Nov 03, 2021

Why do people step back when someone has dementia – rather than step forward?

Dementia diagnosis - Asian lady

Many years ago, cancer was referred to as the “C” word and people were reluctant to talk about it until widespread education and awareness spread throughout the world.

Or could it be that there are now some cures for some forms of cancer if caught early enough? 

The same can be said for dementia being referred to in silence as the deadly “D” word, yet there is no cure and inevitably dementia is a terminal disease of the brain. 

Is that why people reject and ignore the person? 

People are strange creatures. When they are unable to cope or know how to behave around a person with a diagnosis that affects the brain and the so-called normal behaviour, they withdraw. 

The once kind, friendly person has shunned you and no longer is willing to engage and enquire how you are anymore. 

Either way, the only way around this is education, education, education. 

By making people aware of what is happening in the brain, then they may be able to understand and have more empathy, tolerance and understanding of what your journey looks like. 

After all, we are all on the same life journey, some stations are lengthier than others and some stops are more challenging. 

People are social beings and when that social interaction is removed then isolation, depression, and anxiety step into the mix along with the dementia diagnosis. 

The support and interaction of family and friends, children and animals are all part of what we come to regard in our lives as normal. 

When a diagnosis of dementia is made, life will never be the same for everyone again. 

A prime example was a Christmas party I attended in a memory support unit. 

For all intents and purposes the scene was that of a group of elders engaging in a social, fun party. 

Family members, sons, daughters, grandchildren were all sharing in the festivities. 

There were no behaviours, no wandering, just people eating, drinking, laughing and sharing a celebration. 

I wonder where dementia went on this occasion.

Did it hide amongst the social frenzy of the moment, or did it forget to interrupt the person’s life for the duration of the party? 

Either way, for that short time, a sense of normality returned to the people who live together 24/7 and were able to recall and remember Christmases past that took over the moment. 

It was truly a joy to behold and made me feel a sense of warmth and hope for the future.

So, let us educate the world, make people aware of what is going on when dementia is diagnosed, and instead of stepping back, step forward and join the journey together.

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  1. Like you say Michael, education is key. But so is creating a sense of community that is inclusive, enabling and supportive of people living with dementia, like what has and is being created in Kiama, Port Macquarie, Ballina, Lithgow and many other communities around Australia. Believe in what you are doing and take inspired action from that place and people will come together in amazing ways. We are designed for community, it’s in our DNA.

    1. Hello Anthony,

      Can you tell us who or what organisation is creating the ‘sense of community’ you describe in Kiama, Port Macquarie, Ballina and Lithgow? Thanks

  2. Hello Michael, I love your article and would like to share it on my Fb page.
    My wife works as a carer at an aged care facility here in Devonport, Tas and I, and my Border Collie, Rosie, do volunteer work at one in East Devonport. I learnt from my wife, and through observation, that carers only require a Cert 3 in Aged Care to be a carer, but not a lot of emphasis is put on dementia care. So I enrolled in all 3 MOOCS developed by the Wicking Dementia Research team at UTAS in Hobart. I was part way into the first one, Preventing Dementia, when I got a call from Professor James Vickers who heads up the team there.
    He introduced himself and then said: “I don’t wish to be rude, or intrusive, but I’m just interested in why a 72-year old man would be studying dementia.”
    My response was: “Because I am 72!” and we both laughed. Then I explained that I wanted to have a great appreciation and empathy for the carers.
    James then asked me about my background. I told him that I had a long history of working with the medical and nursing professions so I speak their language and in my business that I’ve operated for nearly 35 years, I specialise in staff training, team development, mentoring and professional public speaking. James said: “Oh, you are going to make a very valuable contribution to the aged care sector and to GPs.” I responded: “I know what you are going to say, because when I told my GP that I was studying dementia, she asked: “When are you coming to train us?” She then explained that they get minimal training in diagnosing and dealing with dementia. They are so used to being able to write a prescription, or refer the patient to a specialist.
    He then urged me to enrol in the Diploma of Dementia Care as it will not only increase my knowledge of the subject, it will enhance my credibility in the marketplace. So I start that in February.
    This led me to establish another business I’ve called: Talking Dementia. I’m not going to be teaching, or training people, I’ll refer people to the Wicking Dementia Research team for that, but I want to get the conversations started, have carers and GPs air their frustrations in dealing with dementia, the patients, carers and loved ones.
    We recently held a Dementia Expo here in Devonport and the team from Hobart came up and organised it. I spent a week prior to it, circulating posters and flyers to every aged care facility and every doctor’s surgery in a 40km radius.
    We were hoping to have 20 exhibitors, we got 35. We held it from 10am to 2pm one Thursday at the council chambers and we hoped to get 250 people through the doors, we got over 370.
    This success has given us the impetus to run them in 2022 in Hobart, Launceston and Burnie, the 3 other major cities in Tassie, a serious awareness campaign.
    I’m receiving an enormous amount of encouragement from a wide range of folk, I’ll keep you posted.

    1. Hi. I’ve enrolled to do this course however wasn’t sure. Thankyou for sharing your experience it has now encouraged me to enroll and stick at it. I am an Aged Care worker and Dementia is one that tugs at the heart

  3. I am a RN/ Teacher of aged care nurses and I continually tell them to see a clients ability not their disability. I encourage them to complete short online interesting courses on Dementia and the more they learn the better they can care for Clients and the families. Education is the answer and anyone who is interested in learning about Dementia can complete a Free MOOC Dementia Course online with UTAS which is where I started out. Families above all need education about Dementia because initially I find they almost lock their love one down, securing doors, removing car keys etc. and are very confused about their future and the parent, why? lack of being fully informed and educated. Education is the answer

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