her move to an assisted living, I found her living in squalor. Her expansive apartment was filled to the gills, making the place a hazard for her. In addition to the danger the piles of stuff both old and new presented, the apartment was overrun with cockroaches—they were on the walls of her kitchen, in her laundry basket, in the drawers of her bedroom furniture. Yet her clothes were pretty, and in conversation she seemed quite mentally competent.
I worked with this client for months to gradually persuade her to allow us to throw things out, fumigate her remaining possessions, and move her to a place that would be healthful for her. I am delighted that we succeeded, but I know that for many hoarders the change would have been unthinkable.
People of any age can suffer from hoarding syndrome, but for many older adults Diogenes and elderly hoarding disorder pose very serious problems, to both themselves and others.
What is Diogenes Syndrome?
Researchers have described Diogenes syndrome as “a special manifestation of hoarding disorder.”
According to Psychology Today, “hoarding is often a consequence of having DS, but (DS) is associated with self-neglect and much of the items excessively hoarded are typically items of trash with little or no value.” People with DS often live in severe domestic squalor and unsanitary conditions. The syndrome is characterized by poor personal hygiene, extreme filth in the home, social withdrawal, compulsive hoarding of trash, indifference, and lack of shame.
DS can occur in anyone but is most often seen in people over the age of 60. In combination with other common ailments of age, DS can lead to illnesses such as pneumonia, or accidents like falls and broken bones.
Symptoms of Diogenes Syndrome
Symptoms of DS can vary, and usually appear over a period of time. Often, by time diagnosis occurs, a cluster of signs are present, including symptoms of self-neglect. Others include:
- Withdrawal from social situations
- Poor judgement
- Changes in personality
- Paranoia or general suspiciousness
- Skin conditions caused by poor hygiene
- Unkempt hair and fingernails
- Body odor
- Unexplained injuries
- Poor nutrition or diet
- Lack of shame regarding their unkempt appearance
In addition, the person’s home will also likely display some signs, including:
- Rodent or insect infestation
- Unsanitary or unsafe living conditions
- Overwhelming amounts of household items and waste
- An intense, unpleasant smell
Often, symptoms are difficult to distinguish from those of other conditions such as schizophrenia and frontotemporal dementia – and, in fact, dementia is present in up to 15% of people affected by DS.
Causes and Diagnosis
Research is still being done to improve understanding of Diogenes Syndrome, but there are certain conditions that are known to be risk factors. Often, a specific incident will trigger symptom onset. Examples include:
- Death of a spouse or loved one
- Retirement or divorce
- Loss of mobility due to injury
- Depression or anxiety
Experts suggest that at least half of the time, symptoms occur in individuals with no prior history of mental illness. Paired with the fact that affected individuals rarely reach out for help, diagnosis can be difficult. Often, it occurs only after a family member seeks intervention or neighbors repeatedly complain.
There is no official treatment for Diogenes Syndrome, but ongoing care is important. People with the disorder may be at risk for life-threatening illness or injury if left untreated. In addition, those around them are at risk of environmental harm.
Doctors may order imaging to rule out similar disorders or personality assessments to shed light on the root cause. Behavioral therapies, such as those used for anxiety or depression, often help — and if the person is able and willing to take part, support groups can be useful. In addition, having a caregiver come to the home to check up on the individual is often recommended.
In extreme cases, the person may need inpatient treatment. Each case needs to be handled on an individual basis and with extreme care, as individuals are often distrustful of others (especially the medical establishment).
If all else fails, referring people to Adult Protective Services (APS) is an option. Within 72 hours of referral, a face-to-face meeting with the adult by a trained social worker will occur.