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.
This week’s true expert is Kate Swaffer. She is a blogger, author, poet, and activist. She is a beautiful example of what it means to live well with dementia. She shows us what can still be accomplished despite/because of dementia. She shares a perspective that constantly makes me question and guides how I approach my work with dementia.
Join me in learning from the work of Kate Swaffer.
Her website: https://kateswaffer.com
Her Second website: https://livingbeyonddementia.com
This week I want to highlight Brian Kursonis as this our True Expert. He is the founder of Faith2care. I first learned about him via a DemenitaRaw FacebookLive interview which you can watch via the link below.
Join me in learning more from Brian Kursonis.
Read More about Brian: https://www.withalzmyheart.com/about.html
DemenitaRAW interview: https://www.youtube.com/watch?v=dcNGQgw7Nec
This week I want to highlight Norman McNamara. He is the founder of the Purple Angel Dementia Awareness Campaign, author and a wonderful advocate for those living with dementia. He was diagnosed with dementia at 50 and has made it a mission to create and inspire a dementia-friendly world.
I encourage you to join me in learning from Norman McNamara.
Purple Angel: https://www.purpleangel-global.com/index.html
The Lewy Body Soldier: https://www.amazon.com/Lewy-Body-Soldier/dp/1536805874
I want to, over the next few weeks, introduce to you individuals with dementia who are our true experts. They are the ones who help us become a better community by sharing their experiences living with dementia.
This week I want to highlight Brian LeBlanc. He is a member of the Dementia Action Alliance Advisory Council, a public speaker, and hosts a video podcast called This Dementia Life. In the few months that I have been aware of his work, I have learned so much and am a better care partner because of his willingness to share his knowledge.
I encourage you to join me in learning from Brian LeBlanc.
Facebook Page: https://www.facebook.com/pg/ALZUpCloseandPersonal/about/?ref=page_internal
Video Podcast: This Dementia Life
Dementia Action Alliance website: https://daanow.org/advisory-council/