The True Experts

If I am honest, everything I know about dementia I know from the science/medical perspective. If I am honest, everything I know about dementia is an interpretation of what has been shared with me by someone who has dementia. If I am honest, everything I know about dementia I know from what I wish I knew when my grandmother was first diagnosed.
If we are honest, we only know second-hand stories of dementia. That does not diminish the medical understanding, the continued research, or our caregiver experience, but it reminds us that we must listen to those with dementia; to hear their wishes, their needs, their sorrows, and their joys. Each time I read a blog post, hear a podcast or watch someone with dementia give a presentation, I am humbled by their stories. I am reminded that while I may be knowledgeable, and seen as an “expert” they are the true experts. They are the individuals that call us out when we waver and teach us each day what living with dementia really means. This month I have focused on sharing with others the programs and resources I follow, facilitate, and use, but starting on Monday I want to also introduce to you individuals with dementia, those in the public eye. They are the experts that make us all better care partners, better family members, community members, and better individuals. May we all learn from them, to see and hear them. To make sure that they are the always included in our work.

Published by Kathryne Fassbender

I am a Dementia and Creative Engagement Specialist. I am also the granddaughter of someone who lived with Vascular Dementia.

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