Planning a Book

ESawyer

New member
Apr 18, 2018
4
Hello everyone,

First of all, I want to apologise if this is the wrong forum for me to be in. I am new to this website and not entirely sure how to work my way around it. So if you think there is a forum more suited for me, please direct me in that direction. Thank-you.

Assuming I'm in the right place, however, I would like to ask a few questions and hope someone could give me answer.

I'm currently planning a book in which one of the characters suffers from dementia and I'm quite worried as to how I will present this character. The last thing I want to do is romanticise what dementia is actuall like and insult possible readers.

If any of you have any helpful advice for me, it would be much appreciated! Thank-you.
 

Beate

Registered User
May 21, 2014
11,835
London
Start by reading the threads and factsheets. You'll soon realise how unromantic dementia is. But you'll hopefully also realise that there is no one way to portray it as everyone who lives with dementia is completely different, as there are different forms of dementia and a lot of different symptoms, not all of which are displayed by everyone.
 

Selinacroft

Registered User
Oct 10, 2015
936
Please don't use the old cliche about bad memory and repeating things. I cared for Dad and this was such a tiny part of the whole disease and the least important and the esiest to dseal with. (apologies for those caring for people where this is a major issue!)
 

ESawyer

New member
Apr 18, 2018
4
Start by reading the threads and factsheets. You'll soon realise how unromantic dementia is. But you'll hopefully also realise that there is no one way to portray it as everyone who lives with dementia is completely different, as there are different forms of dementia and a lot of different symptoms, not all of which are displayed by everyone.
Thank-you! This is very helpful. Especially your last point about how everyone is different!
 

ESawyer

New member
Apr 18, 2018
4
Please don't use the old cliche about bad memory and repeating things. I cared for Dad and this was such a tiny part of the whole disease and the least important and the esiest to dseal with. (apologies for those caring for people where this is a major issue!)
Thank you! This has been very helpful. Especially your last point about bad memory and repeating things, I must admit that this is what first sprung to mind when I first thought this character up. My Grandad is currently showing early signs of dementia so he is the only person I know who I can base this character off and he is repeating things and has bad memory.
 

Beate

Registered User
May 21, 2014
11,835
London
Thank you! This has been very helpful. Especially your last point about bad memory and repeating things, I must admit that this is what first sprung to mind when I first thought this character up. My Grandad is currently showing early signs of dementia so he is the only person I know who I can base this character off and he is repeating things and has bad memory.
Sure he does. But there is a lot more to dementia than that. And people in early stages can appear almost normal. No one ever portrays people in the late stages because that's too disturbing.
 
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AL60

Registered User
Oct 14, 2016
506
Cheshire
Hi. If only dementia was just about memory and repetition, i could cope, it's, for me at any rate, like living with a stranger, not a very nice one either for a lot of the time. It seems like the person I've known for the last forty and then some years has left and definitely not coming back any day soon. :(Al.
 

Beate

Registered User
May 21, 2014
11,835
London

Selinacroft

Registered User
Oct 10, 2015
936
What other things then besides memory and repetition, what were my own experiences with dad?
Starting with Apathy, lack of empathy and interest in anyone else, shrinking world and becoming centre of universe, lack of understanding things , financial, implications, impact on other people, unreasonableness.
Incapable of operating anything with buttons on it, unable to understand concept of time of day, being awake all night, sleeping all the time , loss of coordination, neglect of personal hygiene, unable to make cup of tea, make bed and basic things,
Later on , calling people long dead, forgetting the last 60 years and not knowing where they live even though they've been there last 60 years, loosing bladder control, double incontinence, , criticising everything and Moaning about everything, making unreasonable demands, refusing help and refusing medical input, falling over, once or twice then routinely and then daily until confined to bed at end of life.
 

Malalie

Registered User
Sep 1, 2016
306
I'm not sure going to a home would help really - once it has got to that stage, anything goes. The most abnormal behaviour becomes 'normal' there because it has to.

The juxtaposition of living with a person with dementia whilst trying to carry on normal social activities and relationships is more interesting and challenging.

The "Hostess Mode" as we call it here is fascinating......one can live with a person with dementia, and can attempt to cope with the most appalling behaviour, delusions, aggression etc, etc yet take them out for lunch with friends, or visit the Doctor and they can suddenly become just about normal. Return home, all hell is let loose again, and one knows that the people that they have been with for lunch or whatever are thinking that the carer is "making a fuss about nothing", "they seem pretty normal to me - just a bit repetitive...." It is most irritating to say the least but happens all the time.

Good Luck with your book, and if it can make people more aware about what dementia is without being a really depressing read , all the better.
 

pipd

Registered User
Apr 12, 2015
78
Leigh on Sea Essex
It's about time that dementia was portrayed in a more transparent and honest way. I've always become so angry when I've watched TV programmes about it and it is made to look like a nice clean and jolly disease where memory loss seems to be the only symptom looked at. Dementia is hideous, frightening, dirty, smelly, and many more things on top. Please write your book to show how it really is, people need educating and things need to change to bring it to the attention of the masses. Good luck.