Is it dementia? Or is it war on dementia?
The words we use to talk about dementia are responsible for creating and maintaining the stigma of dementia.
It’s time we change how we talk about dementia.
I joined thirty-plus concerned attendees–some with dementia–in an online panel discussion featuring Dr. Richard Taylor (U.S.A.) and Kate Swaffer (Australia). Both are outspoken advocates about dementia despite living with the diagnosis. Laura Bowley (Canada) hosted the hour-plus long panel discussion.
How do the panelists who live with dementia feel about how we talk about dementia?
Dr. Richard Taylor (paraphrased): When we fight wars we divert all our energy to winning the war from helping those who currently live [on the battlefield] with dementia.
The panelists agree that we need to consider and help those who are currently living with dementia. Too many of our dollars and our attention is focused on research to find a cure. After decades of research to find a cure, we’ve spent billions on research and are no closer to a cure. Meanwhile, people living with dementia and their families are crying out for much-needed support.
Can we move away from using the word dementia?
The new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) renamed it: major neurocognitive disorder (NCD).
Yet, the panelists ask, by if we call dementia NCD instead, do we risk losing the media and public’s familiarity with this dementia? Do we risk losing their support and funding because they are unfamiliar with NCD?
Dr. Peter Whitehouse, co-author of The Myth of Alzheimer’s, added that the word for dementia in Japan has been changed from chihō to ninchishō; thus, helping move perceptions of a person diagnosed with dementia from 痴 Idiocy or 呆 Stupidity to 認知 症 Cognition Disorder.
How do we remove the stigma attached to the word dementia; yet, hold onto the connection people have with the word as they grow aware, understand, vote, fund, or describe these family of diseases associated with cognitive functioning?
Please click below to view this thought-provoking Meeting of the Minds discussion:
If nothing appears in the box above, please click here: http://youtu.be/5b1pD_WSn3w
For more information:
- Tips for dementia awareness with Dr. Richard Taylor
- Renaming dementia and the DSM-5 (Technical slide presentation) [TCV Update 6/27/2018: Alzheimer’s Association URL no longer available – using archived copy.]
- Dementia Policy in Japan (see page 16) [Link no longer available]
Well… I’ve watched the video. And I re-read my original response to your article.
I have to again fall back on my years of experience working with the “Mentally Ill” and “Developmentally Disabled.” In both cases, I have seen Self-Advocacy Groups, individuals who actually have the diseases, significantly impact how people view these stigmas. I’ve also seen labels and words change. No one who is aware that they have a disease wants to be stigmatized.
But what about the many individuals who are at a stage of their disease in which they cannot advocate for themselves to change stigmatizing wording. Others must do it for them. And who best to take on this role than their caregivers? We are part of the media! Thus, wecan make a huge impact when it comes to changing the language surrounding dementia simply by continuing to share experiences that will bring hope and strength to those who deal with it every day.
In the case of the Developmentally Disabled and the Mentally Ill, the language was changed to Intellectually or Emotionally Challenged/Impaired. People who are aware that they are challenged in such a way seem to feel better about this terminology. But the general public, in my own experience, really does not understand the real meaning behind the changes.
I believe that the same will hold true with Dementia being changed to Major Neuro-Cognitive Disorder in the DSM V. I don’t think it will make any difference to the general public, who provide much of the funding for research, as long as the media continues to do what they do… portray things from a negative perspective. Sadly, that is what the general public wants to see. Even on the nightly news, the only happy story is always saved until the very end of the broadcast.
So… Having seen the video, I would say that increasing public awareness through education about Dementia is the key. But not by changing a DSM V diagnosis. Rather, the words used by advocates, caregivers, family members, and people with the disease to describe their experiences must be altered. Honestly. The good and the bad. The heartwarming stories of success side-by-side with the heartbreaking stories of decline.
History is our best teacher, and there are far too many examples of stigmas causing great harm to many people. But there are also examples of how stigmas were successfully lessened, if not eradicated, in the eyes of the general public and the media. Let’s focus on these positive lessons in dealing with what is still a relatively “new” disease in our society, at least in terms of awareness levels. The term Dementia is here to stay, at least for a while. How people perceive it is entirely up to us!
I apologize for the length of my comment, but the whole discussion touched me from many experiential levels, both professionally and personally.
THANK YOU, Lynette for taking time to share your thoughts. Truly! They contribute positively to the ongoing discussion we must have re: our terminology to avoid stigmas in order to create competent conversations leading to constructive conclusions.
Again, thank YOU.
Thank you for shedding more light on this very interesting situation, Brenda.
As a Caregiver for people with a variety of diagnoses, I’ve experienced the same type of situation with the developmentally disabled and mentally ill.
Quite frankly, the individuals I’ve worked with do not seem to care about what their disease is “labeled.”
What matters most to them is that they have the opportunity to experience the same quality of life as someone who does not have their particular disease.
To me, that’s where the focus should remain: Continuing to provide top-notch service provision, as well as sharing hope with our fellow Caregivers, so that everyone can continue to enjoy life in spite of an illness.
Lynette, thank YOU for sharing this perspective. Until I participated (as a learner) on that panel, I wholeheartedly agreed with your point of view. Today, I’ve changed my mind, because it’s the general public who votes to provide funding…it’s the media that chooses to cover the topic one way or another…When you have the chance watch the video to see if you also change the way you look at the labels we use. There are no easy solutions…just greater awareness, for now.
I’m glad I was my usual impulsive self… reading your article before watching the video. I look forward to viewing it even more now, to see if my perspective changes. The media is indeed a powerful tool, as is funding… wherever it comes from! History has proven that. I totally agree with you about increasing awareness… in EVERY possible way!
I look forward to reading your comments after you watch the video, Lynette. 🙂
Brenda
I haven’t had a chance to watch the video but I personally never thought of the word dementia as derogatory until I started hearing people in the Alzheimer’s community say so. Maybe it’s a generational gap or simply my ignorance (I always get whooped at scrabble – lol) – I don’t know. What did give me a false impression of the disease are the images of someone in a nursing home. But what about all of the people that are still capable of living a productive and happy life despite their diagnosis? I recently saw a proposed postage stamp for Alzheimer’s, and to me it was depressing. The picture had no life. They need to at least add some color to give a feeling of hope. Thanks.
Thank you, Mike for sharing both perspectives of dementia–the otherwise, relatively happy and productive people who live with dementia versus those portrayed as impaired–e.g., the US Postage stamp.