In Dementia Awareness Month 2017, the Dementia Australia Dementia Advisory Committee (AADAC) celebrates its 4th birthday. The AADAC was formed in 2013, and held its first formal face-to-face meeting at the Brassey Hotel in Canberra on 17-18 September 2013. Mr Glenn Rees AM, then CEO of Dementia Australia and now Chair of Alzheimer’s Disease International, plus two key staff, Dr Ellen Skladzien and Ms Samantha Blake, were in attendance.
This committee was formed following 19 months of advocacy, after I met the members of the Scottish Dementia Working Group celebrating their 10th birthday at the Alzheimer ’s Disease International (ADI) 2012 conference in London. Our aspirational group was at the time, the fourth of its kind in the world, and the first in Australia. The vision behind the committee was to give a fully inclusive and autonomous voice to people living with a diagnosis of dementia in Australia.
The broad purpose of the Dementia Advisory Committee was and still is to build on the consumer focus within Dementia Australia, specifically driven by people with dementia. Dementia Australia continues to be committed to consumer involvement across all aspects of the organisation including policy, advocacy and research, and the creation of the Dementia Advisory Committee strengthened consumer involvement and advocacy at all levels of the organisation.
The Dementia Australia Dementia Advisory Committee was also the first consumer committee in Australia to be comprised entirely of people with dementia. The aim of the committee is to work with Dementia Australia to promote dialogue between those with dementia and service providers with a view to promoting a better understanding of our social and care needs, and to assist in the refining and evaluating of Dementia Australia’s national programs.
It is a wonderful opportunity for people diagnosed with dementia to become actively involved in shaping dementia services and policies, the very things that affect the futures and daily quality of life for people with dementia and our families.
I was elected as Chair for the first twelve months, and Eric Garnett was elected as Vice Chair. As a group, our expertise was not restricted to the lived experience of dementia, and we had then, and have now, people from a plethora of backgrounds, including for example, former nurses, a past principal of a girls’ private boarding school and an accountant. The membership age originally ranged between 44 – 73 years old, and it is important we always strive to represent a broad age range as it impacts us differently.
The original committee consisted of 12 people with dementia from around Australia, from both metropolitan and regional areas, to ensure there was a cross section of views. We always intended to broaden membership to include representation from our Indigenous, CALD and LGBTI communities and we continue to seek a balance of needs and experiences in our membership.
Jean Georges, the CEO from Alzheimer’s Europe reported in 2012 that the experience of these groups, run by people with dementia, for people with dementia, is that the contact with others with dementia gives people with dementia greater self confidence in speaking out in public and in raising awareness.
It was interesting to note back then, that Antonia Croy from Alzheimer Austria, had highlighted in a discussion about the group set up in Europe, that sometimes over-protectiveness by care partners could become a barrier and that it was necessary to help care partners to understand the advantages of specific groups for people with dementia.
This is important to note as we endeavour to increase the number of people who want to become advocates in Australia and globally, as the need to pass on the baton for leadership and speaking roles is more significant than it is for people without a diagnosis of dementia.
Our youngest member of the committee said at the first face-to-face meeting;
"It is my right to speak for myself, no matter how much time it takes me, or how much of a struggle it is".
Self-determination was always a key priority to our vision.
Here are a few more comments from the feedback session following that first meeting:
“I thought this new group would be a waste of time and money, but am thrilled to see that people with dementia are still so capable of speaking up, and how productive it has been.” (Care partner, after day one)
“It was an emotional and moving couple of days.” (Dementia Australia staff member, feedback)
Finally, it has been my great pleasure and an honour to have founded this group. I know that it is in safe hands with its new leadership and members and we are very fortunate to have the leadership and commitment of our new CEO, Maree McCabe for this committee, who I welcome and congratulate in her new role. I also wish to congratulate Mr Ian Gladstone who took over as Chair in February 2017, to thank members past and current, and wish the group well for the future.
Inaugural Chair (September 2013 - February 2017) and current member of the Dementia Australia Dementia Advisory Committee; Chair, CEO & Co-founder of the Dementia Alliance International; Member of the World Dementia Council; Board member and ADI Regional Ambassador of Alzheimer’s Disease International.