I can and will speak out

 Carers in care homes and hospitals should recognize communication challenges of people with dementia

The idea: Ken describes his own personal challenges with speaking and typing, in the hope that others (particularly hospital and care home staff) will recognize these challenges and take them into account when communicating with people with dementia.

 

Hello. My name is Ken Clasper and I have early onset Lewy Body Dementia.

 

I have made quite a few mistakes recently by using the wrong words, and it caused some distress both to my wife and to myself when I realised what had happened. I know that words don't come out the way they used to, and whether the brain is going too fast for me, or I am going too fast for my brain, I really don't know. When I am using the keyboard, I try to type everything out before I forget what I am trying to say, so perhaps it's just that the brain has slowed down so much that it's difficult to come to terms with.

The other day I did a presentation to some student nurses about dementia. I made a mistake and used the wrong word on one occasion, something that my wife pointed out later. Although it was not rude or nasty, it could have been picked up the wrong way by some, and I was upset about it. Even though I make a practice of typing the speech out in size 14 letters on the computer, during the speech I don't always see all the words that are in front of me.

When I get an e-mail, I don't always understand what it means until I have read it a few times. The problem is that each time I read something, I see something different. It gets distressing when I don't understand something or totally misread it, and it's only when my wife reads the same thing that I realise I have picked it up the wrong way.

There are times like this when I really hate this illness. It destroys your ability to control your life, and while assistive technology helps to write things on the computer, it does not help with speech or trying to get the correct words out.

When I look back to my days at school and at college, we were always taught how to speak clearly and use the correct words, and when I was at work as an engineer, I could write reports in half an hour to an hour without thinking. Now that has all changed.

Simple things like typing have become a nightmare. Although I have always been right-handed, I now find that my left hand is faster than my right hand! I end up sitting on one hand to get the spelling right. Otherwise the letters of the word are all mixed up, and although the letters of the word are all there they are all jumbled up, which looks more like a code than a letter or e-mail.

When this first happened it was very distressing and hard to cope with, but by using voice-activated software like the Dragon I have been able to get around some of the problems and life has become easier.

It is times like this when I realise how easy it is for people with dementia to be misunderstood by staff in hospitals and care homes, and then be treated with a lack of respect because the staff thought they were rude. The staff don't realize that the person with dementia just made a simple mistake and used the wrong word or words--something which is taken for granted by those who have normal brains, and yet those with this illness are treated like idiots.

Through my blog (ken-kenc.blogspot.com) I can explain my life, my problems with dementia and my efforts to get around the problems. Although writing my blog can be painful at times, it helps me to understand that there are other people out there around the world who are in need of advice, or perhaps need to understand more about the illness, so perhaps by doing this blog, I am not only helping myself but I am helping many others as well.

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ken-kenc.blogspot.com/Published on 25 April 2012

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Facebook page for people with dementia

Idea: Join Ken's Facebook group called Living Well With Dementia. The group is for people with dementia to share problems and ideas, to raise awareness and erase the stigma.

Hello. My name is Ken Clasper and I have early onset Lewy Body Dementia.I have ave set up a new face book page called Living Well with Dementia. This is for people who have dementia, and I hope to encourage new people to face book to join us, in the hope that we can get rid of the stigma which is attached to this illness and raise awareness. I also want it to be a place where people with the illness can discuss there problems and ideas, so that we may help others who follow in the future.

The page is at http://www.facebook.com/groups/LivingwellwithDementia/. It's an open group for anyone to join.

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www.ken-kenc.blogspot.comPublished on 15 January 2012