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.
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!