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Hoarding appears in about 36 percent of cases of frontotemporal dementia (FTD). Even if you can't eliminate the problem without professional help, you don't have to let your loved on live in dangerous isolation and squalor.

Hoarding is a relatively common complication of frontotemporal dementia, also known as FTD. Not everyone who is a hoarder has frontotemporal dementia, but between 30 and 40 percent of people who have frontotemporal dementia are hoarders. People with this unfortunate condition accumulate material objects in a misguided effort to be self-sufficient in the face of any circumstance. Hundreds, thousands, and even tens of thousands of unopened packages of food, clothing, and household items accumulate and fill the living space. Dirt, dust, insects, and vermin also accumulate and fill the living space.

Hoarding has been recognized at least since the fourth century BCE. In addition to his famously carrying around a lamp to find an honest man, the Greek philosopher Diogenes also shunned traditional housing. For a while he lived in a barrel. To establish his independence from his peers and to promote his ideals of “freedom from emotion,” “life according to nature,” and “lack of shame,” Diogenes also hoarded the minimal possessions he needed to live. 

Hoarding has also appeared in literature for centuries. Convincing descriptions of hoarding appear in Nikolai Gogol's novel, Dead Souls. People in English-speaking countries usually read the story of Miss Havisham from Dickens' Great Expectations. Most people knew the psychological catastrophe concomitant with hoarding that psychiatric researchers later labeled senile breakdown, self-neglect, social withdrawal of the elderly, messy house syndrome, and (literally translated from German) "the messies". You can even watch a series about hoarding and recovery on The Learning Channel.

But what is different about hoarding in dementia?

Who are the hoarders?

About 70 percent of hoarders are over the age of 65. Most hoarders live alone, although sometimes hoarders are married couples, a phenomenon psychiatrists may label Diogenes a deux. Hoarding behaviors tend to set in after an elderly person loses a caretaker. The form of dementia most commonly associated with hoarding is frontotemporal dementia, although it also occurs in Alzheimer's and Parkinsonian dementia. In other cases, hoarding seems to occur as tendencies toward paranoia or schizophrenia are unmasked by old age or traumatic loss of social support. Loss of "executive function," reasoning ability, is common in most people who are hoarders,

Hoarders generally are capable of making some kinds of decisions but not others.  This is more common in frontotemporal and multiple infarct dementias than in other major neurocognitive disorders.They usually retain significant decision-making power even as their dementia progresses. Their competence may fluctuate, so it is challenging to get a court order to take over their affairs. But hoarding is more than an eccentric lifestyle taken to an extreme.

What can you do to help a hoarder?

Sometimes the missing link in an effective effort to get hoarding under control is nutritional. Hoarders tend to have poor diets. They may become sufficiently deficient in key nutrients like folate that they develop some symptoms of Wernicke-Korsakoff syndrome. Even if you can't get a hoarder to clean up the house, you usually can get them to share a meal with you. Feed them nutritious food regularly.

There is no pill for hoarding disorders. That's largely because the psychiatric community does not have a DSM-5 definition for it. However, some doctors report success after patients have been given respirodone (Risperdal, most often prescribed for schizophrenia), valproic acid (Depakote and Depakene, more often given for seizures or migraines), and selective serotonin reuptake disorders (medications similar to Prozac and Viibrid and over a dozen others, usually important in treating depression). The medicine that works isn't prescribed for "hoarding." It is prescribed for some other recognized psychiatric condition and the result is an improvement in hoarding behaviors. Getting your loved one psychiatric help not specifically for hoarding may be what is needed to improve hoarding.

It's easier not to confront a hoarding disorder. However, there are times when hoarding is a danger to health and life:

  • Bathrooms and bedrooms are so cluttered the patient can't use them.
  • The home is so cluttered that falls are likely.
  • There are more pets than the person who has the disorder can manage, or their waste is accumulating in the home.
  • Flammable clutter (paper, cardboard, cloth) is too close to heat sources.
  • Garbage and rotting food are accumulating in the home.
  • Clutter contains sharp objects like knives and glass.

It is necessary to confront these hazards, but you can still choose your battles. First, remove biohazards like pet waste and rotting food. Then move dangerous objects where they won't be accidentally encountered, and eliminate fall hazards. You might have to make these changes when the hoarder is not around.

If you are removing things from a hoarder's home, don't just throw them in the garbage. There is a real risk the hoarder will retrieve them and take them back into the house. (This also applies to rotting food and feces.) Remove them to a location the hoarder cannot access.

Then take some positive steps. Find a way to collect those things that are most important to a hoarder and put them in a special place. Take some time to appreciate them with the person who values them.

But don't waste time arguing with someone who has dementia. Be compassionate. Recognize that hoarding is a way of dealing with increasing incapacity. But don't let the disorder take over your own life.

  • Barocka A., Seehuber D., Schone D. Sammeln und Horten: ein Messie kann nicht anders. Die Wohnung als Mullhalde. [German] MMW Fortschr Med. 200.146:36–39
  • Cipriani G. Diogenes syndrome in patients suffering from dementia. Dialogues Clin Neurosci. 2012 Dec
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  • Shah AK. Senile squalour syndrome: what to expect and how to treat it. Geriatr Med. 1990.36:29–34
  • Photo courtesy of SteadyHealth

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