Staying meaningfully engaged

Day 18: Dementia Awareness Month 2014

Kate 30 storiesAlzheimer’s Australia have been highlighting stories every day as part of their Dementia Awareness Month program, and this week, this image and quote was featured. Dementia friendly communities is the theme in Australia this year, and as such, the focus has been on hearing from people with dementia from all over Australia.

A Facebook Group, Young Onset Dementia Support Group in Australia has also been featuring stories and quotes from people with dementia, which has been enlightening and inspiring. People with dementia have a lot to say about what it is really like for them, and it would seem, are speaking up all over the world now. Hip Hip Hooray…

Dementia Alliance International has just had its third Master Class on Advocacy and Speaking out, which I will blog there tomorrow. It seems the time is now that we are truly joining together and speaking out as one. Not one in the sense it is the same experience for all of us, but as one in the sense of ensuring our individual needs are being met.

As Don Burke ignorantly said in a DVD he released in time for Father’s Day this year, healthy eating and having a curry once a week with turmeric may not prevent or cure dementia, and we are NOT all dribbling down out shirts!!!

Shame on you Don Burke from Burke’s Backyard for your ignorance. I commented to him via twitter and his website, and wrote the following on his Facebook page, but have not had a response yet:

“I am a person living well with dementia, advocating for our basic human rights, including how we are perceived by the public. Yesterday I was alerted to an appalling show of ignorance in the latest “Back to the Kitchen” DVD, released in time for Father’s Day. Don mentioned dementia several times and on the final time he stated that he was in favour of growing his own veggies and eating healthily so that he would not end up like people with dementia sitting around “dribbling down their shirt”. I feel very sorry for the fathers out there who may have dementia… How incredibly ignorant and offensive this is, and absolutely wrong. As a public figure, Don Burke should be more sensitive, and far better informed and educated about dementia. This is exactly the type of myth that we need to change, and if such a public figure talks about us like this, then my work will never be done! It is Dementia Awareness Month, and the theme in Australia is on Dementia-friendly communities – this ignorance simply feeds the myths. You would do well to visit my blog http://kateswaffer.com and Alzheimer’s Australia www.fightdementia.org.au as well as tune into the work of Dementia Alliance International, a group of by and for people with dementia, www.dementiaallianceinternational.org”

6 thoughts on “Staying meaningfully engaged

  1. That is one DVD I won’t be buying!! As you know Kate, my dad had dementia & I find the comments by Mr Burke highly offensive. For any dads currently living with dementia that is a horrible stereotype and very upsetting for family members too. Well done you for telling him what you think!! Go Kate!! xx

  2. Well said Kate. The media have a lot to answer for as they are at the forefront of influencing public opinion and our National Broadcaster – ABC – is no better than Don Burke. There have been reports this week of a lady missing from a nursing home who has dementia and the journalists reporting this event have referred to her, using the all too common cliche, as ‘suffering from dementia!!’ Now the ABC has strict guidelines for the correct use of spoken English, so, isn’t it time they also had a copy of the guidelines for the correct langauge to use when referring not only to those who have dementia but also any other form of illness or infirmity!

    • Thanks dear Valerie… you are right, they do need to start respecting us, in the same way they do any other disabled person. I am hoping the new language guidelines will be sent to all media outlets in Australia, and am working on holding a forum next year to have it discussed as part of a panel. x

  3. Thank you Kate for challenging this horrid stereotype. Thanks to you and others who speak out so many of us know better. There’s nothing like seeing you really living a full and engaged life with the condition. Take care my dear x

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