Colleen Simpson started working with GEF Seniors Housing in 1994 and has worked at multiple sites all throughout the organization before landing at Cathedral Close, where she works as an Assistant Manager. One constant that she has noticed, right from her first position at the original McQueen Place, is that hoarding behaviour is prevalent in many seniors. While working at Central Services, former Director of Operations Greg Dewling suggested that Simpson join a group chaired by Sage Seniors Association looking at the problem of hoarding style behaviour.
In 2012, Simpson began working with the Edmonton Hoarding Coalition, a group made up of representatives from non-profit community organizations and people with lived hoarding behaviour experiences. The group’s mission includes looking more into hoarding behaviour, recognizing gaps in services and funding, identifying supports for clients, pinpointing the roles of community partners, and researching the statistics for community presentations. As Simpson explains, much of the information needed to properly address hoarding behaviours is severely lacking.
“Much of the data we rely upon for our research is actual US based because the Canadian research simply doesn’t exist,” says Simpson. “Hoarding behaviour as a condition was only recognized in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in 2013. Much of the research and recognition of this as a disorder is new. Even the research in the US only started about 20 years ago.”
A few facts that are known about hoarding disorder are that older adults are three times more likely to experience the behaviour than younger adults, men are more likely to exhibit the symptoms where women are more likely to seek out help, and that hoarding tendencies begin between ages 11 and 15. As part of working with other agencies to gather data through surveys of reported cases, the group conducted a survey in 2016 that looked at 257 individual cases. The stats have been compiled into presentations for other organizations to help increase the awareness and knowledge of the issue. Though Simpson is proud of the work done in the surveys and being gathered by the Coalition, she also knows where the research falls short.
“The survey only covers reported cases of hoarding behaviour where individuals sought out help and accessed services,” says Simpson. “That leaves enormous gaps in unreported cases and cases where individuals didn’t seek help.”
Though there are other groups like the Edmonton Hoarding Coalition across Canada, Simpson points out that they are not consistent in other cities. She stresses that it’s going to be through the work of community focused groups that will spur more interest and better education around what constitutes hoarding disorders. Simpson explains that even some of her own assumptions from before her work with the Edmonton Hoarding Coalition has led her to inaccurate assumptions.
“I’ve made the call to support services about a hoarding issue and once the workers arrive, they tell me that’s it’s not a hoarding situation,” says Simpson. “Hoarding disorder is so much more than just accumulating things. It’s a whole range of behaviours that when combined, build to dangerous situations.”
Dangers with hoarding situations in the home include blocking electrical outlets and heating vents which can lead to fire, piles of possessions toppling over causing injury, and blocking essential spaces like kitchens and washrooms. For seniors, the issue becomes more hazardous as many live with mobility restrictions and require mobility aids to get around their apartments. There are support services available such as Sage Seniors Association’s This Full House program, which sees outreach workers assisting seniors work through hoarding issues and maintain healthier living environments, but often times the call for an intervention comes much later than it should.
The Edmonton Hoarding Coalition’s goals include setting up a directory of services for people living with hoarding behaviours, even beyond decluttering and waste management. Simpson points out home trades such as plumbers and electricians often won’t work in homes where hoarding is occurring. Finding the services that can help a person while living in a hoarding situation will be key to ensuring they can continue living with a good quality of life.
For Simpson, some of the most important impacts that the Edmonton Hoarding Coalition has had for her are working to change her own attitudes and assumptions and enlightening her as to what to look for when she suspects someone is living with a hoarding disorder. Most important, though, is ensuring she remembers that who she is talking with is a human being.
“We don’t identify people as hoarders, people are not the condition that they are living with,” says Simpson. “Our seniors living with hoarding disorder, or any other condition that may need services and supports, deserve to live with a good quality of life. Without the right kind of data leading us in the best direction, it can be hard to know what are the best steps to take. We’re hoping that the work with the Edmonton Hoarding Coalition will establish that data set needed to increase awareness and work towards building a community that has a better understanding of how to help people living with hoarding disorder.”