Talking about dementia.

  Blackhat 17:49 16 Nov 2011

Can anyone clarify something for me please; I have been trying to confirm something told to me recently by trawling Dementia and Alzheimer’s disease web sites but no joy.

Query, is it a basic rule not to mention the words Dementia or Alzheimer’s in front of a sufferer? I have been told this by a carer for a member of my family who says it is part of certain rules that have been devised by the Alzheimer's society

I cannot find this particular info on their web site.

Reason for asking, my wife was visiting this relative recently and was lambasted for mentioning Dementia during the visit but I would have thought that discussing the issue is part of helping someone cope with it.

  Aitchbee 18:00 16 Nov 2011

I think you have got to be really patient with people who have got these disabilities.My Dad and elderly Auntie,suffered from these afflictions, late in their lives.It's hard to accept it, but it's best not to mention these words, but it's very hard.

  Blackhat 18:04 16 Nov 2011

I am basically asking for confirmation of wether this advice is part of the rules that have been devised by the Alzheimer's society.

  Forum Editor 18:08 16 Nov 2011

Most experts on dementia agree on this subject - they say that it's best to tell a dementia sufferer about his or her diagnosis at an early stage, so he/she can have time to adjust to the fact,and to grieve for themselves.

The grieving process doesn't always follow the same pattern - different people deal with it in different ways - but the important thing is to talk about the illness while the sufferer can still understand what's happening, and what's likely to happen.

That said, I wouldn't recommend that the subject is repeatedly referred to in conversation,once a loved one has privately discussed it with the sufferer. Dementias develop at different rates in different people, so there are no hard and fast rules; the important thing to bear in mind is that a dementia sufferer isn't able to do anything about the illness, and great sensitivity is called for. If in doubt, don't mention the word.

  Forum Editor 19:17 16 Nov 2011


I don't think there is such a thing as an 'official' view - each case is dealt with as diagnosticians, patients and loved ones see fit; after all, nobody knows the person better than close family members and/or friends.

People will often signal the amount of information they want when you begin to tell them about a diagnosis, and in general they seem to retain the amount of information they can deal with. Diagnosis disclosure is about listening, looking and helping that person deal effectively with the information you are telling them. It can be almost as distressing to be the person imparting the information as it is for the recipient, especially when it involves one of a couple of people who have lived together for many years. My wife's mother suffered from a mild dementia, but she died from other causes before it had time to really get a grip.

The fact is, the incidence of dementia in the UK is rising, and it will get worse as the population ages. One out of every three people over the age of 65 will die with one form of dementia or another, and there are currently over 820,000 sufferers - a new case is diagnosed every 3.2 minutes. Dementia costs the UK economy approximately £23 billion a year - that's double the cost of cancer, and three times that of heart disease.

  Forum Editor 19:25 16 Nov 2011

fourm member

Well put.

My father lost almost all his sight in the last few years of his life, and I vividly remember taking him to see a consultant eye specialist to see if anything could be done. We had a private consultation at her home,and after the examination she turned to me and started discussing 'father' with me as if he wasn't there.

It was your 'does he take sugar?' moment, and he reacted immediately, saying 'I may be going blind, but I'm not losing my mind - please talk to me'. I'm sure that the same thing applies in the early stages of dementia, and I'm equally sure that most people would prefer not to have judgements made for them - they would like to know what's wrong, and what the future might hold. I know I would.

  Aitchbee 19:37 16 Nov 2011

Everyone who has contributed to this post, obviously, has had moving experiences of these devastating diseases.

I would, suggest, that a lot of the hospital staff in old peoples' homes and hospitals, AKA GERIATRIC units, are unable to 'stimulate' the unwell people', because of MONEY restrictions..and bad work regimes.

  Blackhat 20:35 16 Nov 2011

Thanks for your responses, mostly what I would have expected to hear but I am being pedantic about rules that have been devised by the Alzheimer's society, for a good reason.

As with a lot of threads there is more background than initially given.

This carer (husband) is well known to the family as an extreme control freak, to the extent that his children disowned him as young as they could due to both physical and mental abuse during childhood. It has also been mentioned by other family members that he is exaggerating her illness in order to make himself out as the ‘great carer’ and taking control by laying down rules about how people behave around her.

I know he has the right to say what he thinks best about the situation but he is emailing out rules to family with statements of fact that cannot be substantiated.

He has commented in emails to my wife about her behavior during the visit that are false, I was present at the time.

If anyone can shed any light on actual rules that have been devised by the Alzheimer's society I would be most grateful.

  Aitchbee 21:01 16 Nov 2011

I don't think there is a clear solution...try to get through it and keep your options open, day by day.

  Forum Editor 23:59 16 Nov 2011

To get to your central point....

"is it a basic rule not to mention the words Dementia or Alzheimer’s in front of a sufferer?"

No, it isn't, and - as has already been pointed out - the Alzheimer's society is in no position to make rules in any case. That aside,there would seem to me to be little point in using the word 'alzheimer's' in conversation with a sufferer, unless he or she did so, and unless you were happy that he or she fully understood the term.

It's important to get the words right as well. Dementia has several causes, and one of them is alzheimer's disease. A person with dementia will not necessarily have alzheimer's, although it is the commonest cause of the onset of dementia.

My personal advice - and I stress that I'm not an expert on dementia - is that you should think carefully here. There is quite obviously a lack of rapport between you and the carer you mention,and that isn't going to help matters. He is your relative's husband however, and as such he no doubt feels that he has the right to lay down some ground rules as far as his wife's welfare is concerned. If her dementia has advanced to the stage where she is unable to deal with life on a daily basis without someone taking responsibility for what goes on around her this man is going to call the shots, and if he doesn't want anyone to say the alzheimer's word to his wife I think that you have little option but to respect his wishes.

I doubt that saying the word is going to help your relative to come to terms with her illness in any case. There's no cure for alzheimers, and it will progressively get worse. There are drugs that can help with the symptoms, but the effects tend to wear off over time, and at the moment there's nothing that can prevent the disease from progressing.

  mole44 05:57 17 Nov 2011

My wife has dementia,as FE says eveyones needs are individual,as a carer you have to learn to relax with the situation hard as it is. accept the way things are going and be oh so very patient with the person who has the dementia,of the many things i've learned not to put my wife in cotton wool,i get her to help me out that way she feels usefull. If anyones interested the best book i have read about dementia was by Graham Stokes £9.99 from amazon called "And Still the Music Plays: Stories of People with Demetia". If you read it you'll laugh,cry, and be uplifted.

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