This week’s cover of Time Magazine gave me vertigo. I was spinning backwards several decades to a story in the early 80s, that used nearly the same catastrophic language. In the 80s, Alzheimer’s was just coming into public parlance. And with the shock, the most predominant image was of the “fade”, the person we know/knew is half there and slowly fading into oblivion.
And there it was again this week. The fade. This time though, the cover was not of a “typical” 80 year-old (although the inside image of the article IS a blurry picture of a “typical” grandma in a mirror), but of a woman who looks about 45.
The article itself struggled to find the positive in the scientific search for cure into which we have put so many (but not enough according to the article) of our research dollars and hopes. The hope that the story finds is in early diagnosis. The theory is that if we learn to identify it early, we can better test potential treatments on those who will progress.
The problem is that the story uses horrifying language to describe the symptoms associated with Alzheimer’s. There is a short piece by a person with Alzheimer’s (Maryann B, whom I know and admire greatly), but it is very short and really only advises people with the diagnosis to reduce expectations on themselves (not have expectations on the system or advocate for change…).
We in the US need to follow the lead of England, where their medical research dollars are matched by a bold and serious attack on cultural attitudes. My Name is Not Dementia, was a 2009/2010 study by the Alzheimer’s Society that interviewed people with dementia to ask them about their own quality of life. A huge national public service advertising campaign followed in an attempt to reduce the social stigma of the conditions associated with dementia. If they start to diagnose earlier in England, they will have at least tried to make the living conditions of those they diagnose a little better.
We don’t do this here. We have walks for the CURE. We have add campaigns that feature advocates, not people diagnosed. We rely on the tragedy of the disease to fuel donations for medical research. We don’t spend enough on ANY research, medical or social. We are making the whole thing WORSE.
Pushing for medical cure is fine. We should. But it needs to be matched by an equal push for the cultural cure at the same time. Which means we can no longer stop at the “fade.” People are living with the symptoms of dementia and Alzheimer’s for 15 years! If we can’t SEE them, how can we properly CARE FOR THEM?