We didn’t receive any questions from readers this month, so we’ve decided to write on a topic of our own choice……hoarding. Surprisingly, one of the most vexing problems that health officials and aging service workers face is hoarding……….people who allow clutter to accumulate to the point where their homes become uninhabitable or even dangerous fire traps. We’ve all known “pack rats” and may even be one ourselves (that’s the case for one of us whose first name starts with the letter “C”). Or we’ve heard about people who “collect” animals (cats seem to the most common), accumulate paper piles, mountains of clothes or seemingly useless junk, but still, the stories and photos shock us. Little pathways between the piles going from bed to bathroom or kitchen exist, but all surfaces are covered with piles of stuff, sometimes five feet high. A sad case comes to mind in which a woman’s house, including her bed, was piled so high with newspapers she had to climb up to sleep on top of them. “How could someone live like this?” we ask ourselves. Yet, thousands of people do. Is it a medical disorder? Why don’t they seek help? Can anything be done to help them?
We have a guest expert to share what is being done locally. But before we turn to her, we want you to have a physician’s perspective. Is it a medical disorder? Cliff considers it a symptom, not a disease, although it is defined as a separate psychiatric condition in the new Diagnostic and Statistical Manual of Mental Disorders 5th Edition (“DSM 5”). According to the DSM 5, hoarding to excess can occur in people with no other medical or psychological condition but the tendency to either acquire things excessively or never get rid of them (or both). People who hoard usually live alone and are isolated, although sometimes couples hoard together because of shared psychological or medical reasons. There are many medical, neurological and psychological conditions in which people lose the ability to deal with clutter. Hoarding may be a symptom of attention deficit disorder, obsessive compulsive disorder, medical conditions producing excessive fatigue or weakness or chronic pain. People may be depressed or have lost cognitive function and ability to care for themselves or their surroundings. It is estimated that 2-6% of the adult population in North America and Europe live in excessive clutter or even squalor. The prevalence is three times higher in older adults although hoarding tendencies can begin early in life.
Hoarders do not usually seek or accept help. They may be embarrassed by the clutter or become so used to living that way it seems normal to them. In some cases, the hoarding meets some psychological need and dealing with it creates too much anxiety. In almost all cases, people don’t like others, even friends and family, going through their personal possessions and deciding what gets thrown out and what gets given away.
In the most severe cases, hoarding to the point of danger (fire risk, infectious disease from animal hoarding in closed quarters, etc.) may allow health authorities to intervene. In these and even the less severe cases, the risk of falling in the home for hoarders and others increases dramatically as does the rise in various health hazards including rodent and insect infestation, mold growth, and high levels of dust. Sometimes, the severity of the hoarding and squalor don’t come to light until there is a crisis of some sort – a hip fracture from tripping over clutter, a fire, etc. – and the person ends up in the hospital. If there is apparent “self-neglect” (which often co-exists with severe hoarding in old age) we may be able to intervene through the guardianship process. In less extreme cases, people may accept help in “de-cluttering” when they have to leave home and move to assisted living. In milder cases, people may accept help with periodic efforts to de-clutter, but this will likely have to be done every so often since hoarding tendencies are usually life-long. Recent research studies have shown some benefit from cognitive-behavioral therapy (“CBT”), but therapy is not an option when people don’t acknowledge the problem or want help with it. Psychiatric medications are usually not helpful unless the hoarding is a symptom of another mental disorder such as schizophrenia, obsessive compulsive disorder or depression. Medical treatment may be helpful if pain, shortness of breath, or fatigue are the primary causes.
In conclusion, a common profile of a hoarder is that of a socially isolated person who lives alone, is indecisive, fears living in scarcity, and may also have compulsive buying tendencies. Most commonly, they collect newspapers and other paper, clothing, books, containers, food, and other people’s junk. It is someone who will often deny they have a problem, minimize it, rationalize why they do it, or avoid the issue all together, all of which ultimately prove to create significant barriers to seeking treatment. Helping such individuals is often a major challenge for loved ones and professional alike.
We now turn to Dyan Walsh, Director of Community and Family Caregiver Services at the Eastern Area Agency on Aging, our invited expert, to update us on what community agencies are doing to begin to more directly address this issue.
Dyan points out that “the visibility of the hoarding issue and the need for supportive community resources for hoarding cases in Eastern Maine has been increasing in recent years due to the growing aging population and the popularity of hoarding shows on cable TV. Community organizations are scrambling to help families figure out how they can support their loved ones when they struggle with hoarding and excessive clutter. The Eastern Area Agency on Aging is one community organization that started to see an increase in calls from older adults who were looking for rental housing because they needed to move from their current living situation because of hoarding. In September of 2013, to respond to that need, Eastern Area Agency on Aging gathered an interested group of community organizations and started the Hoarding Workgroup of Eastern Maine. This group is modeled after a similar group in Portland called the Maine Hoarding Taskforce. None of the individuals who make up the Eastern Maine workgroup have special expertise in hoarding but they all work for organizations that are seeing an increase in people needing hoarding resources. The group is varied including the housing authority, code enforcement, social services agencies, home health, primary care and state officials. This group has been focused over the last nine months on education on the topic of hoarding and also learning what is available in the community for support. What they have determined is that Eastern Maine is greatly lacking in mental health providers who focus solely on the topic of hoarding. They have also found that for low income individuals, paying for the resources to clean out a home is expensive and is often an insurmountable barrier. The group continues to meet on a bi-monthly basis to talk about how they can find creative solutions for communities that need support.”