Tru here. Viewing titled documentary, “Alzheimer’s: Every Minute Counts” from position of slowly progressing cognitive symptoms that are still considered to be in Mild Cognitive Impairment range, strong symptoms of Lewy Body Dementia, and mild-to-moderate cerebro-vascular disease. I lost two maternal grandmothers with dementia. I lost my job and Driver’s License in 2000, after what we theorize was my first small stroke in February 1999, and have slowly decreased in cognitive abilities since that time. Yes, I suffer with hallucinations, from not recognizing my husband a good part of the time, difficulty recognizing my image in mirror, balance issues, cannot drive, cannot use stove or oven, cannot babysit without another adult present, etc.
… Lots of things I CANNOT do, but there are also lots of things I CAN do; I am admin for Dementia Mentors, member of the Advisory Council for USA’s Dementia Action Alliance, and regularly appear on recorded Dementia Chats. I care for my chickens (with back-up from husband in case I forget) and self-train a Service Dog to facilitate my recognition of husband, and help me know when something is a Lewy Body hallucination … or reality. He will also be providing balance-assistance during my daily exercise (when he gets a little older). I am a good grandmother, mother, wife, etc. and enjoy creating my own designs for both yarn projects and projects on paper. Very busy lady watching this film.
Section A: Review of the film trailer … BEFORE viewing the entire documentary:
I got very angry when i saw the trailer for film documentary, “Alzheimer’s: Every Minute Counts”, which is to be shown tonight by PBS (2017 Jan 25). Personally, I think this trailer exemplifies misunderstandings which produce the stigma that my friends and i fight most every day. The music builds anxiety, then words like “wither away”, “combative”, “escalate-violent”, “panic”, “going to kill us”, and “it will take us down”, add to the building anxiety. Understand need to generate funding, and totally agree that finding cure for the various types of dementia is an imperative need, but this trailer feels like panic-mongering. Probably the majority of these are totally true words, and appropriate to some specific situations, but it seems that they are only choosing situations that have reached crisis-mode, as emotional tug-strings.
I hope they have counselors available to deal with the need from callers who are newly diagnosed and have not yet discovered that there CAN be productive life for an unknown amount of time after diagnosis. It’s just that the new life after diagnosis has growing differences from how life looks before diagnosis. And those differences get progressively more difficult as diseases progress.
Additionally, it feels like emotions from the trailer lump together the disease, and those persons who have the disease, which can create disastrous results.
Understand need to generate funding — but i feel that telling only end-stage SECTION of the dementia story, in this strong dramatic fashion, does much more harm than good. Probability is very high that more people will watch the trailer than number who watch the entire show. Thus, effects from the trailer itself become an issue that very much concern me, and should have concerned the producer and sponsors, etc.
Section B: * … * AFTER viewing the entire documentary * … *
Was able to watch early preview of entire show. I would discourage those with new diagnosis from watching this film. The first 10 minutes had me absolutely furious, but my anxiety level had much decreased by the end of the film.
At seven (7) minutes into the show Dr. Beau Ances, from Washington University School of Medicine talks about how “… it (Alzheimer’s) really goes to the essence of the person”; “It takes away … who that person is.” Then he (Dr. Ances) states, “They (PWD) are really almost a shell of themselves.”
I exploded at that statement. I object to, but can understand use of terms like “demented” (used later in the film) that feel demeaning but can technically still be accurate according to the dictionary. However a “shell”; Almost all of the person’s BEHAVIORS can be totally gone, but implying that the person’s true essence is gone and only “shell” remains is totally undocumented theory. I have spoken about this earlier at https://truthfulkindness.com/bnp/part-3/bnp-3d-2012-u/20150125-chris-mann-remember-me/ .
Then, at 8:25 on the film, daughter Daisy Duarte says of her mother; “I lost … the Mom that had me … five years ago. Alzheimer’s is my second Mom.” This statement reinforces concept that essence of the Person With Dementia is no more — only their dementia symptoms exist.
So how the care-partner treats the Person With Dementia (PWD)
becomes much less important,
because that person no longer exists.
