Diagnosis: Getting the diagnosis
Carers may have very different feelings about how the news should be imparted when a diagnosis of Alzheimer's disease or another one of the other forms of dementia has been made. Many carers feel sure that it would not be wise to tell their relative the exact nature of the condition for which they have sought help. Their reasoning is benevolent, they do not want to cause distress, feeling that it is better that they (the carer) carry the burden of the knowledge.
Among the carers who feel the person with Alzheimer's should not be told there are those who are afraid of the effect it would have on their relative. As one daughter said,
'We didn't want her to know because she knew at that point what Alzheimer's was, the woman next door to her had had it and she would have been absolutely devastated.'
One husband went so far as to say that he believed that if his wife had been told that she was suffering from Alzheimer's disease she would have asked him to end her life.
Others are more uncertain, feeling that the person with Alzheimer's disease might want to know and might even actually be aware what it was that was wrong but that since it was so difficult to be sure it was better not to tell rather than risk distress. A daughter who loved and respected her mother felt sure that the person she used to be would have preferred to face up to the truth, however bad. Now though she felt uncertain how much of that person was still there and did not feel willing to gamble with the possibility that the knowledge would merely confuse and perplex her.
Another carer suggested that there is no point giving the diagnosis to his partner, that it could cause him distress and as he wouldn't remember what he has been told it will not lessen his general anxiety about what is happening to him.
However, there were carers who had been given the diagnosis together with the person they were caring for and who felt that it had been useful to both of them to hear it this way. One husband who was informed together with his wife of her diagnosis became convinced this had been the right approach.
For carers what made the greatest difference was the way in which they were told. In the worst case a woman was told over the telephone that her husband was suffering from fronto-temporal dementia. Other carers complained that at the time they were informed of the diagnosis no effort was made to indicate what was likely to happen in the future nor were they given any help or advice on the problems they were going to have to face as carers.
Fortunately, most carers did not feel badly about the way the diagnosis had been communicated. One carer described both helpful and unhelpful approaches It may be the case that once the diagnosis of Alzheimer's disease has been made there is no longer any reason to attend a specialist department so that the time when the diagnosis is given may be the last opportunity for the carer to receive information from a consultant specialising in dementia. For this reason explanations and advice given at this time are particularly valuable. One carer who had been denied information at first because she was no longer living with her husband describes her relief at being given good advice as well as a diagnosis.
Carers might like to be told at the same time as they are given the diagnosis, how the illness will progress. One carer describes how it was only after witnessing the changes which had occurred in his wife over the years that he was able to understand why this would not have been not possible to predict at the time when the dementia was first diagnosed.
For information about what to do after a diagnosis see the Alzheimer’s Society Website.
Last reviewed October 2010.
Last updated October 2010.
