Help for hoarders, and those who care for them
Dr. Eleanor Barbera
It can be challenging for long-term care providers when residents amass large quantities of possessions. Facilities generally worry about hoarding when the amount of belongings prohibits the resident or staff members from safely moving about their room or apartment.
Other concerns include fire safety and the possibility of attracting vermin in spaces that are unable to be properly cleaned, as well as apprehension that a cluttered room will attract negative attention from state surveyors.
On the other hand, cleaning out a room against the will of a resident could be perceived as a violation of their right to “security of possessions.”
Facilities often feel stuck between the proverbial rock and a hard place.
Over the years, I've observed many different scenarios that arise when facility try to manage residents' hoarding. Here's a small sample:
• “The State is going to be here any minute,” the Director of Social Work told me, her voice rising a couple of octaves with panic, “We need you to tell Mrs. White that she's got to get rid of all that junk.”
• Hoarder Number One, complaining bitterly about Hoarder Number Two: “Why are they telling me I need to throw away my things when she has even more stuff than I do? Her room is a mess! At least mine is organized. They just don't bother her because she's friends with the administrator.” (All accurate perceptions.)
• Comment from the maintenance guys to the hoarding resident after showing up at the door with cardboard boxes and a dolly: “We're going to pack up your room for a few weeks until after the State visits, then we'll bring it back.”
• Sitting with Ms. Rosario following an unannounced purge of her room while she was at dialysis: “How could they do this to me? I trusted them! That stuff was really important to me,” she said, referring to, among other things, an assortment of straws and every food tray slip she'd gotten since her arrival at the facility over a year ago.
What is hoarding?
Hoarding disorder, according to the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V) from the American Psychiatric Association is defined as "persistent difficulty discarding or parting with possessions, regardless of their actual value” which leads to a cluttered and frequently unsafe environment.
It's important to recognize that those who hoard are often distressed by the results of the behavior and its impact on their lives. Hoarders sometimes withdraw socially so that others don't see their cluttered homes. Others deny that it's a problem despite concerns voiced by friends and family members. For those with hoarding disorder, the compulsion to acquire belongings is out of their control and the thought of getting rid of the items causes distress.
Approaches for LTC providers
By the time hoarding residents reach long-term care, they've generally been engaging in this behavior pattern for decades so change is unlikely to come easily. Still, with assistance from trained staff members, there is hope for improvement.
• For hoarding residents who have recently left their homes to join the community, provide mental health support immediately — before the clutter has a chance to develop. Residents who have already created a chaotic, unsafe space should also be referred to the consulting psychologist or to the social worker.
• Given the unlikely chance that the consultant will be a hoarding expert, direct the service provider to this article about a promising treatment approach and to the resources following this column.
• Make referrals for hoarding well in advance of anticipated state surveys. Research shows that it takes months to reduce the clutter.
• Don't purge rooms of belongings without resident consent. Not only is this a violation of the resident's rights, it can lead to extreme emotional distress.
• Use a team approach. While the psychologist or social worker can be the lead, other team members such as aides or environmental services workers can be trained to assist in helping the resident with clutter removal.
• Give the resident as much control as possible over the process. This can include choosing the area in which to begin, the aides with whom they feel most comfortable working and which items to dispose of first.
• Keep things in perspective. Researchers use tools such as the UCLA Hoarding Severity Scale, which includes photos of cluttered rooms rated 1 through 9 to assess the level of disarray. As can be seen in the pictures, it's very likely that what seems like a terrible mess is actually quite low on the severity scale.
• Use the resources below, which include a book about hoarding for hoarders, info about support groups, and links to websites with helpful tips.
Perhaps you're thinking, Dr. El, all that's great, but The State is going to be here any day! What can we do? In that case, you could try the technique used by one clever and pragmatic nursing supervisor — with permission, she boxed up as many of the resident's possessions as possible and stacked the boxes along the wall by the door. Anyone taking a quick look into the room had the impression of a neat and orderly space.
Eleanor Feldman Barbera, PhD, author of The Savvy Resident's Guide, is a 2014 Award of Excellence winner in the Blog Content category of the APEX Awards for Publication Excellence program. She also is the Gold Medalist in the Blog-How To/Tips/Service category of the 2014 American Society of Business Publication Editors Midwest Regional competition. A speaker and consultant with nearly 20 years of experience as a psychologist in long-term care, she maintains her own award-winning website at MyBetterNursingHome.com.