My first experience at being an advocate occurred in January 2008, when my father’s dementia became so unmanageable, that my mother needed to leave the family home, as he refused to be placed in an aged care facility. In the months that followed, as divorce proceedings were initiated, it was then left to my twin brother, Peter, and myself, to not only to act as his primary carers but also to defend his rights during a long and bitter marriage settlement process. Which, has still divided the family, even to this day.
Following my diagnosis of Younger Onset Alzheimer’s Disease in July 2019, and my subsequent completion of an 8-week course with Dementia Australia a few months later, I became interested in joining their Dementia Advocate Program. To which I still belong to this day. In January 2020, after enrolling in a clinical trial that was being run by KARA Minds, I have become very passionate about this role. I say this, because where I have been extremely fortunate to respond so positively to this novel anti-inflammatory approach to treating Dementia, I believe it is now my responsibility to continue as an advocate for those who are less fortunate than me. As a result, I initially joined Dementia Alliance International as a member and in December 2021 I was accepted as a Board Member.
My role as an Advocate has been both varied and extremely rewarding, as I feel that I have been able to give others a voice by being able to speak up for them, expressing their views and opinions, both verbally and in written form. To date, I have been asked to complete surveys, questionaries, comment on draft documents and to attend webinar sessions to express my thoughts and views on a range of issues. Throughout 2021, I was asked to offer my opinion on a range of new innovations that have been reported in the media.
More recently, I have appeared as a guest speaker in Podcasts and Webinars that were being conducted by Dementia Australia, Forward with Dementia and Hammond Care International. In June 2022, I will travel to London to present three abstracts at the 2022 ADI Global International Conference on Dementia. On the 9 September 2022, I will also be presenting an abstract at the Hammond Care International Dementia Conference that is being held at the Sydney Hilton Hotel.
As a result, I believe that I have personally grown from all these experiences. Not only has it improved my confidence and self-esteem, but I feel that what I have achieved, and will continue to do in the future, will be of benefit to others who are less fortunate than me.