Today I had the privilege to watch a preview screening of PBS’s “Alzheimer’s: Every Minute Counts.” It is a factual and heart wrenching documentary of the Alzheimer’s epidemic in our country. For myself, a person living with Alzheimer’s, I am very appreciative to PBS and the sponsors of this program for producing this documentary. It illustrates the tragedy of living with Alzheimer’s and other dementias in our country and what the disease does to our loved ones and ultimately to those of us with the disease.
I have a very personal stake in the awareness and funding for finding a cure. I am in a clinical trial myself and doing all I can to support the Alzheimer’s Association to help them fund research and social programs for caregiver and those of us living with all types dementia. In one scene the documentary illustrates very passionately the need for clinical trials and volunteers. I hope this message resonates clearly from the program and continues to be a focus in the cause.
The program discusses many hard facts that our society and culture need to be aware of regarding the financial burden faced by families with a loved one living with Alzheimer’s. Until I was diagnosed my wife and I had no idea of the financial difficulties and intricacies that we may be faced with as the disease progresses. These are very dark topics but it is necessary for our society to be made aware of these things. We cannot live with our heads in the sand.
One point that is made very clear in the program by the obvious lack of its inclusion is the enormous deficit in dementia friendly community awareness. Living with Younger Onset / Early Stage Alzheimer’s and an active life I can tell you there is very little to no dementia friendly locations in my state. Our society needs to be aware of the darker side of Alzheimer’s and dementia but also be made aware of and recognise that we’re all still here, living, and many of us are still very able and capable of contributing.
Other than my critique that the documentary lacked any real substantive demonstration or awareness of the more positive points and support for people living with dementia there is another critique I compelled to point out. A emergency room doctor featured in the documentary, Dr. Shan Liu, refers to her patient several times as a “demented patient.” I was so deeply hurt and offended when I heard this. Referring to a patient, a person, as “demented.” Such a arcane, insensitive, medieval term. This is one very good reason why there is such a stigma attached to the dementia community. Footnote, I would prefer to see us have a different term other than dementia all together. We need to change this thinking and work to make our communities more dementia aware, friendly and inclusive. We have a voice and the program does demonstrate that as Daisy, a featured woman living with the Alzheimer’s gene (not yet diagnosed), is shown advocating to congressional representatives on capitol hill for research funding.
Finally, I do recommend to everyone they watch PBS’s “Alzheimer’s: Every Minute Counts.” More awareness is needed to help defeat this horrific disease. We must not let up. We cannot give up.