Despite the exponentially growing numbers of those diagnosed with Alzheimer's disease; the battle to reframe perceptions and the words we use to discuss the disease is as urgent as the battle against the disease itself.
It was not long ago that Alzheimer’s disease was hiding in plain sight. Despite its skyrocketing prevalence, this devastating disease was virtually ignored for decades.
Fortunately, in recent years, there has been a shift in global advocacy and general thinking about the disease. We must wage battle not only to find treatments and a cure for Alzheimer's disease but also battle to reframe perceptions and how we talk about it.
I believe that we are now at a historic turning point which needs a radical pivot in our mindset.
Aim for these goals:
Make life better for those living with dementia.
Never forget that a person living with dementia is still the same person, but the same person living with a disease.
Keep in mind that dementia is not a death sentence, but a way of life.
It is only when we will embrace these notions and adopt a proper disposition of spirit that we will eventually confront the stigma that overwhelms the disease.
Only after the actor Gene Wilder passed, did we learn that he suffered from Alzheimer’s disease. Other public figures such as Pat Summit and Dean Smith, two legendary college basketball coaches, retreated from public life because of the disease.
Also, Michael J. Fox and Lance Armstrong have drawn incredible public attention as courageous advocates for Parkinson’s disease and cancer using their own lives as examples of living with and coping with these diseases.
Frequently, those with Alzheimer’s disease withdraw; whereas those with cancer lean in. It is a shame that our society offers such unbalanced narratives to these different diseases. For more reflection, read this article about understanding and discussing Alzheimer's disease from the National Institute on Aging, Helping Family and Friends Understand Alzheimer's Disease.
We cannot know what would have been the public response had Gene Wilder decided to speak out and become the public face of Alzheimer’s disease. Would society have listened? At the same time, respecting and embracing an individual's choice about what and how to share must be respected.
It is hard to predict our socio-cultural reactions because we as a society are unpredictable, especially true in the way we view degenerative diseases that result in obvious changes in behavior and actions. But independently, we can do our part to pivot attitudes and conversations. These pivots really do begin on micro levels and via conversations that happen organically and spontaneously.
That’s why this notion of “living with Alzheimer’s” is such profound and revolutionary idea.
The language we use to describe a disease has enormous consequences, and shapes how we personally, and society as a whole, think about Alzheimer's disease and respond to it.
Consider the language of cancer: You “fight” it, you “battle” it, “war on cancer”, and “stand up “to cancer”. There are no equivalent terms for Alzheimer’s. We do not refer to a “war” on it, nor have widely read sources provided us with a list of “public” individuals who are living with it or battling and coping with Alzheimer’s disease.
People with the diagnosis of Alzheimer’s disease frequently retreat. Unfortunately, one of the more common adjectives to describe someone with dementia - demented - is offensive, unflattering and suggestive of weakness.
So please reshape, if needed, your own perspectives about Alzheimer’s disease, beginning with how you describe or refer to it. Check the words you choose before you utter them. When discussing it, refer to the “battle against Alzheimer’s” and “stand up to Alzheimer’s”. Eliminate negative terms and phrases. And most importantly, remember that those battling the disease deserve respect and support. They do not wear a scarlet letter.
In turn, stand up for those who are facing the battle and for the families and loved ones who are battling as well. Our words shape perceptions, and our perceptions ultimately have the power to shape the perceptions of everyone we touch.
Let’s fight together this war with the goal of finding a treatment and a cure. Let’s engage more and more people in this crusade.
For broad information and resources related to Alzheimer’s disease, click here to visit Alzheimer’s Association website. Or connect with other great resources, National Institute on Aging or American Federation for Aging Research.
If you are interested in reading more of my blogs:
Check out the recent blog: Ultra processed Fast Foods and their Impact on Brain Health? ~ Dr. Domenico Pratico', MD, FCPP
Domenico Praticò, MD, holds the position of the Scott Richards North Star Charitable Foundation Chair for Alzheimer’s Research and serves as a Professor and the Founding Director of the Alzheimer’s Center at Temple, as well as a Professor of Neural Sciences at Lewis Katz School of Medicine at Temple University.
For more information on the research conducted by Dr. Domenico Pratico, please visit this link.
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Stay updated with the work happening at Dr. Domenico Pratico's lab by visiting the Pratico Lab website.
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