They are no longer caring for the person
— they are caring for the dementia. (( growl )).
I have been the “loved one” so accept Daisy’s loss of her mother behaving in ways that she recognizes as motherly, but the wording on a national broadcast should be more responsibly presented.
Remainder of film was not nearly as distressing to me. It had some respected names like Dr Rudy Tanzi, and those persons gave good information, but even in remainder of film, a good part of the included scenarios were un-necessary misunderstandings from lack of anticipation for problems — lack of training and no mention of work-arounds. Very few of us are allowed to use stove or oven past very early stages (for numerous reasons). Unrealistic expectations ALWAYS produce problems, with any type of disease … in fact, with anyone from child or elder, … to employee.
It is always important to know who you are dealing with (including the dys-Abilities from any diseases) in order to anticipate problems and prepare work-arounds … but also to maximize benefits on both sides. Unfortunately, this film does nothing to dissipate the huge misunderstandings of definitions, or variety for types of dementia. It does not generate ANY hope except thru the channel of a cure. To a Person With Dementia, the message is clear; you personally have no hope for quality of life. Give us your money and die before YOU are the person causing more of this crisis from within your own family. It is your responsibility as a responsible citizen … to get money for a cure, then die before you can cause more of this panic.
Personally, I think it is now the responsibility of PBS to compensate QUICKLY with a film comparing this documentary I just saw, “Alzheimer’s: Every Minute Counts” with another documentary showing that there is life after diagnosis for all the major known types of dementia; Alzheimer’s as well as Vascular, Lewy Body, Fronto-Temporal, and others. This second film should show variety of symptoms, show Persons With Dementia using work-arounds in private life, and employers using reasonable accommodation to facilitate employment as long as that employee has abilities to complete both essential functions of their job and stay healthy in the other aspects of their life. The second film should show variety in dementia progression, from very quick progression, to slow progression like with Christina Bryden, who is still active in Dementia Advocacy well over 20 years after diagnosis. A number of my friends are past their hallmark of 10yrs after diagnosis with Alzheimer’s, Fronto-Temporal, etc, but still very active in speaking, mentoring, etc. Personally, I think this life purpose AFTER diagnosis may be a strong contributory factor to the slow progression of their symptoms. Yes; symptoms inevitably progress and then our current work-arounds no longer work. Find a new work-around for each dys-Ability presented, for as long as possible !! After no work-arounds are available to facilitate that project — then find another type of task or project that you can invest in. Something that can make you feel valuable.
It would be great for PBS to highlight work from online PWD groups like Dementia Mentors and Dementia Alliance International, to highlight helpful FREE YouTube videos available from Teepa Snow, and material like the “Caring Conversations Toolkit” available beginning today from Dementia Action Alliance (which itself carries a strong goal of highlighting the perspective from PWD). It is important to highlight projects like Gary Joseph LeBlanc’s Hospital Wristband Project and some of the other really important projects for CARE of Persons With Dementia, while the cureS are being sought. (Because personally, I am convinced that there will be no one cure; it appears that even for just “Alzheimer’s”, there is probably more than one cause. Additionally, there is high percentage, even among “Alzheimer’s” patients, of autopsy showing they had other varieties of dementia along with their Alzheimer’s, further complicating the issue of finding a single “cure”.)
Yes; funding is imperative, but this film seeks funding while ignoring (and sometimes at the cost of) CARE, which is also imperative. I appreciate the efforts to highlight need of funding. I appreciate efforts by each participant of this film. But … I strongly feel that PBS now needs to compensate for what they did, by providing equally impressive film on possibilities for quality of life after diagnosis, and providing both films in a complimentary manner.
I plan to mail a copy of this blog entry and a copy of the “Dementia Success Stories” booklet (online version at https://truthfulkindness.com/dementia-success-stories/
) to PBS and major producers; “After viewing your program, I thought that you should be made aware that there IS life after diagnosis”.
PWD Patient Organizations:
Amplifying the voices of Persons With Dementia:
Dementia Advocacy created by PWD Norrms:
Associations for Various Types of Dementia:
My own Blog Entries:
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