Last year, we lost Roger Marple – a dear friend, staunch supporter and founding member of the Global Dementia Observatory (GDO) Knowledge Exchange (KE) Platform Focus Group of people with lived experience of dementia.
Roger was diagnosed with young onset dementia in 2015, at the age of 58. Following his diagnosis, he became an avid advocate for people living with dementia in Canada and internationally. Roger was a champion on ending stigma and misinformation about dementia and was involved in numerous dementia awareness campaigns. As part of a Canadian awareness campaign, Roger encouraged everyone to “challenge stigma when you see it. If we do not do this, I promise you stigma will never go away. I see Alzheimer’s jokes in social media, like Facebook, and in our communities all the time. I let people know what positive change looks like to me, and I will not let stigma silence me as it does for so many.” (From Hi, I'm Roger | Yes. I live with dementia.)
In 2020, Roger joined the GDO KE Focus Group and together with the other Focus Group Members contributed substantially to its success by co-designing a unique process that would allow people who are living with dementia to review and critically appraise resources that are submitted to the GDO KE Platform.
The GDO KE platform provides a space to share good practices in dementia care from around the world to support the implementation of the Global action plan on the public health response to dementia 2017-2025. The Focus Group was developed to support the review of resources submitted to the Platform. Focus Group members provide invaluable feedback about how resources might impact people living with dementia and their carers and whether submitted resources are appropriate for the Platform.
We will miss Roger greatly and dearly – during the monthly Focus Group calls, but also in WHO meetings to which he contributed so eloquently to let the voice of people with dementia be heard. To continue Roger’s legacy of ending stigma against people living with dementia, WHO is calling for submissions of resources to the GDO KE Platform that address dementia awareness and inclusion. Resources can be submitted here.