Dementia in the public domain

consumer conference

Tara Quirke and Danijela Hlis (members of the CDPC Consumer Group)were privileged to attend the recent Anglicare conference and with our thanks to the CDPC for sponsoring us, Anglicare for having us and Dr Irja Haapala and Prof Simon Biggs for including us in the running of the workshop, we are happy to share this with you.

There were some great speakers at the conference. My favourite was the charismatic Charlie King, sports commentator on ABC and great advocate for Aboriginal people and their fight against domestic violence and addiction. Charlie’s mother is a Gurindji woman and he is the founder of the NT born campaign NO MORE. Prof Simon Biggs also gave a great talk that made us really reflect and look at things more closely.

Day 2 of the conference was for the delivery of the CDPC Activity 18 workshop: “Public perceptions of dementia and general intelligence.” The aim of the session was to examine the role of intergenerational relationships in the way that dementia is described in the public domain. The outcomes will be used to inform research for the CDPC and will include input from our consumer and provider advisory group.

We had four tables of participants of various ages and while Irja and Simon have a full feedback on all questions raised, I personally noted that some believed that perception of dementia, as well as awareness of this condition, may not have so much to do with our age, alone, but also our exposure. For example a professional lady of CALD background who works in the field was very well informed, aware etc. but she told us that her family and friends who work in different fields and are of the same age-are not.

To the question :how can a campaign on dementia engage better and what types of campaigns to look at: we mentioned that many already exist but the general community is unaware of them (the problems of knowledge translation). Suggestions included more accessible avenues such as more plays, soap operas for TV, radio etc., where people with dementia play a role; engaging church, school, social clubs, bi cultural social clubs to participate, etc.
I would have liked to hear from a few consumers, those who receive Anglicare help/assistance, as well as their carers, cleaners, all people who make up Anglicare.

And I had an idea:

Could AA, and all those associated with it, including high profile people, researchers etc., give themselves a task of spending a day in a home of a person with dementia and his/her family? TO LIVE IT FOR 24 HOURS?

Charlie King introduced his friend Kevin (with two cultural backgrounds), who told us his personal sad story; and also we were given the pleasure of watching two dance groups (one with children), and the other one with Aboriginal men from a nearby prison facility), perform native dances, with joy and pride.

On the front page of The Review (Anglicare Australia 2016), THE FIRST CAPTION READS: “Leaving no one behind.” I did feel that people with dementia and their carers have sometimes been left behind.

Danijela Hlis and Tara Quirke: CDPC Consumer Representatives