Getting the diagnosis
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. Many carers 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.
- Age at interview:
- Age at diagnosis:
- Carer is married with her own family (2 children). She shared decision making with her brother and sister for her widowed mother who was diagnosed in 1998 / 1999.
Do you think a person with dementia should be told the diagnosis?
If they wish to be. And, but it's not always clear that somebody does or does not wish to be. In my case, if it was me and if it was now, yes, I would want to be told because although I would be scared witless actually, at the whole idea that I was going down that particular slide, I feel that there is some provision that I could start to make and could prepare members of the family for what was going to happen.
In my mother's case I tried to ascertain whether she wanted to know. My view was that she possibly didn't but her, her previous, my previous experience of dealing with her was that she dealt better when she knew what was going on than when she didn't. She didn't like thinking things were going wrong and not knowing what it was, whether that was a social thing or medical thing. If she felt unwell she liked to have a name put on it and then she could deal with it and take the medicine, or know that there was no medicine.
But by the time we got a diagnosis I was also aware that she was quite frightened by what was happening to her. She would sometimes be quite up front and say 'I don't know what's happening to me.' ' I can't seem to remember anything.' 'I'm really getting worried.' 'I don't know what's happening to me.' And she couldn't elaborate upon it, she wouldn't or couldn't tell me what it was.
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.
- Carer is devoted husband who has so far managed to care for his wife at home with respite care every 8 weeks. They have two children. She was diagnosed in 2000.
What I observed while we were waiting to be seen was, people going in and out, husbands, wives, family members going in individually, obviously to be, to discuss things with, the professionals. And I imagined quite incorrectly that what was happening was that they were being given information or a diagnosis separately from the, from the patients, but that turned out to be incorrect.
But I suppose the, second, reason was I suppose I thought again incorrectly perhaps that consultants would be reluctant to, give a completely honest diagnosis when you're dealing with an illness which is, which is pretty distressing to contemplate, where there is no apparent, treatment or cure for it. And the long term prognosis is a pretty grim one and I just felt that maybe they wouldn't want to do that quite directly and openly, but that didn't prove to be the case.
And then when we eventually went in it, was, to see the consultant, it was just the fact that without any preliminaries, he simply came straight out with the diagnosis, not wrapping it up in any way at all, and causing us both, quite naturally, considerable distress. I understand now I think why he was doing that, but it was quite a shock at the time.
Yes. Why do you think...?
Oh, I think that, if you're less than honest, if the patient is not made aware of the nature of their illness then it simply cuts you off from a great deal of the, support and advice that you can get. I mean not least, it makes the future dialogue between the consultant and you and the patient, a less than honest, and therefore a less than helpful, dialogue.
And I just think that as far as we're concerned, everything that has flowed from that moment in terms of, medical treatment support for both myself and [my wife], has stemmed from the honesty and the directness of that first diagnosis. So I'm, now absolutely convinced that in almost any case that I can think of you really should be as honest as you can. And then you come to terms with that, and I believe most people will find a way to come to terms with it, and then you can kind of move forward in terms of, leading your life as naturally as you, as you can.
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.
- Age at interview:
- Age at diagnosis:
- Carer who had been a teacher looks after her partner, a former policeman, who has Pick's dementia at home. Diagnosed in 2000. Between them they have 3 children.
If I could send all professionals along to the former psychiatrist that I had I think they would get it right. She was the first one who saw [my partner], was the psychiatrist, she came here to see him because he wouldn't go to the doctor. She was kind, she was concerned, she was informative. She told me what was going on and what needed doing, she didn't talk down to us at all. She never made you feel that you were wasting her time.
I got the diagnosis from her a few weeks later. Again she was extremely kind, very concerned, didn't try to blind me with science, just gave me the facts which I wrote down because I knew I wouldn't remember them. Said what they'd done and what they'd found and then was very sympathetic and just talked to me gently and that's how it should be.
Now this neuropsychologist was remote in my opinion. Now I know he sees hundreds of people, thousands of people in the course of the year and I know that it's his job, but I think sometimes the human side of people that he's interviewing or people he's dealing with isn't taken into account. This was just another patient, 'Oh no, I don't see relatives until you, unless we make another appointment. Oh I suppose I can fit it in because [your partner] only taken half an hour', because he's so far down the road that he, couldn't do all the tests with him you know. And then when I spoke to him well told you before when I spoke to him what he said to me was completely load of rubbish basically.
