SEATTLE – according to a small study that appears to be the first of its kind. It is not clear how MS and hoarding may be linked, but study author Joshua Bacon, PhD, an MS researcher and associate professor at New York University, and coauthors suspect that physical limitations are an important factor.
“It is important for clinicians to identify patients who might be hoarders and/or clutterers. It is very likely that this has an impact on the trajectory of their activities of daily living,” he said in an interview prior to the presentation of the study findings at the annual meeting of the Consortium of Multiple Sclerosis Centers.
Dr. Bacon said the study was inspired by his observation that hoarding and cluttering behavior appear to be common among patients with MS. “As I became more interested in it, it became clear there hasn’t been any work on this in the MS population.”
For the new study, Dr. Bacon and colleagues surveyed 139 consecutive patients with MS at the New York University MS Center. The patients had a mean age of 45 years and mean disease duration of 14 years; 71% were female, and 48% were non white. The researchers measured the patients on scales of hoarding behavior (Activities of Daily Living for Hoarding and the Hoarding Rating Scale) and disability (Patient-Determined Disability Steps).
The researchers found that nearly 12% showed signs of clinically significant hoarding behavior, compared with an estimated 5% of the general population (P = .0008). Researchers linked disability and Hoarding Rating Scale to the variability in degree of difficulty in performing activities of daily living (P less than .0001).
Dr. Bacon and colleagues do not believe MS is the direct cause of hoarding behaviors. “There has been no literature on this, and we do not know whether this is connected to the neurological condition,” he said. “I think it has more to do with physical capabilities.”
Patients with MS may have mobility problems that disrupt their ability to organize their homes, he said. “You can’t move things the way you can when you have normal mobility,” he said. “Things can start building up, and it is harder to get yourself out of the mess because you don’t have the wherewithal to move things out of that way.”
As a result, he said, patients may become more isolated if they become embarrassed about inviting people into their homes. To make matters worse, some patients with MS already suffer from social isolation, he said.
He added that some patients with MS may be “clutterers” who do not fit the definition of hoarders but are still affected. “Even cluttering can have an impact on quality of life. You do not have to have the disorder,” he said.
What can be done to help patients who are hoarders or clutterers? Dr. Bacon acknowledged that hoarding behavior is very difficult to treat successfully, but cluttering – a step below hoarding – may be easier to address.
“As therapists, we try to help MS patients confront the debilitating emotional distress that inevitably emerges from the loss of control as disability progresses,” he said. “A central emphasis in therapy is to turn the focus away from the neurological changes and their sequelae that cannot be changed to those facets of their lives over which they can have control and that can be nurtured and strengthened.”
No study funding was reported, and the study authors reported no relevant disclosures.