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Hello, missing the forest of millions of people living with the symptoms of dementia while focusing on a small group of trees promoting hope that they can find a cure for something the cause of which is unknown, their efforts have produced a 99% failure rate for the past twenty or more years, there is no consensus nor growing consensus as to what paths of research are best to follow, and most research follows the dollars rather than the other way around, is clearly an example of missing the needs of the forest and meeting the needs of the few larger than life, well financed and supported trees.
Dementia awareness should first and foremost focus on living day by day full lives with the symptoms of dementia rather than dying day by day.
There is no doubt dementia symptoms are chronic and become progressively more intrusive. There is no doubt that those living with the symptoms of dementia will die. There is no doubt that everyone will eventually die.
Is it fair, reasonable, the right thing to do when designing a dementia awareness campaign (which coincidentally runs in conjunction with or parallel to a fund raising campaign) to directly ("everyone living with dementia will die") and/or indirectly ("dementia is the 4th, 5th, or 6th leading (what?) cause of death) emphasize/remind/open with these types of statements?
Dementia awareness as currently portrayed in TV ads, stamps, words, and pictures creates a dark, helpless, empty, foreboding, sad, empty, and empty feeling/picture/thought. We are all fully human until about two minutes after we draw our last breath. We may be confused, we may seem different, but we are still fully human. We never lose our souls, we never lose our need for a positive sense of self, and we never lose our need to feel/be loved and to love.
Fear of Dementia
Hello, unfortunate this fear of dementia has been created/reinforced/at least encouraged by efforts to increase awareness (at least this is what is claimed) that emphasizes that everyone who has dementia will die, they will all lose their souls, they will become suffers. This sort of thinly disguised fear mongering/creation has now come to haunt our society. It creates/breeds/exaggerates stigmas and makes life more difficult for those living with the symptoms.
Of course it also creates/breeds donations to cure research efforts. "If we can't convince them to donate/support maybe we can scare them into do it." whisper v.p.s of fund raising to each other. Focus groups are used to select the best scare words and images. It is a cynical, destructive strategy that was designed and now perpetuated by organizations (mostly not for profits) who should know better than to penalize the very people in whose names they are acting as agents.
Shaming should occur whenever anyone runs across such two faced behaviors - intentional or not, the result is the same for those living with the symptoms of dementia, and now apparently the stigmas/fears/harms have spread even to the hearts and minds of those who do not have the symptoms. What a mess they have created. They seem to be trying harder to make more of a mess of things/people/lives.
Please consider this evil side effect the next time you decide to walk/run/bowl/shoot/donate to these organizations. While they do some good, they also do an awful lot of awful bad.
Hello, the discussion on link about fib-lits (their word, not mine - mine is lying) are not only okay, they are the preferred strategy to use with people with dementia when you fear a negative emotional response or behavior. At all costs lie, it is for our own good, they argue.
We should "live in their world" they claim.
Here is my latest response to these well intentioned (on one level - not so well intended on other levels) -
Hello, living in the world of someone who is living with the symptoms of dementia is simply impossible. Living in the pretend world you think someone is living in who is living with a cognitive condition that your mind can only poorly image is the best you can do.
Why do folks with dementia seek out the support of professionals? So they can all pretend they have dementia together? Why do they pay high prices to live in nice places instead of moving into a less expensive hotel? The hotel staff will go along to get along; the professional staff will get along, but not always go along. My next door neighbor can pretend with me. I would hope professionals have a broader and deeper understanding of the human condition, the human mind, my ongoing needs as a whole person rather than simply want to keep me placid, smiling, and exhibiting no problem behaviors through ignoring my needs to live as full a life as possible and instead jump to the end of life and encourage me to live as if I was on my death bed, and nothing much mattered to me except for the next hour or so.
It is so easy to watch folks meeting their own needs for peace, quiet, a view of my "original" loved one, not this half empty shell in front of me. Let's pretend nothing is wrong in the world. Let's in the name of peace and quiet around here sacrifice my deeper needs to feel comfortable in today and let's all live in yesterday, except you get to go home tonight and live in today, and I'm stuck in yesterday - a day I know is not today, but it seems the best that anyone around here is willing to help me feel comfortable living in.
Don't give up on us. Don't look for the easy answer, and they say you are doing it for us. Don't lie to us. Don't ignore our feelings either. Be gentle with us, be consistent, be into today. Be my lighthouse when my own light flickers. Don't turn out our light in order to make me feel comfortable. Please promise to stay with me, not just around me.
Hitting children and telling them this is for their own good is not a sound parenting behavior. Lying to adults (people living with dementia, me) and telling others it is for my own good is not sound care behavior. It's saying to me I don't have the time to deal with your emotions, I've been through this before with you and I don't want to do it again, I, I, I. It does not focus on my needs to be fully in the moment, to experience my own feelings, to feel in control of myself.
Pretending is pretending. Lying is lying. Claiming the end (a calmer me) justifies your behavior shortchanges me, and in the end shortchanges you. And surely it shortchanges us.
Hello, where to start? How about don't lie to people coping with the symptoms of dementia. Don't start by underestimating them. Don't oversimplify their thought processes. Don't judge them as being incapable of understanding. Don't deny them their legitimate feelings and concerns about those they love.
Mordhwaj PariharProfessor & Chair Departments of Zoology & Biotechnology; Dean Life Science Faculty at Vikram University Ujjain
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