Understanding the Research and Why We Need to Be Involved

Yesterday I had the pleasure of being on a panel for the ICDW (International Consortium Dementia Wayfinding Summer Series, along with Drs. from Uk, Australia, US, and Canada along with fellow advocate and friend Debra Keay, from Ontario. It was an engaging, interesting two hours, the questions asked brought great things to the table.

Sitting in reflection two things really stood out to me, and I do believe they are connected. One of the things that came out and I have had discussions around this in recent weeks, is how do we the current day advocates encourage others living with dementia to get engaged and involved in research.

Firstly I think just like the stigma that surrounds Dementia, there is also a stigma around research, so many times I have heard, “I don’t want to get involved with people who just want to poke and prod me”. Somehow people equate research with being, injected, having to ingest, and be poked at. I guess that is an image we were fed, So many have not had the opportunity to see how much we can contribute to research in many different ways, how much it creates opportunities to meet others living with dementia, share, engage with the researchers, ( they are actually a lovable bunch, who truly do want to make things better for us). It helps me feel engaged, helps maintain my image of myself, helps maintain and build confidence in myself, feeling like I still have value and worth.

We as advocates need to put a focus on finding ways to get the message out to those living with Dementia. We are always asking researchers and others to help change the stigma around dementia but we also need to help change the stigma around research. We need each other, we need them doing the work they do so we can have better quality of life, they need us to do the important work for finding the things that will enable us to have that better quality of life, because without us they have no way to know and understand from our perspective’s what those things may be.

I am not looking for a cure, I am looking at all the things that can help me maintain a quality of life. They are helping me achieve that by engaging me in various ways on various projects.

We need to find ways to introduce others to the researchers and the researchers to those living with, only then can we get others living with dementia to lose the fear of becoming involved, and often the fear of their loved who also do not have a clear understanding of how much good can come for all by engaging.

I love the connections and friendships that have evolved through this work. I also believe if we truly want to do the best we can advocating then we need to be mentors and encourage others to shine, to contribute. Encouraging others making room for their voices to be heard is how the momentum grows.

Today I am in recovery mode, my brain is tired, lying low at home, enjoying the peacefulness of my little deck. I am thinking about all those in England at the Alzheimers Disease International Conference, wishing the event organizers and all those participating all much success. This is a time for them all to shine.

Time to close my eyes and have a nap as the leaves rustle in the light breeze.