Getting the diagnosis of dementia

Carers may have very different feelings about how to break the news when a diagnosis of Alzheimer’s disease or another type of dementia has been made. Some carers we talked with felt that they shouldn’t tell their relative what they have been diagnosed with. Their reasoning is that they don’t want to cause distress, feeling that it is better that they (the carer) carry the burden of the knowledge. 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 were more uncertain, feeling that the person with Alzheimer’s disease might want to know and might already know about it. However, they felt it was difficult to be sure and it was better not to tell rather than risk upsetting them. 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 didn’t feel willing to gamble with the possibility that the knowledge would merely confuse and perplex her.

Suspects that her mother has some idea what is wrong but is unsure that she wants it to be confirmed.

Age at interview 59

Gender Female

Age at diagnosis 82

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Another carer suggested that there was no point giving the diagnosis to his partner, that it could cause him distress and he wouldn’t remember what he has been told so it wouldn’t 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 for 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.

The specialist informed both him and his wife of her diagnosis. Over time he came to believe this had been appropriate.

Gender Male

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What made the greatest difference for carers 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 didn’t 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 dementia 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 clinician 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.

Describes the contrast between a sensitive and an insensitive approach to giving a diagnosis.

Age at interview 62

Gender Female

Age at diagnosis 61

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Describes the difficulty persuading doctors to give her a diagnosis and the relief when someone levelled with her.

Age at interview 63

Gender Female

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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.

Recognises why a consultant is unable to predict how the dementia will progress.

Age at interview 57

Gender Male

Age at diagnosis 56

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Last reviewed November 2023.

Last updated January 2024.

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