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Dementia Advocate Verity Jausnik, whose mother Viv is living with dementia, recently gave the closing address at our Dementia Awareness Month Small actions Big difference Roadshow event in Canberra. Here are some highlights from her speech.
There are many different stories of how people with dementia and their families react to a diagnosis, and this reaction is tempered by the level of acceptance and support provided to them by family, friends and the community.
My story is a multigenerational tale of younger onset dementia. My mum Viv and her mum Valerie were both diagnosed in their early sixties. We are a family that supports our loved one’s decisions to be pragmatic and to not let diagnosis nor disease define their lives. Rather than isolate herself, my Mum continues to be as social as possible, just as her mum did.
It is not a joke when I tell people that I am Mum’s social secretary. Between activities with Dementia Australia, coffee with friends, regular movie dates and tours of the National Gallery, her dance card is full. It has kept her active and lively and, more importantly, given her quality of life.
As a carer and dementia advocate, I have been blown away by the genuine empathy and friendship that has been shown to my Mum. Staff at Mum’s favourite boutiques and hairdressing salon will take the extra time to be with her and make sure she’s happy. When Mum was still driving, they would often have her pop in unannounced for a chat or some retail therapy. They would, and still do, offer her a cup of tea and send her on her way after a chat. These are small things, but they make Mum feel not only valued, but that her diagnosis does not erase her sense of self or her place in the community.
I asked Mum what she thinks makes a dementia-friendly community and she said three things, irrespective of what stage of dementia one has:
- Say hello
- Be inclusive
- Recognise a person’s autonomy and individuality
These are all small everyday things that make a big difference to those living with dementia as all too commonly stigma rears its ugly head and causes isolation. These three actions challenge our community to be more diverse and value the contributions of all citizens, including those with dementia.
Challenge and change your thinking on how you describe someone with dementia – they are not sufferers, defined by their diagnosis. They are people who live with dementia and can and should live a fulfilling life no matter where they are on their journey, and we as a community must recognise this, as the benefits for the individual and the community are immense. Small actions equal big differences, after all.