In her December 2017 post, “Stealing Hope,” Anne D. Basting passionately challenges the fear and stigma-inducing “tragedy narrative” that distorts how people living with dementia are seen within the broader culture. The two of us were especially inspired by Anne’s closing words, “Family members and friends…can learn to shift toward creativity to find emotional connection, to […]
The full text of Eilon Caspi’s recent journal article “Trust at stake: Is the “dual mission” of the U.S. Alzheimer’s Association out of balance?” is now available for free thanks to an anonymous donor seeking to raise awareness of the gross imbalance of effort and funding between the Association’s dual mission of seeking cure and best care.
I have not agreed with the Alzheimer’s Association’s fear-based, stigma-fueling marketing campaign for many years. But exploiting Gene Wilder feels particularly egregious.
All of these can be perceived as ‘deficits’ but they can also be perceived as changes. Using this viewpoint, there is room for the difficulty associated with these changes to be challenging, yet fruitful. Deficits call to be fixed. Changes call to be embraced and understood.
We owe it to ourselves and our communities to stand up and demand that, while we await development of a cure or treatment for Alzheimer’s Disease, resources are to also be spent on figuring out how to live well with dementia.
I think it’s time to challenge a bit of the language being used to advocate for people living with dementia. The negative effects of stigmatizing language are huge, and our language choices are often the places where such stigma starts or ends.
A name can be a powerful thing and I still struggle with knowing the best term for the phenomenon we know as dementia. Can we come up with a name that captures both the challenges and the joys of people experiencing it?
Social stigma or other barriers often prevent people living with dementia from remaining involved and connected to their communities. That’s where efforts like Don and Donni Reddington’s Ride4Alzheimer’s – and other initiatives promoting dementia-friendly communities – can make such a difference.