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.

  userious? 20:43 16 Nov 2011

You treat them like you treat any other adult person, with respect and dignity.

  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.

  bjh 21:03 16 Nov 2011

There are no rules. That's why (and I think the F.E. missed it) I put "official" in quotation marks. The Alzheimer's Society is just one of many authorities, and its opinion is not, in any sense "official". Best advice for your relative will come from her GP,and from any consultant(s) she has seen. Each case - like the patient - is individual, and no central organisation has either the authority or knowledge to make any kind of rule.

Her GP may well not speak to you in detail on a patient, but may well be willing to have an informal chat. There's no reason why you shouldn't ask for a confidential chat.

Does the carer have any power of attorney for his wife? He may well have the right to say what he thinks is best... but I am not at all sure he has the right to state what actually happens. As my case is mother/son, the legalities are probably different, but I need a power of attorney to run my mother's affairs.

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