World Alzheimer's Month message from Christine Bryden

A message from author and dementia advocate Christine Bryden

7 September 2015 - "Nothing About Us, Without Us!" This phrase was the title of my talk at the 20th Alzheimer's Disease International (ADI) Conference in Kyoto in 2004, and is the title of my new book, which has just been published by Jessica Kingsley Publishers.

It is a collection of my talks since 2001, and includes several from ADI conferences, including the very first one in September 2001 in Christchurch, called “Diagnosis, Drugs and Determination.” I remember the stunned reaction to that talk!

By the time the ADI Conference came to Toronto in 2011 I was able to reflect on a decade of positive change within the organization. The book includes a talk in 2006 (during ADI's Conference in Berlin), where I speak of my candle sputtering out – but thankfully I have bounced back!

In 2000, a group of people with dementia formed the Dementia Advocacy and Support Network International (DASNI) and approached ADI in 2001.  We felt that our exclusion from full and equal participation was unethical. Without our expertise in the lived experience of dementia, how can policies, programs and services truly meet our needs?

People with dementia want to have the choice to participate in the international Alzheimer's movement. We can be passionate advocates for a cure, and for support and treatment. Although only a few will want to get involved, we must be given the choice. As I said so many years ago in Kyoto:

"In this relay race towards eliminating stigma, and towards self determination, each one of us is carrying a baton of change. But we are declining daily. Not all of us in DASNI who picked up the baton and began the race in 2000 are still running. Together we can enhance the services and support provided through the global Alzheimer's movement and adopt the slogan “Nothing about us, without us!”’

I am thrilled to learn of the collaboration between ADI and Dementia Alliance International, which has taken over the baton for change, working towards full inclusion and participation of people with dementia, the experts in the lived experience.

Where next?