PBS aired a documentary recently that I believe is still available at this time to watch from the PBS website. I watched it on the night that it aired here on Iowa Public Television. There had already been comments made in my social media circles by people that had viewed it before the actual broadcast and most of those comments were not flattering. I was anxious to judge for myself.
The documentary "Alzheimer's: Every Minute Counts" is available at this writing here: www.pbs.org/video/2365872329/ . Everyone can judge for themselves and it isn't that this documentary is untruthful., it is that it only presents the issues of later stage and acts as if all of those that live with a dementia diagnosis are quite quickly in this situation. It is true that all of us, given we live that long, well end up in late stage but so many people don't understand how long a very large number of people spend in the early to middle stages which looks quite different than anything portrayed in this film. It is this completely slanted and unbalanced picture that so many of us object to because what this films portrays leads to the feeling of hopelessness for those living with a diagnosis. Most of us living with a diagnosis very long are quite aware of what late or end stages looks like so we are not turning a blind eye on that by any stretch. In fact, much of our advocating has to do with better care for those people because we will be in their company one day. And professionals in the field such as G. Allen Power have said that the current methods of care can not be sustained in the future if predictions of the number of those affected by 2050 are anything close to realistic. And the reason it can't be sustained is because of the shear numbers of people diagnosed, it would be impossible from both the staffing of facilities and the financial burden to the country. So we must find ways to care for people that are both better for the person living with dementia and less of a burden both financially and to people caring for them. As he and many others point out, having a "cure" for the different types of dementia is a pipe dream as we understand them now. We don't even have a proven way to slow progression so that is obviously the first step. The logical first step is medicines or methods to slow or stop progression but this could very likely be different solutions for different types of dementia.
In the meantime many such as myself have decided to live as well as is possible with the disease. We have chosen not to be silent or just go away and let the disease consume us. But believe me, there are days that any of us would like to do just that when we are attacked in some way just as my good friend Kate Swaffer was recently when she was basically blackmailed by a gossip columnist to "prove" she had dementia. You can read her story here: kateswaffer.com/2017/01/30/the-darker-side-to-success/. This was inexcusable behavior by a journalist and this type of thing just can't be allowed to continue. So this is an extreme example but the point is that trying to live better with dementia isn't easy and when forces from the outside seemingly make it more difficult then it can quickly get to the point of wanting to just quit fighting. That is where education of the public comes in to being such an important part of the puzzle. It is imperative for people to realize that while it may "look simple" for us to do many of the things we continue to do, nothing is very simple anymore. Please don't jump to any conclusions about us based upon the fact that we continue to advocate for the best interests of all people that live with dementia. Instead learn a bit about each one of us you encounter and understand that while we may still accomplish some things, all of it takes a LOT of time compared to what it once did. So as usual with my writing, I digress. That is literally how my brain works now days though. It doesn't stay on a logical track to lay out my points because one thought can trigger another avenue and as I often tell myself, down the rabbit hole we go. This is my own internal speak for what happens even if I just look at something on for example Facebook or Twitter. I will encounter a post or tweet that links to something that will have me off on a detour for an extended period. Quite often when I really don't have the time to do that but too late, I have forgotten that I needed to watch my time! These are part of the unseen continual battles we continually fight to accomplish anything and sometimes we just get warn out from the fight. Please be sensitive to how difficult most things are for people with dementia even if they don't tell you. We can be very proud and we don't want sympathy but understanding is always helpful.
So to summarize about the documentary, what I objected to with the film is that it only focused on people with either late stage dementia and the gal that had the gene mutation that means she will definitely get Alzheimer's. This leaves out all of us in the early and middle stages that try to live better with dementia and that many of us advocate, network with others with dementia and do our best to still have a purpose. Now this focus fits well with the goal of trying to push for more federal funds for research and I agree that this budget should be substantially increased. But the method to getting to that point should NOT use methods which reinforce the stereotypes and myths and increase fear about the disease. When you increase fear around the disease it almost always increases fear of the people with the disease and it increases the fear people have when first diagnosed which is what many of us are trying to change. Thanks for reading!
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