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.
* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is Mild Cognitive Impairment, but my neurologist said I am in a unique position for helping because I have “one foot in each door”. Copyright 2017-01/25 with >6hrs invested in text. Tags are dementia, television, film, Every Minute Counts, Alzheimers.
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Thank you Tru for an excellent response. Each experience is different, and your comments should be reassuring to many of us in the early stages of this journey. I hope your response is seen by ALL those who watched the PBS program ( I have not yet seen it), and I hope PBS & others in a position of responsibility will take it to heart.
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Thank you, Shirley. Appreciate you encouragement. (( hearts & flowers ))
Thank you, Tru. Maybe I won’t watch it
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Don’t remember how long you have been dealing with this, but I cannot believe it would have even one redeeming quality for those with new diagnosis. — Tru
I did find your response somewhat of a reality check and provides an alternative (and helpful!) way of both dealing with our cognitive decline and viewing the situation in general. the response to the film plays on fear that every person has concerning this potential disease. your remarks seem spot on to both the people without and those with the symptoms. and as you say we need to think of what we can do rather than what we can’t.
thank you tru
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Thanks, David (( smile ))
Thanks for this Tru: I have shared it widely.
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Thank you for your insights about the film. My business provides respite care in Washington, DC. I was completely baffled at the emphasis placed EOAD and the segments about heriditary and testing. Did the filmmakers fail to understand that EAOD is a smaller percentage of those with ALZ. I also found the lack of focus on keeping persons with ALZ to be shockingly short-sighted. Instead, the film jumped to the cost of memory care and the reasons that it is so expensive. The elder law attorney was dismal at best, a disservice to those needing advice about structuring assets and protecting loved ones. It also missed a cost comparison of keeping a person at home vs. memory care.
The film also gave short shrift to spousal caregivers and failed to recognize the years that caregiving takes from the caregiver’s life.
I thought I was alone in my criticisms of this PBS presentation. I appreciate your frank comments!
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Comments from Karen Love (sent via email with request that i post in comments section):
Kudos Tru! You’ve spoken truth to power about the PBS documentary, “Alzheimer’s: Every Minute Counts”. The true tragedy of the film is that public broadcasting choose to focus only on lost capabilities of people living with Alzheimer’s and fear-mongering tactics to raise awareness and funding. I cringed when words such as ‘demented’ or phases such as ‘an empty shell’ were used in the film by health care practitioners because it highlights the fact that so many don’t understand dementia.
The film is underhanded, demoralizing and dishonors the lives of people and their families living with Alzheimer’s. I’ve had the privilege to get to know and support hundreds of individuals and their families living with Alzheimer’s over almost four decades. My father also had Alzheimer’s disease. Each individual I knew and currently know is special, and while they experience impairment of some capabilities, there are many other capabilities to support such as friendship, dignity, love, happiness and enjoyment.
Far more can be accomplished for Alzheimer’s and other forms of dementia with a positive, proactive approach. PBS’s singular focus on a tragedy narrative is tragic. I love your suggestion, Tru – PBS should follow up this film with one about proactively living with dementia. That’s a film I want to watch.
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