In many of my presentations, I say; “The changes brought on by dementia are relentless, yet most people don’t see them as disabilities just as external symptoms. Many also think it is a mental illness, which it is not. The word Dementia is taken from Latin, originally meaning “madness”; no wonder we struggle against the myths! And so, we are regularly defined by the symptoms of our disease – forgetful, confused, aggressive, odd behaviour, absconders or refusing to communicate, rather than the people we still are… mothers, fathers, lovers, daughters, wives or husbands, employees or employers, grandmothers, aunties. It is a tragedy that so many just see our deficits.”
This week, the world received another insightful and courageous Richard Taylor January February 2013 online newsletter, a journey of insight into what it is like living with the horrors of treatment for a rare oesophageal cancer, alongside a diagnosis of dementia, probably of the Alzheimer’s type. His friend Tina from Switzerland contributes sometimes, and this time, her words caught my attention. Please read on and let your own mind wander.
Reprinted with permission.
“Hello From Switzerland!
Hello again!
It has been quite a long time since I have contributed something here – that was before Richard has been diagnosed with esophageal cancer.
Speechless I was anyway.
Now I’m so relieved to WELCOME BACK, Richard – not back to normal, of course – but still BACK to write and talk!
Last October I have asked two experts for their permission to quote statements they made and which inspired me to think about them:
1. Professor Juergen Steiner, from the University of Special Education in Zürich, Switzerland, he teaches Logopedics and has published about issues of dementia and language, dementia and communication. He has met Richard in Zürich, and their conversation (plus a conversation of Prof. Steiner with Helga Rohra) were filmed and will be available on a DVD by the end of March 2013.
The following statement Prof. Juergen Steiner made in the November 2013 issue of the Forum Logopedics magazine (translated by Tina Hackel):
– First I have to say something about the term dementia. The word “dementia” is derogatory, because if translated it means: “being mind-less”, without spirit, which is wrong in two regards:
- First, the diagnosis is followed by a long journey of declining in a highly individual pace, so we can’t immediately accredit this condition with a “without”, and
- second, under the premise of human dignity being linked with cognitive skills (“cogito ergo sum”, Taylor 2010) this dignity is potentially denied.
Since fundamentally human beings are never without mind/spirit and they cannot lose their dignity, we should replace “Dementia” by “cognitive declining” or “cognitive changes”.
Therefore the people we talk about/to are “human beings coping with cognitive losses”…
2. Dr. phil. Andreas Dick, Neuropsychologist, Zürich, commented in the Swiss Newspaper “NZZ am Sonntag” (October 7th, 2012) an article titled “Neurosciences promise revolutionary insights”:
The Reality of Psychic Life:
The brain is a wonderful, fascinating ad highly complex organ, but it just isn’t identically equal with psychic processes. Maybe neuroscientists should start to look at the brain as a battery, which is needed to make consciousness possible within our physical existence, but it doesn’t describe or produce these processes of consciousness itself. At least for psychology it would be desirable if it could free itself from the grasp of neuroscience and begin to take seriously psychic life as a reality of its own (translated by Tina).
As Richard used to say: You decide!
Tina”
When a researcher, of any discipline, begins his or her research, they see Variables that seem to go together. Then they look for a Value to hold them together in an acceptable way to most people.
When they do this, they know that each Variable is only a part of the Value they have chosen to hold the variables together. A simple example could be apples, grapes, oranges etc would be the Variables of the FRUIT Value. We know that an apple is not the whole of Fruit.
I believe a medical researcher would prefer the words: Binswanger’s, Alzheimer’s, Lewey’s, Parkinson’s, Pick’s and Korakoff’s variables to the value someone has chosen to unite these conditions: Dementia. They know that Alzheimer’s is only part of the label: Dementia.
Yet, in the past, Dementia was an acceptable Value as too many people used the word: Madness. As more people learned to read and by the first half of the 18th century, The King James Version of the Bible was the Authorized Version had become effectively unchallenged as the English translation, more people read of the casting out of Demons. The word, Dementia, is not mentioned in any translation of the Jewish or Christian Canon of Scripture of which I know. Yet, the commentary [which is not part of the text] is full of the casting out of demons. One well-known version speaks of ‘Lunatick’, but the unauthorized side notes speak of ‘Healing of the Demoniac son’. [St.Matthew: chapter 17: verse 15] Dementia was an acceptable Value in the 18th Century, especially to members of some Christian Churches.
As more people began to take Latin at school, Dementia became less popular, as more and more people knew it meant madness. As the word Dementia was dropped, the search for a new Value or Label began.
That search is underway. I predict that the person, who produces the most acceptable word for dementia, will keep a funding body happy. MCI is more acceptable as ‘Mild, Medium and High Cognitive Impairment’. That sounds better, but is it bad enough to raise funds!
Cognitive Stimulation Therapy would be good for classes. C.I.C. has been mentioned to me for Cognitive Impairment Cafe or Classes.
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I’ve no problem with the word dementia, the problem is the way people without dementia treat us…
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My wife has been diagnosed with Lewy body dementia. We can no longer go for
Our long walks. Nor can we go out to restaurants or join family and friends for dinner. My wife has lost control of her behaviour as well as her physical operations. How do you suggest a caregiver manage this person given her
Resentmentand aggression towards anyone attempting to correct her.
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It sounds like you might be better supported with some professional help… I can offer my sympathy for you both as it’s clearly difficult, but don’t have solutions for you here. It might be helpful to look up the work of a dementia specialist called Teepa Snow – Mandy of her videos are freely available. Best wishes, Kate
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Thanks for this beautiful piece. It’s very enlightening. We need to care for them and we need to love them more and more.
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Love, kindness, and compassion… and friendship. All very important xx
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The Fronto-temporal (dementia) has now been re-named Fronto-temporal degeneration: still pretty negative. What annoys me is the prevalence of “dementia” as a title for particularly unpleasant fictional book series. A|so a comic photo website.
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Darling you are so far from mindless, mad or less-than! Agree wholeheartedly that the public needs to be reeducated about dementia so that the current cruelties perpetrated on people with dementia disappear and are replaced by enlightenment, insight and RESPECT.
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Dementia and mental illness are both lacking respect in our society… we are such a long way from enlightenment. In the same way success is measured by money and assets!!!
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I think the phrase “human beings coping with cognitive losses” is a brilliant idea and a good first step in combating the misconceptions/perceptions of “dementia”.
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There are ‘talks’ happening in Australia to redefine dementia, and call it mild – medium – high cognitive impairment. The term MCI is already used.
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…I like it and so relevant to A/D as it is seen today, a re-education process needs to be put in place on a world wide scale, to completely change people’s perceptions that this is just a normal aging process, and not an looming epidemic of catastrophic proportions….
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