A load of rubbish from what I wanted to hear. I wanted to hear how I could help, what I could do. You know I wanted basic down to earth facts about the man that was, who was sitting there and he wasn't listening to what I was saying. He wasn't listening to what I was asking him.
I think the professionals need to understand that for every patient they've got it's a tragedy. It's a terrible tragedy for the people who are caring for that patient and every single person, every single case be it one of twenty in that day is the same for the people who are caring. They need to feel that the consultant is focusing on them for a start off. They are not just another statistic, they are just another statistic but they are a human being as well and if you can impart information, answer questions in a kind, considerate, sensitive manner that makes the patient, makes the carer or the patient feel that they are being focused upon rather than just trying to get rid of you then that would help.
- Age at interview:
- Wife and mother of 3, who separated from her husband during his illness but continued to care for him. she had been a relationship and loss counsellor. Her husband was a retired NHS works officer and hospital engineer.
So I went back to the doctor, we went back to the neurologist and this time I went too. And she trashed me. He, his, [my husband's] father had just died and I said he'd behaved inappropriately. 'People, all sorts of, no behaviour is inappropriate after a death.' And I really felt swooping round the green outside the house where he was pretending to be an aeroplane when he'd just been told his father was dead, was inappropriate. And I said the neighbours were beginning to comment and show concern. And she said 'Just because your neighbours think he's got Alzheimer's doesn't mean he has.'
And I said I wanted a second opinion. And she was very angry and she said 'You'll get the same message from,' but yes I could see a psychiatrist. And so he saw a psychiatrist who said to me he thought the problem was neurological.
And I read the Alzheimer's News and by chance there was an article about [a] clinic in [place]. And I phoned him and said 'Can I bring [my husband]?' And he said 'Yes,' and told me how to do it through the NHS and my doctor cooperated. And I've told that story in detail because I consider that was the first unethical thing that was done in that neurologist knew he had Alzheimer's, knew he had a dementia because when she wrote to [the professor] she told him so.
And had we been told the truth in the first place things would have worked out very differently. I can't pass a comment on whether it would have been better or worse but [he] certainly would have been here and we would have followed a much more conventional path.
They were marvellous to me at the clinic and [the professor] talked to me at length about preserving life or not, quality and quantity of life. And essentially said 'Let him take all the risks he wants to. If he's knocked down by a bus what does he lose? Just years of gathering dementia, so let him do as much as he wants to do.' And I said 'I have thoughts about things that coroners sometimes say.' And he said 'If it ever came to that I would support you.'
And so I allowed and encouraged [him] to ride a bicycle for as long as was possible and I kept him out of full time care for as long as was possible. Because he was a very proud and very independent man and I felt that was what he, what he would want.
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.
- Age at interview:
- Age at diagnosis:
- Carer is a husband in his 50's looking after his wife with Picks disease. They have three children.
So I think that relative to stages it's very difficult if not impossible to say that during the first year this happened; during the next year or eighteen months that happened and to actually put the changes that occur into a time scale, which is drastically what I tried to do and wanted to do with the consultant early on. I now fully understand why he couldn't give me much indication other than tell me the likely overall happenings that would occur without a time scale.
I don't know if there can be, I suppose there can be a totally worse next stage which some of the people in the nursing home are, probably in which is total non-understanding of anything or of anybody, not taking any notice of anything or anybody. Perhaps just walking about totally aimlessly and not having any indication at all of any of the - I'm not sure what word I'm looking for - faculties of life, what life is or any of the things that we take for granted' understanding, speech, recognition, acceptance, accepting, giving, all those things that we take for granted and eventually go.
So I think that if I sat down I could probably pinpoint certain changes within a rough time scale or a time span that it's changed over. That would be for [my wife] but that wouldn't necessarily be for any other person that's suffering with. with Alzheimer's.
I think perhaps some of the changes would be identical like the loss of speech, like the loss of understanding, language, like the lack of, loss of, of becoming incontinent. I think they would be applicable to everybody but within there I think whether a person becomes aggressive or non-aggressive I don't think anybody can really predict those changes, those happenings that will occur.
So from my own experience I think I would summarise the question by saying there are distinct changes that occur within time spans but those changes that occur and the time span, the changes that occur within a time span could differ from one person to another who is actually suffering from, from Alzheimer's. And I, there might be a rough overall pattern of the main changes that I mentioned, like loss of speech, loss of understanding of words, lack of communication, incontinence, we might be able to categorise those as specific thing but I think the behavioural things that happen might vary from one person to another.
Last reviewed March 2015.
Last updated March 2015.