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Kevin Quaid, Vice-Chairperson of the EWGPWD, writes about his book “Lewy Body Dementia Survival and Me”

Monday 25 January 2021

It’s a very broad statement “Living with dementia” it can refer to so many people, the person who has dementia, the carer and indeed the entire family and close friends of the person diagnosed with dementia. So, what is it like to live with dementia? Well, the short answer is that it’s not nice, because dementia, in all its forms, is both progressive and incurable and that should be enough to discourage anybody and to make you feel that it is the end; but this is not necessarily so. For a lot of people, it can be a new beginning and a completely new path in life, maybe you have had to give up your job or give up driving or give up something that you loved doing, which is often the case.

There are a few things that can be done, however, to make sure you get the very best out of a bad situation and the most important is to get the correct diagnosis of the type of dementia that you have, I think there are around 400 different types, and many times I have heard people say that their doctor has told them that they have “a touch of dementia” or “a sort of dementia”; that, to me, is totally inexcusable. Imagine going to a doctor and being told that you had “a touch of cancer” or that you had “a sort of cancer”! The first question would be: what type of cancer? and all the scans would be done in order to find out the type, so as the right form of treatment could be given for the type of cancer that has been diagnose. The exact same thing should be done with dementia, because the treatment that will work for one type of dementia might not work for another. Just to give you an example: I have Lewy body dementia and I have very little memory problems but my main problems actually occur at night, with nightmares and hallucinations, whereas a person with Alzheimer’s may have memory problems and will need totally different treatment and totally different medication, and that is just comparing two types of dementia, both are called dementia yet their symptoms are miles apart.

Another thing that I can tell you about dementia is that it can be harder on the carer than the person with dementia, because they are the ones that can see the lives of their loved ones change before their very eyes. When I was diagnosed with Lewy body dementia, I wanted to find a new path in life, because I had to give up work and driving, and to my surprise I found that I have a love of writing. I became one of the first people in the world to write a book about Lewy Body Dementia from the patient’s point of view, and I now write a weekly column for a local newspaper. I have also started writing my second book, on how to live life after a horrible diagnosis. I want to show that there is still a life to be lived, and my one piece of advice about living with dementia is: never give up! Keep your brain active and keep on living. If anyone wants a copy of my book it is available on Amazon and Kindle.