Tag: seniors mental health support

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.”

Bob Baldwin completed the Glenrose Hospital’s Short Term Assessment Rehabilitation and Treatment program close to seven years ago. The twenty-week program saw Baldwin attending discussion groups and presentations on memory, relaxation, visualization, depression, panic attacks, and other cognitive and mental health issues. Throughout the program, he made close ties with other participants with whom he connected because they were all seniors and all living with different mental health conditions. As the program was coming to a close, he realized that the work he had begun with the START program should not just end.

“The way the program ends is shuttering and kind of cold turkey,” says Baldwin. He explains that for some, the program ending sees a significant rise in the same mental health conditions they experienced before the program. “The contrast between how good you felt at the START program and then going back to living without it was really bad for some people.”

Realizing that easing off of a mental health support program would be better than simply ending, Baldwin and other friends he had made through the START program began exploring various seniors associations and recreation centres to see what existed to continue the mental health support work. Quickly he realized none existed. “We circled around the city and ended up right back at the Glenrose Hospital,” Baldwin says with a laugh. “That’s when it became clear that we needed to create this support group for ourselves.”

Leaning on his experience in leadership and organizing from his career as a teacher, Baldwin got help from the Glenrose to form START Plus. The staff at the hospital recognized the importance of building on the foundation that had been put in place by the START program and of having it organized and administered by the very people seeking the peer support. At its largest, START Plus had between 12 to 15 seniors regularly attending the Wednesday morning meetings. Finding a permanent home for the meetings proved to be a whole new challenge for the group.

“We would meet at the Glenrose, and we moved all around the building trying to find somewhere private and quiet to hold the meetings,” recalls Baldwin. “But we realized that we would have to find somewhere different to hold our meetings if this group were to be successful.”

One of the group’s members, Marlene Jones, immediately thought of her apartment building as a good venue for the regular meetings. She has lived at Strathcona Place for the past seven years, and remembered there was a large boardroom up on the ninth floor perfect for holding private meetings. The group has been happy in this space ever since, continuing the regular meetings and even having special guests attend, such as the Alberta Seniors Advocate, Dr. Sheree Kwong See.

With the group flourishing in its meetings, the members have grown incredibly close, being able to contact each other outside of the meetings and even creating memorial plans for each other as they face the inevitability of members passing on. The group decided that (if the individual member chooses to do so) as members pass on, they would have stars placed up in the Telus World of Science in remembrance.

“There’s a connectedness to this group; even if the members aren’t around, you know you’re connected to them,” says Jones. “The group has helped break isolation, encouraged us to reconnect, and made us interested in being a part of our communities.”

The mission of START Plus can be summarized as socializing, supporting, and providing a safe place in which to talk. What’s shared amongst the group stays with the group. The trust among the members is paramount to the group’s success, and the regularity of the meetings assures them that when they need it, there will be an ear — actually many ears — to listen.

“Even if there are only two people, we’ll have a meeting,” says Jones. “There would be a lot of disappointment if a meeting were cancelled. It gives us a sense of purpose and adds to our quality of life.”

Baldwin echoes Jones’ sentiment about START Plus giving the members of the group a sense of purpose. As the group selectively looks for new members (many of whom are from the START program at the Glenrose Hospital as well) and stands ready to help establish other groups with a similar mission, Baldwin reflects on why he continues to work so diligently on this group.

“I often get asked why I put so much time into START Plus,” says Baldwin. “It’s really not an onerous job and it gives me a sense of purpose. It’s something to look forward to. There are plenty of Wednesdays when I think ‘I’d rather stay in bed.’ I’m happy, though, every time I make the effort to come out to talk, give some support, and meet with ‘my second family.’”