Harry Urban Lives with dementia. He started the Facebook dementia support group called Forget Me Not (it’s a closed group, you will need to request to join if you want to become a member).
Harry, who is an administrator on the Forget Me Not page, posts there frequently, and sometimes shares those posts on his personal page. This particular post really resonated with me:
“Are we missing the point concerning raising dementia awareness? Are we so focused on finding a cure for Alzheimer’s that we are forgetting about the people living other forms of dementia? Today Hazel and I volunteered at the Alzheimer’s Associations Walk to End Alzheimer’s and had a wonderful time, but something was missing.
I listened to the speakers and heard the statistics and how horrible this disease is. What I didn’t walk away with, was the feeling of Hope. It was nice to hear how much money sponsors contributed and who gave the most, but is that how we are going to end Alzheimer’s?
I know I am being over critical and going to catch Hell from many directions, but the path of dementia I am walking on is comprised of people living with various forms and stages of dementia. Money is not going to get them off that path, only Hope can.
Money is needed to find a cure for future generations and I’m for it, but damn it, don’t people realize that my friends don’t want to hear about the miseries or the statistics, they want to hear how they can live with their disease today.
Why is it so hard to speak about Hope and how we are spending money toward finding ways to live a better life? When we talk about finding a cure, why can’t we also want to find a cure for Vascular Dementia, Lewy Body Dementia, Frontotemporal Dementia and all the other forms.
My biggest question is, why do we need to sell the miseries of our disease to raise funds. Maybe if people saw the Hope and progress the grass roots are making into how people think about dementia, they would give more.”
Several people who also live with dementia made these comments on Harry’s post:
“The negative narrative feeds fear and dread and disables people upon diagnosis. When we speak out our diagnosis are questioned because of the negative perceptions of professionals who should know better. Other diseases are portrayed in a more positive light, breeding enablement and hope, why can that not be the narrative around Dementia.” ~ HG
“This is precisely the problem. Perpetuating the tragedy stereotype is what They use to raise money. Dispelling myths and demonstrating we’re still human with equal human rights is what We do to raise hopes. Someone needs to get Our truth to the masses.” ~ Mary Radnofsky
“Very well said! I have often felt that some of the big associations care much more about the money than they do about people living with the disease.” ~ SW
Like Harry and I, others in the worldwide dementia care advocacy network are asking pertinent and powerful questions such as: why do we need to sell misery and our souls to get funding for dementia care?
PR: should alzheimer’s advocates be doing it for #BIGpharma?