There are 2 new studies about compulsive hoarders you might not know about.  They’re being conducted by researchers at Case Western Reserve University.  These online surveys explore the relationship between someone with OCD or Hoarding tendencies and their relatives or loved ones.  Researchers hope the information gathered from these surveys will help improve therapies for OCD and hoarding (Goodness knows we need that!), and to also create an awareness of the complexities of the relationships surrounding those with these disorders.  You must be at least 18 years old to participate.  The bonus (other than science learning more about hoarding) is that entries are eligible for a draw for a Target gift card. You can choose to remain anonymous, and the site outlines their privacy procedures right up front.

I was approached by Dr. Amy Przeworski, Ph.D., Assistant Professor at the Department of Psychological Sciences at Case Western Reserve University.  She reached out hoping to bring more attention to her studies, and I’m so glad she did.  Currently, there’s no formal information out there about the effects of compulsive hoarding on relationships, and she seeks to change that.  Our goals are aligned, as that’s what I’m trying to do with this blog.  I sometimes compare having a relative with hoarding to having a relative who’s an alcoholic.  I don’t dispute alcoholism is terribly serious and harmful, but the stigma isn’t as severe as it is for hoarders, and there are WAY more social supports in place from rehab to 12 step recovery to groups like AA, Al-anon, and Alateen.  Other than the Children of Hoarders website and blogs like mine, relatives of hoarders are still mostly on their own,

Two Studies, Different Approaches

The 2 studies have different veins…one is for the relative or loved one of a hoarder.  I completed this one, and encourage anyone in similar shoes to do so.  It didn’t take very long, although I found some of the questions about OCD unrelated to my situation.  You can skip anything not relevant to you, but your personal experience is valid!!

The other survey is for people who hoard or those with OCD to complete.  You can imagine how difficult it is to get enough people for this one…most hoarders have a lack of insight.  They don’t see themselves as having a hoarding problem, and so simply wouldn’t even attempt to answer this survey.  I know the researchers need at least 40 more entries to get a solid base for their research, so I ask if anyone reading Not Just Clutter who IS a hoarder and are stuggling with getting better to reach out and complete this survey.

Study Links

For individuals with OCD and/or hoarding: http://psychology.case.edu/research/fear_lab/participate.html

For relatives and significant others of those with OCD and/or hoarding: http://psychology.case.edu/research/fear_lab/participate.html


Thanks to the Kings College London Institute of Psychiatry (the same people doing the Hoarding Study I recently participated in), I’ve learned compulsive hoarding is likely to be included as a new mental disorder in the Diagnostic and Statistical Manual for Mental Disorders or DSM-5. DSM-5 is due to be published in 2013.  I’m hoping this means more research and attention being devoted to treating compulsive hoarding.  I also hope it means less people thinking hoarders are just lazy deadbeats who just need to throw a garage sale.  There’s something about this being made “official” that gives me some hope.

Below are the proposed diagnostic criteria for Hoarding Disorder. All criteria A-F must be met to qualify for the diagnosis.

A. Persistent difficulty discarding or parting with possessions, regardless of their actual value.

B. This difficulty is due to a perceived need to save the items and distress associated with discarding them.

C. The symptoms result in the accumulation of possessions that congest and clutter active living areas and substantially compromise their intended use. If living areas are uncluttered, it is only because of the interventions of third parties (e.g., family members, cleaners, authorities).

D. The hoarding causes clinically significant distress or impairment in social, occupational, or other important areas of functioning (including maintaining a safe environment for self and others).

E. The hoarding is not attributable to another medical condition (e.g., brain injury, cerebrovascular disease, Prader-Willi Syndrome).

F. The hoarding is not better accounted for by the symptoms of another DSM-5 disorder (e.g., hoarding due to obsessions in Obsessive-Compulsive Disorder, decreased energy in Major Depressive Disorder, delusions in Schizophrenia or another Psychotic Disorder, cognitive deficits in Dementia, restricted interests in Autism Spectrum Disorder).

For people meeting all diagnostic criteria A-F, the following ‘specifiers’ can be noted as well:

Specify if:

With Excessive AcquisitionIf symptoms are accompanied by excessive collecting or buying or stealing of items that are not needed or for which there is no available space.

Indicate whether hoarding beliefs and behaviors are currently characterized by:

Good or fair insight: The individual recognizes that hoarding-related beliefs and behaviors (pertaining to difficulty discarding items, clutter, or excessive acquisition) are problematic.

Poor insightThe individual is mostly convinced that hoarding-related beliefs and behaviors (pertaining to difficulty discarding items, clutter, or excessive acquisition) are not problematic despite evidence to the contrary.

*I believe this is where my Mother is, leaning towards Absent insight.

Absent insight (i.e. delusional beliefs about hoarding): The individual is completely convinced that hoarding-related beliefs and behaviors (pertaining to difficulty discarding items, clutter, or excessive acquisition) are not problematic despite evidence to the contrary.

You can find more information in the DSM-5 website.


I am posting this on behalf of the King’s College London where researchers have put together a study about compulsive hoarding.  I’ll be participating to help further the awareness of the effects of hoarding on relatives, and I encourage you to get involved if you’re in a similar situation.  I’m not eligible for the compensation since there’s no way I can get my Mom to participate, and I’m not being paid to post this for King’s College in any way.  I’ve been emailing back and forth with the researchers, though, and find them to be genuinely interested and quick to respond.  Here’s hoping they learn something positive towards coping with compulsive hoarding.

Hoarding Study Needs You

Researchers at King’s College London are currently carrying out a project investigating the impact of hoarding across important areas of life (e.g. memory and planning, acquisition, familial and other interpersonal relationships).

Currently, the team is looking for individuals who either identify as a hoarder OR have a relationship with someone who hoards to complete a series of online questionnaires (approximately 25 minutes) and, potentially, a brief telephone interview (approximately 15 minutes). Participation is accompanied by a small financial compensation of £5.

As a central question in this study concerns the impact of hoarding on relationships, the team is asking that all hoarders provide one person (spouse, parent, adult child or other close acquaintance) who would be willing to complete a similar, but separate, online survey. Likewise, if you are the spouse/parent/child/etc of a hoarder, then the research asks that your hoarding relative/friend be willing to complete that portion of the project.

If you’re interested in learning more, check out the study website (www.hoardingstudy.com) or contact a member of the research team directly at: helena.drury@kcl.ac.uk