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.
Music and Memory is a great tool for engagement for people living with dementia (and everyone), within the context of a deeper transformational approach to support and care. It is not a magic bullet, and we need to stop expecting to find a magic bullet. There is no substitute for relationships, meaningful engagement in all aspects of life, and shifting our systems to support different ways of living and caring.
Through reducing the negative, shameful and dishonoring messages so commonly spread via stigma, we can offer instead more viable pollination which hopefully will mature into fruits of dignity.
Reducing anti-psychotic use in nursing homes not only requires education to hands-on team members about the well-being approach and how to operationalize it; it also requires a strong commitment from the formal leaders of the home, particularly the Administrator, Director of Nursing, Medical Director, and Consultant Pharmacist.
It’s part of a larger trend that that New York Times has dubbed a “medical mystery of the best kind”: common diseases of aging are in retreat in the United States and some other wealthy countries.
In my evolving understanding of how best to support people living with dementia, I came to realize several years ago that it was never really about antipsychotic drugs—it was about well-being. And more recently, I have come to realize that it wasn’t really about well-being either—it’s about humanity and human rights.