After being diagnosed with Younger Onset Alzheimer’s Disease in July 2019, I found one of the best ways of adopting a positive mindset and moving forward with my life was to become an advocate.
Whether you are working for an organisation, such as Dementia Alliance International or Dementia Australia, or being a self-advocate, the whole notion of being able to make a difference in the lives of people who are living with dementia, is for me, a very important aspect of the person I want to be.
Becoming an advocate has helped me to create a better life that I value, by
- having a voice and sharing my experiences, insights and ideas
- providing help, guidance and support to others who are also living with dementia.
- working towards reducing the stigma that is attached to receiving a diagnosis of dementia.
Firstly, I joined Dementia Alliance International as a member in February 2020, was appointed a Director in December 2021 and then Vice Chair in 2022.
Secondly, I joined the Dementia Advocates Program that is run by Dementia Australia, where I have been involved in:
- reviewing applications for dementia research and working with researchers
- providing feedback on policy and programs
- sharing my thoughts, ideas and experience in surveys and workshops
- joining focus groups for resource and in-service development.
Thirdly, I became a member of the co-design group that was involved in setting up the Forward with Dementia website.
Fourthly, I became a member of the Focus Group for the Global Dementia Observatory Knowledge Exchange Platform (GDO KEP) which is being developed by the World Health Organisation to highlight good practices in dementia care from around the world. For information, you can go to the website: GDO KEP (globaldementia.org)
Throughout this time, I’ve had numerous media opportunities (including television and print news as well as podcasts) and I’ve been involved in community initiatives to raise public awareness of dementia in the local community. This includes the Hello Initiative, the Ocean Rockpool Tour.
More recently I have presented at the 35th Global Conference of Alzheimer’ Disease International in London in June 2022 and the Hammond Care International Conference on Dementia in Sydney in September 2022. My goal in attending each of these conferences was to show how I manage my diagnosis of Younger Onset Alzheimer’s Disease, focusing particularly on lifestyle changes I’ve made, and how they enabled me to lead a better life. You can read more about this on my website: https://www.awakeningyourpositivity.com
As time has passed, I am finding new ways of becoming a better advocate. I encourage all people living with dementia to consider becoming an advocate. By sharing our experiences and our stories we help to reduce dementia-related stigma, and we help to inform and empower others. This creates positive change with and for people living with dementia. For more information, visit my website: https://www.awakeningyourpositivity.com
More information and actions you can take
- Look into the Dementia Advocates program at Dementia Australia
- Join Dementia Alliance International
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