Sep 25, 2017

“We’ve Excluded People with Dementia From Society” – It’s Time For a Change

Australia has an ageing population – there are more older people than ever before, and with it, an increasing number of people with dementia.

September is Dementia Awareness Month and it is during this time that Tamar Krebs, Founder and CEO of Group Homes Australia, hopes to see some changes in people’s attitude towards people with dementia.

“We know dementia will become the number one cause of death in Australia in the next coming years. Right now it’s the second leading cause of death,” says Tamar.

However, there are many misconceptions, “a lot of people just think that as you get older you’re going to get dementia – and that’s a huge misconception”.

“People have this idea that people with dementia are ‘crazy’ or that it’s a normal part of ageing.”

“I think the more we are educated the more we can be informed”.

Tamar believes that we, as a society, need to be better informed in how  to include people with dementia.

“Because until now, we’ve excluded people with dementia from society – we lock them up, we don’t include them – dementia awareness allows us to learn new ways to care for these people and engaging them in society.”

The Challenges Families Face

Tamar says that there is a common theme among most families she’s met with through her career, “essentially families, by the time they meet us, have been struggling for a very long time and they’re grieving”.

“So there’s a lot of anger and a lot of resentment. And a lot of what [the family] shares with us is what the person can no longer do.”

“Part of what we do is to help identify what the person can still do and really tap into their abilities and create activities and build a life around what they can do”

“For the families, if there is so much grief around their loss, then they can no longer see that”

Tamar talks about the counselling process families go through when they become involved in Group Homes Australia – because it’s not just the person with dementia that needs support.

“We see the resident as two-fold – the person with dementia, and the person touched by dementia; that can be a partner, their children, it can be an old friend, a guardian a power of attorney”

“And they really need to be guided because they’re not trained and they don’t know – and many times they come to us as a crisis”

“And they really need to be supported and coached, not just emotionally but sometimes physically too because they’re exhausted.”

Helping Yourself To Help Others

Information and education is the key to improving care, Tamar believes.

Understandably, many families and loved ones are unsure of what is happening and what to do with a loved one who has dementia.

However, there is a wide range of accessible information available online that anyone can use, “Alzheimer’s Australia have phenomenal fact sheets which people can download off the web,” says Tamar.

“And those are really important because there are so many different types of dementia and it’s really important to know the different stages”

“For example, if something that worked last year suddenly isn’t working anymore – like a strategy they’ve been doing, then it’s time to inform themselves of the next stage and the next phases.”

Dementia care is ever-evolving, “what worked yesterday won’t necessarily work today and your approach has to change because the dementia journey is constantly changing – so it’s important to tap into that”.  

In residential care, it’s important for staff to know every single resident and their families, something that Tamar herself does despite being CEO.

“If I’m making the promises, I have to be able to know what we are delivering”.


Every Resident has Their Story

Tamar talk fondly about some of the memorable residents she’s had the opportunity to interact with.

“We had one gentleman who was a tradie,” she tells, “he was kicked out of several nursing homes because they labelled him as ‘aggressive’ and he kept trying to scale the fence”

The 75 year old man was a “big guy”, and someone who was “very used to being active”.

“And so sitting him in a lounge room with a bunch of frail women playing bingo was completely triggering him to become aggressive”.

“So when he came to us, we looked at his background and found that he was a tradie for many many years”.

“I said to him, ‘look, we have this fence and we really need help painting it – would you mind helping us out?’ and we bought him a bucket of paint and a small paint brush and he loved it”.

“Every morning he would be up at 5 o’clock, starting to paint the fence, take a break for lunch and it took him two and a half months to pain the entire fence”.

“He felt it was purposeful, and his family was ecstatic because he stopped scaling the fence and being agitated. In fact, we didn’t have to medicate him”.

“It was about tapping into something that was meaningful to him – if you gave this to a frail lady, that wouldn’t work.”.

“What we find is that many of the residents are able-bodied, it’s their cognition that is diminishing”.

“And that’s where much of the frustration comes from – the ‘control tower’ is compromised”.

This Dementia Awareness Month, Tamar hopes that inclusion is something that improves, “I’d like to see people include people with dementia in their local communities”.

“If you know someone living with dementia, engage them, invite them, find out more – don’t be scared of them.”

“These are people that have been living in our neighbourhood for decades – and they deserve to have the dignity and integrity that any other civilian has”.

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